Recovery After Stroke

Recovery After Stroke

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Recovery After Stroke episodes

  • Neck Cracking And Stroke – Mac & Colleen Brand

    A stroke from cracking his neck to relieve the tension was the last thing Mac expected. At 24 years old and a trained EMT he knew immediately that he was experiencing a stroke.

    Instagrams:

    Mac
    Colleen

    Highlights:

    01:57 Introduction

    02:57 Neck Cracking And Stroke
    09:11 Misdiagnosis
    17:15 Initial Rehabilitation
    21:35 Parent Concerns
    25:21 Realizing The Effects of Stroke
    33:01 Losing The Ability
    42:29 Seven Stages of Grief
    54:16 What Caregivers Have To Deal With
    1:01:14 Kintsugi
    1:09:59 The Intubated State

    Transcription:

    Bill Gasiamis 0:00

    Hey, Mack, you know, mom just said that you didn’t know that you couldn’t walk? When you found out what was that, like?

    Mac Brand 0:08

    That was such a harsh learning experience because it wasn’t so much that I didn’t really think about, like, I couldn’t walk, it was more like I remember how easy it was to kind of even move or do stuff.

    Mac Brand 0:21

    But then I’d be like, a lot of confusion as to essentially why things were so difficult. It was all learning. And just, I mean, like, I was in a fairly delusional state too where it was just like I kind of was expecting that I would just kind of get to leave the hospital too.

    Mac Brand 0:39

    Like, once I got the tube out and everything, I remember being ecstatic about that, because I could finally talk I didn’t realize how much I wanted to talk after like a week or two. And everything I was saying was delusional and didn’t make sense when I was just excited about it.

    Colleen Brand 0:57

    This is the recovery after stroke podcast. With Bill Gasiamis, helping you navigate recovery after stroke.

    Bill Gasiamis 1:11

    Hello, and welcome to another episode of the recovery after stroke podcast. Recently, Spotify released a new feature which allows you to narrate your favorite show, in the same way that the apple podcast app allows it.

    Bill Gasiamis 1:26

    If you think the show deserves it, I’d love it. If you left us a five-star review. This will help the show rank better on search engines and help newly diagnosed stroke survivors find the show better.

    Bill Gasiamis 1:37

    And it could make a massive difference in their recovery. So go to your favorite podcast app, whether it’s Spotify, Apple, whatever it is, and share what the podcast means for you. It really will make a huge difference to how people find the podcast and how they have a better stroke recovery.

    Introduction


    Bill Gasiamis 1:57
    Now, this is episode 190. And my guests today are Mac and Colleen brand who I reached out to after seeing a photo that Colleen posted of the scar on the back of Mac’s head, which she upgraded in the tradition of the ancient Japanese art of Kintsugi by painting a gold to enhance it and embrace its imperfections by highlighting it.

    Bill Gasiamis 2:24

    Now Mac was an EMT age just 24 when he had an ischemic stroke that he caused by cracking his neck to relieve tension. Colleen and Mac brand. Welcome to the podcast.

    Colleen Brand 2:37

    Thank you.

    Bill Gasiamis 2:40

    Guys, thanks for reaching out and connecting. I have done a little bit of pre-reading of Mac stuff. And I’ve seen the video the unfixed media video, tell me Mac a little bit about what happened to you.

    Neck Cracking And Stroke


    Mac Brand 2:57
    So, I think it was it was a long time ago. Well, not that long ago, it was 2018. I remember I got back from really, I think I got back just from vacation. And I was sitting at home one day and I cracked my neck which I guess which ended up causing me to have a stroke or something.

    Mac Brand 3:27

    I mean, not something. It caused me to have a stroke. So then I walked to the hospital and I woke up like, you know, a week or two later and suffering the effects of the stroke, which was a cerebral brainstem stroke.

    Mac Brand 3:50

    I when I first woke up, I had, you know, partial paralysis on my left side. Now it’s more just kind of incoordination and stuff like that. Yeah, so that’s the like real summary version of it.

    Mac Brand 4:07

    Which was just from manipulating my neck, I was able to, I guess shed the inner lining of some sort of veins in your vertebrae, and I’m not sure shoot it up to my brain. It was a kind of experience.

    Bill Gasiamis 4:29

    I’m curious. You seem not to be completely aware of what happened is that because of a memory issue, or you haven’t really been told or haven’t paid attention?

    Mac Brand 4:39

    So I know it’s mostly a memory issue right now just because I’ve been told over and over again, honestly, what it is but what happened but it’s a it is more of a memory issue. It’s kind of one of those Yeah, that’s one of the things

    Bill Gasiamis 5:03

    Colleen, give us your version of that story.

    Colleen Brand 5:06

    Yeah, it’s interesting listening to Mac because I don’t know whether his memory comes in ebbs and flows. But anyway, he had just come back from being in San Francisco visiting us where we live in San Francisco, he had just gotten back and to Colorado.

    Colleen Brand 5:33

    And he had cracked his neck like he does, he does that left-right motion and cracks his neck when he has a headache and relieve some pressure. And that caused a blood clot, that action caused a blood clot, which caused him to have the stroke symptoms.

    Colleen Brand 5:56

    And I wouldn’t have recognized that but because Mac had EMT training. He, knew stroke symptoms. So he identified it himself really quickly. And he knew that it was going he had about 15 minutes before he’s going to collapse.

    Colleen Brand 6:19

    But he didn’t call 911. I think his logic was already going because he was so dizzy. He went, Okay, I’m a couple blocks from the small community hospital, I’m gonna walk there.

    Colleen Brand 6:33

    And he was starting to walk there. And that’s when he collapsed. But he knew enough he was able to do 911 before he hit the pavement, and then that’s where he was found. And then that’s where we went through the sequence of Boy, I wish I knew then what I know now about strokes. Because boy, would we have handled it differently.

    Bill Gasiamis 7:08

    That’s a very common story. everybody’s the same on the same. How do you suppose to know about strokes? If you’re not familiar with somebody who’s had a stroke, and you’re really aware of what happened and how it went down?

    Bill Gasiamis 7:22

    I mean, you just won’t know. How are you going to know about anything broken toes, damaged knees, you’re not going to know unless it happens to you. And that’s the scary thing. But was Mac alone at the time?

    Colleen Brand 7:40

    Mac was by himself.

    Mac Brand 7:41

    I was alone. And so I remember the term it was I had a vertebral artery dissection. That’s just what happened to me, which is kind of like a walking urban legend thing to where it’s like you cracked your neck and you get that?

    Mac Brand 7:59

    Yeah, I was alone. At the time. I didn’t really recognize that was a stroke until I started feeling paralysis actually, when I was walking there to the hospital it was only about three or four blocks away.

    Mac Brand 8:10

    And then when the ambulance came, they started running stroke protocols on me and I was like, that’s not right. I’m 24 and I’m just dizzy. You know, it was one of those things where it just kind of kept getting, it started out as just being dizzy.

    Mac Brand 8:27

    It felt like I described it as like, you know, when you get too drunk and you’re just kind of like spinning so I thought originally I had food poisoning because it’s like, what do you mean I’m having a stroke?

    Mac Brand 8:42

    But, you know, I eventually learned, waking up I was I had gone to the hospital when I had appendicitis I literally walked in there like pop my appendix out so I kind of figured do the same deal, I woke up a couple of weeks later and was not the same deal at all you know?

    Bill Gasiamis 9:02

    Yeah. And in those two weeks Colleen what’s the family doing because Max was out of it. What are you guys trying to do?

    Colleen Brand 9:11

    So the smaller hospital really botched things up. They actually did not treat him for any stroke protocol. So that was a huge delay. These are the delays that it’s so great to get people that everyone should have better stroke information so that they’re empowered understand how critical time.

    Misdiagnosis of Mac Brand

    Colleen Brand 9:11

    Again we don’t know this walk until we walk it right? And so you don’t realize how critical that first 72 ours is. And so they actually dismiss Mac, because he had smoked some weed before he had cracked his neck.

    Colleen Brand 10:13

    And so they dismissed him as just being a young stoned man. And so when he was walking out of the hospital, he collapsed in the hospital. And that’s when they brought him back. But they still didn’t follow any stroke protocol.

    Colleen Brand 10:32

    And he’s by himself with no one to advocate for him at that time, there was a tremendous amount of time lost, then they finally got him to the next level Hospital, which didn’t have any type of a stroke department or neurology department that they brought in a neurologist who was a very unqualified individual.

    Colleen Brand 11:06

    And but he really wanted to hang on to Mack, he didn’t want to take him over to the better hospital at Ann Schultz, which had a proper neurology department, which is what Mac was needing. And he really wanted, I’m assuming that was for the revenue.

    Colleen Brand 11:23

    He really wanted to, because it wasn’t because of his abilities. So he actually drilled into Max had to try to relieve some pressure. And it was not even in the right spot we found out later. So it was for naught. And so we wasted another night there.

    Colleen Brand 11:44

    And quite honestly, we, at that point, we started to educate ourselves and make phone calls. And we found out about Ann Schultz. And they wouldn’t release him. And so we had to work on it ourselves to demand that he gets released.

    Colleen Brand 12:02

    And Mac went unconscious very, very quickly. And but fortunately, at the very same time, the the helicopter team was landing at the hospital. And honestly, these people were right out of a movie.

    Colleen Brand 12:20

    They’re such heroes in their work. They dismissed that hospital team. Mac was already intubated and passed out at an unconscious at that point. And I watched them literally unplug and redo everything, dismissed those people.

    Colleen Brand 12:38

    And they took him over and got him airlifted to Ann Schultz, which they told us immediately to drive there. And, you know, we signed the paperwork. And as soon as he landed, they had him going into surgery. And they saved his life.

    Bill Gasiamis 12:56

    So they drilled into his head to relieve pressure.

    Colleen Brand 13:02

    Yeah.

    Bill Gasiamis 13:02

    Was there a bleed in the brain?

    Colleen Brand 13:05

    Yeah, we had a brain bleed that wouldn’t stop.

    Bill Gasiamis 13:09

    Okay, so he had a brain bleed and a clot?

    Colleen Brand 13:14

    Yeah.

    Mac Brand 13:14

    Yeah, it wasn’t necessarily a clot. I think I remember them describing that as the inner lining of my artery that essentially was shed when I cracked my neck. And it kind of shed itself so it wasn’t like I had a clot that got dislodged it was actually a part of the artery an interior lining or something.

    Bill Gasiamis 13:42

    But at the same time, there was a bleed Mac? Was there some blood bleeding into the brain?

    Mac Brand 13:48

    Yeah, I believe so. I mean, yeah, at that point, also, like, I remember, I was either unconscious or my brain was swollen. I wasn’t really aware of anything until probably even like a month after, you know.

    Colleen Brand 14:02

    No, he wasn’t I don’t even think that he came out of being in this induced coma state for several weeks. And when he first did like I drew him this picture. I don’t know if you can see it.

    Colleen Brand 14:27

    But basically it was trying to get him to understand do not freak out because you’re intubated. And so we wanted, because I kept thinking about, Oh, my God that has got to be so fearful when you start to become alert from that coma state, and you’re intubated.

    Colleen Brand 14:55

    I can’t even imagine what the panic one would feel. So we were really, really surrounding him and trying to figure out the best way so that we can stay calm when he came to that you are, you’re intubate you can’t speak.

    Colleen Brand 15:17

    You’re not going to breathe on your own. I don’t know what a person is going through when they transition from that point to the other. But that was a huge concern for us. Of how do we keep him from being panicked?

    Bill Gasiamis 15:36

    Mac, do you recall what that was like when you woke up in that state?

    Mac Brand 15:43

    So it’s, yeah, I do actually. Well, like, it’s really interesting, because I didn’t know I was going to wake up in that state. It’s kind of like blinking. And then, you know, one second here, there.

    Mac Brand 15:55

    And also, at the time, you have to remember my left side I had center paralysis, and my left side was paralyzed. But my right side was actually just as strong as it was before. So they had to kind of restrain it, when I was getting up to make sure I couldn’t move around.

    Mac Brand 16:14

    And my brain was still swollen, and when you’re intubated you’re on a lot of like fentanyl and stuff, so I spent, like the first probably week or two fairly delirious under those circumstances.

    Mac Brand 16:28

    And honestly, I kind of remember it, almost humorously, because they’re some of the things they had to put like a pizza, like an oven mitt on my hand to make sure I couldn’t grab stuff with my good hand.

    Mac Brand 16:40

    And because I was essentially like, you know, a toddler almost. You don’t want to grab on the tubing or anything like that. So I had this pizza mitt. And I remember thinking, like, Oh, God, I’m in a Pizza Hut, like, you know, like, just not being able to connect the dots even to what is happening. It’s just, I mean, yeah, I honestly, I look back at it almost humorously, but it was pretty traumatizing for everyone.

    Mac Brand’s Initial Rehabilitation

    Bill Gasiamis 17:16

    Absolutely, I can imagine, man. So when you finally got out of the hospital, I imagine you went to rehabilitation, what did you have to rehabilitate.

    Mac Brand 17:27

    So, I spent one month in inpatient rehab. And then essentially, like, kind of have to test out to make sure you can shower on your own you can do and cook on your own, you’re not going to be a danger.

    Mac Brand 17:40

    So I did that. A lot of my rehabilitation was essentially strength training. Because the left side of my body fatigues twice as fast as the right side. So a lot of times, it’s just things like, it’s a lot of just walking and, you know, getting that muscle memory to kind of work and retrigger and rewiring that neuroplasticity around those damaged parts of your brain.

    Mac Brand 18:10

    So it’s like, you know, you lose parts. But the nice thing about having a stroke when you’re 24 Is that your brain will kind of remap itself around that damaged parts. So it’s like, yeah, I might not be able to open a key with my left hand anymore, or whatever.

    Mac Brand 18:26

    Or hold a spoon with it. But it’s like, I couldn’t really do that with my left hand either way, things like typing. Like, it’s just one of those things where it’s like, yeah, fine motor skills and muscle memory are super important for getting that stuff back and just kind of triggering that neuroplasticity to help rewire your brain around what’s been damaged.

    Bill Gasiamis 18:44

    And you had to learn how to walk again?

    Mac Brand 18:46

    Oh, yeah, I spent a long time learning how to walk. I was, you know, I still have my cane with me for when I get tired. I have a lot of neurological fatigue associated with it. So it’s like, I look really good for probably about 30 minutes, and then I get real limpy or I need my cane.

    Mac Brand 19:07

    So I still get a lot of neurological fatigue. And it’s like, oh, there’s the stroke, you know. So it’s one of those things where it doesn’t really get away for me, while I can kind of like compound the time where I’m, you know, where I’m strong and kind of, you know, mobile and doing my stuff. It’s always kind of one of those things where it’s like you kind of hit a wall at a certain point in the day and it’s like, okay, now I’m, you know, kind of back at it.

    Bill Gasiamis 19:35

    Yeah, we went and saw Batman with my wife last night. And we got the eight o’clock session, not realizing that it’s a three-hour movie. So sitting down in the chair watching that was pretty cool movie but then you get tired and then by 11, 11:30 we had to walk back to the car quite a distance and the left side is numb the knee is not supported 100%.

    Bill Gasiamis 20:07

    The hamstring is feeling a little bit weird. And the quadricep is feeling a little bit weird. And it’s like, okay, I’m really tired. Now I can tell that I’m tired, and I need to go to bed and sleep immediately.

    Bill Gasiamis 20:20

    So I get what you’re saying it does take some time to get beyond the neurological fatigue, where you feel like, I know I’m tired. But I can still sit through the movie, for example. But there was a time where I couldn’t, I would never take an eight o’clock session to go watch a movie. Because I wouldn’t be able to get through it. And then I would feel terrible the next day.

    Mac Brand 20:49

    Yeah, I’m kind of like, right in that space. I feel like I’ve been doing really well with a lot of my mobility exercises, I feel like have been really helpful with just kind of making me not feel like I’m, you know, almost lopsided, or whatever, you know, with my strength. But yeah, sitting through, I noticed my fatigue hits really hard, where I just even paying attention or focus on like, a movie for three hours. Sounds like a task.

    Bill Gasiamis 21:22

    Yeah, yeah. It used to be for me as well does gets better. But I think you’re still in the early days of recovery. You might sound like you’ve been doing it for a while. But stroke recovery takes a long time. And so you’re still in the early days.

    Parent Concerns

    Bill Gasiamis 21:35

    Colleen, what’s it like sitting on the other side, watching your son in hospital, being really unwell, and then not being able to use his left side?

    Colleen Brand 21:49

    In all honesty, because we came so close to losing him. I was so grateful for him being with us. And then that roller coaster of you know, will his brain start bleeding again, because that kept happening.

    Colleen Brand 22:17

    And there were so many times I’ve never prayed so hard in my life. And just every little thing you’re like, just get us there. We didn’t know when they could finally take out the tube. We didn’t know if his chest would collapse. We didn’t know if he was going to be able to breathe on his own.

    Colleen Brand 22:46

    We didn’t know if he was going to be able to swallow. And we didn’t know if he would be able to walk again. You’re there’s so many things you don’t know you really do take every moment of that that you get to go forward, it feels like a miracle.

    Colleen Brand 23:08

    And you’re so grateful. I felt that we had incredible doctors, we had incredible care at Ann Shultz. And we are so thankful that Mac got those breaks to be able to swallow and did not have to go through a tracheotomy.

    Colleen Brand 23:32

    When they finally were able to have him start to even sit up. He didn’t know he couldn’t walk. There was a lot of things that he didn’t know. And it was probably better he didn’t know because it’s just so much you’re going through.

    Colleen Brand 23:59

    But yeah, to not lose him, that he would just have the opportunity to get better, was all the miracle I could ask. And then everything else that we got afterwards was just an absolute gift.

    Intro 24:19

    If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be. You’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse.

    Intro 24:36

    Doctors will explain things that obviously you’ve never had a stroke before. You probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation.

    Intro 24:51

    Stop worrying and head to recoveryafterstroke.com where you can download a guide that will help you it’s called Seven Questions to Ask Your Doctor About Your Stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke.

    Intro 25:07

    They’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery, head to the website. Now, recoveryafterstroke.com and download the guide, it’s free.

    Mac Brand Realizing The Effects of Stroke


    Bill Gasiamis 25:21
    Hey, Mac you know, mom just said, that you didn’t know that you couldn’t walk? When you found out what was that like?

    Mac Brand 25:31

    That was pretty. I mean, like, it was all such a harsh learning experience, because it wasn’t so much that I didn’t really think about, like, I couldn’t walk, it was more like, I remembered how easy it was to kind of even move or do stuff.

    Mac Brand 25:50

    But then I’d be like just a lot of confusion as to essentially why things were so difficult. But yeah, I remember just like, it was all learning. And I mean, like, I was in a fairly delusional state to where it was just like, I kind of was expecting that I would just kind of get to leave the hospital.

    Mac Brand 25:55

    Once I got the tube out and everything I remember being ecstatic about that, because I could finally talk, I didn’t realize how much I wanted to talk after, like a week or two. And everything I was saying was delusional and didn’t make sense when I was just excited about it.

    Mac Brand 26:38

    But I was fully expecting to go home and be like, okay, you know, but then I spent another month in inpatient rehab and stuff like that. And it was a slow, painful process to kind of reassess and be like, okay.

    Mac Brand 26:53

    But it was definitely helpful with me coming to like reality. Just like about what had happened. Because there was a long time where I honestly couldn’t even comprehend it.

    Bill Gasiamis 27:11

    Yeah, yeah. You probably had a couple of reasons why couldn’t comprehend the first you were on medication. Second, you’ve had a stroke. So it’s difficult sometimes to comprehend things.

    Bill Gasiamis 27:23

    And, I remember trying to walk the first time after I had the brain surgery, and I got out of the bed on the left side, and there was a nurse who was going to help me go to the, to the toilet.

    Bill Gasiamis 27:41

    And she said, you know, just step out, place your arm around my shoulder, and I’ll support you, she was half my size, and a bit shorter than me. So I’ve got out, I’ve placed my left leg on the ground. And because my left I couldn’t feel my left leg, it just collapsed.

    Bill Gasiamis 27:58

    So I’m out of brain surgery. Fresh scar on my head, literally just a few hours out of brain surgery. And then I went on my ass on the ground screaming because I fell out of the bed and the nurse wasn’t able to support my weight.

    Bill Gasiamis 28:14

    That’s when I found out I couldn’t walk. And then it was ok getting back into bed and book him into rehabilitation because they hadn’t assessed me yet. They just assumed that I came out, okay, because I moved my toes and moved my fingers and it was pretty rough.

    Bill Gasiamis 28:32

    So I know the feeling. I totally get it. You know mom, he looks pretty cool. He looks okay, he looks pretty normal. Everything’s okay. Is it sometimes difficult to connect the dots that he looks great. But he’s not the same inside like his ability to do the things that he normally did is not there. It’s not the same as it was. Is it hard to connect those dots sometimes do you look at him and go but you look great?

    Colleen Brand 29:12

    I don’t because I stayed with him in the hospital on that journey. So being able to experience it along with him. I knew we protected a lot of information from him. And mom’s know, you know, we know so I know all the differences of Mac before and after.

    Colleen Brand 29:54

    I do like even with his walking now. He has to walk at one pace. And I’m learning things all the time. We were out taking a walk the other day. And he was like, that’s when I found out that, oh, you can only walk at one pace.

    Colleen Brand 30:13

    He told me he can’t go slower, he can’t go faster. Because that’s the rhythm that he has taught himself to move. And so Okay, no problem. Now, I know this piece of information. And so I adjust my behavior accordingly. It’s a lot of eyes and ears, and less mouth.

    Bill Gasiamis 30:40

    Really learning how to interact with him. That’s awesome. I mean, I remember going for a walk with my son in one of the local malls. And he’s just taken off and he’s left me behind.

    Bill Gasiamis 30:51

    And he’s not paying attention to me behind. And I said you gotta come back, and he was like, ah, what happened? I can’t walk that fast anymore. I’m gonna walk slower. But we worked it out. I did get faster with time. Mac, what were you doing as a 24-year-old? What was your daily life like, where you at work?

    Mac Brand 31:14

    I was in my undergraduate, I was working two jobs. You know, I was in a full-time, you know, relationship so I was out in Colorado working on my undergraduate in criminal justice, criminal forensics, and working at a plasma donation center with my day job.

    Mac Brand 31:40

    And then I also did like, P.I work on the side, like kind of as a resume builder, too, which was an interesting gig. So I was working, I was doing a lot, honestly. And then I was probably about like, I would say, a junior year, like kind of in my undergrad.

    Mac Brand 31:40

    So it was about one or two years away. Took me another two years to finish it after the stroke, because I had the stroke actually, during my finals too. I failed my finals, I had like, B’s or something in those classes.

    Mac Brand 32:08

    But because I failed my finals, I had to redo my finals in the hospital. And I was like, I can barely read. So I just kept retaking those classes and just kept retrying. So it kind of spread it out a little bit.

    Mac Brand 32:39

    But I got the undergraduate done, at least I’m working on my Master’s right now, which is really cool. But yeah, it was definitely a big, huge bump in the road. I am stoked, though, that. I mean, if you’re gonna have a stroke, it might as well be at 24 when you’re still on your parents health insurance, you know, so that’s not the worst thing.

    Mac Brand Losing His Abilities


    Colleen Brand 33:01
    I was a miracle. Yeah it was a miracle that we checked that box, it truly was. But MAC’s, a big dude. He’s about six, three. He’s always been naturally strong without ever lifting a weight. It’s just how he was drawn.

    Colleen Brand 33:35

    And so he’s always relied on that physical strength for a lot of work and jobs. And just one of those things, it’s like, it’s what you can do. And that’s gone. And so, that’s another adjustment.

    Colleen Brand 33:56

    It’s fine, you know, you adjust, but it’s just it’s another adjustment. And it’s another frustration for him. You know, when you’re used to having a certain physical ability. And now that one’s off the table too.

    Colleen Brand 34:12

    And as you know, it takes a great deal of effort of daily discipline, it’s a lot of discipline to maintain. What the corrections and the games you’ve been able to have, you have to work hard to maintain that.

    Bill Gasiamis 34:34

    Yeah, yep. It’s a different kind of work and because yeah, MAC one side is going yeah, well, let’s keep doing this. And the other side’s going no, I’ve had enough. And it’s a real mental battle because you actually physically have had enough you actually totally drained on one side.

    Bill Gasiamis 34:55

    But the other side’s quite fine and you got to find the balance right? You can to work out how to continue or why you should not continue, and for me, it was not continue. It’s like stop and rest because you are really tired even though your right side is okay and wants to keep going. That’s not the right thing to do right now the left side is really tired, that means the brain is fatigued. Mac do you relate?

    Mac Brand 35:25

    Yeah definitely, like essentially, almost exactly like, you know, because if I push my fatigue side or any of my fatigue, it’s going to fatigue my brain, which literally just drags everything out and makes it so much harder to recover when I get that, you know, neurological brain fatigue.

    Mac Brand 35:44

    So it’s like, you really do have to rest and listen to that side. It’s a real weird dichotomy, especially because it’s like, my left side is my non-primary side. So you know, because I’m right handed. So it’s weird to listen to the side, I almost never really cared about.

    Colleen Brand 36:04

    Yeah. And Mac was also, you know, far more social. And that also changes after a stroke, which is very difficult, in my opinion, for a very young person, to have these extreme social limitations.

    Colleen Brand 36:25

    At a time in life when you actually are at such a desire to be, you know, out and about and where things are happening. And that’s no longer tolerable or enjoyable.

    Mac Brand 36:44

    Once I kind of was ready to get out and about COVID hit and that was a prime too it was like, literally once I was like, you know, done with my outpatient rehab and was kind of seeing people again, it was like, okay, and now we got the mystery disease. Okay, cool it’s a weird one.

    Bill Gasiamis 37:06

    I remember feeling the same. When COVID hit for me, it was like eight years after the first time I ended up in hospital, it was 8 years. So it still felt like I was in the same kind of fog, as I was back then it used to go, Well, you couldn’t go anywhere, you couldn’t see anybody.

    Bill Gasiamis 37:29

    You couldn’t go and eat out, you couldn’t do anything. It felt exactly like it did when I had the stroke, and was isolated for quite some time and couldn’t get out and about and I needed to go through this thing to recover, etc.

    Bill Gasiamis 37:44

    But then I got annoyed being out and about because the overwhelm from noises from all the things that were happening from sometimes even the the sun and looking at, like there was a lot of overwhelm of my brain. Is that what you also experienced? Did you have that kind of neurological overwhelm? And you couldn’t cope?

    Mac Brand 38:08

    Yeah, I definitely, especially like, before I learned, you know, skills, and learn more about myself, like with my memory and ways to help with just like, essentially, like scheduling and keeping track of things like, I felt overwhelmed.

    Mac Brand 38:30

    All that like, almost all the time, like, you know, I go outside and then I go be overwhelmed. And just by I remember, the snow was a big deal, because I lived in Colorado at the time, too, because I wanted to be close to answering the doctors who perform the surgeries on me.

    Mac Brand 38:47

    But yeah, I remember being like, you know, the snow is so bright and everywhere you look is so bright, and it would be just hard to just sit there and kind of like, look at my own feet and just like be afraid of ice and lurching around is all one of those things that was very overwhelming.

    Colleen Brand 39:03

    Mack wanted to go on what I was calling a memory towards thinking that that was going to be this miracle. As soon as she saw these places from his past, things would click or people.

    Colleen Brand 39:20

    And so we went to Michigan where he had spent a lot of time as a child. We had a summer place up there. And we went up there and it was very disappointing for him because memories were not coming back.

    Colleen Brand 39:39

    And then the same thing in San Francisco, where we had moved when he was 12. He lost his dad passed from a heart attack when he was 12. And so we moved from DC to San Francisco just for a change and so he was hoping that go into these places would spark instantly a memory.

    Colleen Brand 40:03

    And they didn’t and that was something that it took the wind out of his sails a little bit. And it may with other stroke victims as well, where you’re thinking, Oh, when I see these things that were in my past, it will click.

    Colleen Brand 40:22

    And then it doesn’t. And that to me is like another. There’s a lot of things I feel people that have had experienced strokes have to say goodbye to. And I think that’s something that needs to be understood and felt on their journey.

    Bill Gasiamis 40:48

    Yeah, there’s a lot of loss. There’s a lot of grieving. And people struggle with it, because it’s happening at the same time as their recovery. And the recovery is really difficult and really hard. And they are physically exhausted and they’re emotionally exhausted.

    Bill Gasiamis 41:06

    And then they’re grieving this loss of their previous life, or their previous limbs or whatever it is that they’ve lost, and they’re trying to get it back. And it’s really hard. Did you relate to that Mac? Is grief, something that you experienced?

    Mac Brand 41:23

    Oh, yeah, absolutely. I, because I thought it was kind of going to be easy, honestly, like, you know, like, things would kind of click, and I had the story of my life down. But it was one of those things where it was like, I didn’t really have the memories in my head, but it was like, okay, like, this is, this is who I was.

    Mac Brand 41:46

    So I really did have, and you know, I can get back to this. So it was one of those things where it was like, things are going to be different now forever. So when I kind of had to do that I did go through, I approach that as a typical grieving process.

    Mac Brand 42:00

    And so when you lose someone, so I essentially pretend to be, you know, this guy that I knew, and, you know, basically, love that I wanted to be is no longer here. So you kind of have to bury it and be like, Okay, this is new. Now. I’m new, this is fine. So there was a big, coming to terms and it felt like a literal grieving process for bypass.

    Seven Stages of Grief

    Bill Gasiamis 42:29

    Yes the seven stages of grief, are shock and denial. Pain and guilt, anger and bargaining. If I just get this back, you know, it’ll be okay. Depression, any of that stuff? Did you get?

    Mac Brand 42:50

    I definitely went through all like, you know, the whole rounds of it. For sure. Definitely. I know, I experienced generalized depression, especially like one year, and general a lot of generalized anxiety to just kind of being that it was new, but yeah, a lot of depression.

    Mac Brand 43:11

    With it being, you know, essentially, saying goodbye to that person. And the fact that it wasn’t going to be easy, you know, that was a hard thing was things are kind of, you know, when I had my, all my other surgeries, you know, easy, whatever, you know, this was one of the things where I was like, this is never going to be easy, like, you know, ever.

    Bill Gasiamis 43:37

    But what does it taught you about yourself?

    Mac Brand 43:39

    Oh, I mean, it taught me everything. It taught me, you know, essentially, it gave me a really fundamental understanding of life with just that we assign meaning, we create meaning in our life, my ultimate understanding is that life is essentially meaningless.

    Mac Brand 44:05

    Unless if you create it, unless, where you create it, you know, and I just want to kind of, I kind of looked at as just, the only thing I can do is just try to make things better, if not for me than other people, just wherever I can.

    Mac Brand 44:22

    You know, I wanted to just perceive the world as what I can put into it, and not what I want to put into it, but literally just measuring physical positive impacts that I can do to just make things better, I guess.

    Bill Gasiamis 44:39

    In the stages of grief, right? That’s called the upward turn what you just described. Is stage five, right. So you’re heading up. And then the next stage is reconstruction and working through.

    Bill Gasiamis 44:52

    And then the next stage is acceptance and hope. I mean, you can see you’ve gone through all of that and you’re at that upward turn and now you’re looking out for ways to support other people, you’re reconstructing everything your life, you’ve got back to studies.

    Bill Gasiamis 45:07

    And now there’s acceptance of that. And also, you’ve got hope for the future. And you’re looking forward as to how your life’s gonna turn out. Mom has done a pretty good job with you, after losing your dad at the age of 12. Would you agree? Has she been a pretty good mom?

    Mac Brand 45:26

    Oh, yeah, absolutely. I mean, like, me, my brother, and my mom has been, you know, the real real unit for such a long time after the loss of our dad, it was one of those things where it was like, you know, you’re either going to learn from it and get through it, or it’s going to destroy you.

    Mac Brand 45:45

    And hopefully, eventually, you learnt from it. But at the end of the day, my mom has been someone who has been the most support, like, in my life that I’ve known, you know, it’s like, it’s one of those things where it’s like, I don’t think I could have gotten to where I am without that support.

    Mac Brand 46:02

    And honestly, like, you know, it’s like, there’s obviously very, there was very frustrating times for me, and it’s all very much a learning experience. And I’m sure it was frustrating for her too. But at the end of the day, that basis and understanding of unconditional love that there is no condition that is going to remove that support, or that basis for support is important.

    Mac Brand 46:02

    Colleen it sounds like you actually laid a really amazing foundation from that time when you lost your husband. It sounds like you laid a really amazing foundation and example of how to get through really difficult and tough times. How hard was it to raise two kids on your own when, when your husband passed away?

    Colleen Brand 46:51

    Oh, you mess up a lot. It’s very, very difficult. I never planned on being a single parent. I think most people don’t go looking to be a single parent, but boy, it gave me a lot of empathy. You can’t do it all, and you often end up doing your job and then parenting, you end up doing both not well.

    Colleen Brand 47:27

    And you’re just as honest as possible. Sadly, with kids that probably you’d like to not have to be that honest with them at those young ages. But basically, you have to be that honest with them to survive, because we all have to push through it.

    Colleen Brand 47:53

    So you’ve got to really put everything out on the table of like, you know and fortunately I had raised I have two stepsons. So I already knew what was coming down the path with teenagers. So I took that experience and it was like all that stuff that your older brothers did. You can’t do that.

    Mac Brand 48:22

    Yeah, especially because she’s gonna be alone.

    Colleen Brand 48:25

    No one’s allowed to burn down the house. We have one house if it goes we’re toast people understand. So there was a lot of that was what I mean by reality. I was like, Y’all have to learn to clip coupons and get to the grocery store. Do your laundry like they really stepped up guess what y’all just had to grow up a little fast.

    Colleen Brand 48:50

    So let’s go because they stepped up too we did it together is what I liked to think and it wasn’t easy. It wasn’t ideal for any of us. I mean, for God’s sake, they’re young boys. They’ve lost their father a mom can’t at least this mom, I can’t do all the jobs. You know, so I can do the best I can.

    Colleen Brand 49:17

    But I kept waiting for that. That Disney moment of this coach that was gonna walk in the door or this male figure that was going to happen. Just like not coming okay. But whatever there’s a lot to be grateful for in there.

    Colleen Brand 49:36

    Both he and his brother, they’re really good humans. They’re good people. They they got it. They had the common sense to realize that. Yeah, we can’t do a bunch of stupid stuff. because we just can’t, you know, do we can do marginally stupid what we can’t do extremely stupid.

    Bill Gasiamis 50:09

    I reckon Mac probably achieved doing some stupid stuff though.

    Colleen Brand 50:15

    Of course they do.

    Mac Brand 50:17

    We were growing up in the city too we’re having a lot of fun.

    Bill Gasiamis 50:24

    Brilliant. Brilliant. So now you’ve gone through that with your husband. And now you’re going through this thing with your son, especially in the early days. Did you think you might lose him? Did you have that fear?

    Colleen Brand 50:37

    Oh, no, that’s when I knew. If Mac didn’t make it. That was the first time in my life that I went. I’m not making it either. I’ve always been a person that was like, oh, no, we’re gonna find a way.

    Colleen Brand 51:02

    But that night, I was like, yeah, not gonna make it. Yeah, I finally found what was going to chop me off at the knees.

    Bill Gasiamis 51:15

    Wow, that would have been hard. I’m glad we’re not talking about it.

    Colleen Brand 51:22

    And again, it gives you incredible empathy for parents that have had that ultimate loss, your heart goes out to them at the deepest level.

    Bill Gasiamis 51:39

    It sounds like, you’re really well connected, you got a great relationship. But did it get shitty at some times after the stroke after the recovery? Mac he seems like he’s a really nice guy. But did you lose it a few times Mac? Were you terrible to be around?

    Mac Brand 51:58

    There was a lot especially because in the stages, like when I was in the hospital, and you know, going through that grief and going through like I wasn’t in it a place in my mind where I was as emotionally mature. Like, I don’t like to say I had the mind of a child, but I had the impulse control of a child.

    Mac Brand 52:21

    So there is like, my emotions were almost very new to me too you know, like swallowing and eating were you know, at the same time, so there are times where I was almost like a baby in bed, like, and I’m six foot three very grown man, and there’s a lot of times where I’m sure I was a little bit that, you know, maybe frustrated or short.

    Mac Brand 52:52

    And that’s a product that’s something I noticed with brain fatigue, when it happens faster, I tend to get a little bit more shorter tends to be a little bit more of a problem with my increased anxiety and lack of like, kind of control and just kind of like, you know, stuff like that.

    Mac Brand 53:11

    But yeah, definitely, it was all a learning experience. It’s all just like, you know, I’m sure I wasn’t a peach in bed. But I remember you know, in the hospital, but I do remember times when I was intubated.

    Mac Brand 53:27

    This is gonna sound really strange. But when I was intubated and I had the oven mitt on, I thought that I was going to be able to escape the hospital somehow. Coz I thought I could walk like my car was in the parking lot that I could just drive away.

    Mac Brand 53:48

    So I was being really nice to the nurses trying to I guess, trick them and getting me to like leave the hospital it just totally a strange thinking. So I would like pat them on the back and stuff.

    Mac Brand 54:02

    When I was intubated like to say thank you and things like that. It was very, funny. But the nurses really liked me because I was very nice. But at the same time, I was like I’m going to escape with their help.

    What Caregivers Have To Deal With

    Colleen Brand 54:19

    I am a very fortunate person that I have another partner his name’s Alex. So I was so fortunate to have had love twice. And he has also been a great stepfather to both Mac and Bo we’re so fortunate to have him in our lives to help tremendously. So we’re very lucky that you know, we have him as well.

    Colleen Brand 55:05

    Which is, yeah, it’s a tremendous help because that male influence is really needed. My, my voice is not always the best one to hear and it’s also, um a safe place for Mac to vent. And I want to be that safe place for him to vent.

    Colleen Brand 55:28

    And that’s a good thing, you know, that if you’re gonna get upset at your situation or something, get upset with me, you know, because I get it, I know where that’s coming from. That’s not personal.

    Bill Gasiamis 55:42

    Yeah. That’s such a good thing that you’ve got there Colleen because my wife, she a little bit of abuse, you know, verbal abuse, because I was a mess. And I didn’t know what I was doing. And I was misbehaving.

    Bill Gasiamis 55:59

    And at the same time, I couldn’t explain myself because they could see me, but then I looked normal, but then I couldn’t explain how I was feeling on the inside. And they didn’t get it.

    Bill Gasiamis 56:13

    And then she took it personally, because I’d never really gone out of my way to mistreat her like that, of course, we mistreated each other from times in our marriage, but I never gone out of my way to do it.

    Bill Gasiamis 56:26

    Whereas I was now getting triggered by the smallest thing like parking in the wrong car space, or something like that would trigger me. Go nuts. And she, she used to take it personally.

    Bill Gasiamis 56:40

    And then to undo that, for me, it was really, really difficult because of course, I appreciated her. She was my everything. And I loved the fact that I was supported by her. But then I was also the guy giving her a real hard time.

    Bill Gasiamis 56:57

    And then I was trying to undo the pain and suffering that I’d caused her on top of all the other pain and suffering she’s already going through. It was such a difficult time. I mean, the only thing I could do was try and get somebody to intervene for me.

    Bill Gasiamis 57:13

    So I went to counseling, and I took her with me to counseling a few times, just so I could get somebody else to kind of explain things on my behalf or to try and make her feel better about things. Because I didn’t know what I was doing.

    Colleen Brand 57:29

    I can only begin to imagine how much frustration Mac had to be going through. And you’ve got I call it kick the dog, you’ve got to be able to kick the dog somewhere. And totally fine having it come towards me because I know exactly what that is.

    Colleen Brand 57:58

    And I can I know exactly where that’s coming from. And you got to get that out. You can’t. Keeping that in is the worst thing you can do. You got to get it out you’ve got to let those explosions come out.

    Colleen Brand 58:16

    And you can’t keep suppressing everything for God’s sake, look at what you’re going through. You know, you are really like a baby relearning everything. And how many times is a baby cry?

    Colleen Brand 58:30

    You know, so it was very easy for me to put it in that category of well, there’s Mac at 2 my God, that two year old Mac was a nightmare. I mean, I can’t tell you but then I could pick him up and leave. You know, with him screaming.

    Bill Gasiamis 58:48

    At six foot three.

    Mac Brand 58:54

    My time in the hospital being a very big guy, and you just can’t even really fit in the bed and they’d have to bring the one bigger guy from upstairs to come and carry me around to the bathroom or whatever.

    Bill Gasiamis 59:08

    That’s another logistical thing that you don’t experience as a What will people under six foot you know, everything’s kind of made for people under six foot roughly. Above that, it’s a bit harder.

    Mac Brand 59:21

    Yeah, that was that was interesting. I’m so lucky that you know, I did end up at the Ann Shultz hospital because that was such a great place. Like, you know, all the people there were so awesome.

    Colleen Brand 59:36

    They were all just, I mean, they were really like what you see out of a movie, you know of a hospital movie.

    Colleen Brand 59:44

    All the good stuff.

    Mac Brand 59:48

    It’s a teaching hospital, so they all look good too. And they’re all your young.

    Colleen Brand 59:53

    The doctor that saved him. He had just gotten to that hospital. He had been a Navy SEAL bomb diver gentleman then went to neurology school and then you know became this great brains surgeon I mean, just you have these people of the highest caliber in their skill set and in their moral character. And they were incredibly uplifting to be around also, I can’t say enough about just how noble these people are. They’re truly incredible heroes.

    Bill Gasiamis 1:00:38

    I appreciate my doctors, too. I mean, I can’t believe there’s people out there that just decide that they’re going to do a job that helps other people to the extent that we get our help. It’s like, it’s just nuts. It never occurred to me. So I assumed that there weren’t other people out there.

    Bill Gasiamis 1:00:57

    But they really are. And many of us wouldn’t be here without them. You’re really creative. Colleen, I saw a post of yours on Instagram. And I thought, oh my gosh, I need to speak to these people. I need to speak to you immediately and have you on the podcast.

    Kintsugi Mac Brand


    Bill Gasiamis 1:01:14
    And it was the post where you’ve got a photo of Mac’s head. And it’s the scar down the back of his head towards his neck, the middle of his head. And you’ve put the gold leaf on the back of that. Tell me a little bit about what inspired you to upgrade his scar to gold?

    Colleen Brand 1:01:36

    Gosh, that is Mac you have to look up what that is. I always forget what it’s called. Thank you. Thank you that is Kintsugi which is to me that is perfect. I wish that everybody that has a scar that wanted to have it embedded with gold that we could do that. Because that to me perfectly explains the scars.

    Mac Brand 1:02:07

    I really like my scars. Honestly, I think they’re cool. The back of my head was awesome.

    Colleen Brand 1:02:13

    Yeah, that, to me is everything. And that’s your new journey. And you know, let it be filled with gold, it be that the perfect imperfection that it is and defining that new journey in in such a beautiful way that it is repaired with these precious materials.

    Colleen Brand 1:02:42

    And then I just thought that was the perfect, metaphor for that the scars that one has from these life altering experiences.

    Bill Gasiamis 1:02:55

    It really is the perfect metaphor. I saw that and exactly knew about I know about Kintsugi a lot of stroke survivors actually know about Kintsugi. But to see that done the way that you did, it was just phenomenal.

    Bill Gasiamis 1:03:10

    And hopefully what I can get from you is the photo. So I can include it in the episode so I can show people what we’re talking about. Mac, I love my scar as well. The problem is that it’s disappearing, and I can brag about it. It’s getting better, and it’s getting covered by hair so you can barely see it. It’s pretty cool. You tell me about how you like to show off your scar.

    Mac Brand 1:03:37

    Oh, I mean, I literally just cut all my hair off because I’m regrowing. But I got the one. I mean, this is where they put one of the drain tubes right here, I liked that one.

    Colleen Brand 1:03:52

    Yeah. It had to be redone. Yeah, that was cool.

    Mac Brand 1:03:57

    And then my back was the crazy one, which I noticed is like, I don’t know if they’ll ever really how that one. I don’t know if that one’s ever gonna really run away. really toned down. I feel like that one’s intense.

    Bill Gasiamis 1:04:10

    They settle down they do and disappointingly more importantly, Yeah, mine was about the same as yours is now for a few years and then it kind of got flatter and flatter and better and better.

    Bill Gasiamis 1:04:24

    And now other people can see it when I shave because I usually keep my head quite short as well. And other people see it and they can tell yeah, like I can’t feel it anymore. It’s gone. And it’s a bit annoying.

    Bill Gasiamis 1:04:44

    I was the same I’m not sure what it is about it but I was quite excited by the fact that it was visible and that I was never afraid for people to see it and wonder and ask me about it was all good.

    Colleen Brand 1:04:57

    These are your battle wounds.

    Mac Brand 1:05:01

    Other people like with the same scar will be like, Hey, I got to and take off their hat and show me it’s always really, it’s really funny like with that scar in particular, I feel like people are like, Oh, I like that.

    Bill Gasiamis 1:05:12

    It’s a community. I agree with Colleen as well. That it’s our battle scars, it just shows. We’ve been through life. You know, that’s what’s happening to us. It’s we’re living it, we’re experiencing life.

    Colleen Brand 1:05:29

    Yeah, it’s so great that I’m so grateful that we’re getting to talk to you. Because we do need to share these stories. And we do need to help people that have had strokes, how that you know, this community to move forward and to have more information and to share the stories and then for people to understand prevention and then if you have want to be empowered with the knowledge of what to do, where you have to get to.

    Bill Gasiamis 1:06:11

    Yeah, and that there’s a brighter side. Think about it, you know, Mac went through a hard time four years ago. Now he’s getting better. We’ve, we’ve turned the corner, you know, we’ve done shock and denial, we’ve done pain and guilt, we’ve done anger and bargaining, we’ve done depression.

    Bill Gasiamis 1:06:26

    And we might go back there from time to time as well. And that’s okay, too, right. And now we’re at the upward turn and reconstruction is happening and acceptance in the hope is coming, and it’s happening.

    Bill Gasiamis 1:06:38

    So this is what I love about the podcast is I get to share the it was really shit at the beginning. And now look how we’re moving forward. And we’re overcoming stuff, problems, challenges.

    Mac Brand 1:06:48

    You know, I wouldn’t give it up for anything, honestly. Like, I like, my stroke, and you know, so it’s a part of me, same with my dad passing when I was young, they’re all things that, you know, have taught me more at the end of the day and made me stronger.

    Bill Gasiamis 1:07:12

    Yeah. Mac, your mum sent me a PDF of I no longer dream. Oh, yeah. Tell me about putting your thoughts into words? How does that help your recovery? And why was it important to do that?

    Mac Brand 1:07:31

    Well, that was kind of like cathartic writing with, I wanted it to be similar to kind of the Dante’s trilogy, where you start out in the inferno purgatorio and paradisumo. By starting off, in trying to describe all the confusion, and coming into being and being, you know, not really understanding what’s happening.

    Mac Brand 1:08:03

    There was a long period, I know, you know, six months after, where I was kind of like, just, you know, maybe going to outpatient rehab, and just kind of floating and not really feeling like myself, or having really any grounding to the world around me. And then it’s like, you know, I come out here.

    Mac Brand 1:08:20

    And finally, it’s like, I feel like I have grounding. Like, it’s kind of one of those things where it felt good to write down a journey, you know, and bring it to a point where, like, even if things aren’t perfect, there never will be, Nothing’s ever perfect, it’s fine. You know, everything is what you make. And at the end of the day, it’s like, everything’s better.

    Bill Gasiamis 1:08:46

    Are you hoping to do more with it at this stage? Or is it just for you.

    Mac Brand 1:08:51

    I have it sent to like an editor right now. So I have someone editing it, maybe I’ll send it out to see if someone will publish it or something. If not, I might just make it a book and sit on my shelf one day and look through it, I just, I’m always kind of fearful that my plateau so to speak, will end earlier.

    Mac Brand 1:09:21

    Which I don’t think it will. But it’s kind of one of those fears in the back of my head. So I always want to have these things like writings and you know, art and stuff like that, that kind of remind me of those periods of my life. So I don’t feel like if I do forget it ever, I can always go back and look at these things that I’ve done and be like, Okay, this is where I was, you know, and this is what I was doing.

    Mac Brand 1:09:43

    So that’s kind of where I’m at with it where it’s like, if it doesn’t become something that’s fine, It’s something to me, and that’s all that matters. And if it does, and if it helps someone or someone finds value in it, that’s fantastic too.

    Bill Gasiamis 1:09:56

    Yeah, that’s perfect.

    The Intubated State

    Colleen Brand 1:09:59

    When I had one person read it, who works with a lot of people in Walter Reed, and what she liked about it was that, we really don’t understand the perspective of someone that is in a state of intubation.

    Colleen Brand 1:10:21

    And that they do have awareness? And what is that awareness. So she really liked it as having an awareness of what somebody is going through that is in that state of intubation.

    Colleen Brand 1:10:42

    Because it is an unknown, and we’re assuming that, oh, there’s nothing but there’s very much going on. And perhaps the experience could be different for the patient, perhaps we could dim the lights, perhaps we could bring in soothing music, perhaps we could be a little bit more gentle and comforting.

    Colleen Brand 1:11:05

    Perhaps we could perform Reiki perhaps, you know, some other types of things to to soothe the soul and spirit in a more gentle way. Because it’s so horribly clinical, we think that there’s nothing going on there.

    Colleen Brand 1:11:22

    And that’s wrong. There is much going on. And I think that if some more holistic things could be come in, or even an awareness of Dimming the lights, and what can be experienced. That was what she brought in. And I was like, that is lovely, and very important. That does have value.

    Bill Gasiamis 1:11:47

    I completely agree with you guys. Absolutely. Look. Thank you so much for agreeing to be on the podcast when I reached out. Mac, thanks so much for sharing your story in the way that you have.

    Bill Gasiamis 1:12:01

    You guys are doing great, you guys are doing an amazing job of, you know, getting back to life and recovering from trauma and from overcoming your pain and your suffering. And it’s a great example. And I’m glad that we get to share that with other people and just give them a sense of how some other people like you guys are doing it.

    Bill Gasiamis 1:12:24

    And then there’s 180 or so other episodes where it’s exactly that’s what we’ve done. We’ve given examples of how other people have gone through their own recovery. And it’s not all been pretty, you know, there’s been shitty times and terrible times and hard times.

    Bill Gasiamis 1:12:43

    But a lot of people are seeming to find the way through the fog and get better at living their life the way that they intended to live their life before stroke happened to them. So really appreciate you guys sharing your story.

    Mac Brand 1:13:02

    Thank you so much for talking to us.

    Colleen Brand 1:13:05

    Thank you. It’s nice to not be alone. That’s for sure.

    Bill Gasiamis 1:13:10

    Yeah, by all means you’re definitely not alone. Mac if you ever need to reach out, please feel free to Instagram is full of people that are recovering from stroke. Hashtag stroke survivor is huge. There’s so many amazing people there. And they’re all willing to share.

    Bill Gasiamis 1:13:27

    They’re all willing to help others, which is bizarre, strange and amazing to me at all at the same time. So and you guys fit the bill, you guys are exactly the same as them. You know, you want to connect with people.

    Bill Gasiamis 1:13:39

    You want to feel less alone and you want to share and help others, man, I can’t ask for more from my guests on the podcast. That’s exactly what I want to do. So thank you for helping me do that as well.

    Colleen Brand 1:13:55

    Thank you so much. We appreciate you.

    Bill Gasiamis 1:13:58

    Thanks for joining us on today’s episode. I hope you enjoyed the conversation and got something positive from it. Please comment, like and share. If you’re watching on YouTube. Click the like button, leave a comment, subscribe. Tap the notification bell so that you can get notified of new episodes as they become available.

    Bill Gasiamis 1:14:18

    And just let me know what you’re thinking. I look forward to people’s comments and I love responding to them. And it will also help each episode rank better. And therefore it will make it easier for other stroke survivors to find the episodes and maybe that will help them have a better stroke recovery. Thanks again.

    Intro 1:14:36

    Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. The opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

    Intro 1:14:53

    All content on this website at any length blog, podcast or video material control this website or content is created didn’t produce for informational purposes only and is largely based on the personal experience of Bill Gasiamis.

    Intro 1:15:06

    The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.

    Intro 1:15:15

    The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.

    Intro 1:15:30

    Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional.

    Intro 1:15:44

    If you are experiencing a health emergency or think you might be, call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.

    Intro 1:15:55

    Medical information changes constantly. While we aim to provide current quality information in our content. We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content.

    Intro 1:16:08

    If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide however third party links from our website are followed at your own risk and we are not responsible for any information you find there.

    The post Neck Cracking And Stroke – Mac & Colleen Brand appeared first on Recovery After Stroke.

    1 hr 17 min
  • High Blood Pressure, Stroke & Kidney Failure – Bryan Caldwell

    Bryan Caldwell was 34 and seemingly healthy and well until high blood pressure caused a stroke that would allow doctors to also discover that he had total kidney failure.

    Instagram

    Highlights:

    01:55 Introduction

    02:52 High Blood Pressure & Stroke
    13:56 Initial Deficits
    16:27 Make Your Own Destiny
    18:44 Pseudobulbar Affect (PBA)
    24:32 Stepping Up As A Caregiver
    31:25 Diet After A Kidney Failure
    37:58 Second Chances
    49:47 Reaching Out
    57:45 Parenting At a Young Age

    Transcription:

    Bryan Caldwell 0:00

    You know, I’m not going to accept what I’ve been handed. Like, these aren’t the cards I’ve been dealt. You know, it’s it’s basically like, almost like fate or my own destiny, I need to figure out my own destiny if I want to be successful in whatever it’s going to be then I need to do it. I don’t need to give myself excuses.

    Intro 0:24

    This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.

    Bill Gasiamis 0:37

    Hello, and welcome to another episode of the Recovery After Stroke Podcast. I’m Bill Gasiamis. And recently, Spotify released a new feature that allows people to now rate their favorite shows similarly, or in a similar way to the way the apple podcast app allows it.

    Bill Gasiamis 0:54

    So even if you’re not somebody who uses Spotify to listen to your music or your podcasts, if you do go across to Spotify, you can leave the show a five-star review just go to Spotify search for recovery after stroke, the podcast will come up and then you can leave, hopefully, a five star review if you think the show deserves it.

    Bill Gasiamis 1:15

    Now, this has been happening more and more in the last few months as I’ve been asking people to do it. And I’m noticing that the number of downloads per month is starting to increase.

    Bill Gasiamis 1:25

    The show has surpassed 5000 downloads a month. And that is an amazing, amazing thing. Considering that when it first started, it was lucky to get maybe three or four downloads a week.

    Bill Gasiamis 1:39

    So please feel free to go across to your favorite podcast app. Even if it’s not the Spotify one, leave the show review. Tell people what you think of it. It’ll help the podcast rank higher and it’ll help the podcast be found by more stroke survivors and their caregivers.

    Introduction


    Bill Gasiamis 1:55
    And hopefully, it’ll make their life a little easier and feel less alone. So I’d really appreciate if you did that now. Today’s episode is episode 189. And my guest today is Brian Caldwell, who at the age of 35 is right now currently recovering from a hemorrhagic and ischemic stroke as well as total kidney failure.

    Bill Gasiamis 2:20

    Likely the symptoms of undiagnosed high blood pressure. Also joining us was Brian’s partner Brittany, who had to step in to being a caregiver as well as a mum. And despite all of their challenges, these two are super positive.

    Bill Gasiamis 2:36

    They’re a delight to interview and I had such an amazing time getting to know them a little. I hope you enjoy this episode. Brian Caldwell, welcome to the podcast.

    Bryan Caldwell 2:46

    Thanks for having me.

    Bill Gasiamis 2:47

    Pleasure, man. Thanks for being here. Tell me a little bit about what happened.

    High Blood Pressure & Stroke


    Bryan Caldwell 2:52
    Well, let’s see how it started out. I have no symptoms. I had some cramps in my leg. But I had a feeling it was from like low potassium or something like that. So I was taking a potassium supplement but it wasn’t doing anything, I kept having cramps.

    Bryan Caldwell 3:12

    So that’s the only symptom I had. So one day, I was having a Zoom meeting like we’re having for a new job I was about to start. And basically my wife was on the stairs right next to where I was having a Zoom meeting like we are on the computer here.

    Bryan Caldwell 3:30

    And I was just sitting there and I basically got the job and she was being nosy listening on the stairs saying, okay, babe did you get it? and I yelled babe and then as I said babe, put my head down, passed out, and that was it.

    Bryan Caldwell 3:47

    And then I remember bits and pieces. Like, I wasn’t completely incoherent, except for like the last three weeks that as I passed out beyond that, but she basically kind of stepped in, learned all about stroke, and it was caused by high blood pressure of my diabetes. And then I don’t know if you want to jump in and kind of tell him most of the story here.

    Bill Gasiamis 4:12

    Hey, who’s that?

    Bryan Caldwell 4:15

    This is Brittany.

    Bill Gasiamis 4:16

    Hi, Brittany, how are you? Come a bit closer.

    Brittany 4:19

    He’s taken up the whole screen.

    Bill Gasiamis 4:22

    Yeah. Shove over Bryan.

    Brittany 4:24

    Yeah. So when we had gone to the hospital, he actually had a bleed in his brain in his brainstem. And he was transported to the nearby stroke center. And they told me basically, how long have you known that his kidneys weren’t functioning?

    Brittany 4:42

    I was like, I have no idea. And they said we can’t even push contrast through because his kidneys aren’t working at all. And so I was like, Huh, well, that’s news to me. So they were on with and neurologists down in Salt Lake City, which is the main city and Utah, and they have a specialized neurology center over there.

    Brittany 5:04

    And so they wanted him to get transferred. So it took him about two hours to get transferred down to Salt Lake. And by the time he got over there, he was totally out of it. He was like, slurring his words. So it was like the stroke was progressing.

    Brittany 5:21

    He had more like drooping on his left side. And then at that point I had walked in because I thought, okay, he’s gonna go from one hospital to the next. They’re just going to, you know, do workup, see what they can do for him.

    Brittany 5:34

    But by the time I got there, they said, Hey, we need to intubate him, like, he can’t swallow. He’s not, you know, projecting his airway. So we need to do what we can. So I said, okay, like, is he gonna make it out of this, like, what’s gonna happen?

    Brittany 5:49

    And they said, We don’t know. We can’t give you any definite answer. And I’m like, okay. So they basically pushed me out, of course, it’s healthcare. So they, you know, come to me, they want my card, they want my information.

    Brittany 6:00

    So they want to make sure I can pay. And I actually called my boss who has a large family of doctors. And I said, Hey, this is the situation. This is what’s going on. And so he got his sister on the phone, who owns her own Medical Clinic in Arizona.

    Brittany 6:18

    And she was like, ask them how big the bleed was. Ask them what kind of stroke it was, what it was caused from. So I basically have went right upstairs. And I was like, are you the nurse? Yes. And I said, Okay, how big was the bleed?

    Brittany 6:31

    And she’s like, looking at me, and so she goes, well, it was only a couple millimeters. And I said, Okay, well, what kind of stroke was it? And so she said, Well, it’s a pontine hemorrhage, but we’re still trying to decide specifically what it is.

    Brittany 6:44

    Because they were trying to say it was a I think caucus malformation, which they said could be something that he’s had since he was very little.

    Bill Gasiamis 6:53

    A cavernous malformation?

    Brittany 6:55

    That one, yeah, cavernous malformation. So it was either that or he had, what it more so seemed like over time, when we were kind of figuring things out was that he had a lot of clots in his body from kidney failure, which he could have had the clot in his brainstem for a period of time.

    Brittany 7:17

    And then his kidneys weren’t functioning. So obviously, the blood pressure wasn’t functioning as well, which caused essentially the clot to rupture in his brain and caused the bleed in his brainstem. So that’s kind of the roundabout of what happened initially.

    Bill Gasiamis 7:37

    Wow, that’s crazy. Bryan, did you know you had high blood pressure? First question.

    Bryan Caldwell 7:44

    I had been diagnosed years ago, but it was never like an ongoing issue. Like I was never fully diagnosed with hypertension.

    Bill Gasiamis 7:53

    Okay, so no medication.

    Bryan Caldwell 7:55

    I was taking some medication, but was unaware that I was supposed to take it consistently.

    Bill Gasiamis 8:03

    Okay, and then second question is, you had no idea you had kidney failure. And is that common is that what happens?

    Bryan Caldwell 8:11

    It’s not very common, but I didn’t have very, in my younger years, I wasn’t very controlled. Like, my blood sugar was out of control. My eating habits were out of control.

    Bryan Caldwell 8:23

    My exercise was off and on. I was fairly active. I mean, I played hockey. I was the coach of my son’s hockey team, right before I had my stroke. So I was active, but I wasn’t very consistent as I should have been. Now it’s different. You know, with my stroke, it’s like, you know, it’s a wake up call. I’m very active just about every day now.

    Bill Gasiamis 8:47

    But were you really, really bad? Or are you just a regular person because nobody’s perfect with their diet. Nobody avoids, you know, sugary drinks. Nobody avoids fast food. Most people do all that kind of stuff. Were you like out of control with that stuff? Or were you just a regular guy?

    Bryan Caldwell 9:08

    I’d say when I was younger, I was probably more out of control. I’d say between the ages of 18 and 25. I was basically an alcoholic with my friends basically just love to have a good time with my friends.

    Bryan Caldwell 9:21

    So I think that’s what caused my high blood pressure and then as undiagnosed over the years and basically when I got older is when it kind of, you know kicked my body’s butt.

    Bill Gasiamis 9:32

    Yeah, right. Okay, so what’s it like Brittany when somebody’s talking one second, they’ve just got the job and then they pass out? What happened to you like, how did you cope with it?

    Brittany 9:46

    So I was being the nosy person that I am. I was kind of right beside him right up the stairs because I wanted to know what happened. We talk about it all the time. It’s like the perfect storm. Everything happened in a perfect way.

    Brittany 10:05

    And I still almost don’t believe it because he wanted to go to the desert that weekend. And he was supposed to be driving home that day. And I told him no, like, you know, you need to get a job. He needs to do this. Like then he called me a penny pincher or something.

    Brittany 10:22

    And I said, You’re lucky I’m a penny pincher, I saved your life. Like you could have been on the road in the middle of nowhere and have your stroke. And then I usually at that time, I was on calls back to back to back at work, and I would shut my office door, put my headphones on and not hear anything that was going on.

    Brittany 10:40

    So when he was on the phone, it was like that 30-minute break of me not being on meetings. And he yelled, and I thought, okay, maybe he just wants to tell me you know what happened, how it went.

    Brittany 10:52

    And then I said, what? And then he didn’t answer. So I was like, okay, whatever. So I went downstairs and he had like, his head slumped over on the desk. And he was like, kind of like slouching over his whole left side, couldn’t move.

    Brittany 11:06

    And I was just like, what’s going on? And he was like, Call 911, Call 911. That’s the only thing he could get out. So to me, I’m sitting on the phone with 911. They’re asking me about his blood sugar. I’m like, It’s not his blood sugar. He’s not high. He’s not low. Like he’s having signs of a stroke.

    Brittany 11:22

    And I would hope that’s not what it is. But I’m pretty sure that’s what it is. And so when the ambulance came, the fire department, the sheriff, they all looked at him and they were like, he’s too young, he’s not having a stroke.

    Brittany 11:35

    And so he actually thought his sugar was going low. So he was chugging Snapple. And when he was chugging Snapple, it ended up that his sugar when the paramedics got here, his sugar with well over 500, so he wasn’t low.

    Bryan Caldwell 11:53

    Sugary drinks check.

    Brittany 11:56

    But then on top of that, his blood pressure was like around 230, 240.

    Bill Gasiamis 12:01

    Wow.

    Brittany 12:01

    So it was just like all at once. And then they basically took them out, they took them over to the hospital. And it was kind of like this instant shock what is going on, it happens to be the day where our son was home from school on top of that.

    Brittany 12:17

    So I’m trying to round up a dog and a seven-year-old, I’m trying to tell him to go upstairs because I didn’t want him to see what was going on. But I couldn’t really control that make sure he didn’t fall over and hit his face or injure or anything else.

    Brittany 12:28

    So I had to let things kind of play out. And then at that point, it’s like, how do you explain to a seven-year-old that, hey, he left, he’s in the hospital, and he’s gonna be there for a little while.

    Brittany 12:39

    So it was definitely tough. Like, I didn’t have time to clean the floors, because he when he had the stroke, it affected his swallowing. So he stopped swallowing. So all he was doing was drooling everywhere.

    Brittany 12:55

    And of course it was Snapple drool so it smelled like Snapple every time I walked in the house, and it was like, I would just look at that area where he was sitting. It’s like, it’s just a bad dream.

    Brittany 13:06

    I’m just gonna wake up from it like this isn’t happening. And then it was like, every day, it was the same thing over and over and over because he was in the hospital for almost three months.

    Bill Gasiamis 13:15

    Traumatic.

    Brittany 13:17

    Yeah, definitely.

    Bill Gasiamis 13:19

    What happens, Brian? You go to hospital, you get told all these things went wrong with you? What are you thinking, man?

    Bryan Caldwell 13:27

    At that point, I don’t even think I control of my thoughts. I was so incoherent for a good three weeks. And I was doing hemo dialysis, which is, you know, my different levels were so out of control that they’re trying to get my toxicity back under control.

    Bryan Caldwell 13:44

    And you know, different levels are throwing my brain off. And I can’t think clearly. So I’m basically just sitting there, letting them do whatever they want to do and just going with the flow.

    Initial Deficits After High Blood Pressure & Stroke


    Bill Gasiamis 13:55
    Wow. And then when they stabilized your kidneys and the dialysis started to work and all that kind of stuff, then did you have some deficits on your left side that you had to deal with and recover from what were they?

    Bryan Caldwell 14:12

    Oh, definitely, I had my full left side paralysis all the way down to my leg. But luckily, within a few days, Brittany was stretching my leg pretty often. And that actually helped a lot. So my leg function came back pretty I mean, took a few weeks of rehab to get it back.

    Bryan Caldwell 14:34

    But my arm was completely useless. But, you know, months go by and I’ve got some movement and you know, I’m able to still do some things like it’s fairly functionable just can’t like grip some things and you know, I have full function, full mobility, but I’m working on that the strength and stuff like that to try and get it back every day.

    Bill Gasiamis 14:56

    You were 34 when it happened. So, how old are you now?

    Bryan Caldwell 15:03

    35.

    Bill Gasiamis 15:04

    Okay, so it was not not that long ago was any 12 or so months ago?

    Bryan Caldwell 15:08

    Just last February.

    Bill Gasiamis 15:11

    Wow. So it’s pretty short amount of time. So you’ve gone from being relatively healthy feeling, okay, really capable of going out to the desert, do whatever you’re going to do there.

    Bill Gasiamis 15:22

    Up until that day and then you’re this completely different person from that day on, you’ve got the job. Clearly you didn’t go back to work. Brittany’s nagging didn’t get you back to work it got you a job but not back to work.

    Bryan Caldwell 15:39

    I call her my sugar mama now.

    Bill Gasiamis 15:41

    You’re living off her the good life, right?

    Bryan Caldwell 15:45

    I would say pretty close.

    Bill Gasiamis 15:46

    I know. You’re lucky boy. I did the same thing right? I lived off my wife for quite a few years, on and off. And it was interesting and challenging and confronting and difficult. What’s it been like for you to kind of be unable to get back to some of the things that you were doing before stroke?

    Bryan Caldwell 16:14

    So as I got out or back home to kind of recovering. Within the first month I was kind of focused on like, you know, when’s the depression going to kick in because I keep hearing about depression.

    Make Your Own Destiny

    Bryan Caldwell 16:27

    And I watched a movie in the hospital called seven yards. It’s on Netflix. And it’s about a paraplegic. He, becomes paraplegic when he’s 19, I think, from a bad football hit. And, you know, I see that he’s got a much worse life than I do, you know, not being able to move anything.

    Bryan Caldwell 16:47

    So his goal was to walk seven yards down the aisle to get married. And that kind of gave me a motivation. Like, you know, I’m not going to accept what I’ve been handed. Like, these aren’t the cards I’ve been dealt.

    Bryan Caldwell 17:01

    You know, it’s basically almost like fate or my own destiny. I need to figure out my own destiny. If I want to be successful in whatever it’s going to be, then I need to do it. I don’t need to give myself excuses.

    Bill Gasiamis 17:17

    Wow. And are you driving?

    Bryan Caldwell 17:21

    Yeah, I started driving. Oh, my wife’s gone. Sorry, I started driving, I think November.

    Bill Gasiamis 17:28

    Okay. So that came back relatively quickly, they gave you permission to drive or you started driving?

    Bryan Caldwell 17:36

    Yeah, the funny thing was, I failed the first assessment with my occupational therapist. It basically wasn’t really my fault, it was more of a bad timing issue. Like they had canceled the appointment on me. And I was upset. And I said, You know what, I’m not gonna stand for this, like, give me another appointment as soon as possible.

    Bryan Caldwell 17:56

    And they were kind of upset that I did that, and basically failed me on the spot. So then I went to another lady that was nearby. And luckily, she actually grew up in my hometown in a different state.

    Bryan Caldwell 18:07

    So we actually got along really quick. So it was great. So at that point, I think I needed a little more time, it was like a month in between, and I probably needed that month in between just to, you know, gain a little more cognitive ability.

    Bryan Caldwell 18:22

    I never really lost my cognitive ability, but like, just like, you know, being able to multitask and keep my eyes open and focus on different things and notice the things around me really helped a lot with my driving. I still get nervous from time to time, but it’s a lot more easygoing than it used to be.

    Pseudobulbar Affect (PBA)

    Bill Gasiamis 18:44

    Did it impact your emotions?

    Bryan Caldwell 18:48

    At first it did. But that was like a big focus of therapy at first was, you know, I had regular therapy like for my mind, so they would just, you know, console me all the time. Just reaffirm me like, Hey, you’re allowed to feel like this is what you’re going to feel like and pseudobulbar was like, played a major part, the beginning.

    Bryan Caldwell 19:09

    So I cried uncontrollably all the time towards everything. I mean, the littlest things. When I was sitting in my bedroom, the first I think, the first couple of days. My nurse was coming in to train my wife on dialysis. And I heard them talking about dialysis.

    Bryan Caldwell 19:29

    And I didn’t realize how far along I was, what stage I was in, but I had overheard, I was in stage five. And I was like, wow, that’s really hitting home. So I probably cried harder than I’ve ever cried in my life at that point.

    Bryan Caldwell 19:44

    And that, you know, shortly after I kind of got used to it and just can’t give myself excuses to feel bad for myself. I gotta push forward. I gotta try harder. I gotta, you know I just do things to make myself happier. So I kind of focused on my crying more. There’s times where like I wanted to cry. But I just held it in and said, Hey, you got this, just think about it a little harder.

    Intro 20:15

    If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like, how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse.

    Intro 20:32

    Doctors will explain things that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you.

    Intro 20:55

    It’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website now, recoveryafterstroke.com and download the guide. It’s free.

    Bill Gasiamis 21:19

    Hmm, that’s interesting. So what about your identity guys, like your combined identity before it was, you know, healthy husband, healthy wife, healthy child healthy life? You know, everything was going good. But how did it change the way you guys interact as a family?

    Bryan Caldwell 21:37

    I think my son actually adjusted really well, like he’s still very worried when you know, little things happen. And he cries, I’m like hey dude, it’s okay. But, you know, what I struggle with sometimes is putting my socks on.

    Bryan Caldwell 21:54

    So every morning, he puts my socks on for me. So he loves to help out. And he does a really good job of assisting with different things. And he doesn’t really, I mean, a typical seven year old, of course, he’s going to complain about stuff.

    Bryan Caldwell 22:06

    But he loves to just, you know, whatever we’re doing wants to help out. He wants to be a big kid. So he’s done a really good job. I mean, Brittany, when I speak on behalf of her, she, you know, I would say that, we’ve only been married for three years.

    Bryan Caldwell 22:23

    But when we met five years ago, I wouldn’t say she was very responsible. But within this last year, she has become my rockstar. Like she has done everything, learned everything taken care of everything. I mean, I have nothing to worry about whenever she handles something.

    Bill Gasiamis 22:41

    All right, stop for a second. She was working telling you to go and get a job. You weren’t working. What do you mean, she wasn’t responsible?

    Brittany 22:51

    I wasn’t really working when we had first gone together years ago. And I kind of had to step outside of my comfort zone and go get a job, put my son in daycare, do things like that, that I didn’t really want to do.

    Brittany 23:07

    Like he handled everything like he did laundry, he would pay the bills. he mowed the lawn, like I suddenly became a gardener overnight, a bill payer, accounts payable, like all of the stuff that I didn’t want to do, and I had to do it.

    Brittany 23:24

    And then on top of that, it was like, all of these little things he didn’t take into account. Like I spent hours on the phone trying to figure out like disability, for example, and trying to get that process done. And that took six months alone or the transplant. It’s like I have a ginormous two inch binder of all of his stuff that he needs for transplant.

    Brittany 23:46

    And it’s like when he just he looks at it. He’s like, oh, where’s that? Oh, okay. So it’s all here. Like, we went to see his kidney doctor today. And she was like, Here, here’s his labs. I know you guys are probably the only ones that actually keep these cuz you’re actually responsible enough. So I’m like, I like to look at this stuff. It’s, interesting to me.

    Bryan Caldwell 24:10

    And she also praise Brittany because she was there since I think the first week? Second week?

    Brittany 24:16

    Probably like day three.

    Bryan Caldwell 24:19

    And she saw me when I was at my worst. And she’s a nice Indian lady. And she goes, You know, I’m so thankful that you are here we are about to pull the plug on you.

    Stepping Up As A Caregiver

    Bill Gasiamis 24:32

    Britany so you had a massive change in mindset? Did you need such a drama to change your mindset and become quote unquote, more responsible? I mean, obviously, you need to help out or you need to step up, you know.

    Bill Gasiamis 24:48

    In sickness and in health and death do us part probably you said that when you guys got married, maybe. So like, what happened with your mindset? How did it shift like that? I know what caused it.

    Brittany 25:06

    I think I was just very focused into work. So I would, because I work from home, so I would work, you know, get on the computer, seven 8am. And there were nights where I wouldn’t get off till 8:30 9 o’clock 10 o’clock at night and he’s like.

    Brittany 25:23

    Get off the computer separate time separate, then I’m like, it’s so hard when my office is right next door in my mind is running a million miles an hour, but my priorities just weren’t in line with what they should have been. And so when there’s something drastic that’s happening in life, like this, it’s like, you know what work is going to be here tomorrow.

    Brittany 25:41

    And I’ve had that mindset to where the same work is going to be there. And if there’s something that needs to be done today, then I gotta get it done. If I have to take care of my son, because he’s sick, if I have to take him to doctor’s appointments, if I need to go to therapy, and luckily, I have a really good job to where my boss understands the situation that I’m in, and I don’t, you know, get a hard time from it.

    Bill Gasiamis 26:01

    Work never ends anyway. I mean, doesn’t matter how much work you do, it never ends, there’s always something to do tomorrow. That’s really cool, that you had the awareness to just realize that, okay, some priorities need to change, and work is going to be second fiddle to everything else that’s family-oriented.

    Bill Gasiamis 26:23

    And, look, that’s what most people do. That’s what my wife did. That’s, that’s what a lot of people do. But I get what you’re saying about the chores and all that sort of stuff. Now, you’ve got to step up, and you’ve got to take over the whole running of the family, which was what my wife did.

    Bill Gasiamis 26:36

    She became a caregiver, she became school mom, she became the main breadwinner, she became the person who had to look after her dad, because my mother-in-law passed away at the same time that I was unwell.

    Bill Gasiamis 26:52

    And it was she just had to put everything on hold and do all of her things without really anyone asking her. Was she okay with it? You know, Are you up for it? Is that what you want to do?

    Bill Gasiamis 27:05

    Of course, she said she wouldn’t want to do it. But she did it. She did what she felt like she had to do I was so lucky. Because I went through about three and a half, four years of bleed, a little better, another blade, a little better brain surgery.

    Bill Gasiamis 27:23

    So it was just ongoing this ongoing constant saga. So have you put some of the things you love to do on hold? Have you found some time for yourself to do the things that you’d love Britney? Where that all the rest of your life?

    Brittany 27:42

    I don’t know. I mean, at first, it was extremely hard. I felt like I would go to the hospital every single day and just be mentally drained by the time that I got back because all he did was just cry.

    Brittany 27:55

    And I know that he couldn’t help it. But he you know, I get there at 9am. And he’s like, help. They’re trying to kill me. And I’m like, No, they’re not, you know, if you’re just an ICU, you’re having delirium like hallucinations.

    Bill Gasiamis 28:05

    They’re trying to save you.

    Brittany 28:07

    Yeah. And on top of that, I would leave for 20 minutes, and he’d sit there and watch the clock. And literally watch it tick. And then I would come back, you were gone a really long time. I’m like no, I wasn’t, so I didn’t get a break the entire day.

    Brittany 28:21

    And then by the time we get back at night, it’s like, I had to explain what was going on with Logan, our son, and hey, he’s okay. He just can’t talk right now. And then I still had to work, you know, meanwhile, all of this, I still had to make sure our dog was getting taken care of the house was somewhat taken care of.

    Brittany 28:41

    So I think I pushed all of my feelings aside for a really long time. And then, on top of that, when he came home a couple months later, it was like, we went straight from this hospital adjustment to now we have to adjust with dialysis and doing dialysis every day. And what does that mean for us? And how is that going to change and we have so much more freedom than ever before.

    Brittany 29:03

    If we wanted to go for a drive and enjoy the beautiful scenery, we could just go and do that now. It’s like, hey, at 6:30 we need to go hook up to dialysis. And so it changed and it went from dialysis to doctor’s appointments to therapies to every single week, there was probably three or four specialty appointments on top of therapies that he had to go to.

    Brittany 29:27

    And it didn’t stop and I think it finally hit me like last October and I’m just like, I think I’m just at my like my brain I can’t take anymore because I just had taken care of everyone else for so long. That I just I felt like I just needed to break down over and over and over and over again because I hadn’t all year.

    Bill Gasiamis 29:49

    And did you?

    Brittany 29:50

    Oh yeah, plenty of times. So it was hard and then it was hard because I was doing that when he was trying to stay positive and focused on I was recovery. So it’s like now I feel like I’m being this negative person. But it just was like, it was a lot for me to kind of adjust and adjust with this new life.

    Brittany 30:10

    And how do we move forward? It’s so different. And I just remember, you know, there’s a lot of things that he doesn’t remember, because he wasn’t there for he was so incoherent. And I remember, you know, he was our son’s hockey coach. And the season was still ongoing when he went into the hospital. And every Friday was his hockey practice.

    Brittany 30:29

    And I said, Hey, let’s go to hockey. I’ll meet you there, I’ll take you. And he’s like, No, if he’s not going to be my coach out there, I don’t want to go. And I’m like, so it was really hard. He didn’t want to go for pretty much the rest of the season. And then when this season started, I was like, Hey, I think you should do it.

    Brittany 30:46

    He’d want you to do it. And so we had a big conversation with him. Like he may not ever be able to be your coach again, but just get out there and go have fun and he had fun when he did it. And he’s like, I’m glad I went ice skating again, or played ice hockey again.

    Bill Gasiamis 30:59

    Is that hard for you to listen to Bryan?

    Bryan Caldwell 31:02

    It’s hard to be a spectator to be honest. I like participating in basically everything. But when I just having to experience like the whole ordeal myself with her, it’s been an experience. So I’ve grown more no doubt. I’m sure she has also.

    Diet After A Kidney Failure

    Bill Gasiamis 31:25

    It sounds like you both have adjusted grown, learn new things about yourself. You’ve changed your diet dramatically. I imagine. Brian has that right. So what are you not consuming these days? Or what are you consuming?

    Bryan Caldwell 31:39

    So what the dial says and diabetes and stuff like that, just watch my blood pressure. Make sure that’s okay and controlled. I watch potassium, sodium, carbohydrates, sugar, anything that tastes good, it’s out of my diet.

    Brittany 31:57

    He can’t eat cheese anymore.

    Bryan Caldwell 31:59

    No beans. But I cheat sometimes, like today, for instance, I got my levels and my blood checked and everything was great. And beyond good. So I said, You know what, let’s go have a cheeseburger today. So we went out, I didn’t eat the buns, which is all the carbs.

    Bryan Caldwell 32:21

    But I did splurge on French fries and cheese and stuff like that, which I never have, it doesn’t affect me that much. But every now and again, it’s like, you know, I’ve always lived by I don’t want to die unhappy, I want to, you know, experience some things that I enjoy.

    Bryan Caldwell 32:40

    So I’m not gonna just give up on things completely that I enjoyed before. So the little things in having a portion controlled, and, you know, taking them in seldomly, like, you know, here and there, not all the time.

    Bryan Caldwell 33:00

    Just, you know, give your body a break. So I for the most part 90% of time I take care of my body, in and out. No problem. And then when it comes time to cheat, you know, I don’t feel guilty.

    Bill Gasiamis 33:11

    Yeah, yeah, fair enough, man, I get that. So what about your sleep? Did you get any sort of changes in the way that you slept? Or are you sleeping? Okay? Has that become worse or better? Is it okay?

    Bryan Caldwell 33:27

    I’d say because of dialysis. The machine loves to be that me. If my line my dialysis line that gets cramped, so the fluid doesn’t flow so it just screams at me until I wake up and it’s loud.

    Bryan Caldwell 33:41

    So that wakes me up. You know, it depends if it’s a good night or bad night. If it’s a bad night it’ll wake me up five six times. If it’s a good night I’ll sleep all the way through so I usually I mean basically every night I wake up right when dialysis end so about 5:30 to 6:00.

    Bryan Caldwell 33:58

    And I get up and usually you know go right to the gym right to my workout and get things done before I take my son to school and usually if I don’t get it done before school, then I come home and do it that way. All right, pick Brittany Up we go both go to the gym together.

    Bryan Caldwell 34:14

    And you know we kind of have motivated each other for the most part. You know, I was working out for myself and then I got Brittany to work out for herself. And you know, I think my motivation probably rubbed off on her a little bit to kind of get herself in check and her health and check.

    Bryan Caldwell 34:34

    So she’s on a you know, a diet right now where she’s eating better and she has more energy and you know things are just properly flowing the way it should. And her mood is better my mood’s better. You know, it’s funny how the vibrations is go off one person just affect all the people around you.

    Bill Gasiamis 34:55

    Absolutely food is huge on that I mean increases your blood pressure eating kliesch, your blood sugar. And all those things increase your cortisol levels, your stress hormone, then you have a food coma crash, if you’ve eaten too many carbs, and then that’s no good for energy levels, and you can’t get stuff done.

    Bill Gasiamis 35:14

    I mean, food is probably one of the most critical things that people can do to manage their symptoms of stroke and feel better. The better you eat, the better it is, the less inflammation that occurs in the brain.

    Bill Gasiamis 35:27

    The better that neurons rewire, and re-fire to give you back movement, and all that kind of stuff. So it’s a massive part of the recovery. Of course, it’s a massive part of dialysis treatment as well. How often is dialysis? And how many hours does it take?

    Bryan Caldwell 35:44

    10 and a half hours every night?

    Bill Gasiamis 35:46

    And is there a way to make it five hours, say midday, and then five hours at midnight? Was there an option for that?

    Bryan Caldwell 35:59

    I think Brittany could talk on that. She knows she’s more educated than I am.

    Brittany 36:03

    I don’t think so because it runs cycles back to back to back. And so there’s four cycles, which totals the 10 hours. But I think it works out better, because he just, well, if he slept through the machine beeping, he would be able to sleep throughout the night, and then he’s free to do whatever he can.

    Brittany 36:23

    Versus going to a clinic three times a week or five hours. So that’s why I kind of made the decision for him when he was in the hospital that PD, which is peritoneal dialysis would be a better option for him because he needed to go to those therapies he needed to go to doctor’s appointments.

    Brittany 36:40

    And then to have to worry about going to dialysis three times a week, it just would have been really hard. On top of that he needs a transplant and hemodialysis was very hard on the heart. And so it could have affected him heart wise, and he’s already got on top of everything else a 40% blockage in one of his arteries in his heart. So we didn’t want to make anything worse.

    Bill Gasiamis 37:04

    Bryan, stop it with all the drama, please.

    Bryan Caldwell 37:09

    You know, everyone says that, you know, God was pretty hard on you, is he ever gonna give you a break?

    Bill Gasiamis 37:13

    I don’t think God’s got anything to do with it. I feel like you’re the guy that’s going have to take responsibility here. And sort yourself out.

    Bryan Caldwell 37:25

    That’s definitely true, I mean, I think that’s part of my recovery is having to realize that I didn’t take responsibility for basically my health, like, I’ve got myself here. This is definitely 100% preventable.

    Bryan Caldwell 37:40

    If I would have made better decisions when I was younger. But you know, as I got older and didn’t really watch my diet kind of ate whatever. I kept up on my insulin and my sugar, but I just ate whatever I wanted. It’s like, it wasn’t good for my health overall.

    Second Chances


    Bill Gasiamis 37:58
    God, wants you here all the shit that you’ve done to your body, God’s going hang on a sec, your time is not up yet. Bryan, you know. There’s stuff to do. There are things you need to learn and discover and teach your son. And you know, and work out with your wife. And God’s going, you know, like, let’s go again, let’s have another trial, let’s sort it out.

    Bryan Caldwell 38:20

    It’s definitely changed my perspective on life. Like, I look at it, as you know, I’m not going to let this chance be the end of me, this is another chance of life that I get to pursue, I get to make the most of my journey.

    Bryan Caldwell 38:38

    You know, make the most of other people’s journey, which I’ve been told that my story is inspiring, and, you know, my recovery is much better than they expected. And, you know, it all comes from hard work really.

    Bill Gasiamis 38:52

    Yeah. Hard work. Definitely a lot of luck. Even though it seems like you’ve been unlucky, actually, you’ve been extremely lucky to still be here to within a year be on the podcast talking about it.

    Bill Gasiamis 39:04

    Like you’re looking healthy and fantastic. I know that you may not feel that way every day, but you’re looking great. And that’s a great start. You got a supportive wife who’s done everything and she’s just moved heaven and earth to make sure that you’re well and everything’s okay.

    Bill Gasiamis 39:19

    I mean, you’re lucky boy, you are such a lucky boy. I love that you’re here talking to me about it. And not only that, I mean, I know that some people have a worst time with a stroke and recovery and all that kind of stuff. But you know, if this happened 50 years ago, when our parents were growing up, they wouldn’t have survived it the people back then wouldn’t have been around would they?

    Bryan Caldwell 39:46

    I think my Millennialish mind kind of focuses on my stroke mind and it makes me look at things different.

    Brittany 39:57

    He’s stubborn, In other words, I’m not gonna be like this the rest of my life. And the funniest thing that I think is before his stroke, I would try to talk to him about his diabetes, or you know his insulin or get him to go to the doctors.

    Brittany 40:14

    And it was I know nothing about diabetes. I know nothing about anything that he’s going through. When he came home from a hospital, it was like, Hey, here’s your lunch, I’m giving your insulin, no questions about how much I was giving him, no questions about what I was giving him. And it’s like every single day is his levels were perfect.

    Bill Gasiamis 40:34

    Why don’t we listen to our spouses, though, it doesn’t matter who I spoke to, you know, we’d never listened to them. It’s like, Yeah, shut up, leave me alone, stop nagging. We don’t ever listen.

    Bill Gasiamis 40:45

    And usually our spouses are coming from a good place. They’re coming from a caring place. Maybe they don’t know exactly how to express it to show their caring concern for your health. And they kind of sound nagging and whinging and complaining. But why don’t we ever listen, Bryan?

    Bryan Caldwell 41:04

    I don’t have a perfect answer to that. But my answer for myself personally, is I looked at that she was younger than me, so she didn’t experience more than I did. And over time now, especially my perspectives change.

    Bryan Caldwell 41:18

    I mean, I see that she’s more responsible. She, took control, she stepped up to the plate. I mean, I can trust her with anything and everything now, before it was questionable.

    Bill Gasiamis 41:33

    How much younger?

    Bryan Caldwell 41:35

    She’s eight years younger.

    Bill Gasiamis 41:36

    Yeah, she’s eight years younger. Now she has to put up with all the sexy stuff in the bedroom, you know, the dialysis, the beeping and all that kind of stuff. Come on, man, you know, you could have done better.

    Bill Gasiamis 41:49

    You should have done better. What’s that? Like? Actually? How has it impacted intimacy and all that kind of stuff. If you don’t want to talk about it too much. You don’t have to.

    Bryan Caldwell 41:58

    I’m okay with opening up. She’s not so much opening up. But I’d say you know, it’s definitely affected both of us in a sense, but more her than myself. I’d say physically, it’s affected me a little bit.

    Bryan Caldwell 42:13

    But you know, I have my days where I tell her like, Hey, I’m having an on day. Like, let’s go. And she’s like, you know, all the typical excuses.

    Bill Gasiamis 42:24

    Headache.

    Bryan Caldwell 42:26

    Yeah, you know, I’m hungry. I didn’t eat today. I didn’t exercise. I work too hard, you know, all those. And for me, it’s like, Hey, this is once in a blue moon, I’m gonna feel like this. So let’s do it. But her on the other hand, it’s like, you know, she looked at me basically before, like, Hey, I’m a lot of fun. And that’s just the way I am.

    Bryan Caldwell 42:51

    And you know, I’m very bubbly and outgoing. And, I was very affectionate before, but she’s never been an affectionate person. So now that with my stroke, I’m actually a lot more affectionate. So I’m actually like, I’d say I always been saying, like, five years ago, I was like, you know, I’m the girl in the relationship.

    Bryan Caldwell 43:12

    I like to cuddle. I like to laugh. I like the hand holding. I like kisses. I like all that stuff. She hates it. You know, it’s like when I reached out to kiss her. She’s like, eww your breath stinks, like, stay away from me. And I’m like, come on, I just want a kiss and she’s like, no, get away.

    Brittany 43:31

    It was hard at first, because I always told him, he’s like a stage five clinger. Like I would go in my office to work. And I have a bed right behind me in my office, because it was like our guest room slash office. And he would come in here and fall asleep on the bed.

    Brittany 43:51

    And I would be on meetings, and he’s behind me snoring. And I’m like, get out of here. Like, give me space. Like, this is just different for me. When you didn’t have your stroke, you were at least out you’re working.

    Brittany 44:03

    You we’re outside working on your truck, you were just doing something. I’m like, you never leave like as wrong as that sounds. You’re always here. So and he’s like, wanting to cuddle and wanting like, just get away.

    Bryan Caldwell 44:14

    Like now it comes to the point where you know, I’m well enough to go and do stuff and I I try to stay out the house and keep busy and do different tasks. So now when I leave, she’s always calling me.

    Bryan Caldwell 44:25

    Where are you? When are you going to be home? I want you home. You know she does the complete opposite of what she was telling me. And just having a good time with it making sure she’s bugging me now because I bugged her so much before.

    Bill Gasiamis 44:41

    Yeah, I love it. So some of it. Actually, Brittany, you’re worried about him and thinking that maybe something’s gone wrong. If you haven’t heard from him for too long. Is it something like that?

    Brittany 44:53

    Yeah, I think and that’s what I was struggling with a lot when he first started driving in August is he would leave Even I’m like, where are you at? And they he wouldn’t answer. He had this he would take his phone everywhere he went, but he was horrible at answering his phone.

    Brittany 45:08

    And so I’m sitting there stressing out what if you have another stroke? What if something happened, his blood sugar is low. And so it was more of me worrying. And then it It freaked me out even more driving around with our seven-year-old, I don’t want something bad to happen.

    Brittany 45:23

    And then he feels he has to now take responsibility. And it just happened. We went to an event a couple of weeks ago, and his sugar was so low. I was like, hey, I’ll go get the truck, we can leave. And so I left our seven-year-old inside with him to watch him because I didn’t want to leave him there and have him pass out.

    Brittany 45:44

    And my seven year old is calling me on his watch because he has like a phone watch where he can call me and him and he’s like, but he handled it so well. I think you need to come in here right now. I’m like, Hey, I’m trying to find a parking spot. Just give me a few minutes.

    Brittany 46:00

    And he’s like he’s about to pass out. Can you please go get help, like the most calmest voice. And I’m like, okay, you know what, I don’t even care. I’m parking in Brazil. And they can tell me for all I care. So I ran back inside.

    Brittany 46:12

    And it was like I had gotten in I got the paramedics because I just needed like glucose tablets or something to get his sugar up. And I think he said at one point, it was like 37. So he was on the verge of passing out if he wasn’t trying to pass out. And so things like that just freaked me out and then having to put our son in that situation too. It’s tough.

    Bill Gasiamis 46:33

    That is tough. It’s tough for anybody, let alone a seven year old. Kids are resilient. They are troopers. They know how to help out when they become a teenager he’ll be a complete pain in the ass right?

    Bill Gasiamis 46:47

    But still, isn’t it amazing that a seven year old can instruct you give you all the information that you need. Update you let you know what’s happening. And just do it as if you know, it’s just part of his day like regular stuff. You know that to look out for this old bloke who can’t do anything for himself right now?

    Brittany 47:09

    Yeah. And he does that at first, it was a hey, let’s run to the store. Let’s go here. And he’s like, but what if his sugar goes low? Like, what if something happens to him? And I’m like, It’s fine, because I made him get a continuous glucose monitor. So the ducks calm. And I downloaded the app on my phone.

    Brittany 47:28

    Because he didn’t have that before the stroke. And I tried to get him to many, many times. He just didn’t do it. So I have the app on my phone. So anytime he’s going low, if he doesn’t text me back right away, if I’m like, Hey, are you eating something?

    Brittany 47:41

    Are you drinking something? I’ll call them call them call because I don’t want them to be sleeping to where he’s so low. He passes out. I don’t want to have to go through all of that again.

    Bill Gasiamis 47:50

    Yeah. And that gives you alerts as well, doesn’t it when it’s noticing too low or something’s up? Yeah, it does. Yeah, that’s a bit of relief. And yeah, I know, I was saying about checking in all the time. You know, that was one of the things that was happening in our house, people were wondering, all the time where I was what I was doing, am I okay.

    Bill Gasiamis 48:13

    Especially when my wife had to go back to work at some point and leave me at home alone. I had a couple of falls, which she found out about, you know, when she came home, because luckily, they weren’t too bad. But I did tell her that I fell. So then there was concerns about that. And there’s all sorts of concerns and things you need to take into consideration. Technology plays a big part in helping out doesn’t it?

    Brittany 48:39

    Yes, so I got a camera for our loft, and I got a camera for our living room for our son because he was doing a lot of very questionable things when we weren’t around. And he would sneak away when we were doing dialysis. And we would find stuff under the couch and you know, all of this random stuff.

    Brittany 48:57

    But I actually use it for him too. Because I’m like, Hey, is he okay? Like if I’m gone you know? Is he just sleeping on the couch? Like, that’s fine. And I actually plan to travel here pretty soon for work.

    Brittany 49:11

    And I think it’ll just make me feel a little bit better. I feel like a complete stalker, like, no question about it. But also I’m okay, because I know that if something does happen, I can easily see, hey, he’s on the ground. Let me call for help.

    Bryan Caldwell 49:28

    And the good thing is we have all these very supportive neighbors. So anything if I need anything, we can basically go to any direction and they’re there.

    Bill Gasiamis 49:37

    So community support is really high. And you guys have got good relationships with everybody?

    Bryan Caldwell 49:45

    Definitely.

    Reaching Out – High Blood Pressure & Stroke

    Bill Gasiamis 49:47

    Yeah, that’s a relief. That’s such a good thing. A lot of people don’t have that either. It’s such a struggle for some people not to have support and not to have a community. What about stroke? Did you get curious about stroke? and needing to find stroke survivors I needed to learn from them. Who was it that reached out to me? I can’t remember.

    Bryan Caldwell 50:06

    That was me actually, I was at the gym, and I’m struggling with motivation and inspiration. So I was looking just on Apple podcasts. And yours was the first to pop up. So I listened to a bunch of different episodes. And I had reached out saying, you know, this is very interesting. I want to jump on there and tell my story.

    Bill Gasiamis 50:25

    Yeah, does it help to tell your story?

    Bryan Caldwell 50:28

    I would say, I just want to help others. It doesn’t help me necessarily, but I want to help others. I actually got bored within my first few months of being home. So I without it’s not current, but back in the day, I started charity. So I actually was able to give away about $6,000 to different people that are struggling financially.

    Bill Gasiamis 50:56

    Thats $6,000 that you needed for your self imagine and you were giving it away?

    Bryan Caldwell 51:01

    Luckily, we’re fairly well off. So we’re not too worried. But lots of people, you know, they have struggle paying co-pays. Like here in the States. I don’t know, do you have universal health care in Australia?

    Bill Gasiamis 51:15

    We do.

    Bryan Caldwell 51:16

    So we have to pay over here in the States. So a lot of people struggle with paying $20 $50. So you know, just like when I saw people like, I was in the stroke support group on Facebook, a couple of different ones. So I just saw like people here and they’re talking about, you know, I just can’t pay for my co-pays this month.

    Bryan Caldwell 51:39

    And, you know, things are so hard. And I just, you know, just I’ve reached out to a whole bunch of them. And some of them were reluctant to accept the money and say, Thank you so much. You’ve changed my life, and this and that. Some people thought it was a scam. So they called me a scammer. And I’m like, that’s fine. Call me whatever you want to call me. But you don’t get no money.

    Brittany 52:00

    So, it wasn’t our money. It was actually friends who wanted to just donate and help other people. And I thought it was actually pretty nice. Because when people would write back and it was like, you know, to still some people still will message him just from time to time and say, How are you doing? You know, so I think it’s just an interesting thing.

    Bryan Caldwell 52:26

    And he spoke about telling your brain positive things and your brain reacts in a positive manner. So that’s basically how I kind of approach things is, you know, stay in a positive direction, tell myself positive things. Don’t listen to my negative thoughts, because that gets me nowhere. And that’s a realistic thought.

    Bill Gasiamis 52:49

    I used to have them too. It’s okay to have them. Just don’t give them too much. airtime. That’s all.

    Bryan Caldwell 52:55

    Yeah, any power.

    Bill Gasiamis 52:56

    Yeah, Cory was in Episode 173. He’s a real cool dude. And he’s doing some really good work, trying to work out whether or not cannabis oil can be used to support people recovery, after stroke, and probably lots of other things.

    Bill Gasiamis 53:13

    And I’m not sure how he’s done it, but he’s actually doing proper studies where they’re researching, and they’re gonna have a proper study, and then a proper report after it. And it’s like, really awesome stuff. Cory is amazing. So he too, he’s kind of like, you know, he’s like the surfer dude.

    Bryan Caldwell 53:31

    It’s a good feeling. If you’re in touch with your your emotions. So with your stroke. So when you do nice things, it makes you feel a lot better internally.

    Bill Gasiamis 53:46

    It does. It makes a big difference to the other person as well. They get a real surprise and a shock and they feel like you know, wow, Humanities alright, someone did something nice for me.

    Bill Gasiamis 53:56

    And I didn’t need to pay it back or do anything for it. So Brittany, what’s it like for you now to remember how you kind of were before what what your thought pattern or process was like before?

    Brittany 54:12

    I just don’t think it’s the same at all. I think I’ve changed and probably in every way but not I would say not in a worse way. I think I’ve grown up and matured probably a lot more in a lot of different ways that I probably wouldn’t have this quick. And I just, I don’t know, it’s different.

    Brittany 54:35

    I mean, he talks about giving money away and I’m like, Well, who’s like a caregiver. I want to go on the caregiver group because there’s a lot of people struggling and I go on those groups and, you know, I’ll read their stories and then I’ll almost feel thankful that he yes, he had a stroke, but he’s still here because people will talk about how you know, their stroke survivor that they have to take care of will yell at them.

    Brittany 55:00

    And we’ll cuss at them. And we’ll throw things at them. And they’re abusive, and I don’t have to deal with that. So it’s unfortunate that he had a stroke. But he’s not nearly as severe as I would say a lot of other people that are out there. And I think he’s pretty fortunate for the circumstances that he was in altogether.

    Brittany 55:22

    And when he had gotten to the hospital, they had said that his kidney function was at 5%. So it’s almost as if it was like, probably a couple more months probably would have went by and he would have just passed in his sleep from kidney failure. So it’s unfortunate that he had a stroke, but it’s almost a good thing that he had a stroke.

    Bill Gasiamis 55:41

    Yes. Yeah. I hear you, it’s kind of like a blessing in disguise.

    Brittany 55:46

    Yeah.

    Bryan Caldwell 55:47

    It’s a wake up call for sure.

    Bill Gasiamis 55:49

    Yeah. Are you a better mum, because of all this stuff?

    Brittany 55:54

    I.

    Bill Gasiamis 55:56

    You’re a great mom. Don’t get me wrong. I’m not saying you weren’t. But are you a better mom, not better to your kid or, you know, changes clothes better.

    Brittany 56:06

    Like I said, Before, I just was so into work. I just didn’t want to deal with it. And now it’s like, let’s go do this. Let’s go take him here and just have fun or let’s sit there and play Uno, even though he gets mad and tries to steal the wildcards.

    Bryan Caldwell 56:23

    I think that’s where I still have my cognitive ability was, you know, I Ripper pretty hard for her like, you know, because she always says, Oh, you’re the cool parent. And and I’m just, you know, chopped, what he’s called chopped liver, chopped liver over here. So, so our son, Logan, Logan doesn’t even like to hang out.

    Bryan Caldwell 56:44

    And I’m like, That’s because you don’t do anything fun with them. You don’t participate. I’m like, go do stuff with them, you know, and she doesn’t now, she’s more aware than she used to be. So I think that he’s, you know, he tends to use us against each other at first.

    Bryan Caldwell 57:01

    So, you know, we figured that out, and you know, we’re working with each other rather than against each other now. So I think that she is, you know, that’s her growing in a way, like, you know, as you get older and figure things out, and realize that you could have been better than why you were, that’s her, you know, getting to age basically.

    Bryan Caldwell 57:23

    So I’m still saying, Hey, she’s 27. And still, there are moments where I’m like, you know, palm to the forehead, like, why are you acting like this? Then I remember, like, you know, just because of my stroke, and my perspectives a little bit different. You know, I probably realize I’m a little bit of a pain in the ass too, and she’s reacting to the way I’m acting.

    Parenting At a Young Age


    Bill Gasiamis 57:45
    For sure. You are Bryan 100%. And when you’re 20, and you have a kid, or 20, I mean, your barely, you were just a kid not that long ago, like, you’ve got no idea I was a young dad, I was 22, when I had, my wife gave birth to our first son, I had no idea, I had no idea for good.

    Bill Gasiamis 58:11

    Man, the best part of the first 10 12 years, I had no idea what the hell I was doing. His younger brother is four years younger than him. And I was getting it wrong a lot of the time and ego was a big part in my life, you know, and it was the stroke that made me realize at 37 that I need to make some things good, I need to go back and repair some of the stupid things that I said, did, behave like.

    Bill Gasiamis 58:36

    And kind of let them know that I’m going to try and change and be a better version of a dad, I was a pretty good dad. But I just, I had didn’t have a lot of resources to handle complex situations.

    Bill Gasiamis 58:52

    So I used to default to the one dumb thing, which was yelling all the time and screaming and making them feel like they couldn’t speak up and give me their perspective was never a conversation a two-way conversation about what they thought and what I thought it was always about how I saw it, and what the rules were and how there was no getting around them and all that kind of stuff.

    Bill Gasiamis 59:14

    And I was just a bit of a tense hardass. And I sort of started to let them speak and pay attention. And it took a while to undo all the mess that I had made, you know, to make them feel comfortable with talking to make them feel comfortable with saying stuff that they knew I wasn’t going to like to hear and then to me not to respond and act like an idiot again, it was to stop them.

    Bill Gasiamis 59:39

    Just give them a space to express themselves, you know, and tell them and allow them to tell me when I was being stupid that hey, you are actually being stupid to me right now. You better stop that. I may actually take that as a really good thing that I’m being checked, my behavior is being checked by them.

    Bill Gasiamis 1:00:02

    Because I’m making them feel bad for some in a way that’s not productive or supportive of their growing and learning, because they’re teenagers, and they’re learning and they’re growing. And I wasn’t. I think that our path would have been completely different.

    Bill Gasiamis 1:00:21

    If I continued to be that kind of guy, they just would have been more disconnected from me and more and less likely to come to me when they needed help. And that really scared me, you know, I really wanted to make sure that I was going to be able to be there when they needed help, and they did something stupid as a teenager does.

    Bill Gasiamis 1:00:39

    You know? So, when you’re 20, and you have a kid, and you’re just a kid yourself, it takes a lot of growing up. There’s so much to learn at 20 between 20 and 30, there’s so much to learn, especially when you become a mum, that young. Brittany, do you relate to that? Does that kind of feel similar?

    Brittany 1:00:59

    Yeah, I think so. Like I was somewhere the other day. And I think the lady had asked me Do you have kids? And I’m like, Yeah, I’m gonna have an eight-year-old this year. And she was like, what? You look like you’re maybe 20.

    Brittany 1:01:11

    And I’m like, I know, I sometimes don’t believe that I have an eight-year-old either. So I was very young, very immature, naive. And I think just as I’ve grown as a person if there’s a lot that’s changed, whether that’s in our relationship and the relationship that I have with him.

    Brittany 1:01:31

    There’s things that I could see last year where it’s like, you know, he was going through a lot, and how do you not get mad at a kid for the things that they were doing? Because then I was also feeling bad at the same time, but then it just became a struggle, because you also have to be a parent.

    Brittany 1:01:50

    And tell them no, that’s not right. Like, there was one time, he went to the grocery store with him and just stole gum, because he just wanted gum. And we made him go back and return it to the manager, and he just bawled his eyes out. But it’s like, Hey, you’re you can’t do that. And you’re not going to just get away with it. Because we’re all going through a tough time right now. Otherwise, he’s gonna continue getting away with it.

    Bill Gasiamis 1:02:14

    Yeah, yeah, so when I’m not shaved say a few gray whiskers, but I don’t have any gray my hair. So when I shave, you know, people think I’m 47 People sometimes say to me, you look like you’re maybe in your late 30s, something like that. So I still, and then they say to me, How old is your son, I’ll say my oldest son’s 25.

    Bill Gasiamis 1:02:36

    And they’re like, Woah, you don’t look like you got a 25 year old that that’s a really lovely thing. It’s good that it was so difficult financially, when I had kids young, we did a tough for a good 1015 years. We didn’t go without, but it was really tough to cover all the bills and all that kind of stuff.

    Bill Gasiamis 1:02:56

    But now my kids, I’m 47. My kids are 25 and 21, the 25-year-old moved out less than a year ago. And the 21-year-old is looking at moving out already. Me and his mum their mums a few years older than me, she’s three years older than me. And it’s like, we’ve kind of like free of them and we’re only around the 50 mark.

    Bill Gasiamis 1:03:19

    It’s really cool to have this relationship and a very small generation gap between us and them, we kind of get most of their stuff and their lingo and their technology, we’ve kind of still there.

    Bill Gasiamis 1:03:36

    And we have these really great conversations with our kids that I never would have expected at 25 when they’re 25 Now there’s so much good has come from it that I just never in my wildest dreams expected that it would be this good. So you got a lot of amazing things to look forward to and even 34 Bryan, it’s not that old, you know, to have an eight-year-old. That’s not that old.

    Bryan Caldwell 1:04:02

    So I actually last.

    Brittany 1:04:07

    December 2020.

    Bryan Caldwell 1:04:08

    Yeah, December 2020, about two, three months before my stroke. That’s when I had adopted basically her son. So that’s when Logan became my son properly. And I decided then, like, you know, I’m accepting the responsibility to set a better example because, you know, I never thought about that before.

    Bryan Caldwell 1:04:29

    I was a dad but I wasn’t fully a dad yet. So like, you know, so now my perspective is different. I’m like, you know, I have to while I’m here, it’s my second chance to set a better example. So I even told her all the time, like, we need to not fight we need to, you know, close the door.

    Bryan Caldwell 1:04:50

    Not let him come into the conversation when he’s not supposed to not let him eat what he wants to eat all the time. But then again, you know, I’m like a kid on the inside. I let him do whatever he wants to do at certain times. And, you know, I’m his buddy sometimes.

    Bryan Caldwell 1:05:05

    But when it comes to being a dad, I step up. And, you know, I also give him a hard time about, like, doing the right thing and, you know, chiming in and, and helping out when he’s supposed to, and he does, he does a great job.

    Bryan Caldwell 1:05:20

    And I think that’s what’s raising him to be a better kid is I think my stroke has impacted that times 10. Like, in all honesty, he’s seven and causes a lot of trouble within its own right. But he’s a great kid. He listens.

    Bryan Caldwell 1:05:36

    He does what he’s supposed to, he does his homework. He helps out he, I mean, even with other kids, he’s motivating. He likes to make friends. You know, stuff that kids should be doing. They don’t sit around and if someone’s hurt, he’s going to help them. He’s that type of kid.

    Bill Gasiamis 1:05:53

    Just wait until they become teenagers, all those lovely things they do. It just gets buried a little bit for a few years, and then it comes back. Alright, so hold on. It’s about 8 9 10 years worth of pain and suffering that you’re gonna go through. But he’ll come around.

    Bryan Caldwell 1:06:07

    She said he’s not allowed to have girls over until he’s 35. And I said, Yeah, you watch in a couple of years. He’s gonna have a girl over, he’s going to becoming to me saying, Hey, he calls me babe, because that was his first word, because she calls me babe. He’s gonna say, Hey, babe, I’m gonna have a girl come over and watch movies is that okay?

    Bryan Caldwell 1:06:29

    And I’m gonna say, Yeah, sure. come on, over. And I think it’s good because when I was a teenager, I was a reckless teenager. I caused all kinds of trouble. And my parents had always told me, you know, when you have a kid, you’re gonna get it back tenfold when you’re older.

    Bryan Caldwell 1:06:47

    And sure as hell I’m getting it back. So I can remember things I did. So when I see him starting to do things, I’m like, Yay, I can call it out and say, you know, I know you’re lying. I know that this is going to happen. I know that. Don’t even try and play around the bush.

    Bill Gasiamis 1:07:04

    Yeah. It’s good to remember the things that you did that was stupid when you were a teenager, because then you’re not so hard on the dumb decision that a teenager has made just now you’re kind of like, Alright, I know what you did. I know why you did it.

    Bill Gasiamis 1:07:21

    Now, let’s talk about how we’re not going to do that again, or how are we going to improve or whatever. And that’s really good that you remember how you got yourself into a stupid situation when you were a teenager. I certainly try and do that. And sometimes my kids are shocked when I say to them, you know, that thing that you did? That was really bad. I’ve done that as well.

    Bryan Caldwell 1:07:42

    I think it’s easier to talk to a seven year old than a teenager.

    Bill Gasiamis 1:07:46

    Ah, yeah, yeah, I agree. I agree. It changes. It does. It’s really difficult. But look, you’ll be fine. Brittany, forget about the thing about the girl thing, it’s not going to happen. He’s going to do what he wants in that situation.

    Bill Gasiamis 1:08:01

    And you’d rather have them, at home than somewhere else. I think that I learned I was better off they were at our house being stupid, or doing whatever having fun. Than somewhere where they weren’t safe or whatever. And it’s like, okay, I’ll live with that. It’s okay. But, so you’re gonna before we said that Bryan was lucky that Brittany was around. But Brittany sounds like she’s a little bit lucky too Bryan?

    Bryan Caldwell 1:08:35

    I would say that I’m a catch. But I won’t try to be too full of myself.

    Bill Gasiamis 1:08:45

    I love it. Guys, it’s been so fun talking to you. Thank you so much for reaching out and ask to be on the podcast. I really appreciate it. Thanks for being open and coming on and talking about all sorts of things that are difficult and hard and whatever. Heal well feel like you’re well on the way hope your recovery goes well.

    Bill Gasiamis 1:09:07

    I hope everything goes well with the kidneys and the blood pressure and all that stuff. Brittany, you’re doing amazing job. Well done. Congratulations. Take time out for yourself. Give yourself heaps of Britney time without Bryan.

    Bill Gasiamis 1:09:21

    Now that you’ve got all the surveillance gear in action. Catch up with the girls, get your nails done, do all that stuff. Leave him at home every once in a while. And yeah, feel free to reach out anytime and I look forward to hearing from you whenever you feel like it.

    Bryan Caldwell 1:09:39

    Well, thanks for having us on. I appreciate everything you do. That’s why I reached out. So I just want to thank you for everything.

    Bill Gasiamis 1:09:47

    Thanks. Thanks, Brittany.

    Brittany 1:09:49

    Thank you. It was nice talking to you. Nice meeting you.

    Bill Gasiamis 1:09:53

    Thanks for joining us on today’s episode. I told you it was gonna be fun and we had a lot of fun getting to know each other. These two are such a great team working together to overcome all their challenges taking things in their stride, stepping up where they need to taking responsibility.

    Bill Gasiamis 1:10:12

    I just really, really love this episode. So thank you for being here. I hope you got a lot out of it too. If you’re watching on YouTube, please comment, like, share, give the show a thumbs up subscribe. Also hit the notification bell so that you can get notified of new episodes.

    Bill Gasiamis 1:10:31

    Any comments, any interaction with the show, wherever you find it will help rank better. And therefore, when the shows ranking better, it’ll be found easier by other stroke survivors. It’ll make a massive difference to the way the recover their recovery might go. It’ll make a massive difference to their caregivers. You’ll help them feel less alone and hopefully help them reach out and get some support. So thanks so much for listening. I really do appreciate you and I hope to hear from you soon.

    Intro 1:11:05

    Importantly, we present many podcast designed to give you an insight and understanding into the experiences of other individuals opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

    Intro 1:11:22

    All content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill gassy armas, the content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.

    Intro 1:11:44

    The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.

    Intro 1:11:59

    Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional.

    Intro 1:12:13

    If you are experiencing a health emergency or think you might be, call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department. Medical information changes constantly. While we aim to provide current quality information in our content.

    Intro 1:12:29

    We do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide however third party links from our website are followed at your own risk and we are not responsible for any information you find there.

    The post High Blood Pressure, Stroke & Kidney Failure – Bryan Caldwell appeared first on Recovery After Stroke.

    1 hr 18 min
  • Stroke After A Brazilian Jiu-Jitsu Choke – Jake Straus

    Experiencing a stroke at age 24 from a Brazilian jiu-jitsu chokehold was a major setback for Jake Straus’ health. Recovering is going well and recently Jake got back into the ring and is preparing for competition.

    Instagram

    Highlights:

    02:32 Introduction

    07:07 Stroke After A Brazilian Jiu-Jitsu
    14:52 The Mental Pain
    21:46 Midlife Crisis
    25:48 Space Brownies
    35:33 Jiu-Jitsu As a Self Defense
    42:02 Raising Awareness About Jiu-Jitsu And Stroke
    52:29 A Better Perspective
    58:49 Keeping The Humor
    1:10:33 Knowing When To Tap Out
    1:21:37 Accepting Defeat
    1:28:04 There’s More To Life Than Stroke
    1:30:28 Bill’s Day Out

    Transcription:

    Bill Gasiamis 0:00

    Most people who talk about weed classified as a drug, there’s no middle ground for it. And then they kind of say, well, you know, weed’s bad. It’s always going to be bad. But you had a weed brownie and you had this really amazing experience.

    Jake Straus 0:14

    Yeah. And at the time, I was terrified, and I hated it. And I wanted it to end. But one of the most important things that happened to me and I think it’s because I, and maybe a lot of people, all we ever think about is what we want, like, how can this serve me?

    Jake Straus 0:30

    And how can I get from here to here? And when that happened, when I was on that brownie, I just was looking at myself, like way more introspective than ever before. It’s like, again, it’s like, who am I? And I’m not perfect, you know, I’m far from it.

    Jake Straus 0:51

    And I guess I just never really sat back and looked at myself, you know, I kept feeling sorry for myself because I had a stroke. And because I can’t do this and do that. But I started actually thinking about other people’s feelings, I suppose.

    Jake Straus 1:06

    And the way that I affect them, and I just really didn’t want to be a negative effect on people. I really didn’t. I wanted to if people were gonna remember me, I want them to remember me positively.

    Intro 1:22

    This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.

    Bill Gasiamis 1:35

    Hello, and welcome to another episode of the recovery after stroke podcast. I am Bill Gasiamis, your host and recently Spotify released a new feature, which allows people to rate their favorite shows, in the same way that the apple podcast app allows it.

    Bill Gasiamis 1:51

    So if you think that the show deserves it, I’d love it if you leave us a five-star review. This will help the show rank better on search engines. It’ll help newly diagnosed stroke survivors find the show and it could make a massive difference in their recovery.

    Bill Gasiamis 2:05

    So go to your favorite podcast app share what the podcast means for you it literally will make a huge difference not only to stroke survivors but also to their caregivers who as you know do it tough when they are have to deal with somebody who is recovering from stroke after being a regular person and just going about life and then suddenly becoming a stroke survivor caregiver.

    Introduction – Stroke After A Brazilian Jiu-jitsu


    Bill Gasiamis 2:31
    Now this is episode 188. And my guest today is Jake Straus, who got in touch with me after he listened to an episode of the recovery after stroke podcast with Chris Martin who was on episode 175. And Chris is a Brazilian Jiu-Jitsu participant coach and he experienced a stroke as a result of a chokehold.

    Bill Gasiamis 2:56

    A technique that creates the person who’s being choked out, to tap out or to submit and therefore to lose the bout. Now Jake also experienced an ischemic stroke caused by a vertebral artery dissection that was caused by a chokehold. And it seems that it’s a really, I think that’s happening in the world of Brazilian jujitsu as the sport is becoming more and more popular, that people are being injured.

    Bill Gasiamis 3:28

    Now, what that means is that I’d love it if you shared this episode so that we can raise awareness in that sport, about how people become injured in the neck and in the carotid arteries or their vertebral arteries.

    Bill Gasiamis 3:43

    And as a result of that experience, ischemic strokes are caused by clots that occur after a tear in one of the main blood vessels that lead to the heart gets damaged from being pressurized or being squeezed by the arms of somebody in a Brazilian jujitsu bout.

    Bill Gasiamis 4:06

    So with that being said, I am really keen to raise awareness in this space of Brazilian Jiu-Jitsu. So please do share with anyone that you know, that is in the sport, and hopefully will make a difference at least help those guys recognize the signs of stroke and then go through the process of helping people who may be experiencing signs of stroke.

    Bill Gasiamis 4:29

    So when Jake experienced his stroke, he had to spend time away from his beloved martial art, which tested his identity and made him reassess who he was, and how he participated in the world. It brought him closer to his family and friends and made him a better competitor and a better human being.

    Bill Gasiamis 4:49

    Jake Straus, welcome to the podcast.

    Jake Straus 4:52

    It’s good to be here.

    Bill Gasiamis 4:54

    You know what I do to get people back really quickly that I haven’t spoken to For a long time that I’ve connected with so much, is I press record, I get them onto a podcast like a week ago.

    Bill Gasiamis 5:08

    And then we talk for an hour and a half. And then I tell them, I forgot to press record. So that I’ve got to get him back in a week so we can talk again. I so much enjoyed our conversation literally a week ago that I forgot to press record on. I’m just so glad that I was able to get you back again.

    Jake Straus 5:27

    Yeah, man. I regret nothing. You know, that was, it was a really good talk. I’m sure we’re gonna have another good conversation.

    Bill Gasiamis 5:37

    Absolutely. The interest in having you come on board to the podcast was as a result of an interview that I did with Chris Martin, who is a jiu-jitsu enthusiast to say the least. And he’s a coach and is somebody that’s been around the sport for a long time.

    Bill Gasiamis 6:00

    And he was injured because of what’s commonly referred to as a choke where people in the sport in order to submit somebody will put pressure on the carotid arteries or the vertebral arteries heading towards the neck to stem the blood flow so that they can pass out or tap out before, hopefully, they pass out.

    Bill Gasiamis 6:29

    And Chris was saying that the issue for him he believes is that he damaged one of his arteries, and as a result of that, he created a tear, which caused a clot and cause a stroke. He’s back at training. And he’s doing really well, but he wants to spread awareness.

    Bill Gasiamis 6:48

    He wants people to know about the risks of carotid artery dissections. Especially in the sport of jiu-jitsu, because it’s, you know, where he hangs out. It’s where all his friends are, it’s where all his mates are. And he was really concerned about that issue.

    Stroke After A Brazilian Jiu-Jitsu

    Bill Gasiamis 7:07

    So he came on, he approached me to come onto the podcast. And as a result, he has started raising awareness, because you found the podcast, and you felt that it was appropriate to reach out. Tell us a little bit about what happened to you.

    Jake Straus 7:23

    Oh, well with me. I competed at a tournament. And it was a pretty regular day, it went really well. It was successful for me. And right when I had gotten home about two and a half hours after the tournament, I just went cross-eyed.

    Jake Straus 7:46

    And while I was just looking at the floor. And you know, I got rushed to the ER by my friend and ended up finding out that I had a clot in my brain. And it took a little portion of my vision. But that was the only part of me that was affected by the stroke that I had.

    Bill Gasiamis 8:10

    What’s it like when one of your eyes is cross-eyed? Sitting down? How does it affect your stability? How does it affect you? One eye’s is working properly and one eye’s facing the other direction?

    Jake Straus 8:23

    Yeah, it’s almost worse than blindness, because you can see and it’s a completely distorted type of vision. So everywhere that you think something is it actually isn’t and what I always tell people is the sidewalk was on top of the grass.

    Jake Straus 8:39

    So I was completely unaware of where I was stepping. When I was walking and my friend, he grabbed my hand and was guiding me because I just couldn’t see properly. You know, I could see but everything I was seeing was in the wrong spot. And it was really terrifying. I had no idea what was going on.

    Jake Straus 8:57

    It just kind of started and I thought that’s weird. And it just got more and more distorted. And I was just fully crossed. I couldn’t see what I looked like. But I had a feeling that I would look off and my friend said yeah, your eyes looking totally at the floor.

    Jake Straus 9:16

    And it was never good when doctors say I’ve never seen that. They told me when people have a lazy eye it goes left or right. It doesn’t go up or down. And mine went directly at the floor. So that was interesting.

    Bill Gasiamis 9:32

    It isn’t good when doctors say I haven’t seen that before. That’s definitely not good. You want to go to a doctor that has seen everything before so that they know how to help you right?

    Jake Straus 9:42

    Yeah, exactly. Like I don’t want to be a unique case.

    Bill Gasiamis 9:48

    The eye is looking good now as far as its position is concerned. But how is the vision? Is the vision restored is it as it was?

    Jake Straus 9:59

    No, definitely not as it was, it might be better than when I first got out of the hospital. But, it’s a small portion of my vision, it’s in the upper left area. It’s not peripheral. A lot of people say, Oh, you’re missing peripheral vision. That’s not true. Because when I go far enough out of it, I can see it. It’s, like right here.

    Jake Straus 10:23

    And then I start getting it back. Particularly when I look down, it must be just the spot in my vision when I look down. The spot that’s a little up into the left really is just missing. It’s dark. So I think we talked about last time, it’s one of the most annoying things is like reading subtitles for a show. And then everybody’s face disappears on the TV. So that can be pretty annoying.

    Bill Gasiamis 10:54

    Okay, so no foreign language movies for you my friend.

    Jake Straus 10:57

    Yeah, exactly. I can’t watch anime and all that stuff. Without a little bit of a struggle.

    Bill Gasiamis 11:03

    Yeah, yeah. Fair enough. Okay, so that’s not too bad as far as that’s could have been worse. I mean, I hate to say that anyway, it’s bad enough, you had a stroke. But that came back. How long did it take to get back?

    Jake Straus 11:20

    To get back my vision?

    Bill Gasiamis 11:21

    Yeah, to get back to your vision and your eye to sort of go straight? Did it go straight? How did they get it back?

    Jake Straus 11:28

    I don’t know if they even did anything. I remember when the nurse was kind of sitting with me, it was like, Hey, your eye looks it looks like it’s back to normal. It took about 40 minutes to an hour. You know, I was definitely cross-eyed When they got me to the hospital, they put me in a wheelchair.

    Jake Straus 11:46

    They rolled me up, they got me to a bed. And it was just kind of sitting and waiting. They gave me they didn’t give me any drugs to help they put dye in me. I remember that they put dye in me to be able to see my veins and stuff. But yeah, it took about 40 minutes, and then it kind of went back to the center.

    Jake Straus 12:10

    And when I had that dark spot missing. So I don’t know if you’ve ever had that. But sometimes when you stare at something like if you stare at the sun, you know you kind of get like this, like dark. That’s kind of what I thought happened. I was like, Oh, that’ll go back to normal. And I eventually realize like, that is just how it is now.

    Bill Gasiamis 12:27

    And how old were you? And how long ago was it?

    Jake Straus 12:31

    I was 24 it was August 7 of last year so it’s about six or seven months ago now.

    Bill Gasiamis 12:38

    At 24 Have you ever had through the sport that you’re participating? Have you ever had any serious injuries that you can look back on and go you know the sport’s pretty difficult on the body or it’s brutal?

    Jake Straus 12:59

    Yes, I’ve had several to be honest. A lot, nothing like that. Nothing ever scare me like that nothing ever made me feel like you know this is gonna affect my actual life. But a lot of setbacks I’ve lost about two years to injury of just you know, having to sit.

    Jake Straus 13:21

    So it’s something I’m used to coming back from injury and recovering and you know, trying to stay positive but nothing was like a stroke nothing felt more defeating for a little while than that.

    Bill Gasiamis 13:35

    And with physical injuries caused because of the combat side of the sport. There’s a timeline usually isn’t there? Don’t they usually sort of say this is the timeline and in X amount of months you’ll be back on your feet or using your arm again and then it’ll continue to get better and stronger and you rehabilitate it and all that stuff. Is that what you’ve experienced has been in the past?

    Jake Straus 14:02

    Yes definitely they’ve always been able to kind of give me a timetable you know, they like when you injure your knee really bad you know it’s usually like three to six months and the same thing shoulder I’ve had a lot of injuries I’ve cracked my tailbone multiple times that’s the worst pain I’ve ever had in my life was the tailbone.

    Bill Gasiamis 14:24

    Was it from falling onto the mat or onto the ground?

    Jake Straus 14:27

    I fell on someone’s knee and someone kneed me in the tailbone by accident. I had one of those door pull up bars. I fell doing pull-ups on that. So yeah, just I hope I never injure it again because that is the worst. The worst one by far it recovered quicker than the other ones but the pain is unbelievable in the beginning for that one.

    The Mental Pain – Jake Straus

    Bill Gasiamis 14:52

    So what’s it like now that your eye is, well you’re recovered but your eye has lost vision. What’s it like comparing that or thinking about that, to the other injuries, how do you kind of reconcile the difference in the two, one of them won’t kind of ever go away, it’ll always be the although technically you’re healed.

    Jake Straus 15:17

    Yeah, that’s exactly how I look at it, it’s like, you know, the other ones involve more pain, but this one was mentally painful, because, and it’s like, this is my new reality. So I don’t get as upset about it anymore.

    Jake Straus 15:31

    But getting back from the hospital coming home, it was very hard, because it’s like, I just wanted that visual field to be there. And it wasn’t. And it’s like, it’s very frustrating as somebody who’s had 100% of the vision on their life, to be missing a good portion of it. And we talked about last time, it’s like, it’s just a constant reminder.

    Jake Straus 15:53

    And right here in my room, I don’t feel like I noticed it as much. But when I’m in a big, well lit area, that’s when I really kind of notice it, you know, when there’s a big broad spectrum to look at, that’s when I see that I’m missing part of it. And it just reminds me that I had a stroke. And, you know, this is a lifelong thing I’ll probably have to deal with.

    Bill Gasiamis 16:17

    Does it also remind you that you’re mortal? Or is it just reminding you you had a stroke? What’s the what’s the big deal about it? I mean, you know, why, why is it affecting you? Why is it why was it so difficult to reconcile at the beginning? Which part of it?

    Jake Straus 16:36

    Yeah, I think you’re right about that mortal thing. I mean, it definitely makes me a little worried. It reminds me that something like that could happen again. But I think in the beginning, not only was it that, but it was just grieving for the loss of a part of me, if that makes sense.

    Jake Straus 16:54

    Like, I mean, you know, it’s one of the reasons I don’t have tattoos, is I don’t have anything against tattoos, and I think they look good, but I don’t like permanent things. And feeling like it’s permanently gone really disturbed me in a strange way that it’s hard to put into words, but it just was really disturbing to me. If that makes any sense.

    Bill Gasiamis 17:17

    Do like permanent good health.

    Jake Straus 17:20

    That’s okay. Yeah, I’m alright with that.

    Bill Gasiamis 17:25

    I’m glad. Yeah, I suppose your sport is really hard on the body, any combat sports are especially boxing, it doesn’t seem to stop a lot of people getting in the ring again, and again and again, and again. Did it ever cross your mind that I’m not going to do this anymore that I have to stop this?

    Jake Straus 17:49

    Yes. And it was just the most depressing part of my life. For sure. I’ve never felt more. I built an identity out of this. It’s what I felt like, made people start liking me because I kind of was an outcast. Growing up, I always felt like I was on the outside of stuff. And I’ve always felt mediocre. I’ve always felt like, you know, I’m not terrible at anything.

    Jake Straus 18:14

    But I’m also not very good at anything. And this is the first time it’s like, I was really good at something and people respected me for it. So when I felt like I lost it, it was just, it was the hardest thing I ever had to deal with. And really, like, I just tried not to think about it because when I thought about it really being over it was just killing me inside honestly.

    Bill Gasiamis 18:39

    Did it really feel like you were going to lose friendship, respect, was it an ego thing? What was it specifically that you’re afraid of?

    Jake Straus 18:53

    I think my ego was definitely involved. And you know, I guess I didn’t think people stop being friends with me but I was also thinking of the new friendships and it’s like it’s just like, This is what people know me for like I’m not even me anymore if I can’t, which I don’t think is true now. But I mean, it was a real thought of mine. And it was kind of hard to picture where I was going to go from there and what would be consuming my time in the future.

    Bill Gasiamis 19:28

    At 24 this reminds me of a midlife crisis, the description that you’ve given it because I’m 47 and I haven’t really had a midlife crisis. I don’t know what people do. My stroke didn’t cause one I didn’t think about my identity changing, becoming negative in any way.

    Bill Gasiamis 19:52

    I just saw it all as a positive. I thought, wow, I get to reset and redo things completely different again because I can’t do things the way that I used to. And now I have this new awareness about life being interrupted by serious health issues, one that could have killed me.

    Bill Gasiamis 20:15

    And there’s so much I haven’t experienced there’s so much I haven’t done, there’s so much I haven’t tried, this so much I haven’t spoken about etc, that now’s the time to do it. Because I don’t know when life is over. And even though I’m 37, and it took me a good five or six years to get back on my feet, where I started to feel myself again.

    Bill Gasiamis 20:45

    I had a lot of concerns about life might end soon, and I might have missed out on all these things. So let me just go after them now. And then if life is long, which I expected to be into the 80s and beyond, then I will have had another 40 years of experiencing all this awesome stuff that I didn’t do for the first 40 odd years.

    Bill Gasiamis 21:13

    And my identity has never been so rigid. So stuck in one position that when all my faculties were taken away from me that I felt like oh shit, I’ve got to get back to my painting job. Like, I never thought that, perhaps because I wasn’t so passionate about my job, as you are about your sport, and how you’ve grown into it, and how it’s grown around you and how It’s become such a massive part of your life.

    Midlife Crisis

    Bill Gasiamis 21:46

    But when people get to a midlife crisis in their 40s, or 50s, it’s often I see it in mums, a lot of mums who have been caregivers for their kids. And then their kids fly the nest. And then it’s like, what do I do now? How do I go about my life now? I’ve got all these things that I want to give to my kids that they don’t need anymore?

    Bill Gasiamis 22:13

    Who do I give them to? And what do I do with that time? And who am I really? And how do I fit in this world now that I’m not a mum, the way that I used to be a mum. So it kind of reminded me of that what you said you’ve had 24 years on the planet? Yeah, then you have a stroke.

    Bill Gasiamis 22:32

    And then it’s like, Well, who am I now I think what I’m trying to get at is a really good thing to do for people who are listening and watching is actually understand that your identity is not just the one thing that you do, or you participate in, there’s got to be multi-levels of identity in that.

    Bill Gasiamis 22:54

    And for example, in in jujitsu, it might be I’m a combatant, I get into the ring. But also have these other elements that I can participate in the sport in, say I can’t get back in the ring ever again, for whatever reason. I could do training or I could I don’t know make jujitsu footwear. I don’t know what the word is or what the term is.

    Bill Gasiamis 23:19

    But perhaps there is more than just I’m a combatant on the ring. And that’s how I identify my entire life nothing else matters. Perhaps I’m naive, because I’m not into a sport, where you are and you’re trying to be the best because you don’t muck around.

    Bill Gasiamis 23:43

    You definitely tell people that you want to be the best at it and you want to compete at a high level. So maybe you have to be more narrow-minded at that level. I don’t know. But I thought I’d throw that out there. Just sort of see what comes back. How do you feel about what I’ve just said?

    Jake Straus 24:03

    I think it’s right, I think that I was narrow-minded. I still am just maybe a little less but there is more to life than jiu-jitsu, there’s more to life than your hobbies are like the one thing you do and I, you know, we talked about last time is like one of the biggest things is like, how I treat my family and my friends, like I want to be more available to them, at least like emotionally than I was and having a stroke.

    Jake Straus 24:35

    It was devastating at the time, but it’s done so many good things to me as a person and not only to like treat people better but also another thing you mentioned is like I take risks now. I do things that I normally would have said no to or like you know, I just like I’ll buy the plane ticket I’ll go I’ll do whatever because I need to experience life because We don’t live forever.

    Jake Straus 25:01

    And I don’t want to regret it. I don’t want to say, Well, I didn’t really do anything but go to class, my whole life, you know. So it’s done a lot to put things into perspective about who I am as a person. And just like, what I could still do outside of my one focus.

    Bill Gasiamis 25:25

    How come? How come there was no time for your family?

    Jake Straus 25:29

    Because everything was about training, and everything was about competing. And, you know, it’s like, there’s not a and also, I don’t want to just put it to that I think I was just a rigid, like, you know, sometimes a hard person to get along with, and maybe I still am, but I’m a little better now.

    Space Brownies – Jake Straus

    Jake Straus 25:48

    You know, I think we talked about it, I kind of had an epiphany, because I ate a weed brownie, it was a lot stronger than I thought it would be. And I mean, everything just flooded my mind. And it’s like, I don’t hug my mom enough. I don’t, you know, I’m not nice to my sister.

    Jake Straus 26:04

    I’m not nice enough to my friends. Just a lot of things. And a big part of it was the stroke was being like, I can’t believe this happened to me at 24. Like this doesn’t seem like my reality, like it really felt unreal is like this is this really happened. And it’s like, who am I? Right now? You know, it’s like, I don’t want to be this person. Basically.

    Bill Gasiamis 26:28

    Yeah. In we don’t necessarily advocate, anyone taking anything that they shouldn’t take, especially when they’re recovering from a stroke, right. But I have had a weed brownie before. And I’ve also done mushrooms before. So I actually understand that part of what you’re saying.

    Bill Gasiamis 26:55

    But for the people that don’t understand it. Can you give us a little bit of an insight into what happened? Like, how did you had this epiphany, I know that we kind of got you into this space. But how does that happen? How do you go there?

    Bill Gasiamis 27:15

    And then how do you get such a good outcome from this? Because most people who talk about weed classified as a drug, there’s no middle ground for it. And then they kind of say, well, you know, weeds bad. It’s always gonna be bad. But you had a weed brownie, and you had this really amazing experience.

    Jake Straus 27:35

    Yeah. And at the time, I was terrified, and I hated it. And I wanted it to end. But one of the most important things that happened to me, I think it’s because I think I and maybe a lot of people, all we ever think about is what we want, like, how can this serve me?

    Jake Straus 27:52

    And how can I get from here to here. And when that happened, when I was on that brownie, I just was looking at myself, like way more introspective than ever before. It’s like again, it’s like, who am I? And I’m not perfect, you know, I’m far from it. And I guess I just never really sat back and looked at myself.

    Jake Straus 28:16

    You know, I kept feeling sorry for myself because I had a stroke. And because I can’t do this to that. But I started actually thinking about other people’s feelings, I suppose. And the way that I affect them, and I just really didn’t want to be a negative effect on people. I really didn’t I wanted if people were going to remember me, I want them to remember me positively.

    Intro 28:40

    If you’ve had a stroke, and you’re in recovery, you will know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid in case I’ll make matters worse, and doctors will explain things that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.

    Intro 29:04

    If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called a seven questions to ask your doctor about your stroke.

    Intro 29:23

    These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition. They’ll help you take a more active role in your recovery. Head to the website now, recoveryafterstroke.com and download the guide. It’s free.

    Bill Gasiamis 29:42

    In hindsight, this disconnection from your family when you were just fully into your sport and your training, was it making you a better or a worse fighter?

    Jake Straus 29:55

    You know, that is a really good question. I’m not sure I can tell you I think I’m the So I’ve ever been right now. And I am more available to people. So maybe I think it’s important for people to enjoy their life and do what they like. So I would say maybe it actually negatively affected me because I think I focus so much on one thing. And I maybe wasn’t enjoying myself as much as I should have outside of it. Although I loved it but.

    Bill Gasiamis 30:28

    Sounds like there wasn’t a lot of balance.

    Jake Straus 30:31

    Yeah, exactly. It was like this, you know, Jiujitsu, right here, and this is everything else.

    Bill Gasiamis 30:39

    And how your family now? Do you have more time for them? How are they enjoying you more?

    Jake Straus 30:46

    They definitely like it more. My sister says, I’m so different than I used to be, you know, and, and I’ll just take her word for because I can’t really speak, because I’m me. You know, I don’t really think I’m that much different. But it’s more like what I hear from people.

    Jake Straus 31:03

    And, you know, I have a niece, she’s about to turn one in about a month or two. So I want to be around for her. You know, I think they’re enjoying it a lot more. They’re terrified, because I’m still competing, and I’m back in it. So they don’t want anything bad to happen to me.

    Jake Straus 31:24

    By the way, something new that I wanted to add that has changed since we spoke is both my sisters are doing private lessons with me, and they love it. And I love that they’re starting to really like jiu-jitsu and I feel like they’re actually starting to understand me more by understanding jiu-jitsu. And it’s, and it’s something you spoke about with your son. From speaking with me, you kind of also got like an insight into your son’s mindset, right?

    Bill Gasiamis 31:53

    I’m devastated when I hear somebody had a carotid artery dissection in jiu-jitsu. I’m devastated because my son is fully into it. I mean, he’s fully into it. And man, this is a kid that did fit in. This is a kid that did have friends, this is a kid, you know, that we created the perfect environment for him and all this bullshit, you know, around his life so that he didn’t need to find himself and all this junk, right that, you know, we thought in our heads, right?

    Bill Gasiamis 32:21

    So we’re a typical suburban, you know Australian family, and we just go about life. And we try and do the best for everybody and ourselves. And we work hard, and we do all that sort of stuff. And then my son says, I found this sport. It’s like jiu-jitsu. It’s like wow, awesome, right? I just see people who participate in jujitsu punching the heck out of each other in a ring.

    Bill Gasiamis 32:43

    And I can’t deal with it. Because I’ve had an injury to my head. I’ve had brain surgery, there’s screws holding my skull together. And I’m like, the last thing I need in my life is people going anywhere near my head, there’s no chance I want to do that, right. And he tells me about all these amazing humans that he’s met at jujitsu, you know, his coach, and his, the other participants, and you know, his teammates, and it’s like, he feels like he’s part of this community that he’s never really felt, although he always was a popular kid.

    Bill Gasiamis 33:22

    This level of community I don’t think he ever had before. And they’ve got his back, and he’s got their back, you know? And he’s telling me these things, and I’m relating to it in my other non-combative communities, you know, where the people are amazing. And I’m like, wow how can this be possible anyway.

    Bill Gasiamis 33:45

    And then my son will say to me, I’m going to go see the fights. And then every once in a while, I’ll sit down and watch the fights with him, you know, watch the Joe Rogan interview. Some of the best fighters in the world for the MMA bouts, and all that kind of stuff.

    Bill Gasiamis 34:01

    And you get beyond the fact that what they’re doing is just hitting each other you know, that there is strategy involved. You know, that there is controlling emotions, you know, that there is controlling your breath, you know, that there is practicing, or implementing what you’ve practiced for months and months and months.

    Bill Gasiamis 34:22

    And there is so many life lessons. And you get to practice them and experience them in that time for the amount of rounds that you’re in that ring for. And there’s not many things in life where you get to practice your craft in such a intense and hostile environment.

    Bill Gasiamis 34:47

    Most of us just practice our craft in a benign environment. But you guys, you get to practice it under duress all the time. And it’s like, far out man. I take my hat off to you guys, I don’t know how you do it. And I’m glad that I don’t do it. And I would never do it. But I really appreciate the fact that people get into the ring and put themselves at risk.

    Jake Straus 35:14

    They are. And I think we’re all a little crazy. I think there’s just a different mindset for people who love that kind of stuff. And, you know, I wish I could explain it better. But you know, it’s not about, oh, for a lot of people, it’s not about wanting to hurt somebody else.

    Jiu-Jitsu As a Self Defense


    Jake Straus 35:33
    It’s about a super competitive nature, and maybe even like a dominant kind of thing where it’s like, you just want to be recognized as the best. And, you know, for other people, it might be just violence, but for them, as you said, it’s strategy, it’s being the smartest, it’s being the best at their craft, and their craft just happens to involve punching people and kicking people, you know.

    Bill Gasiamis 36:03

    I don’t want to say beyond that part as well, like, it’s just, it isn’t just that it’s, that’s one of the things that happens in that, but I’m thinking about it from the perspective of self-defense as well. There’s an aspect to that, not that we need to be completely aware of the fact that perhaps we need a higher level of self defense.

    Bill Gasiamis 36:30

    Self-defense is kind of like, it’s an insurance policy. It’s something that you do in case something happens in the future so that you can protect yourself. But I see the merits of people who are like me who are not usually combatants, and who wouldn’t know how to have a proper fight.

    Bill Gasiamis 36:48

    I see it being really a useful skill to know how to disarm somebody, or how to bring somebody to the ground and dominate them in a position and get into a position of power so that you take away their opportunity or their ability to harm you. And to attack you. I see that as a way, way more beneficial part of the sport.

    Bill Gasiamis 37:15

    And I suppose the fact that you guys get to practice it so much means that you will be very good in a situation like that if it was ever to arise, and also to help other people if it ever arises. Because you can just act, you can just move rather than go into fight or flight and freeze and don’t know exactly what to do.

    Jake Straus 37:39

    And I mean, the reason it’s so well tested is because we play the game in practice. We don’t pretend to play it, we don’t drill it and then never actually go into the live situation like, and some sports, it’s easier than others. Like, you know, you could always play a live basketball game in practice, I think I think there’s a place for everything.

    Jake Straus 38:02

    But as far as self-defense, you know, there are people who teach you it. They’ll show you the move, but then they won’t have you use it in a real situation. So it’s like all we do at jiu-jitsu is just go into real situations. Now it might not be like a street fight situation, but it’s still applying your technique against someone who doesn’t want you to do it. So you’ll see how it works.

    Bill Gasiamis 38:24

    So you’re a very kinesthetic person. That means you love touched you love feeling you love movement, you love all of that. My son he’ll often say to us, Don’t come near me. Don’t touch me. Don’t touch me. But then he gets involved in a sport like jiu-jitsu with grappling and people all over each other the whole time.

    Bill Gasiamis 38:48

    And he does that willingly. So I’m curious is that kinesthetic? That feeling that touching part of it a really important part of the sport? Is it something that you lacked or missed as a younger kid? This is something that has added to your life that being so close to somebody even in that strange, you know, weird grappling position.

    Jake Straus 39:10

    I think that’s why we’re so close. I think that’s why you see, like, people treat each other like family because it’s like, we’re up close and personal. We’re touching each other every day. And you know, we shake hands, we hug after practice, we all stay after and we talk and I think it absolutely makes us closer than another sport or another activity.

    Jake Straus 39:29

    You know, you see a friend at work and you say hi but like imagine if you’re a fucking engaged sorry, but I really close quarter activity all the time. And I kind of like your son’s like, I didn’t like hugs and kisses growing up. You know, I was not that guy. I was not that kid. So it’s weird that I’m okay with it. As long as we’re trying to strangle each other and break each other’s arms.

    Bill Gasiamis 39:53

    That’s what I mean, he’ll give us a hug and a kiss when it comes over and when we get in his place or whatever, or when we meet somewhere. And that’s all good. But you know, there’s some times when as a parent, you want to go and hug your kid. And it’s like, no, no, don’t touch me. I don’t want to be touched.

    Bill Gasiamis 40:10

    So standoffish, but that’s all right. So your sisters? Are you surprised by their level of ability? Or did you learn something about them that you didn’t know? Because combat sports, like that often teaches something deep. And you know about their dark side? Did you get to experience some different from your sisters?

    Jake Straus 40:38

    Yeah, and, you know, it’s funny, I think it goes back to what you just said is like, we did not hug a lot. I think my middle sister would like hugs, but me and my oldest sister are very similar, and we’re just not giving them out much. So this is the closest we’ve ever been, we’ve never, touched each other so much.

    Jake Straus 40:58

    We’ve never been this so I mean, that’s a whole new thing. But also, seeing how my sister, she listens well, and I would say, she’s actually had trouble with criticism before. But she’s very good at dealing with the criticism from me when I’m coaching and saying no, that’s not right.

    Jake Straus 41:18

    You know, she never talks back. And that’s something I’m really appreciative of, and, you know, she wants to learn, and I respect that a lot, too. Um, my other sister she, she just tried for the first time, but it’s hard for her because she laughs at everything. She says, sorry, every time because she’s so like, nervous about hurting somebody or whatever.

    Jake Straus 41:41

    So it’ll be interesting to see her kind of get more comfortable with it. But yeah, I mean, I just, I never expected to stall this together. It’s a really good bonding experience. And again, it’s like I get to show them what I love more than anything in the world. So it’s hard to not bond over that.

    Raising Awareness About Jiu-Jitsu And Stroke


    Bill Gasiamis 42:02
    Yeah, I do love that. jujitsu brought you guys together. It’s just brilliant. That’s why it’s important for me to speak about shoots, it’s what we’re doing is we’re raising awareness about the injury caused to somebody’s neck is that if you notice somebody in jiu-jitsu, for example, whose eye has changed direction, if you notice somebody whose mouth has drooped, who’s not speaking correctly, who is not able to feel one side of their body who is not walking the right way that they were walking just before.

    Bill Gasiamis 42:38

    Who is saying something strange, don’t take that lightly like take it really seriously and get that person help immediately. Because what we don’t want to do is make assumptions that you’ll be right or you’ll walk it off, or it’ll get better. No, because if it’s something happening neurologically, we need to take action really quickly.

    Bill Gasiamis 42:59

    We want to make sure that people see jiu-jitsu as not being just a sport that injures people’s brains because it does so much more than that. And people’s brains get injured, even out of sports. So what about me just regular life just walking around and being myself? I mean, it’d be such a silly thing to say life sometimes if you’re just living your life, you get a brain injury, you know, quit living, or quit doing that thing that you were doing beforehand. It’s nuts.

    Jake Straus 43:27

    No, that’s a doctor’s, like go to is, Oh, you were doing that. And you have this happen. We’ll just don’t do that anymore. So well, it’s not that simple. That might be a major part of my life, whatever that is. So sometimes we need help just working around it. But yeah, it’s brought me major awareness.

    Jake Straus 43:45

    And I tell people all the time, and I think I’m a good person to tell you because I didn’t quit doing it. And go, Oh, you shouldn’t do that anymore. Like, no, I’m telling you, I’m involved heavily in it. I’m competitive. I’m telling you to be very careful to realize this happens.

    Jake Straus 44:02

    A lot of people are in denial. You know, they tell me I got the vaccine months before it and people want to tell me that the vaccine caused it or people want to tell me Well, what were you eating? And yeah, they just want to believe it’s anything but jiu-jitsu. But it’s once you accept that, I think you can do jujitsu more safely. And my goal is to keep people in it. So to do it safely, would keep people in the sport you know.

    Bill Gasiamis 44:28

    I love what you said about some people want to deny it. One of my good friends who’s also somebody who works for me for my painting company is a smoker has been smoking his whole life. And he recently got diagnosed with emphysema. But until the time that he got the diagnosis, he was looking for excuses.

    Bill Gasiamis 44:55

    And we could see him looking for excuses to blame something else other than his own actions or his own inactions. Because it’s, you don’t want to believe that you’re harming yourself, you don’t want to believe that you’re done the wrong thing by yourself. Where normally it’s other people that do the wrong thing by us. And we can easily blame them, or we can easily give them a hard time.

    Bill Gasiamis 45:18

    And we can easily say stuff about them that you know that it’s their character, and they behave this way. And that impacted me negatively. And that’s easy, because it’s somebody else, but when it’s us doing it to ourselves, that’s a hard thing to live with, for a lot of people they don’t want to be how do you blame yourself how do you attack yourself, you know, it’s really difficult when supposedly, you’re doing what’s best for you all the time, apparently.

    Bill Gasiamis 45:51

    It’s a really difficult thing I think the Nile in is part of also not taking responsibility. And that’s what I love about your example of your sister, becoming able to listen to you in training, because she’s realized that her staying well and safe is her responsibility in jujitsu.

    Bill Gasiamis 46:14

    She needs to listen so that she can stay safe, and not get caught out because the other person on the mat is actually trying to make her unsafe and put her in a position where she has to submit or in a position where her lights are gonna go out because they’re gonna choke her out. So I think it’s taking responsibility, does that resonate? Is that something that you relate to?

    Jake Straus 46:42

    Absolutely, I feel like I’m losing the thought here I had a really good thought. It’s that constructive criticism is constructive for a reason. And I’d have it, I feel like most people have it, I have an ego. And we don’t want to be told we’re doing something wrong. Or, maybe we’re scared to do something different than what we’re comfortable with.

    Jake Straus 47:07

    But a lot of the time, that’s there to aid us. And for her, maybe it was tougher in other areas of life. But because she knows I’m somewhat of an expert, or very well knowledgeable in this field, she has no problem taking the criticism, she has no problem being told, stop doing that, that’s wrong.

    Jake Straus 47:26

    And it’s nice to see that she only wants to do what is beneficial for her, which would be to accept criticism. And that’s it’s like an example of really how I should be and how we all should be in life. Especially when we know someone knows better than us. We, should accept criticism more often.

    Bill Gasiamis 47:47

    And I love it. It’s in the word, constructive criticism, it’s constructing something around that criticism that’s helping you later. And it’s so beneficial. And I think if we, if we give the ego an opportunity to just go quiet, and then really pay attention, listen, I think it’s easier to take criticism.

    Bill Gasiamis 48:08

    But also, I think, when it comes to combative sports, there’s an element of survival. And I think when you’re in a situation of survival, you’ll take constructive criticism much easier, because your ego is not involved. Because it’s survival, it’s like life or death.

    Bill Gasiamis 48:26

    And it might never be life or death for your sister on the mat with you. But it’s like, that’s what it feels like when you’re being pinned and grappled and you’re being subdued and you’re being dominated. That’s definitely what the nervous is saying. The nervous system is going, man, we need to stay alive.

    Jake Straus 48:51

    Yeah. And I was very bad with that, from, like, 14, 13, when I started doing combat sports to, you know, about 20 years old, it was really bad. I just thought my way was the way. And I knew better than other people, somebody who’s done something their entire life, but I don’t want to listen to them.

    Jake Straus 49:16

    Because I’ve been doing this, and my coach does it it’s like, oh, I don’t want to do that. Because this has been working so well for me. I don’t want to stop doing this. Like, yeah, it’s working well, on people who are not good. I’m trying to tell you that just because it’s working for you, you’re gonna go against someone who knows what they’re doing, and that’s going to get you in trouble.

    Jake Straus 49:33

    And that’s where it’s really hard to listen to, because something is working all the time. You know? It’s not always a good example, just because it’s working. Because, you know, if you want to work at the mediocre level for the rest of your life, and that’s fine, but there’s things that will work at the low level and then get you in trouble at the high level and that’s everything in life.

    Bill Gasiamis 49:53

    How did you stay involved with the sport after the injury when you actually couldn’t compete? How did you stay involved? Did you stay involved?

    Jake Straus 50:02

    Oh, definitely, I got a direct opportunity, because of it for something way different than I’ve ever done. And there was an event I was gonna do it’s called submission grappling series. And I actually saw the promoter of the day I had a stroke, she competed at the event.

    Jake Straus 50:20

    And, you know, when I told them that I couldn’t compete anymore, and they and I told them why, and they knew how devastating it was they just were like, is there anything you would like to do at the event? And I just threw out there, you know, I’ve always wanted to do commentary, I’d be willing to try it.

    Jake Straus 50:39

    They put me on the show. And I did commentary. And it went really well. I studied really well for it. And I ended up coming back multiple times. And I got linked to the MMA promoter.

    Jake Straus 50:50

    So I ended up doing lots of commentary work because of it. And I also started teaching the private lessons after what happened to me. So I became somewhat of a teacher after as well. I wanted any way of being involved at the time.

    Bill Gasiamis 51:08

    Yeah, I suppose that adding to your identity, it’s adding to that level of, I’m not just the guy who gets in the ring and grapples. I’m not just a fighter, I’m not just this, I’m also this other person who can speak about the sport who can commentate about what’s happening. And that is still being involved, but not necessarily directly, every time so that when you have an injury, you can not feel bad about it, you can be okay, well, I’m healing now I’m recovering. Let me dabble over here.

    Jake Straus 51:45

    Yeah, and it’s like that knowledge now doesn’t feel like it’s going to waste. And maybe that’s another thing that bothered me was like, accumulating all this skill and all this knowledge and not knowing what I was gonna do with it, it’s like, I don’t want to just sit on it. You know, I don’t want to just pick a new career.

    Jake Straus 52:00

    And, just go, yeah, I used to do that. So being able to actually share it, and people appreciated it, which was one of the nicest things for me, when people would message me and tell me, they really liked my commentary, or they thought I said really nice things about them. And that really made me feel good. It didn’t quite feel as good as getting in there and doing it. But there was a good feeling that came from it.

    A Better Perspective

    Bill Gasiamis 52:29

    I wonder if it made you a better fighter as well, because I’ve seen whenever you see a boxing ring, or an MMA ring, there’s the team is kind of below the ring, at the same height as the judges and at the same height as the commentators in the seat around the table.

    Bill Gasiamis 52:51

    So they level with the floor. And as a fighter, you’re above them, and you’re doing your thing. But then as a commentator, you’re actually specifically looking at the technique, the way they got there, the way they implemented that the way they got caught out.

    Bill Gasiamis 53:09

    And you’re also sitting at a different level. So the perspective is completely different, does a change in perspective, and the fact that you’re talking about what other people are doing, observing them so intensely? Does it make you a better fighter? Do you see things that you missed while you were in the ring?

    Jake Straus 53:31

    Yeah, 100% makes you better. And it’s hard to ignore what you should do, right? When you’re telling people what someone should be doing. And you’re going, you know, they should be placing their arm here they should be.

    Jake Straus 53:43

    And then you find yourself in that same situation. And you remember what you were saying? And it definitely plays into it. You’re you’re analyzing it on a level you never would have before.

    Jake Straus 53:54

    And you talk about you watch with your friends at home, and you maybe you kind of do like your own commentary, but it has a lot more cuss words and like alcohol and stuff involved.

    Jake Straus 54:04

    But when it’s a job and you really have to be professional, yeah, man, you look at it with a whole new perspective. And I think it adds something into your brain. It adds a new wrinkle that you never had.

    Bill Gasiamis 54:18

    Yeah there’s certainly a lot more cuss words and a lot more alcohol and a lot more things flowing when I’m watching it with my son or with his mates or whatever. I’m not big on alcohol. But yeah, it’s pretty electric to be in the room with them while they’re watching the sport that they participate in.

    Bill Gasiamis 54:39

    It’s just a completely different feeling. I can’t even imagine what it’s like to be in the venue where it’s happening. I cannot even imagine I’ve never been so but yeah, what’s interesting is that the commentating that we do as couch commentators, I think, offers that there is a level of actually deep understanding of what’s happening and how somebody caught out, we also get to see the patterns.

    Bill Gasiamis 55:11

    But just because we’ve seen the patterns, if you put us in the ring, we will not be in any position to defend ourselves, like, especially me, right? I could see what’s happening, I could pick what’s about to choke, how that person’s about to get move into a choke, I could pick all these things.

    Bill Gasiamis 55:28

    But then I could never implement the strategy to protect myself against something like that, because I’ve never had the physical experience of what it’s like to be completely dominated by somebody or when it did happen.

    Bill Gasiamis 55:46

    It was when I was five, and my older brother who had three years on me was doing that he was sitting on me, or he was squashing me or something, and I couldn’t get up. But I think that the people who are watching the sport are definitely missing that other side of it by having never competed, you don’t get the full appreciation of what you’re experiencing.

    Jake Straus 56:16

    No, it’s totally true. And, you know, that’s like how I feel about when I watch football, like I never played football. But I mean, I love watching it. And another thing is, you don’t have to be able to do it to understand what’s going on. Because a lot of the best coaches were not the best players, were not the best fighters, I think it’s rare.

    Jake Straus 56:37

    And maybe it’s because of the ego that somebody has to be so good, you have to have an ego, you have to be single minded. So I think a lot of the best coaches are not the best when they competed.

    Jake Straus 56:49

    There’s some former world champions who are good coaches, but a lot of them are not, you know, a lot of them were guys who may be in the amateur ranks, or, you know, competed a bit, but they just had the understanding in the know how, but maybe not the physical gifts and whatnot.

    Bill Gasiamis 57:07

    So you seem to be able to the way you’re talking makes me feel like you’d be able to switch ON and OFF. You switch on your ego, and then you switch off your ego. Is that true?

    Jake Straus 57:19

    Yes, for sure. And I got an ego, I definitely have an ego. I’m not afraid to admit that, I’ve had a high sense of self-importance from a young age.

    Bill Gasiamis 57:33

    Is that what made it difficult for people to relate to you for you to have friendships and all those things in those early years is that what was hard about you not knowing where you belong, then fit in? Was that part of it?

    Jake Straus 57:47

    I think that was part of it. I think I was very out there, too. I’m a very strange guy have a very strange sense of humor. And what I tell people really often is that the things people didn’t like me for and thought I was weird for when I was younger, the same things people really liked me for as an adult. So I’m very happy with adulthood. I don’t feel like I have to put up a mask or anything anymore.

    Bill Gasiamis 58:19

    Maybe you were just quicker to adopt behavior than most adolescents and teenagers, maybe you just got there sooner maybe you were mature for your age or something.

    Jake Straus 58:32

    I was an old soul. But I’m also I don’t know how I can be mature for my age, but then I can be really immature too I guess I’m a very strange guy. You know, the more you know me, you’ll start figuring it out. You know, I had smoked weed for so long.

    Jake Straus Keeping The Humor

    Jake Straus 58:49

    I finally quit January. And some people thought maybe it will get better. It is 10 times worse now. Like now, you know, the real me and I’m insane. So it’s pretty funny seeing my friends go like, wow, I thought that would make it a little better.

    Bill Gasiamis 59:07

    I think weirdness and all that behavior, I think it’s appropriate in the right context, like anything, isn’t it?

    Jake Straus 59:17

    Yeah, for sure. I mean, I don’t want to be overly.

    Bill Gasiamis 59:23

    Rigid in a funny environment. You don’t want to be the stiff in the room when everyone’s supposed to be laughing. And vice versa. You don’t want to be the guy that’s making people laugh in the funeral while it’s happening.

    Jake Straus 59:36

    Yeah, that’s a good way to put it. You know? Rigidness disturbs me. There’s something very off putting to me about people who are afraid to open up and I won’t say be yourself but just be like silly like. That for some reason bothers me. It’s hard for me to make friends with you. If you can’t make fun of yourself or make fun of me. anything that’s going on around you?

    Jake Straus 1:00:03

    And that the jokes never stopped. I mean, when I was in the hospital with a stroke, I had the mask on half of my face. And I was pretending to be the guy from 300, who was missing an eye. So like it literally never stopped. Even when I was crying, it’s like one man, I’d be crying, and then making a really stupid joke about me being blind or whatever. So that’s just me, I can’t help it.

    Bill Gasiamis 1:00:28

    I don’t think you need to apologize for I think it’s a really amazing thing. Because it helps. That’s what helps people get through, I mean, the dark times can be really dark, you need a way out. And you need to experience every level of emotion.

    Bill Gasiamis 1:00:42

    Because if you don’t experience it, those are the emotions that kind of hang around and cause problems later on in life, the ones you’ve never dealt with, or the ones you’ve never allowed to come forward or the ones you’ve never faced, you know. So, yes, you have to experience the mall.

    Bill Gasiamis 1:01:02

    And I think laughter is one of those little, it’s one of those bridges, that gets you to the next one. And it gives you a bit of respite, it gives you a bit of a relief. And it also gives you good endorphins, and it gives you I imagine serotonin and all other stuff that we need in our body.

    Bill Gasiamis 1:01:22

    And it gives us kind of like a little gap a little bit of respite to get us to the next shitty time or shitty feeling or whatever it is. And then hopefully, we’ve dealt with a lot of them. By the time we’ve, we’ve been beyond our stroke for a number of years, you know.

    Bill Gasiamis 1:01:42

    I certainly have been in counseling since about the age of 25, about your age, and I do not, I have not stopped yet. I’ll be turning 48 This year, and I still go to counseling regularly, because I do all those things that I’m saying. But I’m not always good at talking through things with the right person.

    Bill Gasiamis 1:02:04

    It’s difficult to find the right person to talk things through with so that I can A get them out of my head out of my soul, out of my heart wherever I need to get them out of. And all we do at work all day is poke fun at each other all day.

    Bill Gasiamis 1:02:25

    There’s five of us, nobody gets away with it. And sometimes. And you can see when somebody has had enough when they finally go, that’s it. I can’t take another joke anymore from you and just shut up and don’t talk to me. You know, they’re going through something else at that moment.

    Bill Gasiamis 1:02:44

    And it’s time to sort of settle back and let it go. But the all the laughter of all the days before made it possible for us to get through our day. And now he’s at that moment, and now laughter is not appropriate. Okay, now let’s stop. And let’s let them get deal with that. overcome that. And let’s get back to laughter and poking fun of each other when it’s time.

    Jake Straus 1:03:09

    Yeah. You got to be able to read people on that. And yeah, that’s why I’m always laughing at myself. I don’t want to laugh at anybody else. But I know I can laugh at myself, because I know how I feel. So I mean, my friend call me when I was in the hospital, he was crying. And that really touched me in a different way to I mean, I’ve really felt close to I’ve never forgot that.

    Jake Straus 1:03:34

    But I mean, I was like, trying to make him feel better. I was saying some, I wish I could remember that kind of stuff. I was saying, but I was still trying to make him laugh, because I mean, we competed against each other. I beat him at a tournament earlier last year.

    Jake Straus 1:03:49

    And we just became really close after and we kind of both agreed we’re going to become world champions when they were going to chase our dreams together. And when he saw that happen to me, it just kind of devastated him. And it was at that moment, I just was like almost trying to make him feel better even though it was for me. Like I just didn’t want to see him be upset.

    Bill Gasiamis 1:04:14

    A lot of stroke survivors talk about trying to make the other people in the room feel better when they come to visit. That’s a very common thing. I certainly was doing that for my family. The more I could be quote unquote myself, the less worried or stressed out they would be and it worked for some people but it didn’t work for fathers, didn’t work for my mom and dad of course.

    Bill Gasiamis 1:04:39

    There was no bringing them back off the cliff. You know, they were a mess. My dad. I remember the first day I was in hospital. So I got diagnosed on a Friday. We went in after ignoring the signs and symptoms for seven days. I finally went to the Home hospital got diagnosed.

    Bill Gasiamis 1:05:02

    And it was about 9pm when I was told there’s something, we noticed something in your brain. But I told my wife to go home and look after the kids at the time there were teenagers, young teenagers. And I didn’t tell my wife either. But the next morning around my wife, I said, Hey, listen, they’ve told me they found something and take the kids to my parents and come and see me in the hospital.

    Bill Gasiamis 1:05:31

    And we’ll talk through with the doctors, they’re gonna come in. So tell my parents, nothing. Don’t tell them exactly what’s happening just yet, because we don’t know. And we’ll tell them later. But tell them I’m in hospital and they need to come and see me right?

    Bill Gasiamis 1:05:48

    So my wife does dropped off the kids. The kids get all looked after or whatever. And then my parents come to see me. But my dad that forgets to take his blood pressure medication. My Dad’s six foot something right? Six foot one, and he’s about in kilos is about 140 kilos, which is big right?

    Jake Straus 1:06:15

    Yeah, I’m 77. So it’s a lot.

    Bill Gasiamis 1:06:18

    Yeah, right. So I want to convert it quickly to pounds.

    Jake Straus 1:06:21

    For our American viewers. Like what is that? What is a kilo?

    Bill Gasiamis 1:06:31

    308 pounds.

    Jake Straus 1:06:33

    Yeah, it’s a lot.

    Bill Gasiamis 1:06:34

    Right. So he forgets to take his blood pressure medication. And out of their home into their backyard, there are two steps down to the ground. He takes one step down, he feels dizzy, loses his balance, and he falls into the courtyard. And my mom is half his size, and a third of his weight.

    Bill Gasiamis 1:06:57

    And now my dad, on the way to come and see me has collapsed at home. There was such a mess, right? My parents were a mess.

    Jake Straus 1:07:05

    Yeah your poor mother.

    Bill Gasiamis 1:07:06

    Yeah, there was no bringing them back from the brink of you know, jumping off the cliff. And I remember my mom comes up to the ward to see me. And I’m like, where’s Dad? And she said well he’s downstairs. Well what the hell is he doing downstairs? Well, he fell over at the house. And he’s in emergency.

    Bill Gasiamis 1:07:30

    Like what’s going on? So I’m still able to walk and talk and do all that stuff in the first part of the bleed. Like the first bleed that I had still had me looking perfectly normal. Nobody could tell that there was something wrong other than me. I walked downstairs and I go and see my Dad is lying in emergency he’s connected to all the monitors.

    Bill Gasiamis 1:07:51

    Dude, what happened to you, man? Because I’ve collapsed I fell over because I was coming to see you and I forgot to take my blood pressure medication and look at me. You know, I came to help you. And now I can’t even do that and he was a mess. He was a complete mess.

    Bill Gasiamis 1:08:06

    So I couldn’t bring them back from the seriousness of it until they knew that I was okay. And I answered the question. Are you okay? A 101 million times until that time, it was I was not okay. And it was for a lot lot, a long time a lot of years or couldn’t get him to just chill out and be comfortable with the fact that when I actually told them I was okay, I was okay.

    Bill Gasiamis 1:08:34

    They were also adjusting with the new me because I’d be fatigued some days or some days I wouldn’t be up for a visit or sometimes old and go and see them or whatever. And they struggled a lot.

    Bill Gasiamis 1:08:46

    So I’m not sure how I got to this point. But yeah, that’s my experience with your it was your friend who really felt sort of really upset for you and you are trying to make him feel better. Are they okay? Are your friends and family Okay, now or they still kind of harboring a few concerns?

    Jake Straus 1:09:12

    I think they’re always gonna have some concerns. I’ve calmed them down immensely. I think the longer I’ve been training and now I’ve competed three times. They’re starting to accept that like, I can do this and I’m gonna be okay. That one friend though he actually I mean, everybody who does jiu-jitsu is like really like, Oh, you’re fine. He’s the only one it’s like, still, like, I’ve talked about us jokingly, like competing again.

    Jake Straus 1:09:38

    He’s like, I do not want to go against you. He’s like, I just don’t want to try to choke you. Like I just can’t, you know, and he’s just shows me how much he cares about me though. I mean, he gets really worried. Every time you know, he just kind of is relieved when it’s over. And, you know, he never because my parents have said some things that bother me.

    Jake Straus 1:10:00

    Like, you know, I’m doing the biggest competition in my life and going to Las Vegas, April 1. And you know, I told my mom about it. And she’s like, well, you’re gonna tap if they get you in a choke, right? And like, that’s not what I was hoping to hear. I was hoping to hear oh, good luck, or, you know, I think you’ll do good.

    Jake Straus 1:10:17

    Or whenever, you know, like, Oh, what an awesome opportunity it was. That’s the first thing that goes in her head because she could care less what you know, she just wants me to be okay. But they’re a little bit more at ease. They’re a little bit more at ease.

    Knowing When To Tap Out – Jake Straus


    Bill Gasiamis 1:10:33
    Yeah. And that’s the thing about knowing when to tap is really important, too, isn’t it for the people that are up and coming, who are not yet able to defend somebody coming in to choke them, that’s really good. It’s really important to know, in the training phase, when to tap?

    Jake Straus 1:10:53

    Yeah, and when, when there’s no escape, don’t wait for pain to start happening. Don’t wait till you’re about to pass out. If you’re not actively trying to escape, it’s really over. I mean, let alone if like, you feel the chill coming, maybe even if you feel like you can’t escape, but the choke is on, you got to just, you know, accept it, and you get to restart.

    Jake Straus 1:11:13

    That’s the beauty of it, you can fix your mistakes, you can think about what you did wrong, and you can fix it. It’s okay, that you got caught, you know, it’s not like you’re actually going to get better if you somehow survived this, you know, it’s like this weird mentality we have, where if we didn’t tap out, we did something right that day, and we did, like you were wrong for even getting caught in the first place.

    Jake Straus 1:11:33

    And the other thing I was thinking about was how I had all those major vision issues. That lasted for like a year where, where my peripherals would get really dark, I’d see things spinning, just the lights, everything would just get really strange. And I went to an eye doctor, and I was totally fine. In regards to my eyeballs, they’re still totally fine. There’s nothing wrong with my eyeballs.

    Jake Straus 1:11:58

    And I kind of just wrote it off as okay. Don’t do that. If you have vision issues, and there’s nothing wrong with your eyes, it probably is something with your brain. So, you know, go see a neurologist, I would say and get an evaluation on that. Because it could be maybe a sign of like a miniature stroke or something. Because I think that’s what was happening to me.

    Bill Gasiamis 1:12:23

    Yes, man, that’s a great thing to say. Because vision issues that come out of nowhere is not your eyeball it something else. It could also be your eyeball. And there could be some deterioration in your eyeball. But even that’s serious right here. And that’s something that you need to do something about.

    Bill Gasiamis 1:12:45

    But your optometrist or your ophthalmologist, or whatever they’re called, when you go there, and they look at your eye, they’ll say, your eye looks perfectly healthy. There must be something else causing your vision issues. And they know the next thing to say to you is go and see a neurologist go to the hospital, go and get a scan, they’ll know that that’s the next thing to say.

    Jake Straus 1:13:07

    Yeah, and I wish they did that with me. They didn’t do that with me. You know, they just said no, your eyes are fine. You know, they never said that. Well, they just said my eyes were fine.

    Bill Gasiamis 1:13:18

    Yeah, so your eyes were fine. They didn’t look beyond the eye. Your eye? Yeah, yeah. Yeah, I was physically healthy. And perhaps that’s one of the things we don’t know what to ask them, to get them to give us the right response so that we could take action. In hindsight. Yeah.

    Jake Straus 1:13:40

    I wish I was more. I wish I was more curious about what was wrong with me instead of because we just want to keep training. That’s the other thing I’d say about athletes. If we can get any kind of clearance from a doctor that says no, you’re okay.

    Jake Straus 1:13:54

    We’re gonna take that and run with it. I told you I had I went to five doctors. Four of them told me never to do it again. One told me that it was possible. Guess who I’m listening to?

    Bill Gasiamis 1:14:07

    Yeah, I know, man. Look, life is actually full of risks. Every single day you get in a car. You get into a plane, and a car is way more dangerous than a plane by the way. You walk down the street, life is a risk every single thing that we do every time that we do, and we cannot live life, trying to avoid death or trying to avoid risk or trying to avoid injury.

    Bill Gasiamis 1:14:36

    It should be in the back of our minds, but I don’t think it’s necessarily going to need to be in the front of our minds because it’s going to rob us from life. And I am certainly never jumping out of an airplane. I’m never jumping out of a perfectly good airplane. I’m okay with that. It’s not robbing me of life.

    Bill Gasiamis 1:14:57

    You know, I’m perfectly fine with that. But I’ll tell you what, there are definitely things that I’m going to do. If somebody says to me, should we do that, if I can do a very quick risk to reward calculation, and the reward is immense, and the risk is manageable, then I’m going for it.

    Bill Gasiamis 1:15:17

    Because I did change my perspective on how I’m going to experience life as well. 37, I was pretty narrow minded, I was pretty rigid, narrow-minded about people pretty rigid about life. And I think I was sometimes as funny as I was, in my own little world. Or as good as I was, I was bloody boring, because I always said no to things.

    Bill Gasiamis 1:15:43

    So I said, Ah, man, we need to do that later, all we do is to find the excuse, or we don’t have enough money for that now or whatever. And it was such a lot of shit. And my wife had to deal with me saying no, no, no, no to any, to everyone, for her entire time that she was with me, you know, like, and still is.

    Bill Gasiamis 1:16:05

    But from 37, when she said, we have to do this now that we’re healthy enough to do it. Because later on, we don’t know what’s coming. And I’m like, You know what, you’re right. But I still couldn’t get my head around being the one that organized it. I had to outsource it to her and said, listen, if you arrange it, I’ll come along.

    Bill Gasiamis 1:16:26

    I don’t know why I can’t arrange it. But if you do arrange it, I’ll be there. Let me not overthink it. I’ll let you do all the programming, calculations, whatever you need to do you do that. And I’ll just turn up, and we’ll have a lovely experience. And I think I was trying to allay my concerns and my anxiety by not being involved in the lead up.

    Bill Gasiamis 1:16:50

    And now it’s like, well, she’s booked at all, we’ve got to go, we can’t not go. And it’s like, Alright, I’m there. I’ll go. And then I had the best times and most of that was traveling, right? One of the first things we did, we went to, we came to the US, you know, we traveled to the US.

    Bill Gasiamis 1:17:06

    And we did Hawaii, we did California, and we did New York. And in Australia, one of the things that we get to see every New Year’s is the ball drop at Times Square. That’s like, that’s what they show here. We get to see Times Square and the people there and all that stuff.

    Bill Gasiamis 1:17:28

    So my wife said, wouldn’t it be good if we went to Time Square to see the ball drop in a New Year’s? I’m like, Yeah, that would be good. So we were so far away from it, you couldn’t actually experience the ball drop. But I had my camera and I zoomed right in, and I could actually see the ball drop on my camera, and we were there.

    Bill Gasiamis 1:17:48

    And it was freezing cold. You know, in New York in I think it was 2012. And it was going into 2013 was freezing cold. There was millions of people on the street. We were there with the whole family. And I never would have had that experience. I don’t believe if it wasn’t for me experiencing a stroke, and then thinking that I might not live to see another day.

    Jake Straus 1:18:15

    I feel like a lot of the revelations that you have, and the same ones that I’ve had, and I would imagine a lot of other people, but it’s, I keep saying it’s like you gotta bite the bullet. And it’s like you said when your wife booked it now you got no choice. And it’s like, that’s what I’m kind of doing now. It’s like, let me just send it let me just press yes. And then now I have to do it.

    Jake Straus 1:18:39

    And I’m always gonna be happy that I did it. It’s like, we always, like you were kind of it’s like, we always think we’re gonna find the time for it later. But it’s never right now. And it’s like, we have to do things right now. We can’t put everything off to later because later just becomes later again.

    Jake Straus 1:18:57

    So like, we have to do it now. And I’m excited to go to Vegas. You know, that’s gonna be interesting. And,  my bracket, it’s gonna have 250 people, I signed up on there as about 237. So there was only about 13 spots left. And I was like, I better do this now, because I’m going to regret. It’s another thing that I would have normally went maybe next year. And it’s like, why not just do it now? Why not just try it?

    Bill Gasiamis 1:19:26

    So did you put it off and put it off and put it off until almost the last moment?

    Jake Straus 1:19:33

    Yeah and I almost I almost was a victim of putting things off again, but I just did it. I was at the gym. I was lifting weights. So you know, I could have told myself I’ll do it when I get home. Maybe I wouldn’t have had enough time if I got home though. So I just I just sat down on a bench and I just did it.

    Bill Gasiamis 1:19:54

    I was gonna say how much harder is it now for somebody to choke you out now that you’ve had that injury and you want to totally protect yourself? Are you better at being able to protect yourself in the ring?

    Jake Straus 1:20:08

    Way better, I rarely have to tap the chokes. Because I’m a million miles away from any choke attempt, you know, if they happen to get to it, I do tap. And even when it’s something weird with my neck where normally when I left a neck crank, it’s not a joke. But, it’s way harder now. Because I just keep myself safe.

    Jake Straus 1:20:28

    And I think a lot of the time that I got submitted, or that I get submitted, because I’m at the point where I’m pretty good is, when I’m consciously lazy, it’s like, because I know what I need to do a lot of the time, and I’ll do it.

    Jake Straus 1:20:43

    And when you can make me work hard enough to finally go. You know, and like, relax, then you can grab something. So it’s when someone’s aware, it’s very hard to get them, you know, when somebody is active and aware. So I’d say it just makes me more conscious.

    Bill Gasiamis 1:21:00

    Consciously lazy.

    Jake Straus 1:21:03

    Consciously lazy.

    Bill Gasiamis 1:21:05

    You’re aware that you’re going into a lazy phase.

    Jake Straus 1:21:10

    And still being lazy.

    Bill Gasiamis 1:21:11

    Wow.

    Jake Straus 1:21:13

    A lot of the losses I’ve had were like that. It’s like, I’m tired. I’ve almost told myself, I’m not gonna win this one. I’ve done that a few times, you know, and a lot of the losses I’ve had, it was like, not today. You know, not all of them. And those are the losses, I’m least bothered by ones where I just was trying as hard as I could throughout.

    Accepting Defeat – Jake Straus

    Jake Straus 1:21:39

    It’s not about getting submitted or anything, it’s about the fact that I consciously accepted defeat. One on the on the tournament where I had a stroke, I lost, I went through, I won three matches, I lost one. And that loss is one of the ones that I’m least bothered by, because I was losing by a lot of points.

    Jake Straus 1:21:58

    And I just decided I was gonna do something really risky because I had nothing to lose, I knew I was gonna lose if I let the time run out. So I took a big risk. And then he got my leg and he tapped me out with the heel hook, which is a type of leg lock. And I had absolutely no issue with it because it was like, I didn’t watch the clock run out.

    Jake Straus 1:22:18

    The worst thing to me is watching the clock run out and knowing that you’re going to lose when the time runs out. I’d rather get submitted. Everybody’s different. I know people who would rather survive and go at least I didn’t get submitted. That’s not me. Losing is losing to me. You can lose by an inch you can lose by a mile you still lost. Same thing when I win though.

    Bill Gasiamis 1:22:39

    Oh, no, that’s alright, I was gonna say. It’s interesting, because in sport, I hate teams that watch the clock out while they’re winning. And they get the win and they get the points and I get it. They might even get the trophy because of that. But it’s such a terrible way to watch a sport, when you know, you’re not even giving the opposition a chance to beat you. And then beating them to show that you actually are better than them. Do you know what I mean?

    Jake Straus 1:23:08

    Oh, yeah. And, you know, but there’s a reason that, when there’s a certain amount of time on the clock, you kneel it’s like why give them a cheat. I understand both mentalities. Why give them a chance that you don’t need to. But as a spectator, it’s never fun. You don’t want to watch somebody, like, go for the win over the excitement.

    Jake Straus 1:23:33

    But I gotta tell you another thing. I’ve lost excitingly, and I’ve won boringly, and I got way more support when I won boringly people like seeing this people like seeing your hand raised people don’t care that much. It turns out, because I was not happy with my first performance coming back.

    Jake Straus 1:23:34

    But I won. And everybody was just looking overjoyed. I was like, yeah, it wasn’t the best performance. They don’t care. They don’t care. They just want to see you win the Patriots can win by three points for the rest of time, and their fans will be happy. I’m telling you, man.

    Bill Gasiamis 1:24:11

    I don’t know about that. We had in the 500 CCS, we had a motorcycle rider Mick Doohan, who was the best for many, many years. He was about six time world champ. And he was just dominating the sport dominating the sport, there was nobody there was anywhere near his level of dominance for the time that he was at his peak.

    Bill Gasiamis 1:24:40

    And that we’re talking about him has been the person who’s making the sport boring. You know, there’s something about that. And it’s not about him. It’s about the people coming up behind him who are not up to the task. That’s what it’s about. And yet he gets the criticism for making the sport boring.

    Bill Gasiamis 1:25:05

    But the the rest of the field is just, they’re the boring ones. They’re the ones that can’t actually compete at that level. So yeah, it’s an interesting philosophical conversation. But I hear you, I would rather you you personally as a spectator is not watch the clock, I would rather you right?

    Bill Gasiamis 1:25:30

    Do all those things, you know, I would rather you be but be given the opportunity to, to win. And then the other person shows you that they are the true dominant fighter by beating you because they actually are better than you in every way shape or form. I don’t know. Like, it’s just me.

    Bill Gasiamis 1:25:53

    But if I was on the mat, you know, maybe that completely all that stuff I just said goes completely out the window, and that’s perfectly fine as well. So I’m speaking from a naive base, from no real experience in the sport. So who am I to say I would, I would rather let you guys make your own decisions and, and feel comfortable by them or not feel comfortable by them.

    Bill Gasiamis 1:26:19

    And that’s fine and learn from them. You’re somebody that’s learnt so much from combat sports, so much from stroke, and together, the lessons have really shaped you to be a way I don’t even know the words, such a multi-faceted multi-level person who is going to continue to do that right. Now that you know how to do that, and how to be less rigid, and how to be less narrow-minded.

    Jake Straus 1:26:52

    I needed to be a more well-rounded person. Like every personality trait needed to be a little better. Because again, it was just too much tunnel vision for me. And you know, and then I had real tunnel vision. And now I see more, you know, I was more blind, when I could see more.

    Bill Gasiamis 1:27:14

    Wow. Man, that is an awesome way to end the podcast, man, thank you so much for being on the show. I really appreciate it. And I really appreciate you making three hours available of your time for me one and a half hours for last week that we didn’t get to record. And another about that much this time.

    Bill Gasiamis 1:27:35

    So man, I wish you all the best I’m going to follow your, your career, I want to, I want to see what you do in the sport and how you grow as a person, how you develop at 25, you’ve got a lot of living to do, man.

    Bill Gasiamis 1:27:48

    And you’re going to make a massive difference to a lot of people not only in the sport, but also in the other side of life, you know, this, this other part that you now kind of had to learn from and grow from.

    There’s More To Life Than Stroke

    Jake Straus 1:28:04

    Yep, I’m happy to be a part of multiple communities. And before we go before we close, I do want to, because it’s something I said last week, but I just want people to know that. A stroke doesn’t mean you’re a disabled person.

    Jake Straus 1:28:19

    You’re only as disabled as you feel. So there’s always a way to get back to doing what you love. And it doesn’t have to be exactly the same. But you know, don’t lose hope on on living a good fulfilling life. There’s always more to do. So I just want everybody to know that.

    Bill Gasiamis 1:28:36

    Yeah. And I have to add to that just look at those World Champion Paralympians, tennis players, all those people who decided that they were going to go jumping out of a plane after they had a massive injury or something, or all those people who are rock climbing with just their arms because their legs don’t work. I mean, it doesn’t mean anything, that life has changed.

    Bill Gasiamis 1:29:04

    Absolutely, that it’s a bit harder, a lot harder, more mentally harder, more emotionally hard, all those things, but with practice and with work, and with focus on how to get beyond the problem, rather than stay at the problem.

    Bill Gasiamis 1:29:20

    So what are the solutions on going after the solutions? You can live a massive life and unbelievable life. And if it’s early days in your recovery, or if it’s early days in your, in your disease or if you’re unwell and it’s still early days, there’s light at the end of the tunnel, there really, really is.

    Jake Straus 1:29:37

    Yes, it gets better. It gets better you learn to deal with it. And as we know, sometimes the life that you live after is more rewarding. You know, you’re not gonna be the same but that’s okay. It’s okay that you’re not the same because you’re better than before a lot of the time.

    Bill Gasiamis 1:29:55

    Yeah. And discover who you are. Go about discovering who you are. I mean, that’s a perfect time to do that. Discover now. And I’ll add this as well. And you know, and start saying yes, like I did a couple of weeks ago when my wife and her sister decided to go and get the nails done right?

    Jake Straus 1:30:16

    I was hoping you tell this story. I wanted you to tell the story again.

    Bill Gasiamis 1:30:19

    Yeah, thanks. So I’m gonna then as a result, I’ll share the photo of my foot as well, my feet as well, right?

    Jake Straus 1:30:27

    Please do.

    Bill’s Day Out

    Bill Gasiamis 1:30:28

    I’ll share the photos of me actually, in the chair. While I was getting the pedicure for the first time in my life, man, I’m 47 I can’t believe I haven’t had a pedicure yet. Right. The girl said to me, are we going to catch up on this Saturday afternoon in Melbourne in the city?

    Bill Gasiamis 1:30:44

    And I said, yeah, we’ll catch up for sure. We’re gonna go get a pedicure. And I’m like, Yeah, we’re gonna go get a pedicure. So, we went, I had no idea. They knew what they were doing. And you know, my sister-in-law was sitting opposite of me. So I said, take photos. I’m gonna send it to my nieces, you know?

    Bill Gasiamis 1:31:01

    And my nieces were just loving it. They were just chewing it up, they were like, man, that’s so cool. Whatever. And then, the Thai lady. It’s the standard typical all around the world. It’s all Thai people that run nail shops, right? They’re talking about us, you know, for sure. They’re talking about me. And I’m really loving about me, in their own language to each other.

    Bill Gasiamis 1:31:28

    And I’m like, fantastic. This is the entire I’m having the entire experience here, you know. And then at the beginning, she didn’t notice that the lady who was working with me she didn’t notice that I had picked up nail polish. And I was holding it just in my lap and just waiting there while she finished and she thought we were done after she did the nail clip and the polishing and whatever they do.

    Bill Gasiamis 1:31:50

    And the massaging and the cream. And man, my feet felt like so pampered they were amazing, right? And then she goes all done now? And I said no, no, not all done nail polish. And she looked at me you want nail polish. Yeah. And I picked the most brightest orange nail polish you can imagine.

    Bill Gasiamis 1:32:12

    And I said to do that, and she was shocked. And my sister-in-law was like, Yeah, of course, you’re gonna get nail polish. And my wife’s like, nail polish. And I’m like, Yeah, nail polish. What’s the point of going all the way to a pedicure and leaving without nail polish man.

    Jake Straus 1:32:27

    You need the full experience?

    Bill Gasiamis 1:32:31

    Yeah, man. So it’s been such a great thing for me to do. Because of course, there used to be a guy in my head. That had many things to say about people, especially men who went and got pedicures and nail polish. That guy I’m so glad to say does not exist anymore. That guy fucking left 10 years ago.

    Bill Gasiamis 1:32:57

    And let me tell ya, that’s the best thing one of the best things that’s ever happened to me amongst all the hundreds and hundreds of other amazing things that happen in stroke. So yeah, whoever’s listening to this, if you stay to the end, go to find the episode in the show notes, and scroll down to the bottom of the page, recoveryafterstroke.com. Check out this episode. And then you’ll see Jake’s image there. Click on that go into the show notes. Scroll right down to the bottom. I’m not going to make it easy for you. And you’ll see the images of my fabulous orange nails after the pedicure.

    Jake Straus 1:33:42

    I would have to check that out.

    Bill Gasiamis 1:33:43

    Yeah. So man, do it. Jake. It’s been fun, so much fun again, talking to you. So thank you for doing it again. And I really look forward to like I said, following your career, and I wish you well in the competition. And, man, I’m written for a man so you know, I’m gonna, make sure that I’m there if you ever need anything, please reach out.

    Jake Straus 1:34:11

    I appreciate it, man. Thank you for having me. I really love what you’re doing. So I’ll be following you as well. This is a really great thing that we’ve been brought together. So I appreciate it.

    Bill Gasiamis 1:34:21

    Yeah absolutely. Well, thanks so much for joining us again, on another episode of the recovery after stroke podcast. I hope you got something out of it. And I hope that you appreciate going to and checking out the photos of my feet after my pedicure and nail polish experience.

    Bill Gasiamis 1:34:44

    It was something different. And I’ve got to say it was a real real lots of fun, and I really enjoyed it. And I really enjoyed connecting with my wife and my sister in-law in that way, which is something I’ve never done before. So do go to recoveryafterstroke.com slash episodes, and then find your find find this episode with Jack Straus episode 188.

    Bill Gasiamis 1:35:08

    And check out the photos of me sitting in the chair. Now, if you enjoyed this episode, please comment, like, share, tell me what you think if you’re watching on Instagram, if you’re watching on YouTube, leave the show thumbs up, subscribe, hit the notification bell to get notifications of new episodes as they’re being released.

    Bill Gasiamis 1:35:28

    And if you leave a comment that helps the episode rank better, and therefore it’ll go to more people, the algorithm will make it so that it goes through and is seen by more people that will hopefully make it better for people who are stroke survivors searching for this type of content, find it and feel less alone and feel less stressed and upset about the situation they find themselves in.

    Bill Gasiamis 1:35:55

    And hopefully that’ll make a difference in their recovery and the loved ones who are helping them with their recovery. So thanks so much again for listening. Like I said, leave us a comment I answer all comments myself, leave a thumbs up, like and share and I really appreciate you tuning in every episode and making this show possible. Thank you so much.

    Intro 1:36:17

    Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals opinions and treatment protocols disgusting any podcast or the individual’s own experience, and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

    Intro 1:36:34

    All content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill gassiness. The content is intended to complement your medical treatment and support healing.

    Intro 1:36:51

    It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives did not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or is a substitute for the advice of a health professional.

    Intro 1:37:12

    Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be, call triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.

    Intro 1:37:36

    Medical information changes constantly. While we aim to provide current quality information in our content. We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide however third-party links from our website are followed at your own risk and we are not responsible for any information you find there.

    The post Stroke After A Brazilian Jiu-Jitsu Choke – Jake Straus appeared first on Recovery After Stroke.

    1 hr 40 min
  • In Memory Of Natalie Kate Moss – Fiona Moss

    Fiona Moss is the sister of Natalie Kate Moss who died as a result of a ruptured blood vessel at the age of 26.

    Website

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    Highlights:

    01:50 Introduction

    03:32 Fiona Moss
    11:07 Natalie Kate Moss Trust
    18:13 Stroke Awareness
    26:59 Moving On With Deficits
    37:42 Natalie Kate Moss
    44:21 Running Things With The Family
    58:35 Catching Up With People

    Transcription:

    Bill Gasiamis 0:00

    Tell me about your sister. What do you remember about her?

    Fiona Moss 0:05

    She was very loud. She was an amazing sister. She was like, you know, the ideal older sister. We were just under six years apart, but still very, very close. We speak on the phone every day, would have like sleepovers in each other’s rooms when we were younger.

    Fiona Moss 0:24

    And just very, very bubbly. Very different in many, many ways. You know, I was probably a lot more academic than she was. She was quite a party girl, but very, very creative, very arty, and an amazing artist.

    Fiona Moss 0:39

    And was pursuing a merchandising role with Karen Millen which is a big clothes fashion brand down in London. And that’s actually where she was when she had her brain hemorrhage. We weren’t really just sisters. We were very much best friends.

    Intro 1:00

    This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.

    Bill Gasiamis 1:14

    Hello, and welcome to another episode of the recovery after stroke podcast. Recently, Spotify released a new feature, which allows people to rate their favorite shows similarly to how the apple podcast app allows them. If you think the show deserves it, I’d love it. If you left the show a five-star review.

    Bill Gasiamis 1:32

    This will help the show rank better on search engines and will help newly diagnosed stroke survivors find the show and it could make a massive difference in their recovery. Go ahead, go to your favorite podcast app if it’s not the Spotify app and leave the show a five-star review.

    Introduction – Natalie Kate Moss


    Bill Gasiamis 1:50
    And let me know what the show means to you. It really will make a huge difference. Now, this is episode 187. And my guest today is Fiona Moss, who 10 years ago lost her big sister Natalie Kate Moss, to a brain hemorrhage age, just 26. In that time, Fiona with her big brother Sebastian, and with the support of their parents set up the Natalie Kate Moss Trust.

    Bill Gasiamis 2:20

    A charitable organization raising money in the hopes of supporting groundbreaking research into the prevention and treatment of brain hemorrhages to stop more tragedies from occurring. Very recently, the foundation handed over a check to Manchester University valued at 300,000 pounds. Fiona Moss, welcome to the podcast.

    Fiona Moss 2:45

    Hello, thank you very much for having me.

    Bill Gasiamis 2:47

    My pleasure. Thank you for being here. Very rarely do you get the opportunity to speak to people about how stroke has impacted the loved ones you very rarely get the caregivers on, you very rarely get the family members on to tell us about their side of it. It’s really a conversation that’s not held much.

    Bill Gasiamis 3:13

    And then every once in a while I come across people such as yourself who are doing great work in sharing the perspective of a family member who has been impacted by stroke or some kind of a neurological injury.

    Fiona Moss


    Bill Gasiamis 3:32
    And very, very rarely do you get to speak to somebody who’s been doing that raising of awareness for such a long time, nearly 10 years or more I think you guys have been at it. Tell me a little bit about you, who you are, what you’re doing, and why you’re doing it?

    Fiona Moss 3:54

    Yeah, no, I can completely understand that. And I think there are many different perspectives, to be honest on that, like it touches everyone in very different ways. But as you said, my name is Fiona Moss, I am British although I’m not currently in Britain, I’m currently in Mexico.

    Fiona Moss 4:12

    But as you say, you know, I am a family member of somebody who has been impacted, unfortunately, passed away from having a brain hemorrhage. So my sister was 26. And this was, as you say, 10 years ago, it was in 2011. I feel like we also get lost with the concept of time given that we’ve had the two years wiped out by the pandemic.

    Fiona Moss 4:38

    But she had a brain hemorrhage completely out of the blue didn’t know anything of it. And was unfortunately in intensive care for just under a week and passed away. And ever since you know obviously given you know somebody passing away at such a young age but something completely out of the blue really shook everyone up around us.

    Fiona Moss 5:02

    My family, obviously, you know, our close friends, but you know, sort of the wider circle that you don’t necessarily really, you probably don’t even really consider so to speak. And, you know, it really did shake everyone up and think, you know, our life is too short, we didn’t even know this could happen to young people.

    Fiona Moss 5:22

    And it really made us take action that we don’t want this to be, you know, something that happened and for no reason. So we set up the Natalie Kate Moss trust in memory of my sister, Natalie. And that was in 2012. So around about six months after she passed away.

    Fiona Moss 5:41

    And the aim of the trust essentially is to support Manchester University, again, a university in the north part of England, which is where she went to university and their research team to look into the prevention and treatment of brain hemorrhages. And we’re really proud to say that actually, through our support to them, they’ve made some incredible steps forward in their research.

    Fiona Moss 6:05

    Obviously, at the beginning, I think it was quite a small trust, and it is relatively still really small. But you know, we were very much reliant on people just kind of helping out. But as things have grown people have done some incredible things, whether it’s sort of cycling, the length of Britain, whether it’s rowing around Britain, whether it’s running for five days straight, running 100 miles with a CAGR bear on their back, you know, people have done some incredible, incredible things.

    Fiona Moss 6:30

    And we really committed again, I think, last concept of the time, I think it was about a year and a half ago, just before the pandemic, we committed to Manchester University, 300,000 pounds, over the course of three years. So we’re sort of at the end of the first year, from when we actually officially started it, to really enable them to step up and step up their research and, you know, bring in more research fellows, and essentially, to set up the center of excellence.

    Fiona Moss 6:57

    So there’s not really one center of excellence. Really, in the UK, I can’t really say in Europe, but I know the UK for this particular type of research. So whilst there’s no physical center, it’s a center of excellence bringing together you know, the best minds in this particular field to really kind of start making headway in this area.

    Fiona Moss 7:19

    So, as I say, we’re sort of midway where they’re sort of the end of the first year now. And yeah, things have really leveled up, we’ve been able to really step-up in terms of the awareness of the trust the work that Manchester we’re doing, and yeah, hopefully, we’re going to be able to continue this as well beyond the three years and really support them to keep making leaps and bounds in this area.

    Bill Gasiamis 7:45

    Far out, that’s just amazing to hear, I get so relieved when I hear these people working in the background to help people they’ve never met before, to find solutions for problems that they never know they’re going to have in the future. When I became unwell in 2012. I had this curiosity about finding solutions and finding answers to the challenges that I was now facing.

    Bill Gasiamis 8:18

    And I ended up finding in Melbourne, Australia found the Florey Institute, which is a neuroscience and mental health research organization aligned with Melbourne University. And I just remember going to one of the lectures just turning up to a university. I’ve never been to a university in my life, I just remember turning up to one of the lectures where they had some speakers talking about neuroplasticity.

    Bill Gasiamis 8:44

    And I was just stunned at the amount of people that were there that had never necessarily had any reason to be focused on solving those types of problems for people. And yet they were and it was like, Oh, wow, like those people are there actually working for me looking for solutions for me, and they don’t know me, they’ve never met me, and that’s what they’re doing.

    Bill Gasiamis 9:08

    So I always get really kind of humbled by the fact that that’s happening. And I’ve never felt so supported, even though I’ve never met any of those people. And even though it’s you doing it, and you’re supporting the team in Manchester that all filters down to the neuroscience world throughout the globe now that we’re one community.

    Bill Gasiamis 9:38

    And everyone benefits from the work that you guys are doing in Manchester. 300,000 pounds is probably equivalent to about 700 billion Australian dollars. But the reality is it’s probably about 700,000 Australian dollars. Which is just a phenomenal amount of money and then I’m thinking at the same time, how old were you when your sister passed?

    Fiona Moss 10:06

    I was actually three weeks before my 21st birthday. So I had this like big 21st policy, like, I don’t know if it’s the same in Australia but 21st years is quite a big birthday. Yeah. And it was literally three weeks it was just before Christmas. And yeah, I was in the second halfway through the second year of my university.

    Fiona Moss 10:30

    And it was a big moment, a really big shift and a really big change in the dynamic. And it was almost like a moment of, you know, going from like a real adolescent teenager into really having to step up to be an adult.

    Bill Gasiamis 10:44

    It’s just ridiculous that that has to happen. And I know it happens for a lot of people. You’re not the only one. This question is, I consider myself pretty dumb at 21. And that’s pretty normal. That’s pretty cool, right? That’s what we’re meant to be kind of right? And then how the heck does a 21-year-old, decide six months later, we’re gonna do something.

    Natalie Kate Moss Trust

    Bill Gasiamis 11:07

    And we’re gonna start fundraising and gathering money. And now 10 years later, you’re raising $300,000, for Manchester University, how does a 21-year-old come up with that idea, and then actually follows through with that for an entire decade, and turns it into this thing that you could never have possibly imagined that it would have been?

    Fiona Moss 11:33

    I would love to take the credit for this. But it would be completely ungenuine if I did. No, I’ve got an older brother as well, who is seven years older than me. So he was 27. When this happened, so they were very close in age. He was a real driving force behind this, I give him credit where credit’s due.

    Fiona Moss 11:55

    And but I do remember my mom, in the weeks after that Natalie passed away, you know, really saying like, no, this isn’t going to happen for a reason, we’re going to make sure that people remember her, we’re going to really make sure that we do something, and this isn’t just you know, just not going to forget about this, there’s some good is going to come out of this. So those two, particularly at the beginning, were the real driving force.

    Fiona Moss 12:19

    And it’s actually been more over time, that I’ve become more of a, you know, basically taken on a bigger role in the trust. Because I think at that point, you know, if I’m being completely honest, it is really hard. It’s very confusing, you know, I was still trying to figure out how to navigate University and you know, go through this change.

    Fiona Moss 12:45

    And, you know, I just lost my big sister, and like, she was very much a role model to me, as well. And so that was a real shift in terms of almost re-identifying who I was, and whilst my friends were going out, you know what is university, you just set it right at 21. carefree and all my friends are living that life.

    Fiona Moss 13:03

    And then I had the stark reality on me. So I was really trying to navigate by at the same time, saying I did, you know, help where I could, but I would say the real driving force has been it was definitely Sebastian and Mum at that point. But I think, it’s always been important to me, but as I’ve probably matured and come to terms of that, over the years, I’ve taken on a bit more, a bit more.

    Fiona Moss 13:27

    And now, yeah, really, really behind it driving, flying the flag to try and really push it on to the next level. I guess, as I said, right at the beginning, it kind of had a, it was it was very different in terms of the outlook that we had on the trust, you know, we were just sort of relying on you know, incredible people who were doing incredible things, but we weren’t really looking at it.

    Fiona Moss 13:50

    And I guess strategically is the right word. You know, if anything, you know, if we really want to make a change, we do kind of have to do big bold things and think strategically behind it. Which does change the dynamic when we want to grow it and actually have more of an impact on you know, supporting Manchester University. And also, you know, the research that comes out of all of that as well.

    Fiona Moss 14:14

    So, yeah, it’s definitely taken, it’s been a journey. You know, we talked about that being 10 years down the line, and I’m so incredibly proud that it is, you know, still growing 10 years later, but that definitely requires some shorter shifts in dynamics. And yeah, we’ve actually been able to fortunately bring on a fundraising manager now.

    Fiona Moss 14:34

    That’s now that we’ve up-leveled in so many different ways, because you’d be surprised about how many like little adamant things that do come up. And we’ve essentially been running a separate business on the side of, you know, both my brother and I run our own businesses, so it’s definitely a juggling act.

    Bill Gasiamis 14:50

    Yeah. One in four people will experience a stroke in their lifetime, a person suffers a stroke every three minutes and 27 seconds in the UK, it’s a similar statistic in Australia and in the US. Stroke kills twice as many women as breast cancer and twice as many men as prostate cancer and testicular cancer combined each year.

    Bill Gasiamis 15:16

    Do you still feel like stroke is the big unknown, and we don’t talk about it much we don’t hear about it much. When I say we like communities, in general, I’ve been at this for 10 years as well, right. But I don’t hear about conversations in the space of raising awareness like about stroke of like I hear still the Cancer Council the go and get your prostate checked, go and do this and go into that.

    Bill Gasiamis 15:49

    There seems to be a such a massive discussion about those types of things still, and they do a great job of raising awareness to saving lives. But there’s still seems to be this underlying thing with stroke that hasn’t really, the conversation hasn’t really come to that level. That’s the sense that I get, do you get that? Or you have something different?

    Fiona Moss 16:14

    No, I do definitely agree with that. I think there’s probably two things to say that the first is that there’s almost I feel like sometimes these things, whether it’s supporting a charity and you know, supporting a different condition, especially when someone’s been personally affected, they become so proud of not the right word, but focused on that.

    Fiona Moss 16:35

    But then it almost becomes competitive in this, you know, strange way, you know, that we really need to focus on you know, breast cancer, or prostate cancer or whatever. And kind of that’s the only thing I can focus on and forget, the other things, I definitely see that in some way. Not that people are doing that in any sort of unkind way.

    Fiona Moss 16:53

    But you know, you become so passionate about it, you can’t be passionate about everything. So I think there’s part of it that is around that. But I also think that it probably lends itself to a bigger conversation that we generally probably aren’t very good at talking about any of these things, whether it is stroke, or some other conditions or even cancer, but you’re right that that is a lot more, it is a lot more talked about.

    Fiona Moss 17:19

    But actually probably to the depth that we need to talk about it or getting the checks, etc, is still very hush hush. And I actually think that’s more of a cultural thing. And regardless of what what condition it is, we probably need to be not just creating structures and systems that enable us to be checked in whatever way that we can be checked or, you know, encouraging us to know the signs, etc.

    Fiona Moss 17:48

    But also, we should be encouraging more honest communication, and deeper levels of communication, that really allow ourselves to create those structures, and really allow ourselves to be able to have the conversation, particularly if someone has suffered a stroke. And you know, they are dealing with that quite a lot of people. And I probably imagine it’s quite similar in Australia to is in the UK where it’s quite stoical.

    Stroke Awareness – Fiona Moss


    Fiona Moss 18:13
    And they don’t know what to say. So actually, what they do their response is to stand back, rather than try and understand the situation and try and understand how can they help? How can they understand more? And as I say, it’s quite a stroller call approach. And I think if we can shift the way we approach the conversation, the conversation itself will change.

    Fiona Moss 18:34

    And as such, the way we approach how do we better support people to understand how do you deal with somebody who’s suffered with a stroke? You know, how do you how can you support them? How best? Can you communicate with them, as well? Because, you know, I’ve been through grief a number of times, and I think, in the same way, people don’t know how to talk about that.

    Fiona Moss 18:56

    And so, therefore, their response is actually what I just won’t talk about it. And I will stand back because saying nothing is better than saying the wrong thing. Whereas I would really encourage people to actually just learn to understand ask questions, I never think you can ask a bad question because you’re engaged and you’re wanting to learn.

    Fiona Moss 19:18

    So yeah, 100% I would totally agree that I don’t think we have enough conversation and whether that’s the conversation around supporting somebody who’s suffered with a stroke, supporting those who have lost somebody through a stroke supporting to understand the signs.

    Fiona Moss 19:33

    It is very much a probably taboo, but also just unaware, like lack of awareness comes through as well. People don’t know what they don’t know at the end of the day as well. So those stats, you know, those stats there you obviously have had them that we have them on the website, but it is it is horrifying and you know, harrowing.

    Fiona Moss 19:55

    But quite often, you know, we take the approach that ignorance is bliss and it won’t happen to me But I think that lack of awareness preparation, ultimately helps no one, you know, because at some point we do get affected by something. And again, going back to it, whether it is cancer, whether it is stroke, whether it is something else, but having those integral skills to be able to deal with those situations, I think it’s so incredibly key.

    Bill Gasiamis 20:21

    Yeah, it’s definitely something that’s helped me sharpen my skills in learning how to overcome challenges learning how to solve really complex problems now, because before the problems that I had, were just imagined, and now actual problems, they’re real. And I’ve got to actually then solve them and learn about that.

    Bill Gasiamis 20:42

    And solving one problem might take six months or 12 months, it might seem like it’s a long time, but I’m backfilling the whole time with learning about. Okay, so how do you solve that problem, it’s gaining the skills to get to the point where I can solve that problem, whatever that problem is, that is what takes long.

    Bill Gasiamis 21:01

    And sometimes when you’re recovering from stroke, or you’re caring for somebody that’s had a stroke, it’s hard to find the time to squeeze in backfilling your knowledge to get you competent enough to be able to solve the problem that you’re facing, which is still inevitable.

    Bill Gasiamis 21:18

    But that’s the thing, it’s time is real critical, and finding the extra time is the hard part, or even finding enough time in one, day two, just be a have the right frame of mind and energy levels. After a stroke or recovering from a stroke, it’s really difficult. So what it’s really interesting to me is that your the way that you speak about stroke is like a stroke survivor, in that you have a very deep level of understanding of what it’s like.

    Bill Gasiamis 22:00

    And I find that very rare in people who haven’t had a stroke to have a try and have a conversation with them about what it’s like is near impossible. What makes you what, how did you kind of bridge that gap? Because that’s a big gap. And to find what well-meaning people supporting stroke survivors have got no idea how to relate to somebody that’s had a stroke is frustrating and challenging, although it’s heartwarming, they’re doing amazing things. But you’ve you’ve bridged that gap. How do you think it managed to do that?

    Fiona Moss 22:38

    So obviously, as I said, you know, earlier that, you know, I was 20, when Natalie past away, and obviously that straightaway shifts your perspective on things now, but it doesn’t, it shifts your perspective, to understand a bit more about grief and to understand about, you know, the impermanence of life, and to really recognize that, you know, things can happen to you.

    Fiona Moss 23:05

    And it’s not, you know, just a story you hear or whatever, you know, these things kind of these very sad, tragic things to happen. But if I’m being honest, I don’t think it was necessarily Natalie’s death that had that impact. So my boyfriend got diagnosed with cancer when I was 25. And he had cancer for three years.

    Fiona Moss 23:25

    And that really made me aware of what it’s like to live with something that is so debilitating. So, you know, like you say, it’s about, you might not have the time, or you do have the time, you don’t have the energy, right, and you just don’t want to you’re not in the headspace.

    Fiona Moss 23:46

    Because this that and the other, you’re frustrated, you can’t do something and it’s not as black and white as when you are healthy. And you can you know, like you said before, maybe you have beliefs that you made up, you know, or problems that you made up like you know, I can have problems that can make up every single day right now.

    Fiona Moss 24:09

    But that’s very different to actually having a physical condition that is actually impeding you from doing something and then the effect that that has on your mental health and how frustrating that is and having lived with somebody who has had that problem and in there really lived through that pain and the challenges so many challenges not just the you know, I can’t do this or I can’t do that.

    Fiona Moss 24:40

    But as I said the effects on your mental health on your belief system on on everything and then ultimately on you know, the conversations that you have with other people who like you say you just you don’t get it who don’t get it’s not that easy because you haven’t slept the night before because of this, that and the other you know

    Fiona Moss 25:00

    That’s one thing that worked one day is not working today, and how incredibly frustrating that is. Or maybe you made plans and you have to change them, you know, life is, is certainly not linear, by any, by any means when it comes to that point. So that really gave me a very deep understanding of what it is like, you know, to be constantly living with something.

    Fiona Moss 25:28

    And as well, you know, even recently, I’ve been moving through and traveling around and living in Latin America, and one of my best friends who I have been away with, has type one diabetes. And whilst it’s kind of not, it’s not the same, obviously, it’s a very different condition, she still lives a very full abundant life and is traveling through Latin America, living in Mexico City at the moment, she still faces this every single minute of the day.

    Fiona Moss 25:55

    Through the night, you know, it’s not something you can just put down and go for a walk or something. And having again, that, another situation very, very similar come in and just remind me of how lucky you know, I am other people in my situation, where my challenges, be at whether they are made up or not, I can probably put them down and walk away.

    Fiona Moss 26:19

    But I’m very acutely aware of that some challenges, you really can’t. And, yeah, I guess that’s just really sort of embedded me this understanding, I can’t understand it. And I wouldn’t be able to understand it, because I’ve never lived actually in it. But I’ve had the closest experience I possibly could have had,

    Bill Gasiamis 26:38

    I was afraid that you would say what you said, and that the only way to really bridge that gap is unfortunately to experience other people’s, or your own pain and suffering, you know, situation that is part of life, it’s just life, right? And then now you’re living it, and you have to learn how to live with it.

    Moving On With Deficits

    Bill Gasiamis 26:59

    But what you said about your friend with diabetes is, that’s the thing about it, it’s like if you don’t manage it, you will die. It’s as simple as that. So it has to be managed. One of the things that I find with a lot of stroke survivors is they re-traumatize themselves every time they notice one of their deficits, or they fall over or whatever.

    Bill Gasiamis 27:26

    And they go back to the moment when it happened. And they relive it, instead of having moved on from it and discussing it objectively, they are re-imagining the entire process of the first instance, for example, right? So I talk about the stroke every single day as well.

    Bill Gasiamis 27:47

    But I don’t relive the experience, I talk about it as something that happened in the past. And I’ve almost separated the left side numbness from the stroke, it’s just something that I have, that when I wake up in the morning, I have to make sure that my left leg is actually touching the ground before I stand up, because I get out of the of the bed on the left side.

    Bill Gasiamis 28:10

    And if my leg is numb, and I don’t pay attention, I could fall over and end up into the mirror or into the wardrobe. So that’s kind of just life everyday now. And the fact that it happens, I know that happens because of my brain hemorrhages and brain surgery, but it’s not what’s happening to me now. It’s just me waking up in the morning and going about my business.

    Bill Gasiamis 28:38

    You know, waking up my sleepy leg, which has another 45 minutes or an hour to go before it’s fully awake, even though it’s always going to be numb. When you guys do the work that you do on a daily basis for the Natalie Kate Moss Trust, do you ever feel retriggered? And does discussing your sister and what the fund is doing and what the trust is doing bring back those emotions? Have some of them not been dealt with? Or still are they appearing?

    Fiona Moss 29:18

    Yeah, no. And I actually think this goes back to what we were saying earlier, which is when we are don’t have the capacity or the understanding about how to discuss certain things, people shy away from it. And they don’t know how to deal with it. And I actually think that being able to understand how to have those conversations is actually incredibly healing and empowering as well.

    Fiona Moss 29:43

    And I think, you know, you do really start to understand a bit more about life, you know, you could go deep or you could go into this a lot more, but you could talk a lot more about like, you know, the impermanence of life and actually, I think so often people get scared of those conversations.

    Fiona Moss 30:00

    But you know, through these events through my own life, I’ve become very acutely aware of that. And actually, I’ve been able to take those situations and learn from them and move forward and grow with them, as well and use them as impetus to move forward.

    Fiona Moss 30:18

    Again, this is probably another reason why we’ve taken another level in the trust, because, you know, we really want to make sure that we’re not just doing this for fun, you know, this isn’t just a nicety. This is actually to really make a bold step forward. And I think, of course, I mean, I think is it the Kubler Ross, you know, five stages of grief.

    Fiona Moss 30:33

    And, you know, that it, we’ve all been through the process of sadness and guilt and anger. But, you know, ultimately, it’s about moving forward into that level of acceptance, as well. And just take time, of course it does, I’m in quite a bit self-development world, you know, my business is all around that, which then forces me into doing that as well.

    Fiona Moss 30:42

    And I do truly believe that actually, by facing into it, rather than avoiding it and accepting that every time I’m going to have this conversation I mentioned whose name I get triggered, I don’t want that to be the case, you know, I want to be able to almost shift the story.

    Fiona Moss 31:23

    And, you know, recognize that maybe this is actually, unfortunately, so but actually, rather than dwelling on it, how can we use her situation and what happened to her as a way in for something much bigger. And as a way to support more people, you know, just like you said, right at the beginning, you know, we can do work to help people who we don’t even know and stop them from having the same tragedies that we’ve had in our family and our life as well.

    Fiona Moss 31:55

    But I do really believe that actually, rather than being triggered by it every single day, to do the work, do you know really go into it, you said it before about the skill sets, the skill sets to move forward? This is no different. And it’s how can you create the skill sets to be able to navigate this situation, and to go in and ask the really hard questions and to support yourself.

    Fiona Moss 32:22

    And that will depend on where you are in this journey and how much time has passed. But I’m actually not really a believer of healing comes to time, time does help to a degree. But you could still be caught up in that place where you get triggered every time if you’re not willing to maybe step into the horrible place where you do have to kind of maybe do some of this work or face into it or have the conversations.

    Fiona Moss 32:49

    But it’s a skill and like any skill or any muscle, we have to train it, and we have to do the work around it. And yeah, I’m quite comfortable talking about all of these things, now very comfortable talking about death, very comfortable, you know, talking about Natalie, because I do truly believe that, you know, I’ve done that work.

    Fiona Moss 33:08

    It doesn’t mean I don’t miss her doesn’t mean I’m not incredibly sad by it, it doesn’t mean that I wouldn’t love to have her, you know, in my life right now, and you know, for everything that I have in the future. But I’ve come to peace with it. And that’s incredibly empowering. Because what that then allows me to do is so much more for other people in this space.

    Bill Gasiamis 33:32

    You’re controlling the controllables, and you’re letting go the things you can’t control. And you’re not really controlling the controllables, what you’re doing is you’re using the controllables, you’re going okay, what can I control, well how I respond, I can respond by doing nothing, or I can respond by making life better for other people.

    Bill Gasiamis 33:52

    And that’s fulfilling. And it’s a little bit about you, but it’s also a little bit about them. And that’s a lovely loop, that’s a great reason to do something that’s about you, you feel better about it, but man, they feel better about it. And they’re going to achieve success in the work that they’re doing at the university, and therefore they’re going to impact lives better.

    Bill Gasiamis 34:15

    And we’re all doing this amazing loop of being on the planet to actually make each other’s lives better or different or more meaningful, or at least make people feel like hey, we, we care for you. And even though we’ve never met you, we were rooting for you. We want you to be well. We want you to recover. It’s far better than the narrative at the moment around the world.

    Bill Gasiamis 34:38

    And what we’ve just gone through the last couple of years. And if there was more of that, it would be great. And being triggered every once in a while I still get triggered. I’ll get up and talk on the stage and I’m thinking I’m having a great day. And then I’ll say something and I’ll start crying and then it’ll be like, Okay, here we go. Again, just get through this get through this, but let it out.

    Bill Gasiamis 34:58

    It actually endears The crowds weigh more to me than I ever could plan. So it’s like, oh, okay, all right, okay, I’ll get all of the emotional, you know, I’ll bring them aboard emotionally even further so it’s kind of a positive.

    Bill Gasiamis 35:22

    And it’s never a negative, by the way, when I cry, it’s always a positive because it means I don’t necessarily know what it means, but it means something when it’s happening, it’s meaningful. I don’t know what but it doesn’t matter. It just feels good.

    Fiona Moss 35:38

    Yeah, and I think as well, you know, we are human beings. So there’s a very big difference between being triggered every single time you say my situation, if I named Natalie or if I spoke about it every single time, then someday, you know, just something just triggers you.

    Fiona Moss 35:54

    And that’s a human being, but actually, you know, it’s by developing, as I said, for developing that skill set that goes, Okay, well, this has happened. So how do I how do I deal with this today? And how do I move through it, rather than allowing it to pull you pull you down every single time?

    Fiona Moss 36:11

    You know, if you would allow that to do every single time you spoke how it happened to you 10 years ago? You wouldn’t be doing this, you wouldn’t be standing on stage, you won’t be doing any of that. And I just think it’s there’s an acceptance that it doesn’t mean everything goes away. But it’s being able to move forward with the situation or the hand that you’ve been dealt.

    Bill Gasiamis 36:33

    Yeah. Tell me about your sister.

    Intro 36:35

    If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like now long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse, and doctors will explain things that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.

    Intro 37:00

    If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called seven questions to ask your doctor about your stroke.

    Intro 37:20

    These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website now, recoveryafterstroke.com and download the guide. It’s free.

    Bill Gasiamis 37:39

    What do you remember about her?

    Natalie Kate Moss

    Fiona Moss 37:42

    She was very loud. She was an amazing sister. She was like, you know, the ideal older sister, we were just under six years apart, but still very, very close. We speak on the phone every day. would have like sleepovers in each other’s rooms when we were younger.

    Fiona Moss 37:45

    And very, very bubbly. Very different in many, many ways. You know, I’m probably a lot more academic than she was she was quite a party girl. But very, very creative, very artsy and amazing artist and was pursuing a merchandising role with Karen Millen which is a big clothes fashion brand down in London and that’s actually where she was when she had her brain hemorrhage.

    Fiona Moss 38:31

    But very very sporty. And all my family are and we were very very close family. And yeah, just very fond memories. We used to go to Spain every summer so I have lots of fond memories of doing silly things out there. And I think that’s one of the hardest things really is that you know, we weren’t really just sisters we were very much best friends.

    Fiona Moss 38:57

    And I think actually that’s always harder particularly when you you know you imagine especially as a girl you know, you imagine having your maid of honor, or you know bridesmaid or whatever at your wedding and you know an incredible auntie. I mean I don’t have children now but my brother has one and another one on the way and she would have been just you know an incredible Auntie.

    Fiona Moss 39:18

    The sort of Auntie I imagine her to be which was just let you get away with stuff and would probably allow you to drink alcohol a little bit too young you know, that sort of auntie and I just a lot of fun had a very cheeky attitude. And beautiful like absolutely beautiful. So yeah, and incredible, an incredible sister to have.

    Bill Gasiamis 39:41

    Sounds like she also like to be a little bit of the center of attention.

    Fiona Moss 39:45

    One would say yeah.

    Bill Gasiamis 39:48

    Which means that she would be absolutely loving all this stuff being done in her honor and about her and with her etc because she’s still part of that whole process? What is she thinking about you guys doing all this stuff in her honor and to help other people? Is she going, you guys are honoring me, or it’s amazing that you’re helping other people? What is she thinking?

    Fiona Moss 40:20

    I probably think she think would be thinking both. She was a very, very kind person. So she would be the sort of person that would drop everything to be with other people. And you know, even more, so me. And she would be the first person to, you know, make sure somebody’s birthday and they were celebrated, and they were showered with love.

    Fiona Moss 40:45

    Or sponsoring somebody to do something, she was always the first person in the queue to do anything like that. So very, very, very giving. And I certainly believe that she’ll be immensely proud that she’s probably I imagine, probably not so much that it’s about her, but actually that, you know, she’s been able to be the catalyst for such good.

    Fiona Moss 41:09

    And just a real reflection of the character that she was like, whilst fun and electric and wild. Also, you know, as I say, incredibly, incredibly kind. And I think she would be immensely immensely proud that her name is being driven forward in this way.

    Bill Gasiamis 41:33

    Yeah. What about your big bro? What kind of role does he play? What does he do?

    Fiona Moss 41:38

    He does all the stuff that I don’t want to do. The numbers, that sort of side of things, that he’s an incredible, incredible job. As I said, he really drove it forward for many years. And he deserves so much credit for establishing the relationship that we have with Manchester University, particularly in the early days, and getting everything rolling.

    Fiona Moss 42:06

    He very much has laid a great platform for us to grow off. And, you know, I’m really, really proud of him for that. And actually, it’s really beautiful to kind of be able to work with him on this. And to be able to come together as siblings to support our other sibling. It’s a really, really lovely thing to be able to do with him as well.

    Fiona Moss 42:32

    So yeah, we’ve got lots of fun, exciting plans for a massive 10 year anniversary fundraising dinner that we’re holding for injure people in October, which is quite a big event we’re trying to organize.

    Fiona Moss 42:46

    And that’s sort of one of my main roles. I’m roping him in on some odd things that I told him about and he wasn’t so pleased. I’m sure he will be on board. So yeah, but it’s actually quite fun. And it’s exciting. And we’ve been able to bring in lots of amazing people. Whether it’s doing charity bike rides, for the London Marathon, and bringing them all together is really, really lovely.

    Bill Gasiamis 43:16

    What’s your brother’s name?

    Fiona Moss 43:17

    Sebastian.

    Bill Gasiamis 43:19

    Sebastian, let’s make sure that we acknowledge him correctly. We just wont talk about him in the third person. Does he kind of pull rank as well? Does he do the whole this is what’s going to happen today. I’m not doing this. I’m not going down there?

    Fiona Moss 43:35

    Now, unfortunately, that’s probably me. So I imagine he might listen to this and be like, well, yes, that’s probably true now. But no, he’s made like he really is amazing. And in a way that he’s kind of really allowed me to now take the reigns in different areas, and really allowed me to just go with it.

    Fiona Moss 43:57

    He’s probably quite relieved, to be honest as well, you know, but somebody has really come in to support but he’s great to kind of work with on it, as I said before, and yeah, is really happy for me to kind of just run with some ideas, no matter how mad they are. And he’s been really, really great.

    Running Things With The Family


    Bill Gasiamis 44:21
    In a moment, I want to talk about the donors. But before I do that, what about your parents? How are they going these days? How are they sort of involved?

    Fiona Moss 44:35

    Any parent, losing a child, whether they’re a child or an adult, is heartbreaking. And I know it really, really broke my parent’s heart, obviously. But I definitely believe that, you know, as I said early on that my mom got really involved in the trust and wanted to be involved wanted to go to all the meetings with Manchester University and be really there and intending and Supporting where she could.

    Fiona Moss 45:01

    And in the early days, we did things like charity, clothes sales, which she organized, and you know, and is doing things like that as well now, and it’s just incredible. I think they, they, as I say, to help in that capacity now, you know, so where they are, but it’s definitely specialized sort of taking the lead. And I think it’s just been a lot for them, you know, over the years to kind of come to terms of it. But they’re doing amazing job, amazing job with it.

    Fiona Moss 45:30

    And, you know, they’re really kind of like living life, the way that you know, I think Natalie would want them to as well, or they would go on big trips, but they haven’t been able to because of because of lockdown. So hopefully, they’ll be able to go on something quite monumental, quite soon, but you know, they’ve got an incredible grandchild, especially Max they absolutely adore, they’ve got him another grandchild on the way from my sister in law as well.

    Fiona Moss 45:57

    So yeah, they, they, I think we’re a real collective family unit. And I actually think that having the Trust has really helped, you know, maintain that I definitely know other families that may be have fallen a little bit as a result of a death of one of them, you know, the structure, check the dynamic changes, I would definitely say that Natalie was like, because she was the middle child as well, she was definitely like a rock between everyone.

    Fiona Moss 46:30

    So the dynamic hugely shifted. So we were all just again, not only going through grief, collectively, individually, but also the dynamics shifted. And we were having to relearn that dynamic as well. So, yeah, and it took a while, I guess, to kind of come to terms with it with all of that as well. So but I think definitely with the push that what we’re doing with Manchester University, now, it’s really given everyone a bit of a focus.

    Bill Gasiamis 47:02

    There’s a boring part of everything that you’re doing. And that’s the numbers, but it’s probably the most important part because you’re relying on donors to give you their money. And then you want to make sure that what happens at the other end is the money goes where it’s meant to go and not in places it’s not meant to go.

    Bill Gasiamis 47:22

    Talk us through a little bit about that process. So one day you I’m walking down the street in Manchester, and there’s somebody saying, hey, give us some money because this, Natalie Kate Moss Trust is raising money for research into brain hemorrhages, aneurisms, whatever.

    Bill Gasiamis 47:45

    And I want you to know that that’s actually going into the research team directly, right now, talk us through how important that is for your organization, how transparency is really important. And how you guys move from that place where you receive the money to then actually delivering it, how does that all happen?

    Fiona Moss 48:13

    Yeah, and I think this is where, you know, a small charity is actually in a way, he probably has a lot more power than a bigger charity or a lot more, you know, can actually deliver what they’re saying they’re delivered to a degree, I’m not saying you know, bigger charities don’t but being able to say, You know what, this money is directly going to this.

    Fiona Moss 48:33

    And we had a big dinner at Twickenham Stadium in just literally three, four weeks before the pandemic. And we had Manchester University talking that and we could quite easily talk about the money that these people have given us over the years, and literally what it’s gotten to, because we have such you know, such little things in the middle to that is going to impact the donations.

    Fiona Moss 49:00

    And that is incredibly empowering and we can be really powerful it can be really powerful to that money has directly delivered these results. You know, it’s very rare you get that with the big charity but we can literally say that we’ve done this type of research and has shown us this which I think is actually incredibly motivating for donors as well that they can directly see like what their money is going towards as well.

    Fiona Moss 49:27

    But yeah, our fundraising we talk about this 300,000 pounds but we deliver 100,000 pounds every year so that’s sort of our rolling target every single year. But it’s like anything in this right the more we can raise and we can support them the more results we can deliver and that’s what we’re after.

    Fiona Moss 49:46

    Ultimately, you know, this isn’t about profit or anything like that. This is not lining anyone’s pockets. This is this is real results. And as you said right at the beginning, this is real results for people that we you know don’t even know to to ask potentially ourselves, you know, in a few years time, you know, this can happen to anyone you read the stats out before.

    Fiona Moss 50:06

    So this is really about supporting, you know, that prevention, obviously the treatment as well with that prevention as well. And but I think it’s incredibly motivating for people that are donating to know where that money is going, you know, like anything you want to know what you’re spending spending it on. So yeah, obviously a big part, you said, the biggest part of that, ultimately is around the numbers.

    Fiona Moss 50:32

    This is where we’re really trying to get people involved, we’ve got lots of different things going on, in terms of this fundraising plan, whether it’s a 300 person fundraising dinner, whether it’s people doing 100 mile bike ride with a number of places in different bike ride challenges, a marathon 10k, whatever it may be, and inviting them in to do that.

    Fiona Moss 50:54

    And then we’ve also got principal sponsors, as well, we’re actually looking for a few more as well. So if anyone’s listening to this, and entries, then please do send us an email. But, you know, we have a principal sponsor who we work with, and we’re working with over the three-year period.

    Fiona Moss 51:09

    And they’ve been incredible, you know, there are gyms over about, I think they’ve got about 120 landers, and 14 of them are running the Manchester marathon. They do fundraising events all year. So they’re really drumming up their awareness of the trust as well as supporting us financially.

    Fiona Moss 51:29

    So, you know, having that level of support, and then it’s, you talk about those numbers, in a sense of how many people are actually what you’re saying about, do we have enough of a conversation around, it will actually, you know, there’s a lot of people at that gym and friends or family of them, who have really been affected by some sort of neurological condition, whether or not they’re more a child of theirs, or parent or a sister or brother.

    Fiona Moss 51:53

    And so they’ve really been wanting from an emotional level to step up and to help as well. So I think, you know, the more people we can reach, I think we’ll we’ll start to see that more people are emotionally wanting, will want to help us as well, from a personal point of view, because it does affect so many people. So it is a big part of it, it’s definitely something we’ve got a strong plan for over the coming years.

    Fiona Moss 52:17

    And I said before, you know, it’s a bit more strategical than it was. But you know, is about just making sure that we’re reaching the right people who want to support us as well, we don’t want to be forcing anyone to, you know, to make a donation when it doesn’t necessarily connect with them.

    Fiona Moss 52:33

    But as I said, you know, Manchester University are praying, some have been able to create such or meet such steps and create a center of excellence, it’s called the Jeffrey Jefferson Research Center. And that wouldn’t have been possible without all these people, you know, supporting us in the way they have been. So the results, the results are coming. They’re they’re proving themselves already.

    Bill Gasiamis 52:56

    How many hours do you reckon? This is a tough question, do you reckon goes into raising 100,000 pounds, how many hours?

    Fiona Moss 53:07

    I don’t know, I don’t know, there’s been a lot of work on it over the last year or so. Just making sure that we get 50 places in a marathon, and we get them all filled, and we do all the admin around that and we support everyone, that’s just one small part of it, let alone this 300 person event coming up on October, you know, there’s just so many ways, even just thinking strategically about okay, how are we going to do this where are we going to get the money from getting sponsors in supporting them.

    Fiona Moss 53:37

    And this is a charity that especially I run on the side, you know, we’ve had early we’ve got businesses as well. So it’s been a lot of work, but you said it before, you know, ultimately, it comes down to purpose and it comes down to the reason why we’re doing it. And there’s a very clear reason why we’re doing this, who we’re doing it for but actually what we want to achieve out of this as well.

    Fiona Moss 54:03

    And it’s by having that purpose that’s what’s helped us ensure that it carries on for you know, has carried on for 10 years and it will carry on and it will grow bigger because even when it’s late at night or Sunday morning or whatever it may be you know, we’re sat down and we’re doing a bit of planning around it we’re doing the admin around it as well to make sure that we keep pushing on.

    Bill Gasiamis 54:25

    And you’re running your own business and you’re living your own life and you’re being an auntie and Sebastian’s being a dad and my God you guys so much energy that needs to go into this and then you probably got I know in Australia government regulations and things that you need to comply with and abide by and report back on is it similarly strict in the UK?

    Fiona Moss 54:55

    Yeah, there definitely be some bits that some that’s in Sebastian’s. But there’s a lot of things that we just need, we do need to comply by, I think we actually shifted from a, we were registered as transferring the beginning and we converted it to a charity. I can’t remember it was a very, very long process.

    Fiona Moss 55:16

    But actually, by becoming a charity and having a charity it’s enabled us to do a number of other things. So it’s quite from a fundraising perspective, and actually being able to get ourselves in different arenas, it’s actually been really, really helpful. But yeah, it’s like running a business. Right. You know, there’s accounts that need to be submitted, there’s all the other legalities around it that we just need to make sure that we’re checking all boxes as well.

    Bill Gasiamis 55:45

    Do you receive donations from people from other countries far and wide?

    Fiona Moss 55:50

    We do. Yeah, we receive donations from anyone. We’ve had a number of different people do things all over the world, we ran an event, actually in February called the 101010 Challenge, where we asked people to commit something 10, like, 10,000 I run, 10,000, walk, whatever, it’s something simple, simple, donate 10 and nominate 10 people to do the same as well.

    Fiona Moss 56:13

    And then we have people all over the world doing that, whether it was in Lima, in Peru or America, Egypt, with some people, people in Amsterdam as well. So yeah, some incredible people supporting that as well. So, but we’ve had people doing different challenges from all over the world.

    Fiona Moss 56:31

    And we’re so incredibly grateful for people, you know, we have people who set up direct debits as well that I don’t even know them. And they’ve kindly set up a direct debit to support every single month. So you know, there are some incredible people out there, you know, we’re setting up our system and a process, but it’s the people who support us, we really are the incredible people.

    Bill Gasiamis 56:54

    Yeah, it can’t be done without them, really, they’ve come together to support you, they’re probably been impacted in some way, shape, or form. And they may not and they certainly don’t all need to have the energy that you guys have to run a foundation to this level, but they’re thankful that you’re doing it.

    Bill Gasiamis 57:13

    So they just support you for doing it. And then they don’t have to put so much energy and effort into it. They’re more efficient at supporting, then you guys, you guys spent so much time doing it. But I love that you do it. And I love that it’s your passion. And I love that you found your purpose.

    Bill Gasiamis 57:31

    And that purpose, I’m sure helps to fill your cup, when other things get difficult when the rest of life catches up with you. And you’re going Oh, well. You know, things are tough at the moment.

    Bill Gasiamis 57:42

    Okay, that’s still a little bit of heart-centered work and go back to, you know, the trust and think about our big sister and, you know, the family at large and the rest of the community that’s benefiting and it’s like, wow, man, that’s that’s a really great reason to be around on the planet for.

    Fiona Moss 58:00

    Yeah, yeah, I agree. And ultimately, you know, it was a base purpose as well. But it’s kind of like what you’re saying before, it’s like, some problems, we do makeup. And we get really frustrated. And that kind of grounds you, when you have this work to do that, you recognize that, yeah, this happened and we couldn’t control it.

    Fiona Moss 58:21

    But I’m getting frustrated by something that I shouldn’t really be getting frustrated about, you know, it doesn’t matter. And it really just grounds you actually, by having this work constantly kind of on the go.

    Catching Up With People


    Bill Gasiamis 58:35
    One of the things that stroke’s done for me is it’s reminded me well it’s done lots of positive things, but it’s really reminded me of how important it is to catch up with people when catching up is on your mind, but you don’t really get around to it. It’s like, because there’s, I’ve lost a few people in my time, you know, I’m 47.

    Bill Gasiamis 58:57

    So there’s been plenty of people that have come and gone since I’ve been on the planet and will continue to do so. And it’s like I have this thing that’s popped up into my head recently in the last sort of six months that I’ve been grappling with it because I don’t want to seem insincere when I say to other people, I don’t want to come across as being blunt, or rude or anything.

    Bill Gasiamis 59:20

    But it’s like, we haven’t caught up with certain people for a period of time we’ve been supposedly, you know, trying to catch up for six months or 12 months or whatever. And COVID was a good excuse for a long time. We all love each other but then we found other excuses.

    Bill Gasiamis 59:37

    We all want to catch up and then we found other excuses. And I’m like, if I did die, all of those people that I haven’t been able to catch up with for the last seven months would definitely make time for my funeral right now, trying to get them to make time to have a bloody beer with me is near impossible.

    Bill Gasiamis 59:59

    And I don’t want to say that to them, because I think that might be a bit abrasive or harsh or whatever. But that’s kind of what I’m thinking. And that makes me then go, I’m going to try again, I’m going to call them again, or I’m going to catch up with the other person who has said that to me that we need to catch up.

    Bill Gasiamis 1:00:17

    And we haven’t made it happen yet. So I’m really motivated to continue not missing out on those moments. That could not happen again, tomorrow onwards like it could just not happen again that’s it.

    Bill Gasiamis 1:00:36

    And I don’t know when and I hope it’s when I’m 99. But it could happen before then. So does this whole work that you do, does it remind you that you need to pay attention to the people that are around you, and that you love, because of the same reason that you or they or anyone, could just not be here tomorrow.

    Fiona Moss 1:01:04

    I definitely think that this work, and obviously the perspectives that I’ve kind of discussed, like, particularly also with my boyfriend, as well as completely shifted my outlook on life. I’m very much like what you’re saying is about living today, right. And I’m, a big picture thinker, and I want to do all these big things I want to make the impact, etc.

    Fiona Moss 1:01:26

    But I’m also at the same vein every single day, will be very aware of those small moments, because I appreciate that it is the small moments that make life it’s not one big thing one holiday a year or whatever it may be, it’s every single day. It’s the small moments, it’s the moments between moments that are actually really, really powerful, and really beautiful.

    Fiona Moss 1:01:46

    And that’s what makes life and I think understanding your priorities, really recognizing what you want from your own life. And understanding what relationships support you to do that and support you to be yourself and support you also to just I don’t know, just connect more with your your own life and really allow you to live life to the fullest in the way that you want to do it the way that’s fulfilling for you.

    Fiona Moss 1:02:14

    Because there are many different relationships that we have in our lives, and some will stay some will go, you know, some come in for a reason. And they leave for a reason as well. And I’m a true believer in that. And I’m a true believer that not everyone needs to stay to but it has certainly made me want to.

    Fiona Moss 1:02:35

    For those who I’m deeply connected with, you know, I want to spend every minute with them. And I want to talk to them all the time to share moments with them to share experiences with them as well. I’m, I’m a believer in my in terms of my relationships, I want to have deep, meaningful relationships, just that I want to do stuff in my life that is meaningful, lived places that are you know, providing me with experiences rather than just superficial things.

    Fiona Moss 1:03:03

    But that’s me. And that’s how I want to enjoy my experiences. So yeah, I definitely prioritize those relationships, which enabled me to do that. Because they are the most fulfilling to me. So if I did die tomorrow, I know that I’m cultivating relationships that make me feel like that, rather than necessarily hanging on to specific relationships, just because I’ve had a relationship with them in the past for whatever that relationship look like.

    Fiona Moss 1:03:28

    And I think by shifting the lens on it like that, it really enables you to be like, Okay, well, if I speak to I’ll have an amazing time if they’re there today or tomorrow. Doesn’t mean, I don’t love them less doesn’t mean they’ve not had an impact on my life. But do I want to prioritize constantly feeling like I need to chase someone?

    Fiona Moss 1:03:47

    No, probably not. I want to be able to sit down, enjoy life, enjoy my own company, you know, go travel the world have these experiences, have deep meaningful conversations, and discuss the things that matter. And that’s what matters to me. It’s different for everyone. But I think that’s the way I approach it. And naturally for me, that makes me less scared if I did you know, something happened tomorrow.

    Fiona Moss 1:04:13

    I’m not worried that I’m scared that I don’t feel like something isn’t done. Something isn’t complete. You know, so many things I want to do. But you know, I can’t do everything right today. And there’s there’s always going to be something I want to do. I know 99 There’s going to be something I want to do because we can’t complete everything in the world. But I know that I’m living in a way that allows me to do that. And I think that’s I find a sense of peace with that as well.

    Bill Gasiamis 1:04:44

    Yeah, I love it. That’s awesome. Where can people go to find out about Natalie Kate Moss Trust. Where do they go to donate? How can they follow you on social media?

    Fiona Moss 1:04:58

    Yes. If you wouldn’t be so kind to support us or to find out more about us, we have a website, which is www.nataliekatemoss.co.uk, our Instagram, we do have an Instagram account, which is Natalie_Kate_Moss_Trust. So you’re just chuck in three underscores in there.

    Fiona Moss 1:05:20

    And if you do want to donate, the best place to go is on our website. And you can find different ways to donate the main places, we have an account. And so it’s just super, super simple. And we also have a text to donate. That’s only available in the UK, though. So if you’re UK based in the UK listeners, but you can provide on donate on just giving anywhere in the world.

    Bill Gasiamis 1:05:43

    Yeah, if I was in the UK, I would definitely be attending your event. And if I ever get to the UK, I’ll probably go to the website, find out when the events are and then be there at the same time so that I could attend an event, a 300 person event, raising money for this amazing foundation in memory of Natalie, done by the family, I think is just would be just an amazing thing to experience.

    Bill Gasiamis 1:06:14

    I really want to thank you for the work that you’re doing for the people that you don’t know. And for me personally, who is benefiting from the research that’s being done in the universities across the planet. By people that don’t know me, I just find it fascinating that somebody wakes up in the morning and they go, You know what I’m gonna work out how neuroplasticity helps people survive.

    Bill Gasiamis 1:06:40

    I overcome this. And I’m like, Man, I wish I was that smart to come up with something amazing like that, or the best I could do was trying to find out how to paint somebody’s house. And it was like, crude as that is this is next level fulfilling. So thanks for that. Thanks to Sebastian as well for all the work that he does.

    Bill Gasiamis 1:07:05

    And I’m going to subscribe to your newsletter. And I encourage other people to subscribe to the newsletter to be kept up to date with what’s happening. And I wish you well with all your future projects, and your own personal life and business. I look forward to connecting with you in the future.

    Fiona Moss 1:07:25

    Thank you so much for having me, Bill. It’s been great. And I just want to say as well, like, thank you so much for running this podcast. You know, we said it right at the beginning. Is there enough conversation going on around stroke? No, but you’re facilitating that and getting the ball rolling. So thank you so much.

    Bill Gasiamis 1:07:39

    Thanks for joining us again today for another episode of the podcast. I hope you enjoyed it. If you got something positive out of this conversation, please comment, like and share. If you’re watching on YouTube, give the show a thumbs up leave a comment I love seeing people’s comments and responding to them.

    Bill Gasiamis 1:07:59

    This will also help this show rank better wherever you may be watching or listening any feedback, any review, any comments that you leave will make a massive difference to how the search engines rank the show. And as a result, how many people will find them.

    Bill Gasiamis 1:08:17

    And then as a result, what a difference it could make for caregivers, and for stroke survivors alike, who are perhaps going through a little bit of a tough time now. So any help in that way from you would be a really massive help and I would really appreciate it. Thanks so much for listening. I look forward to seeing you on the next show.

    Intro 1:08:38

    Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. The opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

    Intro 1:08:55

    All content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis the content is intended to complement your medical treatment and support healing.

    Intro 1:09:12

    It is not intended to be a substitute for professional medical advice and should not be relied on as health advice the information is general and may not be suitable for your personal injuries, circumstances or health objectives did not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or is a substitute for the advice of a health professional.

    Intro 1:09:32

    Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition please seek guidance from a doctor or other medical professional.

    Intro 1:09:46

    If you are experiencing a health emergency or think you might be, call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department medical information changes constantly while we aim to provide current quality information in our content.

    Intro 1:10:02

    We do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide however third party links from our website I followed at your own risk and we are not responsible for any information you find there.

    The post In Memory Of Natalie Kate Moss – Fiona Moss appeared first on Recovery After Stroke.

    1 hr 12 min
  • Living With Nystagmus After Stroke – Sammy Taylor

    Living with Nystagmus after a stroke has seen Sammy Taylor go on a deep journey of acceptance and rediscovery that has enhanced her life with unexpected blessings once thought to be unattainable.

    Instagram

    Highlights:

    03:00 Introduction

    04:39 Diagnosed With Brain Tumor At 18
    12:43 Discovering Suppressed Emotions
    21:53 Always The Sick Person
    30:36 Living With Nystagmus
    42:32 Sammy Taylor’s Book
    50:32 Living Life After Stroke
    1:03:49 Being Independent After A Stroke
    1:20:16 Acceptance

    Transcription:

    Sammy Taylor 0:00

    I had a lady reach out to me on Instagram last Tuesday, she was frantically wanting someone to speak to because her daughter, Kirsty who was the same sort of age I was she’s 24 now, she has all the same compilations as me.

    Sammy Taylor 0:16

    And I think her mom was in sheer desperation and wanting, you know, some advice. And so I gave my WhatsApp number and had a conversation with her on Monday, and it’s crazy seeing her daughter because she has every single complication that I had like two years ago.

    Sammy Taylor 0:34

    We were talking about our eyes, we’ve both got nystagmus. And there’s currently nothing for nystagmus to treat it, every surgeon I’ve spoken to has said it’s permanent. And when you acquire it later on in life, you also get what’s called Oscillopsia, which is the sensation that the world around you is moving.

    Sammy Taylor 0:55

    So I walk down the street and the trees and the people are everything around me is moving in front, which means that when you had like a cerebellar stroke, and you suffer with balance issues anyway, on the cerebellum like a tumor or anything, it makes the balance, like harder to comprehend and harder to deal with.

    Sammy Taylor 1:15

    And I just said to her, look the reason I live with it now is I can cope with it almost I was in a state of shit while I’m with it two years ago with that sensation. But the reason I’m not that in that case anymore, is not because it’s changed it’s no different than it was.

    Sammy Taylor 1:31

    However, I am just fully hopeful, and trusting the fact that in five or 10 years, there will be more, you know, studies that come out all the time, and in 10 years, I’m still only going to be you know, 37 and so, you know, even if it’s 20 years, it’s still a good age. If I lived that long to then, you know, have a cure then.

    Intro 1:55

    This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after a stroke.

    Bill Gasiamis 2:09

    Hello, and welcome to another episode of the Recovery after Stroke podcast. Recently, Spotify released a new feature, that allows you to rate your favorite shows, in a similar way to how the Apple podcast app allows it.

    Bill Gasiamis 2:23

    If you think the show deserves a five-star review, I’d love it if you went across and left the show a five-star review right now. And then come back and listen to this episode. The reason for this is because it will help the show rank better on search engines and stroke survivors who are looking for information and stories about stroke recovery will be able to find the show easier and better.

    Bill Gasiamis 2:49

    And therefore will make a massive difference in their recovery. So go to your favorite podcast app and share what the podcast means to you. That really will make a huge difference.

    Introduction – Sammy Taylor


    Bill Gasiamis 3:00
    Now this is episode 186. And my guest today is Sammy Taylor, who experienced a cerebellar stroke that has impacted her eyes leaving her with nystagmus which according to the American Optometric Association is a vision condition in which the eyes make repetitive uncontrolled movements.

    Bill Gasiamis 3:20

    These movements often result in reduced vision and depth perception and can affect balance and coordination. This involuntary eye movement can occur from side to side, up and down, or in a circular pattern. Sammy Taylor, welcome to the podcast.

    Sammy Taylor 3:37

    Thanks so much for having me.

    Bill Gasiamis 3:39

    My pleasure. Thanks for being here. Tell me a little bit about what happened to you.

    Sammy Taylor 3:46

    So, in 2019, I had brain surgery. So I had a craniotomy to move polycystic astrocytoma and during the surgery, part of my brain didn’t get any blood supply. And so I woke up with a stroke the next day, which was classified as a cerebellar stroke.

    Sammy Taylor 4:11

    And well, it just affected I guess everything in the cerebellum area, which is where the tumors are anyway. So it’s very hard to say whether I mean because I was struggling with coordination and balance issues on that it was kind of hard to say in the following months recovering whether things were getting better or things were the way they were because, you know, the position of the tumor and so on.

    Sammy Taylor Was Diagnosed With Brain Tumor At 18

    Bill Gasiamis 4:39

    When we hear about brain tumors, people usually don’t have enough information to make a qualified response at the time when they’re given the news that there’s a brain tumor in there. And we have to go in, what’s it like to be in a doctor’s surgery to go through all the tests, and then get a result like that, especially when you’re so young?

    Sammy Taylor 5:06

    It’s really funny actually, because first diagnosed with a brain tumor when I was 18 years old. So I didn’t have the surgery until five years later. And it’s funny because I’m writing a book now.

    Sammy Taylor 5:22

    And I’m trying to do some of the emotional work because I realized that when I read it for the third time, it was kind of, you know, I just dumped almost the events as I could recall them. But it’s because they happened so long ago, that now I get asked, Oh, so what was it like? Or when did you find out you had a tumor, then I have to kind of remember that.

    Sammy Taylor 5:43

    I lived with it for like, five, or six years, and I almost forgot that I had it because I was so naive and young at the time. And so now that I’m working with a therapist each week to kind of add some depth to that back. And she’s really good in terms of I mean, it’s quite exhausting had a session this morning, where she puts me in, like, you know, a meditative state and takes me right back to that room.

    Sammy Taylor 6:06

    So I can feel every emotion. And on Monday, we went right back to the beginning, where I was like, 18 at a doctor’s office, and I was like, wow, I had no idea that I even had this kind of reaction to it, that I’ve suppressed for so long. But I guess when I was so young, I remember thinking, I didn’t tell anyone at the time.

    Sammy Taylor 6:29

    So with who my ex-boyfriend is now, the two of us just strolled into the doctor’s office, I mean, I was having headaches, and my doctor at the time sent me for an MRI just to rule anything out. And so we walked into that surgery room and just thinking it was going to be, you know, a routine kind of “you’re fine, you can go home” That’s it.

    Sammy Taylor 6:53

    And so when they told us that we just weren’t expecting at all. And I remember just being in such shock and disbelief. And I don’t remember too much changing when I look back. And I was trying to say that to the therapist, you know, I was in shock and disbelief that it was almost a little bit of denial, I guess, because I carried on so normally like, as you can imagine.

    Sammy Taylor 7:16

    But then actually, when I was looking back on those five years between when I was first diagnosed, and then when I had the surgery, I did so many drastic things in that time, like I moved to a new city, I had a career change, I left my boyfriend of six years, I felt alone. And it was like I’ve done nothing for 18 years.

    Sammy Taylor 7:35

    And so actually, maybe subconsciously, I was just almost living as if I never accepted anything, you know, that convert that I guess in a way that I was living just in case, I was gonna find out one day that you know, the opposite can be true.

    Bill Gasiamis 7:50

    The one certain thing is death, every single day we’re closer to it doesn’t matter how old or young you are. The reality is that I asked the question on Instagram, just yesterday, I asked the guys what has stroke taught them, and some of them responded were stroke has taught them to live to not take things for granted, or that they never know when your time is up, or how quickly life can change.

    Bill Gasiamis 8:17

    And it’s given people this sense of gratitude, it’s given this person this sense of, I only get one shot at this might as well make the most of it to live actively, every day, they talk about living actively, in the life, not just sort of getting by, and not just sort of getting by for me, it resonated that’s kind of like you’re going through the motions.

    Bill Gasiamis 8:39

    You wake up in the morning, you go to work, you punch a card, for example, you come home, you pick up something to eat, you make something to eat, you sit down, you watch Netflix, or trashy TV shows or whatever. And I sort of see myself when I do that dumber than I was the day before.

    Bill Gasiamis 8:57

    Because I haven’t evolved or grown or developed anything new that I can take to the world and benefit from like, may benefit from and the world benefits from. And I’m kind of, you know, I’m 48 this year. So you think about the shortness of life more often. And my parents are in their late 70s. And we talk about let’s make a date, for example, to go somewhere to do something.

    Bill Gasiamis 9:35

    And the first thing they start with is, you know, God willing, it’s like if I’m alive and all these things, and it’s like, Well, okay, so at some point you become aware that life is going to end for me it was when the strike happened, it became obvious to me that it might not be another day after this or two or three or whatever.

    Bill Gasiamis 9:56

    So I needed to make a few things good, it took me three years to get to brain surgery. So there was quite a delay for me as well. And I was really good about it. When I got to brain surgery, I was really good. I had done all that work about, you know, telling people, I loved them, and sorry, and behaving more appropriately and apologizing more often and all that type of thing. What were the main concerns that I had? You had about did you say five years before you got to brain surgery?

    Sammy Taylor 10:34

    Yeah, I did, but no one knew. So it was just my ex-boyfriend at the time. And I wasn’t with him by the time I found out that I needed brain surgery. So it was just my mom, who was the only person that knew, and my older sister. And so then I just decided not to tell anyone that I needed surgery because it was almost like I couldn’t bear the questions of like, they would be so shocked as I was.

    Sammy Taylor 11:00

    But almost, then I would have to always explain that I’d been living with it for six years before and not mentioned anything. So I was torn between that. And then I thought okay, well, I’ve come this far in my head, then I was thinking well, unknowingly, but I’ve come this far, I may as well go get the rest without telling anyone.

    Sammy Taylor 11:20

    I just didn’t. And I just decided that I was so confident that it was going to be fine. I mean, I met with four surgeons before I had the surgery. I ended up getting to kind of semi-choose who I went with, which also weighed heavily on my mind when things went sour when I woke up because I thought this could be because I made the decision and whatnot.

    Sammy Taylor 11:42

    But essentially I was so confident that it’s gonna be fine. And all the surgeons had confirmed that, that I just decided then I won’t tell anyone, I will just you know, I won’t tell my family, I won’t worry, my friends or anyone, I won’t kind of have that negative energy on this journey with me.

    Sammy Taylor 11:59

    And I will just show everyone afterward when it’s like, well, then, of course afterward I looked fundamentally different. I couldn’t walk I couldn’t feed myself right for the longest time. And so then it was like a major shock, because then no one knew and it had the complete opposite reaction of what I wanted it to do wasn’t settling at all. It was oh my god overnight like this, you know, you’ve changed?

    Bill Gasiamis 12:25

    Yeah. Is there trauma associated with that? It sounds like you did a really good job of avoiding dealing with any emotional challenges at the beginning, and then you got through travel to do all these things. I think it’s great that you did that, regardless of whether or not you had a brain tumor.

    Sammy Taylor Discovering Suppressed Emotions

    Bill Gasiamis 12:43

    But I think it’s just great that you did those things. It’s one thing that I didn’t get to do when I was younger, and I regret not doing is going out and about and being with my friends and meeting new people overseas and all that kind of stuff. But was there any trauma associated with that, that you discovered when you went back into this hypnotic state with the therapist?

    Sammy Taylor 13:04

    Oh, there’s so much I mean, so in my book, there’s so many themes that I want to cover. And so each session I have with that we just have time to cover one. My book has all that lists all the major themes.

    Sammy Taylor 13:18

    So I pick one, you know, that I want to discuss and today was right after I had the stroke and it was taken back in that operating room when you know I woke up because even then I remember waking up after the surgery. And I couldn’t see at all I’ve gotten a segment in my eyes like both sides.

    Sammy Taylor 13:37

    And so at the time, before it settled down just a little bit like now I have a very small central window of gaze that when I first had the stroke, and it was like all over my eyes, I couldn’t see at all. So then I remember saying to the nurse, oh my god, I can’t see I was just in such a state of panic. I was like, I can’t see I can’t see.

    Sammy Taylor 14:00

    But as I was saying that to her, I realized that my mouth was I couldn’t speak either. And so I knew that my mouth was wrong, something had happened. And I remember her stroking my hair and going, no, Samantha don’t worry, it’s just the anesthetic it’ll wear off soon.

    Sammy Taylor 14:15

    And I was like, No, you don’t understand like I can’t see at all. And so times like that where I go back in the room. And I think again, it comes with denial and almost maybe not telling anyone leading that because also I was you know, I was studying hard at the time in a financial role.

    Sammy Taylor 14:34

    I was trying to get accredited with a SEMA qualification. And I was getting a promotion at work and so then it kind of switched overnight in this office and I thought why needs to keep it secret because I don’t want A people to think I’m not capable of work.

    Sammy Taylor 14:51

    And I was just going through all these things in my mind thinking my friends won’t see me the same then I’ve got to think I’ve just moved to London. So I was developing a new social circle, and so I was surrounded by people that weren’t family or like close, close friends that I’ve known for years.

    Sammy Taylor 15:06

    And so I thought, What do I want to like establish this friendship ground now based on like, feeling like they would pity me because I’m now this like, ill person? So I just had loads of mixed emotions. And so obviously, like now when I get back in those rooms, it’s all these, like, things that I didn’t even know that was I felt until they come out now.

    Sammy Taylor 15:29

    And I’m like, well it’s too late now, like, it doesn’t affect my life. It’s so different now, for example, so when I’m writing it’s like it feels a little bit easier. So maybe add some of that emotional side because it does feel like a very different person. And I finished writing books last year that I think I needed the right that you had to almost go back now. And the emotional side is that I’m not so close to it like it’s not my life now.

    Bill Gasiamis 15:55

    Awesome. So there’s a separation from the trauma, now you’re not going about it, and remembering it and getting re-traumatized. You’re just recalling what happened in the past. And you’re able to develop the story further and make a deeper so that there’s an emotional aspect of it because you feel like there was an emotional aspect that was missing. After all, you had kind of like to shut it out.

    Bill Gasiamis 16:20

    Because you had to get through all these stages. And I don’t know what the right or wrong thing is. But as you’re describing it, to me, it feels like you’ve done the right thing, because you’ve got to this stage, and look at you now and you’re reflecting on it, and everything’s kind of worked out. And you managed to get all those things done that you wanted to get done while you were getting to brain surgery. And it kind of has worked out, hasn’t it don’t you think?

    Sammy Taylor 16:52

    Yeah, I look back now. And I think, well, it’s like it went well. Like I said, like keeping it secret and kind of shutting out this emotional trauma, it worked well for me. But then I’ve never really been one of these people. But I guess, like when I have a headache or a cold, I don’t tell my mom or my sister or my family because they’re worried.

    Sammy Taylor 16:59

    So in the nicest way possible. But then it might be you know, every day for like, two weeks. How are you feeling today? Or how are you feeling today, I don’t feel like I don’t feel that anymore. So I’m fine. But then I thought well, that’s a common cold. So God what they’re gonna be like when you know, I’ve got this huge like mass in my brain.

    Sammy Taylor 17:34

    And so the days that and the reason I kept it secret was because, you know, I guess the worst, sometimes, quite a lot of times actually would be so overwhelmed, but like work, and if I was having a really good day, I’d even crying because I’m like, I’m gonna have to take a break from this soon. And then equally, if I was having a really bad day, I was overwhelmed thinking, like, I wasn’t feeling like capable.

    Sammy Taylor 18:00

    But at the same time, like, I’d go home and then like cry in my room or like journal things. But the next day, I could put on a brave face and carry on as normal. Whereas if too many people knew, it was like, almost, I imagine I wouldn’t have had the opportunity to have moments where I’d be able to forget about it. Because there would always be someone messaging me or asking how I feel in the nicest, you know, with the right intentions you can, you can never shut off if that’s the case. And so I thought, you know, I’m just gonna do it on my own.

    Bill Gasiamis 18:34

    I love it. I’m 10 years in this this week was kind of my 10th anniversary of the first bleed. And I have relationships with people who are still once-a-year kind of people, you know they’re really lovely people, but we just only see them once or twice a year. And we’re still on the how are you? Kind of part of the relationship like how are you and I’m like, I’m good, but they’re not asking me like the general how are you small talk kind of thing.

    Bill Gasiamis 19:08

    They’re talking about the stroke still, you know, they’re talking about how are you going? How are you doing? How have you been it’s like, I don’t know man, it’s like 10 years and six years in surgery, everything is normal, whatever I’ve been left with and whatever I’m dealing with, it’s all normal part of my life now it’s all just normal.

    Bill Gasiamis 19:27

    So I can’t move them from that “How are you?” kind of situation and I know what you mean and worriers having worriers around me worrying people. That makes it difficult for me as I can’t cope with having people around who just want to know what the hell’s wrong all the time, like what’s wrong?

    Bill Gasiamis 19:48

    And they asking you what’s wrong? It’s not actually about you, it’s about them. It’s to either ease their anxiety they’re asking you hoping to ease their anxiety. So if you say everything’s fantastic. They don’t give a shit if that’s the truth or not, they just want to hear everything’s fantastic. So they don’t have to worry about you, because they’re just habitual worriers.

    Bill Gasiamis 20:09

    So I know exactly what you mean. And I know, parents and family can be the worst, because, you know, they care about us more than most people, I suppose, or they can care about us the most. So if they’ve got bad habits around how they care, then it’s really difficult on the other person, and that’s part of the stroke recovery, it’s like really important to make the circle of people that you interact with.

    Bill Gasiamis 20:41

    The best version of the people that you can get. Not that we don’t love, the ones that are worrying, but to limit the interactions with them, and to try and steer the interactions in different directions so that it’s not always about experiencing their anxiety from the question that looks like they care. Because it’s trying to relieve their anxiety. That’s, my experience. Does that resonate with you?

    Sammy Taylor 21:11

    Everything you said, I mean, I’ve got people in my family who are ring now and they say, How’s your health? Like, what do you mean? How’s my health? How’s your health? I asked you how your health is, it’s like, you know, it’s fine now it’s good. But it’s, it’s that classic, where they just forever.

    Sammy Taylor 21:32

    That’s what I worried about, actually, when I, the reason I didn’t want to tell people was because I didn’t want them to now see me, as you know, a sick person over. But it turns out that even if you recover, you’re always going to be, the same way you’re parent’s like baby, you’re always going to be someone now that had a stroke.

    Always The Sick Person


    Bill Gasiamis 21:53
    Yeah, “the sick person” and just because somebody appears, and this is the real difficulty with invisible symptoms of stroke, and all that kind of stuff, just because you appear normal like me, doesn’t mean I’m well. But also, just because you, quote-unquote, don’t appear normal doesn’t mean you’re sick.

    Bill Gasiamis 22:14

    And it’s all these assumptions that people make, and nobody stops to have a real conversation with you at all. Because it’s too much for them. They can’t cope with it. I don’t know what it is. And they just don’t lend an ear the way they need you.

    Bill Gasiamis 22:27

    They don’t listen to your responses that’s about you. They listen to the response that’s about them. And we’re getting nowhere in this conversation again, and it’s like, oh, well, isn’t the weather great today? And it’s better to just change the subject.

    Sammy Taylor 22:45

    No, it’s so true. I resonate as well, when you said, you know, that a lot of the times they will ask you how you’re feeling they don’t care about the answer. They want to alleviate their anxieties. And I noticed that so much, you know, with my family, they feel like maybe they need to worry.

    Sammy Taylor 23:03

    And so they just always check-in. And then as soon as I think I’m like, fine, or I say I’m fine, it’s okay. And it’s like, then they go off and live their normal days and stuff. And it’s like, okay, well, what happened to like the general chitchat as well, sometimes, like, I remember, like going through I mean, you probably notice as well, but straight after my, my kind of stroke and my surgery my friendship groups changed massively as well because you do notice who’s like they’re around you or not.

    Sammy Taylor 23:34

    And even though everything is completely fine, not well, it’s not completely fine. But I mean, things are like now. And it’s like, my life is like back to normal. And I do get people from, like, you know, like school and things that messaged me now on Instagram. And I’m like, well hang on a minute, you didn’t message me like two years when I needed people.

    Sammy Taylor 23:54

    And so like now I’m very, very cutthroat with that. And I just think that anyone who was not necessarily supportive or around during that time, I can’t imagine that I’d ever need anything in the future. And I know that might sound negative to some people. But for me, it’s just very much a case of, well, I can’t imagine that I’m never going to go through anything quite as big as what I went through.

    Sammy Taylor 24:17

    So to go through that, like on my own pretty much. And with the small group of people that I had around me, it’s enough now I’m content with that. And it makes me realize that maybe I just don’t need other additional people. And I think it’s a good thing to maybe find out when you’re young. So I don’t see that as a negative. But I found that out. You know, when I was like, 25, I think that’s positive actually.

    Bill Gasiamis 24:42

    Yeah, about four years ago, I ran into somebody who I hadn’t seen during my illness, so it’s good so maybe I hadn’t seen them for six years. Or seven years before I was unwell, but they were in touch with people that I was in touch with, so we never crossed paths at mutual gatherings or events, but we were new people, the same people.

    Bill Gasiamis 25:10

    And I was at a pub. And this was about four years ago, I was at a pub, and he, I saw this guy, and he bumped into me. And he starts the conversation. Hey, going the usual stuff, you know, there’s a bit of conversation there. And then he goes, sorry, I didn’t come and see you when you were in the hospital. It’s like, I haven’t seen you for six years, at least.

    Bill Gasiamis 25:37

    And let’s all right, like, doesn’t matter that you didn’t come in the hospital. And based on the person that I know you are, it’s probably better that you didn’t come to the hospital. I didn’t say that to him. But I was immediately I was thinking, it’s probably better that you didn’t come to the hospital, because I wouldn’t be able to deal with somebody like you in the hospital.

    Bill Gasiamis 25:57

    Because he always used to make the conversation about himself anyway. So I was feeling like, he would say something to me, like, oh, man, you know, you got your head cut open, and there’s blood gushing out or whatever. And, you know, you’re, you just had brain surgery, you can’t walk anymore.

    Bill Gasiamis 26:17

    And I was feeling like he would go and throw in a. But you remember when my wife left me, right? And I was dreading people like that coming, into the room. Because for once in my life, no, it was actually about me, I was in the hospital, and I was unwell. And I’m not going to let it be about you.

    Bill Gasiamis 26:40

    If we’re going to talk about small talk, that’s fine. But if you want to talk about me, now’s your time to step up and have an emotional conversation with your friend who’s in the bed opposite you is unwell and needs an emotional conversation need to talk about something serious, not about you, and not about irrelevant stuff.

    Bill Gasiamis 27:04

    Because there’s never been a better time to be serious, because right now, it’s serious. And I’m not feeling well. And I need somebody to guide my spirit. And make it feel like everything’s gonna be okay. On the other side of this, whatever that looks like. And you’re not capable of doing that you’re not the guy who’s capable of doing that. So it’s okay that you’re not here, like, totally okay.

    Bill Gasiamis 27:30

    So the first thing to come out of his mouth is sorry, I didn’t come to the hospital, you’ve had for years since the hospital to come and see me out of the hospital as well. You still didn’t come. So I kind of feel like they know, instinctively inside somewhere that they are not useful to have around.

    Bill Gasiamis 27:54

    And they give us the best gift of not turning up. What they don’t know is that they don’t need to apologize for that. You know, they shouldn’t feel guilty about it. They should just go Hey, listen. You were unwell for a while I heard about that. Well, I hope you’re doing better. And that’s it, leave it at that there’s no need for an apology, or I’m not expecting one.

    Sammy Taylor 28:17

    Yeah, it’s almost as if they assume maybe that you didn’t have anyone around or, you know, their presence would have made a huge difference. But I just think now I just leave everything to kind of, I hate the saying things happen for a reason.

    Sammy Taylor 28:33

    Because some really bad things do happen. But I don’t believe in that. I just believe that, you know, life is so unpredictable. We never know, from one day to the next what’s going to happen. And when you make peace with the fact that you can just change like unexpectedly you just kind of, you know, it doesn’t matter who’s around you at what certain day, as long as they kind of add into your life, I always think in some way.

    Sammy Taylor 28:56

    So, yeah, I mean, I guess you’re saying as well, me and my friends. My best friend Heather, has been recently diagnosed with stage four. Well, they said it’s like, you know, it’s not terminal with say, it’s a throat cancer and they class it as stage 123 normal cancers.

    Sammy Taylor 29:15

    And then when it’s throat cancer, it’s for A, B, and C, on the way that it, you know, grows and things. And so she had surgery a few weeks ago, and it’s grown again, she had another surgery. And then she just found out that even though they removed the whole tumor, she found out two days ago, that she’s got to have another surgery because it’s already spread again.

    Sammy Taylor 29:39

    So they’ve got removed every single lymph node but for years, we’ve had this, you know, we’ve never really understood when some people can be so kind of in competition with like, whose day is the worst and things you have a headache and someone’s like, well, I’ve got this and I’ve got that and so we make a joke of that now.

    Sammy Taylor 29:59

    So when I see her as he sees me and things were always like yeah but I had brain surgery she goes Yeah, but I’ve got stage four cancer and I’m like yeah but I had a stroke we’ve like fully make like a joke of it and just like pay off like you know whose situation is worse? And it’s really funny that we do that, to be honest.

    Bill Gasiamis 30:19

    It is really funny. I love it because the two of you understand that you’re taking a piss off the people that do that the guy with you know, with the splinter in his finger is the guy you’re taking the piss out of there comes to the hospital, and says oh you’ve had an s, troke. Yeah, I’ve got a splinter in my finger.

    Living With Nystagmus


    Bill Gasiamis 30:36
    Wow like, wow, you must be suffering immense trauma, emotional, physical, mental. Keep it to yourself, and don’t worry about the splinter you’ll be fine. So how long has it been since your surgery now? How long has it been since all of that has been in the past?

    Sammy Taylor 31:00

    Well, two and a half years, but I have a hospital appointment tomorrow, for example at East Grinstead, they’re are amazing hospital in the UK. They focus on reconstructive, reanimation, and facial surgery. So I had face surgery there in September 2020. But in October 2021. I’m always having these surgeries. Then I had platinum eye surgery.

    Sammy Taylor 31:32

    So tomorrow is like that’s basically like a weight, they put in the lid to obviously close the eye and make it blink. And so tomorrow, I’m just having my checkup with my surgeon for that. But I’ve got like four different surgeons for different things. So it’s crazy. But again, because I guess the stroke happened two and a half years ago.

    Sammy Taylor 31:52

    And so now when I say that, it seems long, but I’m still in hospital all the time, or I’m still having corrective surgeries, or this and the other and I for example today and my therapist and like this emotional state, I was like, wow, I just the reason I haven’t processed any of these motions is because it’s been ongoing one thing after the other.

    Sammy Taylor 32:15

    It’s like, oh, great, you can now walk again. Yeah, we need to do your eye surgery, because first of all in March 2020 first UK lockdown. I had strabismus eye surgery for the vision. So it’s like okay, great. You can walk and now we need to fix your eyes like, you know, stop using term thing.

    Sammy Taylor 32:35

    And then when I recovered from that, it was like Okay, great. Like now your face will never heal so we need to do you know a nerve graft from that. So then when I recover from that, it’s like, okay, well, now we’re gonna do another eye surgery and so you can blink again. So it’s been constant. I’ve never really had a break still, even now, I haven’t had necessarily a right to just be like, Okay, well, wow, that happened. That was weird.

    Bill Gasiamis 33:00

    I love it, you’re busy. You’re busy doing stuff and getting stuff done. I love it. I’m gonna, like I’m feeling really kind of pumped up and emotional about this in a good way. Like, is it fucking fantastic that there are so many surgeries that they can do to support people who’ve had a stroke? And 30 years ago, none of this stuff was available for anybody. Is that fucking brilliant? Or what?

    Sammy Taylor 33:26

    Oh my god, it’s insane. It’s so good. Like, last September, when I had my face surgery, I was the first in the UK to have that particular surgery. And fourth in the world. My surgeon like was amazing. And I fully trusted him from the get-go even though I listened to and recorded that session when I was in there. And I listened to it the other day.

    Sammy Taylor 33:51

    And those were so like laughing that we notice like the first time that we’re going to be doing this and he’s trying to reassure me like a laughy way because I’m nervously laughing I think saying it’s not pioneering don’t worry like I’ve done this before. Like I said, I’ve not done this particular surgery he was saying but I know how to do it.

    Sammy Taylor 34:10

    But then he was like I need to do on this state because then I need to like go on this course and pay for it. And I was like wait wait, You don’t even know how to do it. And he was referring to it as you know when you the analogy he gave me was when you embark on a long road trip you wouldn’t go without a map you want to be prepared.

    Sammy Taylor 34:31

    I was like wait you are like the surgery it’s like this laughing stuff. It’s crazy. But then I have goals messaged me on Instagram still now which is which is one of the main reasons I share everything that I do. And it’s made for that reason. And I have girls though in you know, all kinds of countries saying oh my god, I’m at a loose end like I’m desperate for something like we don’t have this in our country.

    Sammy Taylor 34:59

    Please put me in touch with someone. And then when I suggest my surgeon I’m like, well, actually, they don’t do like, you know, NHS don’t do you know, overseas patients, but maybe contact them privately. And it’s just like makes me realize how fortunate I am, for example, to have the NHS here, because I haven’t I mean, you wait a long time, but I don’t have to pay or think about it.

    Sammy Taylor 35:24

    So it’s like you are given, for example, they do suggest as pioneer and surgery, they can do it for you. And it’s not a case of it’s just a no likes no pun intended, but it’s like to them, they don’t even see it as Yeah, okay, you can’t like what made it lead to the platinum chain surgery is the best one at the moment. You don’t have to ask almost for these massive breakthroughs. They just want to do it for you. And it makes your life so much better.

    Bill Gasiamis 35:54

    The NHS in the UK is the National Health Service. In Australia, we’ve got Medicare, it’s the same kind of service. And through our taxes, our weekly daily work taxes, and the goods and services tax, which is a 10% tax on every purchase that you make. There’s a fun that goes towards our hospital system, where if you don’t have health coverage if you don’t have insurance, you’re fully covered.

    Bill Gasiamis 36:25

    So I am grateful for that as well because I went to Greece and had a conversation with some people about two years after my brain surgery, three years after my brain surgery, and when I got there, people were saying to me, man, my cousin, for example, fell over broke her leg. And at that time, she had to get it looked at and repaired.

    Bill Gasiamis 36:52

    And because she couldn’t walk and I was at the hospital with it, I would be told you guys need to go to that particular window, get the invoice when go to the next window pay the bill, and then bring the receipt to us. So we can do a scan of the leg to see if it’s broken or not.

    Bill Gasiamis 37:12

    And I’m losing my mind, I mean, what the hell, like just scan the lady’s leg, and then let’s pay for the frickin bill, whatever it is, you know, make sure that you get this person help. So she has to wait to go through the windows with a broken leg in a queue. And then, once she’s done that, she can get her scan. And I couldn’t believe it, I was pushing her through these windows.

    Bill Gasiamis 37:38

    So in Australia, you go to the hospital, and they scan your leg. And that’s the last time you hear from anybody. If it’s broken, they sort it out if it’s not you go home, and they tell you how to fix it and look after and go home. And then when we’re talking about my brain surgery.

    Bill Gasiamis 37:59

    And the guys were going, Oh, that must have cost a bundle or that kind of thing. I’m like, oh, oh, no, no, it didn’t cost me anything. What do you mean, it didn’t cost you anything? And I was like, Well, that’s one of the reasons why in Australia, we pay tax. In Greece, they try to avoid tax under any circumstance.

    Bill Gasiamis 38:17

    And the system there was faltering. And one of the main issues they had all those financial problems back in 2010 was that they never collected taxes. And all they did was spend, spend, spend. And I said to the guy, well, it cost me $0 to go to the hospital, have all the appointments, all the tests, all the things that I’d done, and then go to brain surgery, and then get all the rehab for a month.

    Bill Gasiamis 38:50

    And then get all the aftercare for three, four, or five years, it cost me completely zero. And they were just looking at me like I was talking in some other language they were stunned. So, for me, I take it for granted, and it’s normal. And then I hear people in the United States complain about Medicare, Obamacare, and all that kind of stuff.

    Bill Gasiamis 39:15

    And I don’t know the politics of it. But Obama was trying to implement something similar. If that service was available in the United States, that would be like becoming a socialist republic of some kind and converting the United States of America into something worse than what it already was like caring for people was going to become worse.

    Bill Gasiamis 39:37

    And I just can’t compute the issues that they have in America with getting a bill like that over the line, like a law like that over luck, where every human participates in their health and well-being by putting a small amount of text towards it and it’s like one or 2% for us like it’s not massive.

    Bill Gasiamis 40:01

    And then in the United States, they didn’t say that as a positive thing to do for A yourself and B for your fellow human beings and your fellow country people. It’s just a bizarro world so and then all the surgeries that are available to us are our leading-edge cutting edge.

    Bill Gasiamis 40:24

    Even though there is this free supposed system or this system that we pay for through our Taxes, that has helped the doctors who come to Australia become established to learn the greatest amount of things that they need to learn.

    Bill Gasiamis 40:38

    And that’s all we have some of the best hospitals in the world in our five cities in our five, six cities that are world-class and that you can get amazing surgeries in and all this type of stuff that has never been done before and is getting tested and proven here and changing the way that people are getting helped and supported.

    Bill Gasiamis 41:00

    So when I hear about people from overseas, it breaks my heart, it’s really difficult to hear about people who can’t access services just because they live in the wrong part of the world. But then I think about things like GoFundMe, which has changed the game for a lot of people who have been able to raise money to put towards such an amazing cause, like getting surgery or getting some additional support for a loved one or themselves.

    Bill Gasiamis 41:32

    And even though it has, it’s been really hard for people overseas, and still is, for a lot of people, it’s much better than what it was still like still, things are improving because of these amazing services like GoFundMe, and all that hundreds of other ones that are out there.

    Bill Gasiamis 41:50

    So I suppose things are getting better. But there’s a long way to go. Things are getting better for the stroke community because there are communities like this that exist and Instagram is full of people who are talking about their stroke and sharing their stories. Every second stroke of respect is writing a book. And that wasn’t the case. 10 years ago, when I started on this journey.

    Bill Gasiamis 42:17

    I’m writing a book I’m probably halfway through, it’s been the hardest thing that I’ve ever had to do. Because I was never academic or, you know, literate in that way in kind of telling stories in a way that other people would consume them.

    Sammy Taylor’s Book

    Bill Gasiamis 42:32

    So things are way different than they were 10 or 12 years ago, and I can’t imagine how good or better and how improved they’re going to be in another 10 or 12 years. Tell me about the idea behind your book. Why did you decide to write the book? And how far off is it from being finished and ready to print?

    Intro 42:57

    If you’ve had a stroke, and you’re in recovery, you know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like now long will it take to recover? Will I recover? What things should I avoid? In case I make matters worse, and doctors will explain things that, you’ve never had a stroke before, you probably don’t know what questions to ask.

    Intro 43:21

    If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called Seven Questions to Ask Your Doctor about Your Stroke.

    Intro 43:40

    These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website now, recoveryafterstroke.com, and download the guide. It’s free.

    Sammy Taylor 44:00

    I think the whole it just goes back to what you just said. I mean, I had a lady reach out to me on Instagram last Tuesday through my UK account. And she was frantically you know wanting someone to speak to because her daughter Kirsty was the same sort of age I was she’s 24 now so she’s around the same sort of age I was when I first had brain surgery.

    Sammy Taylor 44:26

    And she suffered all the same complications as me. And I think her mom’s just in sheer desperation and wanting you know some advice. And so I gave her my WhatsApp number. I had a conversation with her on Monday and it’s crazy seeing her daughter actually because she has every single complication that I had, like two years ago.

    Sammy Taylor 44:49

    So I know is very like almost not comforting to them to know. It does get better and us almost saying that no, everyone’s journey is completely different as well. And I don’t know unnecessarily the ins and outs of her surgery. But for example, we were talking about our eyes, we’ve both got nystagmus.

    Sammy Taylor 45:07

    And there’s currently nothing for nystagmus to treat it. Every surgeon I’ve spoken to said it is permanent. And when you require it later on in life, you also get what’s called Oscillopsia, which is the sensation that the world around you is moving. So I walk down the street and the trees and the people and everything around me are moving in front.

    Sammy Taylor 45:31

    This means that when you have a cerebellar stroke, and you suffer from balance issues anyway, like a tumor or anything, it makes the balance harder to comprehend and harder to deal with. And I just said to her look the reason I live with it now is that I can cope with it I was in a state of sheer overwhelm with it two years ago with that sensation.

    Sammy Taylor 45:55

    But the reason I’m not in that case anymore is not because it’s changed, it’s no different than it was. However, I am just fully hopeful, and trusting the fact that in five or 10 years, there will be more, you know, studies that come out all the time, and in 10 years, I’m still only going to be you know, 37.

    Sammy Taylor 46:14

    And so, you know, even if it’s 20 years, it’s still a good age, if I lived that long to then, you know, have a cure that and then. So I think the main reason for that book, The reason I’m writing a book, right is the relatability of it. So when I mean, it’s not even that long ago, two years ago that when I first you know, had got the news that I was having brain surgery, and I went on Instagram, and I couldn’t find anyone, really of my age or similarities who was going through it.

    Sammy Taylor 46:47

    And then when I had a stroke, it was even worse, because I was like hashtagging stroke recovery. And it’s a lot more, you know, as in like a lot more of an Instagram community now and people who are like coming forward and sharing their stories, but there wasn’t even that two years ago.

    Sammy Taylor 47:03

    And so I felt alone with it. And the comparisons with just hostile sites on Instagram that we’re sharing, you know, stroke survivors that not to stereotype, but they were just so unrelatable to me, and, you know, much, much older, for example, a different kind of stroke.

    Sammy Taylor 47:19

    And I think, you know, I’ve gone through pretty much not like to my like surgery at home, but I’ve gone through everything really that, you know, you go through kind of my age in terms of having brain surgery or a stroke.

    Sammy Taylor 47:35

    So then to have like the first you know, face surgery in the UK, and it also comes down to those online dating in the mix where you then you go from being I mean, when I was like 24, I was in the height of my career, I was in like prime and I had loads of, you know, I wasn’t short of like dating in the city.

    Sammy Taylor 47:40

    And it was like a classic when you’re 24. And like single and like having fun and like loads of male attention things. And then almost overnight that changed. So it’s not even just a book that kind of shares my brain tumor journey. It’s everything, like my relationships and friendship groups that changed at the time.

    Sammy Taylor 48:15

    I have a strange relationship, with my dad who, when he found out the news of my brain surgery didn’t want anything to do with me or my sister suffering from mental health issues. And whilst this was all going on. And there was, you know, illnesses and other illnesses and family that were to contend with.

    Sammy Taylor 48:34

    And so, you know, there’s all these different themes. And then obviously, two of my surgeries, or three of them now actually were in the pandemic. So when COVID-19 hit and so there’s so many themes in the book, but I realized could you know, even just, I guess, going through any kind of challenge, and I set out to business about that.

    Sammy Taylor 48:55

    And I really kind of like use my mindset and like, you know, focus on like, positivity and really kind of I knew that I couldn’t heal my body that I could, like, heal my brain. And so, you know, I just kind of like heal my mind in a way. So I guess there are those assets started here, when they come to me, like, you know, I’ve got some friends who come to me and they want to know about how to start business and it’s so different, like, it could be anything.

    Sammy Taylor 49:20

    So it’s not necessarily just the straight virus, but I think that’s why I wanted to write it because there was a lot of substance that I realized was, you know, relatability was the key. And you know, it’s why I wanted two years ago to go on Instagram, and it’s why now girls and their parents and messaged me now and they want to know all these different, you know, different kinds of questions they have, and they want answers to it desperate, like desperately seeking answers like I was.

    Bill Gasiamis 49:49

    Yeah, I love what you do because you’re showing that before there was a lot of shit after there’s life, a lot of life. A lot of stuff going on normal stuff that people go through normally.

    Sammy Taylor 50:05

    There’s still some shit. Right? So, then it was like it was all on up for me. And then that’s when my best friend got diagnosed with cancer. And so I was like, wow, you know, I said to my sister and I have this mantra, something good is about to happen, and I was like, You know what, something good did happen. Just shit just all over again. It’s like a constant, it’s a wave. It’s okay. When you when you make peace with it, you have no fear, really, and anxiety about life.

    Living Life After Stroke


    Bill Gasiamis 50:32
    It’s normal life. That’s all it is. It’s not always pleasant. My mother-in-law died two weeks before my brain surgery. You know, we had to go into brain surgery with my wife mourning her mom, I wasn’t allowed to be a pallbearer because I wasn’t allowed to hold anything heavy or strain myself or get too upset or emotional because the bleed was still bleeding three years after the first time.

    Bill Gasiamis 50:56

    And then, and then I had to go into brain surgery and my wife had to Well imagine that I was going to survive, and that was only going to be the only outcome. But of course, her mum’s death was fresh on her mind and still in trauma. She’s doing the whole, you know, maybe he’s not gonna make it. Maybe I won’t see him again, maybe who knows?

    Bill Gasiamis 51:20

    So that’s what do you do? Like, that’s kind of that’s what life does. It’s just doing its thing. And we’ve just got to do our thing and continue through it. And, you know, I’ve met some guys, and I’ve coached some people around stroke recovery. And they’ve said to me, like, what have I done, that’s been so bad, that I deserve all of this?

    Bill Gasiamis 51:40

    It’s like, get your head out of your ass, you haven’t done anything, all you’ve done is woken up and be alive, and you’re living a life and everybody else is doing the same thing. You’re not immune to the rest of life, just because you’re going through something bad. Health-wise, you’re fully involved in life, that is what you’re doing.

    Bill Gasiamis 52:03

    It makes it it’s like a weird way to flip it, but you’re fully involved in life when you’re unwell and trying to survive and stay alive. That’s exactly what we’re meant to be doing. That’s the most amazing part of life is, we don’t appreciate it until we have to fight to keep it.

    Bill Gasiamis 52:24

    And every one goes through there, you’ve got like 10 books in you, like, you’re such a veteran, at your age at 27, you have a wealth of knowledge, a wealth of experience, a wealth of maturity, you have a really good sense of how to mentally approach things, you’ve been able to go back and understand what your emotional state was like.

    Bill Gasiamis 52:50

    So you can relate to people from an emotional level, and you’re a female who has had your face impacted. Therefore, you kind of understand that girly, long hair, facial feature type of issues that people go through. And they can’t imagine being any different from what they were when they were born or how they woke up for the last 20 or 30 years.

    Bill Gasiamis 53:15

    And I interviewed a lady just a couple of episodes ago, who’s going to be an interview that goes live just before you. So for people who listen to the series, maybe it’s one or two before this interview. She talks about how, after her stroke, she wasn’t sure whether she’d be able to have a relationship again, and how would somebody be able to love me. And you know, what’s that going to be like in the future?

    Bill Gasiamis 53:41

    And of course, that was just a crappy story. She was telling herself and it was coming from fear and the rest of it and sharing the time that as well. Somebody she is lovable, doesn’t matter whether she has an I problem or a smile problem or whatever. Like she’s a perfectly lovable human being and she found love in it.

    Bill Gasiamis 54:00

    She’s in a relationship now. So I think that’s what’s beautiful about what you’re doing. It’s and what a lot of stroke survivors do is they, they start with, I’m going to make it about me, and then they do the recovery. And somewhere even though they’re still on the About Me part of the recovery, they think about other people, and it’s like, let me help other people well I’m going through this, maybe it’ll make that part is that’s what I did.

    Bill Gasiamis 54:28

    And I kind of found myself in that state and went how did I make it about other people? Like what’s that about? You’re nicer than I thought Bill, like, what’s all this stuff? And do you know what I mean? There’s that weird thing that when we must make an effort to support other people. I just don’t get it. I understand because I’m doing it and I love doing it.

    Bill Gasiamis 54:52

    But I don’t kind of like I just can’t compute how we turn it into something about other people. That makes us better and our recovery improves because of that. And then we start to hold ourselves to a higher standard. And I don’t know we become a voice, for our fellow survivors, I suppose.

    Bill Gasiamis 55:19

    Do you find it weird that you’re in this helping space where you think about when you were 18? Like, as if you were ever going to be somebody who helps other people overcome something so serious as a stroke? Isn’t that weird?

    Sammy Taylor 55:35

    It’s, it’s crazy to think I just can’t even Yeah, I still can’t get my head around it. I don’t know about you. But for me, it was just, it wasn’t even a conscious decision that this is what I was gonna do. Like, I realize now that when I’m like writing the book, I’m on this particular chapter, how I first started my business.

    Sammy Taylor 55:57

    And then it was a case of I couldn’t sleep, I was like, suffering insomnia for like, nights, you know, months on end, I didn’t tell anyone. So I had no one to confide in. And so setting up using the brain, like my business became such a welcome distraction.

    Sammy Taylor 56:13

    Because when I couldn’t sleep, then I mean, I’ve known as well you say, to take yourself out of your room, so you don’t start associating your room as a place you can’t sleep. And so I went downstairs in the kitchen, but I wasn’t, you know, simulated by the TV or anything like that.

    Sammy Taylor 56:29

    So I just, I took, you know, I journal every single day, and I started, like, just writing and writing pages and pages. And then that’s when I thought, you know I might just start a blog and like writing, I’ll do that. And then when I had the stroke, and I was recovering from that, and I, Ben was doing bracelets, and that’s how I kind of beads in the brain started.

    Sammy Taylor 56:54

    And it was very much I was handwriting, the labels, I was walking to the post office, it was all such, I didn’t want to do it at first, because I couldn’t physically do it, that then I pushed through it. And I was like, No, you know, what, and my writing improved, because I was writing labels every day, my walking, because I was forcing myself to go to the post office.

    Sammy Taylor 57:15

    And, there’s all these different things. And I guess, as well as I mean, I was off work, and I was off long-term set for quite a long time. And so I could have maybe just, you know, watch Netflix and watch all these TV series and look back on the year and, you know, deep down, I worried that my, you know, brain wasn’t going to be like stimulated by that.

    Sammy Taylor 57:36

    Or it was going to, you know, I was going to like almost lose brain cells by like not doing anything you know creative or the thought-provoking. So it helped my writing as well also helped my cooking visibility. And it just ended like I just helped him so many things and how so many, you know, all the things that I was hindered by, recovering.

    Bill Gasiamis 58:00

    Yeah, it’s neuroplasticity in action. And it’s for a good cause. So it’s positive neuroplasticity. And it’s rewiring your brain’s ability to think to write to express yourself, you know, to rewiring your hand to write it’s rewiring your legs to walk, you’re going and interacting with people in public, you know, you’re starting to do all those things that you “normally” do.

    Bill Gasiamis 58:26

    And therefore life has this common theme of normality, and you’re involved in it and you’re taking an active part. And you don’t realize that at the beginning, but now you can reflect on it and go wow, that was such an amazing thing that I did was to go out and participate in this thing in this way because I got the added benefits of doing stuff that I wasn’t planning to get benefits from like improve my writing.

    Bill Gasiamis 58:56

    What a stroke of genius that was to go down that path and right handwritten labels for people who had bought stuff. And your writing you were using that to raise money for was it the brain tumor research?

    Sammy Taylor 59:16

    No, it’s very interesting. So when I was first diagnosed, I mean not when I was first diagnosed because I forget that I was diagnosed when I was you know, 18. So I go like 2019 When I was first diagnosed but when I first found out about the surgery, I had two very conflicting views from different surgeons who said the complete opposite.

    Sammy Taylor 59:39

    And so the reason I got in contact with brain stress was because I just desperately needed their advice on what to do. They were the ones that put me in contact with a third private brain surgeon and paid for the consultation and everything so I did a sponsored walk they wanted to raise money. There was always that part of me that was just so so so grateful even now.

    Sammy Taylor 1:00:04

    Because of what they did, because it wasn’t even the monetary aspect it was so small in comparison to the way that it made me feel and the impact that it had. And I just felt like I could never repay that. And so I’ll never feel like I’ve done to like repay that. And so it was very much that reason, the reason I wanted to do these bracelets was to continue donating to them somehow for the rest of my life.

    Sammy Taylor 1:00:29

    But also, I knew I was going to be on long-term sick for quite a long time, potentially. And so I needed a way of supplementing my income. And so that’s kind of like what I did. And again, it was, you know, I said this to the girl the other day on the phone, whether or not it was the right thing to do, I moved back initially straight after my brain surgery, my stroke, I couldn’t do anything myself.

    Sammy Taylor 1:00:53

    So I moved back home with my mom to recover. And you know, she’d love for me, but we clashed personalities because I’m such an independent person that I was making me almost like it was getting me in, like a worse mental state. Because I was like, all that, you know, everything that I can’t do as a reminder of what I couldn’t do consistently, or daily basis.

    Sammy Taylor 1:01:19

    So, five weeks after I still couldn’t feed myself walk down the street unaided, or walk that far up the stairs carrying something, for example, I decided to move back into my house in London. So I lived like for, you know, people between the ages of like 25 and 32 at the time, and there’s me, you know, overnight, they didn’t care that overnight, I walked into this house share then that was like this party house before I left, and all of a sudden now I can’t walk up stairs on my own.

    Sammy Taylor 1:01:51

    But I knew that no one left when I did it, everyone was fearful of my family, and everything was like you can do it. You can’t pay for anything. But I’m saying to the physio I was having daily physio at the time. And I just said get me to the place where I can just walk down the street if I need to. Even if I held something, I had to hold an umbrella like a stick at the time.

    Sammy Taylor 1:02:13

    And I couldn’t do any more shopping or anything or washing or anything. But I had no choice but to move back to London and the House share meant that yes, I did struggle for like quite a few weeks and months and I had no choice but to do things myself because no one else was going to do them for me. And so in a way that massively helped my recovery.

    Sammy Taylor 1:02:36

    And I do think it’s a bit cutthroat now, like, if that happened to any of my friends, I would 100% like, No, you can’t do that on your own, like you need someone there. But, I do think that my recovery was perhaps that quicker than it maybe would have been had I stayed, you know, wrapped and got a wall, never done anything myself at home in that recovery.

    Sammy Taylor 1:02:58

    So again, I could think maybe, again, been back in London, that I had nothing to do my housemates were often like the office and passing and rooftop bars. And so very much I didn’t even have my family then to look after me. So it was just me in my house day on you know, it’s quite lonely.

    Sammy Taylor 1:03:19

    And so beat in the rain really, that’s at the point where, you know, that took off because I just put everything into it. After all, it became like, my kind of safety net and my companion in a way like I know that sounds sad, but and I sat in my room like not having anyone else it was you know, it was just there at the time. So yeah, it was almost wasn’t intentional, that’s just the way that it kind of transpired then because I was on my own for so long.

    Being Independent After A Stroke

    Bill Gasiamis 1:03:49

    I love the fact that you went back and lived in London on your own. It’s a masterstroke. I mean, it sounds counterintuitive, but it is the best thing that you could have possibly done. That level of ability that you had was enough, obviously to get you through and to get you better.

    Bill Gasiamis 1:04:09

    And it teaches so much about yourself. It teaches you so much about yourself how resilient you are, how tough you are, how willing you are to succeed how much you’re going to fight to overcome. You know, you’re putting yourself first mentally as well, which is a real masterstroke because there’s nothing worse than relying on the one person that you want to rely on which is your mum, for example, but she’s not up to the task.

    Bill Gasiamis 1:04:36

    And through no fault of her own. She just doesn’t have the skills to support you because she doesn’t know how to support somebody who is like you. And that’s the thing about parents, his parent’s responsibility to adapt, to grow to become better versions of themselves to to live with their kids who are different than them.

    Bill Gasiamis 1:04:58

    But a lot of people don’t realize that it’s our job to grow and become better versions of ourselves, more evolved versions of ourselves. So we can deal with these widow things that came out of your mom’s belly, you know? And it’s like, how do I bring them into the world?

    Bill Gasiamis 1:05:14

    And how do I relate to them, even though they’re so different? How do I not make them be like me, and then not be able to rely on that person? Some people would have taken that seriously, the wrong way, and negatively, and felt let down and disappointed. But it sounds like you love your mom. But it’s like, it’s good for her to be over there. I can love her from a distance.

    Bill Gasiamis 1:05:39

    And I can go back to being myself and finding a way to overcome all these obstacles, because let’s face it, some obstacles, you need to do them on your own and work out yourself how to get around them. Because that person that you went to your mum, she’s never gone through what you’ve gone through how the hell is she supposed to know how to get through the other side?

    Bill Gasiamis 1:06:00

    What can she share, to support you to do that? Nothing. And that’s the same as my parents, they had no idea my brother didn’t, but my wife did. And nobody does, and they still don’t, I never want them to know what it’s like to go through a stroke, and overcome it. So I’ll let them do their thing, the way they need to do their thing.

    Bill Gasiamis 1:06:21

    And I’ll find my unique ways to overcome my challenges because every stroke is unique. Even what you did and how I did my recovery, might not help each other. But at least we kind of get each other. And that’s far different from our other family members.

    Sammy Taylor 1:06:44

    I guess, like it comes back to you just didn’t stand on the notion. So like you said, our experiences are different. But we’ve already gone through some of the same emotions. And you know, for me, for example, growing up overnight, it was always like grief miles south. But that didn’t come out until a few years later.

    Sammy Taylor 1:07:04

    And so there were all these different notions. And so when I was having outbursts like that, it was very easy. My mom won’t mind me saying this, because we’ve always kind of, we’re so independent. And so she’s raised amazingly on her own to be independent, though, which means to do clash heads, because I’m so strong-willed as she is, and I have like, three other sisters.

    Sammy Taylor 1:07:28

    And so that was a house of five women, and we were all strong-willed, which was an absolute nightmare growing up. So I was always busting heads with my mom, because then when I was coming down that, you know, I remember in the early days of recovering that house, and she was having to, for example, like wash me in the shower, or tie my hair out when I couldn’t do it.

    Sammy Taylor 1:07:48

    And all these things and then like, cut my food for me like I was like a child again, and so it was demoralizing for me. But it was when I would come downstairs frustrated. She would tell my physio, oh, she’s depressed today or she’s negative today. And I’ll be like, Well, Mom, I’m just having like, one little outburst. I’m sorry, that yes, like let me this one day just have my little outburst because it’s not even a whole day.

    Sammy Taylor 1:08:20

    But if I come downstairs, frustrated, because you’ve had my hair, and I’m 26 years old, then you’ve done it horrible because I hated it. It was like in a tight clap or something like I’ve gone to school the day that she used to do, it was just wrong. But so I was like, Yeah, I am frustrated this day. But it doesn’t mean that I’m a negative person. Or, you know, I’m symbolic of someone who’s like pessimistic.

    Sammy Taylor 1:08:44

    I’m positive 95% of the time, but I’m only human. I’m not like a robot. I do have feelings as well. So all they want, you know, I’m this amazing. This Ray, this inspirational person. So I you know, I’m not losing sometimes, like I just saved my room, like crying sometimes thinking, Oh, my God, like what has happened.

    Sammy Taylor 1:09:03

    But you live in your land, it’s part of life. And I think it’s so normal to be like, you know, have these notions that that’s what she couldn’t handle. I was supposed to be like, you know, we’ve been taught to be strong all the time. When we were younger, sometimes it was something like this happened in a massive challenge.

    Sammy Taylor 1:09:20

    You just have mood swings, for example, mood changes, or especially something like overnight. That’s like a fundamental change. And so it’s not that that person is now like broken forever. But you have to always allow them to just express it in their own way. And yeah, that’s about it. Headmaster release, I just thought I’m just gonna take myself off to London. It just doesn’t mean that I’m doing it for a week. But God does it. At least I can cry. At least like these. So that’s kind of what I did.

    Bill Gasiamis 1:09:50

    Yeah. And Mum doesn’t have to worry about seeing you cry and knowing how to respond and trying to stop you from crying and all that kind of stuff. She just has Do, she just has to get over the fact that you’re not near her. And that’s probably better for her to time, I feel like that would have been.

    Bill Gasiamis 1:10:08

    Because distance does make it a little better, I think, especially when somebody is going through a tough time, like not being in their face or all over them the whole time, I think, really is important giving people space to be themselves, and in stroke be their ugly self, their angry self, their shitty self, whatever it is, you know, to lead people to go through the gamut of emotions.

    Bill Gasiamis 1:10:33

    And then also, because that kind of releases them, doesn’t it? That allows them to go away, and not remain trapped inside their body. That’s kind of how I see it. Now I love your I love your attitude, I’m going to go back briefly to when you mentioned nystagmus, which is the involuntary eye movement, that causes the eye to rapidly move from side to side, up and down, or in a circle, and might blur your vision, right?

    Bill Gasiamis 1:11:07

    So I love that you’re finding a way to even kind of shift that thing that’s happening to you now as in like 10 or 20 or 30 years from now, there might be a solution for that as well. So you’ve got this long view of recovery as well. And faith in that it’ll be okay. In the end, something will be okay and work itself out. In the end. I love that mindset.

    Bill Gasiamis 1:11:42

    And it’s a really good way to round off this episode and remind people that that’s what strike recovery is there’s this terrible time at the beginning. And then there’s this weird middle stage where things are resettling leveling out the new way that things work or the way that your body works, or the way that your mind works in your emotions work, that’s all kind of working itself out in this other stage.

    Bill Gasiamis 1:12:14

    and then there is the immediate, long-term part of that, say 2 3 4 5 years down the track, when you’re sort of starting to get a better understanding of how you now operate in the world and how the world operates around you now that you’re beyond, and then there’s the very distant future, which is 10 or 20 years away, which I’ve interviewed stroke survivors that are that far out.

    Bill Gasiamis 1:12:42

    And then stroke becomes something they talk about, but it’s not how they live their life anymore. It’s just become something that happened to them ages and ages ago. And their life is quote, unquote, normal.

    Bill Gasiamis 1:12:57

    And they just go about doing things the way they do things, however, that looks or whatever the body appears to operate like, or they just find a way to continue living and experiencing an awesome life and solving problems even into the future.

    Bill Gasiamis 1:13:14

    So I love how you’ve got this really busy short-term version of your recovery, which is happening now in the last two and a half years. And, you know, since your brain surgery, and then you’ve got this, and we’ll park that stuff for the future. That’s just brilliant. I love it.

    Sammy Taylor 1:13:33

    I feel like you have to do that to get through it. And so, yeah, it’s kind of always a coping mechanism, maybe. But I think when I had my first real holidays, it all happened last September, we weren’t big enough.

    Sammy Taylor 1:13:48

    And it was the first I hated the thought of it for because there was, it was a hen party, there were loads of bells, concept pictures out I’ve never been in a social situation like that. And I thought I was still very, very self-conscious with my face and things.

    Sammy Taylor 1:14:05

    And then something clicked on that, you know, on that holiday and I listened to a podcast episode. And with Jay Shetty, before I went, and one of his guests said that you’ll never get to be with this version of yourself again. And it’s changed my mindset toward them.

    Sammy Taylor 1:14:25

    I got just almost overnight like I was just, I could deal with my situation and accept it because I knew that it wasn’t permanent. I knew wouldn’t live with it forever. And, you know, I’d look back at photos and a holiday and be like, well, you know, the same way I do now look back at photos and like my younger self and things and almost think well I’ll never get to be with that person again.

    Sammy Taylor 1:14:47

    Or who I am on this holiday or who I was back then at certain times and so you just go through these different ways in life and I almost think it’s quite good to hold on to that little bit of hope that you know, you’re not you I’m waiting for that. But I’m not waiting for a cure for nystagmus.

    Sammy Taylor 1:15:04

    I’m just very much, you know, every surgeon in the UK has pretty much told me that it’s permanent, that it’s almost a bonus. Now you learn to accept it and live with it. And then it’s a bonus if you suddenly, you know, there’s a trial that comes out in 10 years, or 10 20 30 years, and you just kind of accept that.

    Sammy Taylor 1:15:23

    It’s not overnight, that these things happen, but you kind of live and you make the best of the situation that you’ve been dealt, and you can still have a really good and really happy life and make peace, you know, move forward with it.

    Bill Gasiamis 1:15:36

    Yeah, I’m looking at the photos right now. From your trip to Mykonos. I mean, they are next level, amazing photos, that footage. And, yeah, it’s like, that’s what it’s about now, isn’t it? It’s about actually going, you know, what, under no circumstances am I going to miss out on living life, and having life and experiencing life.

    Bill Gasiamis 1:16:00

    And then remembering all the good times, and dealing with and overcoming the bad times, because maybe we don’t want to remember the bad times the same way we want to remember the good times.

    Bill Gasiamis 1:16:13

    But that’s okay, we’re gonna probably go through more bad times, let’s get some skills under our belt as to how to overcome them, deal with them, and move on from them. And let’s learn how to live life and have great experiences. And I love that you went to Mykonos during a pandemic.

    Sammy Taylor 1:16:32

    Oh my gosh. And it’s so funny because I can resonate when you said you, spoke to that lady who, though should never have another relationship again. And so I had all these emotions. So if my raised surgery, and, you know, there are so many things that went on with a girl my age and single and city and thing, and I never date again, and I went on some like, you know, some dates on a hinge and it was almost a bit of a milestone for me.

    Sammy Taylor 1:17:02

    But I couldn’t find out because I was so oh my gosh, what they think like they’re looking at my face or my mouth, all these things. And I would go and like that. And you know, we will meet in a cafe, I would give that at first and be like, Where can I sit on which side? Can I sit on it? And then I thought, well, actually, that’s silly, because if it goes any further, they’re gonna see my other side.

    Sammy Taylor 1:17:22

    And so how long can you hide it? And so I just really, I know, this sounds kind of sad that I made a peaceful holiday, that I wouldn’t be in the relationship, but I was okay with it. And so I had all these things going. And then, like I said, I listened to that thing on the plane, that quote, and you know, you never get to be this version of yourself again.

    Sammy Taylor 1:17:46

    And because of that, I had the most amazing holiday. And then three days before the end, I met my boyfriend, who I’m with now. And it was crazy how it happened. It was not even I don’t even know how it happened. But he just fully accepted. He wanted to know everything he read in every single blog post that night that we’d met, he wanted to know everything, it was a bit of a holiday romance.

    Sammy Taylor 1:18:08

    So we had like three days together still on the island. So we were like meeting and he was seeing my friends groups. And I felt like I hoped to him and he didn’t look to me more in those three days than I had with anyone in the two and a half years. And I think that really comes with you know, I just really made peace with the situation of how it was.

    Sammy Taylor 1:18:29

    I wasn’t you know, even looking at first I was clinging on to I’m not God, this is wrong, like my face is not how it should be, like my age. And it was like I was grieving for this person. And when I let that go and just kind of thought, you know what you can live them.

    Sammy Taylor 1:18:44

    You can live an amazing lifestyle with all these complications. And it’s not the end of the world and you know, you can you’ve proven that you still go now you still haven’t you still making memories, and you’re going to amazing places. So when I let go and just accepted all that everything seemed to, like fell into place.

    Sammy Taylor 1:19:03

    So I met Leo and then I got like I had a career change last September and again, that was because when I was working in finance, I physically couldn’t even see the screen now. So there was like a physical barrier to that and I lived my career thought and so that in itself was almost a bit of an emotional kind of breathing call, I guess. But I love it now so I write for a mental health company called Mindre. I work full-time for them.

    Sammy Taylor 1:19:34

    And it’s nowhere near what I would have envisioned. So if you’d asked me two years ago if I love it more probably yes. Because it’s way more thrilling than it would have been. So now I’m just so you know, so comfortable with the path that I’m gonna end up on and I just know that whatever happens it’s the right thing at the right time and not to fear it.

    Sammy Taylor 1:19:55

    Because, you know, if you stumble across some dips in the road All the way. Or as I like to call it, this is like an absolute road accident. And then you know, it’s gonna level out and it’s gonna be, you know what.

    Acceptance


    Bill Gasiamis 1:20:16
    I love how you came to acceptance and then you fell into relationship acceptance that I’ll never have one. And now you’re in one life. That’s such a spin-out. Like, that’s bizarre, right? But I tell you what it is, from my perspective as a man, and you know, what’s sexy about a woman is not just the outside.

    Bill Gasiamis 1:20:42

    It’s also the inside the ability to be strong, but not much strong for the sake of strong where you pretend nothing’s wrong, strong where you’re prepared to accept that when shit’s wrong, you’re going to find a way through and going to overcome it and grow and that kind of strength.

    Bill Gasiamis 1:21:00

    I dislike it in my wife when she, I dislike it because I can’t help her right. After all, I don’t know how to help when she goes into a difficult emotional stage. And she doesn’t have the tools to overcome them. Because she’s never been to that particular one before.

    Bill Gasiamis 1:21:20

    I hate seeing her like that, and it doesn’t get me excited. It just makes me feel like I’m not good enough for her. Or we’re not good enough for each other or something like that. Because I don’t know how to help her support her and bring her out. And that’s my lesson, that’s my lesson is okay, let her go with that and let her overcome it.

    Bill Gasiamis 1:21:42

    If she stays there for too long, I get too shitty about it. And when she finds the path forward, and the solution, and she starts and you see the strength in her comeback, it’s like, wow, like I love this person again, like I love what she’s, how she’s overcome it, what she’s gone through.

    Bill Gasiamis 1:22:02

    And I wish I had the words to describe it. Like, it’s, I’m gonna use the word sex, it’s not the right word, right? But it’s like, it’s sexy when you can see somebody that’s just capable of just going, you know what, fuck it, I’m gonna find a way through, like, I’m going to fight through this, I’m going to grow, I’m going to overcome.

    Bill Gasiamis 1:22:27

    And he would have been just in awe of you, obviously, for your story, but also because he would have seen in you that that acceptance, that huge acceptance. And that is maybe what we need, as well. Like, what I need from her is her my wife’s acceptance of a situation and whatever, rather than fighting it and worrying about that situation, kind of helps me accept it and come to it as well.

    Bill Gasiamis 1:22:57

    And that unites me, that’s how I get united with my wife, I find myself becoming not that I’m ever disconnected from her, but like united when both of us can’t bring ourselves to accept something and get through it. And especially since the stroke, like I used to go to counseling, and my counselor would say to me, you know, like, what do you think of your missus, you know, like, far out, she’s stuck around, she’s awesome.

    Bill Gasiamis 1:23:29

    She’s gone through all this shit, her mom passed away, like all this stuff. And somehow, as this person who I didn’t think had that level of resilience in her has done, they’ve she’s found that she’s grown from it, she’s used the turf, to like to drive her going forward. And as a result of that, she went back to school, she’s studying psychology, she got a degree, she did all these things.

    Bill Gasiamis 1:23:58

    And now she’s going into her master’s and it’s like, wow, like, that’s somebody that I can follow, support, grow with, feel inspired by. That’s kind of what happens when you make the decision that I’m going to be okay, I’m going to live an amazing life, etc. And what the outside looks like, doesn’t matter.

    Bill Gasiamis 1:24:24

    You know, you kind of do all these things, and then, and even if I don’t find a relationship and even if I don’t end up with another guy or I’ll be fine, life’s gonna still be amazing. That is probably what made Leo go, man. This is a well-rounded not just an outside view of a person. This is a well-rounded, amazing person that I can get behind and be part of her life. And we can both grow together and have great experiences within. And he’s going I hit the jackpot, you know?

    Sammy Taylor 1:25:05

    Yeah. I remember like, when he asked me when I first met him and you know, it’s classic, you know, what’s your Instagram and I thought, oh god here we go like I often wonder like give it to this like person that we’ve met in quite a dark place and so I thought like, oh okay yeah really we chat here maybe because like it’s dark things and thought of GOD YES on it so I gave my Instagram and then he just read every single blog post and he just couldn’t get enough he just text me like I want to know everything.

    Sammy Taylor 1:25:35

    Like want to order no let’s meet up the next day like we spoke about everything and he was genuinely interested in knowing the whole story and then a first date practice proper date was he came to the UK to see me in London about a week later.

    Sammy Taylor 1:25:38

    But a week and a half later, I just had the eye surgery and so oh my god, I lit my I was like we think it was a breeze. It was still sick together. I thought, oh my god, like I wasn’t like in my prime Nicanor. So I was still turned and blonde. And I had said, I thought oh my god.

    Sammy Taylor 1:26:09

    And now like a first date is like, I mean that face-to-face first photo together, I’ve got like these sunglasses on because I was so black. I couldn’t subject anyone else in the world to it. But he didn’t even care. And so we talked about it now. And I did say something the other day, like what was it? Like, you know, did you not notice my face?

    Sammy Taylor 1:26:31

    And so he was like, Yeah, of course it is. But I just saw your Instagram and was so amazed by like, the thought and like, the whole journey is on there. And like reading your blogs, he was exactly what you just said he was I was so amazed with how you just handled the whole thing and how, what happened to you like, you could make what you have done out of it all.

    Sammy Taylor 1:26:53

    And he was like, you just fascinated me. And I just wanted to know, like everything about you. And it just goes like what you say I guess where it’s like, because I guess like. After all, I’ve made peace with it. And I wasn’t, like scared anymore.

    Bill Gasiamis 1:27:13

    You know, they said behind every great man is a great woman. You’re 27 and you’ve lived the life of somebody who might be in their 90s Like, you’ve been through so much you’ve had to learn to overcome the resilience. And there’s something about like, it’s magnetic, you know, to find somebody who has that depth of life experience at 27. And to be around them.

    Bill Gasiamis 1:27:43

    And if you’re the right kind of person, because you want to grow with them. And because of them and learn from them. Because I want to learn and grow from my wife, I don’t want to be the I don’t want to know everything and tell her how to live life and whatever. I want to know what’s unique about the way that she goes about life. There’s something magnetically unbelievably attractive about that.

    Bill Gasiamis 1:28:06

    Like it’s hard to separate and it’s not it’s not the is your inspiration and all that. It’s not that like it’s something else. It’s just attractive. It’s really attractive. So good on Leo, like he’s hit the jackpot, like I said, Good on you, mate. Well done. Yeah. So I appreciate our conversation.

    Bill Gasiamis 1:28:36

    Thank you so much for getting on the podcast well done, for doing all the amazing things that you’re doing good luck with all your procedures and your recovery to come. I wish you all the best tell me about what the book is called. And also where people can find you if they want to connect with you.

    Sammy Taylor 1:28:58

    So the book will be called Inside My Heads. And it’s very, very nearly out there. So I can be found on my Instagram handle is TC Brain UK. My personal is sammybitb and as well my website is tcbrainuk.com. So all the you know details on there. And so if anyone wants to kind of reach out say hello, then. Yeah, that’s where you should find me.

    Bill Gasiamis 1:29:27

    Thanks for being on the podcast.

    Sammy Taylor 1:29:28

    No worries. Thank you so much for having me. It’s great chatting to you.

    Bill Gasiamis 1:29:31

    Well, thanks again for joining us on today’s episode. I hope you enjoyed the conversation and got something positive from it. Please do LIKE SHARE, COMMENT, and post thumbs up. Please do interact with the show. In whichever way you can. It would just make a massive difference to the way the search engines rank the show and the way that other people who are searching for this type of content will be able to find the show.

    Bill Gasiamis 1:29:56

    If you are watching on YouTube, leave a comment like The Show, subscribe to the show turn on the notification bell so you can be notified of new episodes. And please do leave a comment because I love responding to comments and, and having an interaction with people who are listening.

    Bill Gasiamis 1:30:16

    I don’t want this to be just a one-on-one where I’m interacting with a guest, and nobody else is interacting with me about the show, I’d love it if you were also able to, in some way, shape, or form interact with the show. And at the very least, just tell the search engines what you think of the show so that it’ll rank better. Thanks so much again for listening and watching and I look forward to sharing the next episode with you.

    Intro 1:30:42

    Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals’ opinions and treatment protocols discussed during any podcast or the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

    Intro 1:30:59

    All content on this website at any linked blog, podcast, or video material controlled by this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis, the content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.

    Intro 1:31:22

    The information is general and may not be suitable for your personal injuries, circumstances or health objectives did not use our content as a standalone resource to diagnose, treat, cure, or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.

    Intro 1:31:36

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    Intro 1:31:50

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    Intro 1:32:06

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    The post Living With Nystagmus After Stroke – Sammy Taylor appeared first on Recovery After Stroke.

    1 hr 33 min
  • Living With Aphagia After Stroke – Alina Gonzales

    Living with Aphagia after a stroke requires resilience and toughness amongst other things and Alina Gonzales has those qualities in spades. In her time of need, she is also thinking of others and reaching out to raise awareness about stroke.

    Instagram

    Highlights:

    02:09 Introduction
    06:09 Hemorrhagic Stroke Caused By an AVM
    12:16 Balancing Between Patience And Impatience
    17:28 Loss of Hearing Can Cause Balance Issues
    27:32 How Hard Is It For The Caregivers?
    39:51 Living with Aphagia
    48:23 Continuous Learning

    Transcription:

    Barbara Gonzales 0:00
    Absolutely none when she came home, for some reason, because of COVID. We had no instructions on how to do anything. And she was on a feeding tube, which she still is, but I figured it out.

    Barbara Gonzales 0:14
    And it was very daunting to come home in a hospital bed with a trach and a feeding tube and not able to communicate, I was told not to bring her home. They wanted her to go to a facility, a long-term facility and I didn’t want that. And I know that she’s thrived as a result of being here. She wouldn’t be as well as she is if she was elsewhere.

    Intro 0:46
    This is the recovery after stroke podcast with Bill Gasiamis, helping you navigate recovery after a stroke.

    Bill Gasiamis 1:34
    Hello, and welcome to another episode of the Recovery after Stroke podcast. Recently, Spotify released a new feature that allows people to now rate their favorite shows similarly to how the Apple podcast app allows it.

    Bill Gasiamis 1:49
    So if you think the show recovery after stroke podcast deserves it, I’d love it if you leave it a five-star review. This will help the show rank better on search engines to help newly diagnosed stroke survivors and their carers find the show and it could make a massive difference in their recovery.

    Introduction – Living with Aphagia


    Bill Gasiamis 2:09
    So go to your favorite podcast app and share what the podcast means for you. It really will make a huge difference. And I will appreciate it. Now this is episode 185 And my guest today is Alina Gonzalez, who experienced bleeding in the brain at the age of 40 that was caused by an arteriovenous malformation or an AVM.

    Bill Gasiamis 2:34
    When she reached out to connect with me via Instagram messenger, this is what Elena wrote. Hi, Bill, I want to help. I’m 16 months post-event. How can I be useful? Thank you, Alina.

    Bill Gasiamis 2:50
    It was an impressive first introduction. Of course, the messenger doesn’t reveal the extent of how the stroke has impacted my guests. So I’m always impressed when I turn up and move heaven and earth to be on the other side of the Zoom call.

    Bill Gasiamis 3:07
    This was no different. Assisting in this interview is Alina’s mum who is sitting out of frame for much of the podcast, and I refer to her as mum for the majority of the interview.

    Bill Gasiamis 3:20
    But she does appear at the end of the episode where we finally get to see her face and learn her name. Alina has vocal chord issues that she is working hard on rehabilitating and also experiences difficulties with balance among other things.

    Bill Gasiamis 3:37
    So listen intensely because what she shares is sure to be useful to your stroke recovery. Alina Gonzalez, welcome to the podcast.

    Alina Gonzales 3:48
    Hi, how are you?

    Bill Gasiamis 3:51
    I’m well, it was a bit of a struggle for you to get to this meeting. You’ve missed it a couple of times. And today you’re running a little bit late you finally got here. How are you?

    Alina Gonzales 4:07
    I’m okay, everything takes more effort and more time.

    Bill Gasiamis 4:14
    Everything takes more effort and more time. What happened to you, Alina?

    Alina Gonzales 4:22
    Mom, my mom will tell you more about what happened.

    Barbara Gonzales 4:35
    So we don’t both fit in the one chair. But my name is Barbara and I’m her mom. And she had a stroke close to two years ago. And it was unexpected. And she was driving and she felt very dizzy and she called 911 and they took her to the hospital.

    Barbara Gonzales 5:00
    And the emergency room attending doctor when I arrived a few minutes later told me that she wasn’t going to make it because the brain bleed was such that it was inoperable.

    Barbara Gonzales 5:17
    And she wasn’t responding, she wasn’t waking up. They’ve given her a sedative, and she’s very sensitive to medications. So she wasn’t coming out of the sedation. So a couple of hours later, she started to respond. And she was airlifted to another hospital where they tended to her needs and here she is.

    Barbara Gonzales 5:43
    She was in the hospital for about a month and a half and went to rehab as an inpatient for about a month and a half. And then came home probably about a year ago. And she’s trying to gain her mobility so she can gain her independence back.

    Hemorrhagic Stroke Caused By an AVM – Alina Gonzales

    Bill Gasiamis 6:09
    Yeah. Wow. So what kind of stroke was it?

    Barbara Gonzales 6:20
    Hemorrhagic she was in a coma for about a month.

    Bill Gasiamis 6:27
    And do we know the cause of the stroke? Of the bleed?

    Barbara Gonzales 6:32
    It was an AVM.

    Bill Gasiamis 6:38
    Arteriovenous malformation. It’s what I had. And it seems to be very common in this podcast, but it’s a very rare thing. It’s only about one or 2% of the population that have AVMs.

    Barbara Gonzales 6:52
    It was too bad. She was very, obviously very health conscious. She had a great job with a pharmaceutical company. And she has her Master’s. She was an athlete in college, she had a scholarship and she played basketball for one of the schools here. And this was very unexpected. Has turned our lives in a different direction.

    Bill Gasiamis 7:25
    Yeah, yeah. That’s a pretty common thing for people to say about what stroke does to them. How old were you at the time Alina?

    Alina Gonzales 7:36
    40.

    Bill Gasiamis 7:39
    And there were no signs up until the day of the bleed. You had something going on in your head? Were there any signs whatsoever before that? Did you have a clue?

    Alina Gonzales 7:49
    No, I had no idea. It was a surprise.

    Bill Gasiamis 8:02
    Yeah, that’s a surprise, isn’t it? And since you got out of the hospital, what was it that you had to overcome? I realized that you have some speech challenges. Do you have aphasia? Is that one of the things?

    Alina Gonzales 8:23
    A little bit yeah.

    Barbara Gonzales 8:24
    Yes, she has a frozen rather not frozen, paralyzed vocal cord, her right vocal cord. And she was on a ventilator for about four weeks, I think and then she had a trach and she came home with a trach and she had it removed.

    Barbara Gonzales 8:48
    But her major problem right now is the dizziness and the lack of balance because she’s able to walk with assistance. But she can’t seem to stop getting those dizzy spells that are pretty constant.

    Bill Gasiamis 9:07
    And is always dizzy even when you’re sitting down?

    Alina Gonzales 9:11
    Yeah, it’s worse yeah. So the only time I don’t feel dizzy is when I’m lying down.

    Bill Gasiamis 9:22
    When you’re lying down is the only time you don’t feel dizzy? Does that mean that you’re lying down a lot?

    Alina Gonzales 9:30
    No, I’ve been working every day with my mom we go to the gym and walk the track about a quarter mile every day.

    Bill Gasiamis 9:45
    Yeah. And the dizziness, is it worse on some days and better on other days? Do you find a difference in sometimes the dizziness not being so bad?

    Alina Gonzales 10:04
    It’s bad every day.

    Bill Gasiamis 10:10
    Okay. So the sound of your voice, is that related to the tracheostomy that was used? Has that impacted your vocal cords? Is that what that’s done? Or is that impacted by the stroke? Do you know the difference? Do you know which one it might be?

    Barbara Gonzales 10:30
    They claim that it’s related to the stroke. My opinion having been by her side from the beginning, I feel that it was the trach that the trach was probably left in too long. And then when they did suctioning, the suctioning was done in a manner that, in my opinion, would cause some side effects. So we differ on that, on that opinion.

    Bill Gasiamis 10:57
    Yeah. Hard to know isn’t it? And it’s then also hard to I’m not sure about how you guys go about it, or how you feel about it. But whether or not you can lay blame or even whether it’s worth laying blame because what they’re trying to do is save Alina.

    Bill Gasiamis 11:14
    And it’s kind of one of the things that happened as a result of trying to save your life. So you kind of do you take the good with the bad? Does that annoy you that you also have to deal with that and that maybe somebody else was to blame for that?

    Alina Gonzales 11:33
    Yeah, I just want to be better. And communicate normally.

    Bill Gasiamis 11:41
    Yeah. Does your voice sound better than it used to Alina? Was it a lot more crackily than it is now?

    Alina Gonzales 11:58
    It’s better than it was.

    Bill Gasiamis 12:02
    It has improved?

    Alina Gonzales 12:05
    Yeah. For sure.

    Bill Gasiamis 12:07
    Excellent. What else has improved since the stroke?

    Balancing Between Patience And Impatience While Living With Aphagia


    Barbara Gonzales 12:16
    Well I mean, cognitively she’s, she’s very good. So her walking has improved a great deal. And it’s been a slow journey with a lot more to do. And she’s impatient about getting it all done as soon as possible.

    Bill Gasiamis 12:37
    Well done. That’s pretty common. That’s well done. And also, be more patient, and well done for being impatient. Find the balance if you can, because by being impatient, you’re pushing, pushing, pushing for recovery, but that might frustrate you.

    Bill Gasiamis 12:51
    So if you get too frustrated, then you’re being too impatient. And then just like slow down a little bit. What I love about you, Alina is the first time we met you sent me a message on Instagram. I never knew who you were up until then.

    Bill Gasiamis 13:07
    And you said, Hi, Bill, I want to help. I’m 16 months post-stroke. How can I be useful? Thank you, Alina. I mean, I find that staggering and amazing and brilliant that you’re 16 months post-stroke, and you’ve got the challenges that you need to overcome, but you want to help other people.

    Bill Gasiamis 13:33
    Why do you want to help other people? And I love what you do. Don’t get me wrong. I’m not asking the question in that way to be silly. I’m just very curious as to what motivates you to want to help other people when you need plenty of help yourself.

    Alina Gonzales 13:49
    I think there’s a lack of understanding about stroke, I don’t think people understand what people go through when they have it and what it feels like to recover, I don’t think a lot of people understand, people need help and support.

    Bill Gasiamis 14:18
    Yeah, I love it. There’s a lack of understanding and what people are going through, through stroke. And other people out there who have had a stroke need to know that they’re not alone.

    Bill Gasiamis 14:31
    And we need to bring awareness to these situations. So what I’m seeing is that every time I interview a stroke survivor, that behind the I’m gonna call it the mask of stroke, behind the deficits behind the voice problems, behind the dizziness problems.

    Bill Gasiamis 14:50
    There is a “normal person” behind there who is still keen and interested in living a productive life. And is being interfered with by these things that stroke causes. Do you relate to that?

    Alina Gonzales 15:07
    Absolutely yeah, I feel like because I’m there, I show more. Because I know the life that I’m missing out on living.

    Bill Gasiamis 15:30
    You’re missing out on living? Yeah. And do you feel like in two or three or four years from now, you’ll be getting back to living your life again?

    Alina Gonzales 15:50
    I think so yeah.

    Bill Gasiamis 15:52
    Alright, you will. See that’s what’s important, what you just said is that I think I will be living my life again. And you will because I’ve met so many stroke survivors who have been through what you’re going through. And somehow, after 2 3 4, or 5 years, things do shift, and they start to find their way in the world.

    Bill Gasiamis 16:15
    And they start to become really important members of their community. I’m talking about the community that lives around them, their family, their friends, where they live, and go to the shops and do their shopping and all that kind of stuff, they start to become important they become creative, find creative ways to help.

    Bill Gasiamis 16:40
    And right now, I know this might not be what you want to hear. But it’s time to heal, time to rest time to do nothing, and time to do as little as possible. Other than putting all your focus and energy into just getting better and recovering. And it’s I know, it’s been 16 months, but it’s quite early in the stroke recovery phase.

    Bill Gasiamis 17:08
    You’re very, very early on. And I know you’re impatient. But if you could kind of get your head around the fact that it’s early, it’s not like a broken leg, then I think 2 3 4 5 years, there’ll be stuff that you’re still dealing with you have to overcome every day.

    Hearing Loss Can Cause Balance Issues – Alina Gonzales

    Bill Gasiamis 17:28
    But things will start to shift in a direction that you’re controlling. And you’ll be back in control of your life. So the dizziness? What are the doctors saying about how to make that less of a problem? Do they have any ideas about how to support you with the dizziness?

    Barbara Gonzales 18:02
    Well, they’ve said that she should try and do vestibular training where she works through it without literally passing out. So generally, her impulse is to slow down when she gets dizzy.

    Barbara Gonzales 18:22
    What they’re suggesting is that she needs to head on and just keep pushing through it because the more she does that, the likelihood is that the dizziness will subside. So that’s the theory.

    Barbara Gonzales 18:36
    But she also had loss of hearing in her left ear. And she’s considering a cochlear implant because they’ve researched the fact that loss of hearing can cause a lot of imbalance. So we’re exploring that now.

    Bill Gasiamis 18:56
    Wow. So loss of hearing can also impact your balance.

    Barbara Gonzales 19:06
    Exactly, yes.

    Bill Gasiamis 19:08
    I’ve never heard that before. That’s got to be true. Because it makes sense, doesn’t it when you can’t hear out a year? It throws off your senses, and it might impact the way that you perceive the world.

    Bill Gasiamis 19:25
    And the way the brain receives information and then tells your body where it is in the world makes sense to me. So is the hearing completely gone in that year Alina?

    Alina Gonzales 19:39
    It’s completely gone.

    Bill Gasiamis 19:46
    Okay, so the cochlear implant will restore the hearing if you get that.

    Alina Gonzales 19:53
    Yeah.

    Bill Gasiamis 19:56
    Okay, so I interviewed one of the pioneers of the cochlear implant, also a neuroscientist Dr. Michael Merzenich, who is from the United States. And that’s going to be a very interesting episode for you to listen to. I think. Also, there are some people that you need to look into, and I’ll send you all the links.

    Bill Gasiamis 20:28
    And for the people that are watching, I’ll have links on the show notes, for the people that are listening as well. There’s a gentleman called Paul Becky reader. Back in the 80s, he used to work with people who had balance issues, and one particular lady was a lady who became unwell and lost her inner ear, her inner balance in the inner ear wherever that is.

    Bill Gasiamis 20:53
    And as a result, she couldn’t live her life. But then they rehabilitated her with this device that replaced Believe it or not that created with neuroplasticity, use the tongue to replace the inner ear balance mechanism. I can’t describe it well. But it was fascinating.

    Bill Gasiamis 21:19
    And there are videos of it on YouTube that you can watch. And there is also the interview with Dr. Michael Merzenich. And I’ll send that information. But also, for people who are listening and watching, you can go on to the recovery after stroke.com website, and click the podcast link. And there you will see the list of episodes.

    Bill Gasiamis 21:45
    And in that list, there’ll be a podcast that says we’ll find that right now. Rewiring The Brain, Michael Merzenich. It’s an amazing discussion on how far the study of neuroplasticity has come and how it’s helping people overcome some amazing challenges.

    Bill Gasiamis 22:21
    So what it does is offer hope but what’s also supported it’s a really big rabbit hole to dive down. And it’s also supported by a lot of research and studies so it’s legitimate and can improve lots of things for a lot of people.

    Bill Gasiamis 22:40
    I interviewed Dr. Merzenich, several years ago and the Episode Number is episode 108 for anyone listening and watching so you’re living at home with your mum now how has your life changed since the stroke? How were you getting about before the stroke?

    Alina Gonzales 23:08
    I can’t do anything for myself. So everything I need help with still, showering, going to the bathroom, cooking, I can’t drive I can’t walk, everything I need help with so I have no independence at all.

    Bill Gasiamis 23:34
    And before that what were you doing? How are you occupying your time?

    Alina Gonzales 23:40
    I was working, I had a really good job, and I was driving and I was doing theatre, I was in a local theatre.

    Bill Gasiamis 24:00
    Are you involved in the local theater? So you were an actor?

    Alina Gonzales 24:14
    Yeah.

    Bill Gasiamis 24:15
    Okay, so that’s a lot to lose, isn’t it?

    Alina Gonzales 24:22
    Yeah, I lost my job and the people I was with.

    Bill Gasiamis 24:32
    Yeah. Have you been able to reconnect with any of them recently?

    Alina Gonzales 24:39
    Yeah. I talked to them but it felt the same, I talked to them and they wanna know how I am.

    Bill Gasiamis 24:59
    Do you think it’s difficult for them to reconnect with you now that you’ve changed? And is it hard for them to know what to say do you think or how to behave?

    Alina Gonzales 25:13
    That’s probably part of it yeah. And they’re worried about not saying the right thing.

    Bill Gasiamis 25:30
    Is it possible for them to not say the right thing? Would you get offended if they say the wrong thing? Because they are ignorant, and they don’t know any better? Because they’ve never had what you’ve had? Would that offend you?

    Alina Gonzales 25:43
    No, not really. I understand because I already know that there’s a lack of understanding out there in general.

    Bill Gasiamis 25:56
    I love that. I mean, there’s no point getting offended is there? Because it’s not personal. It’s just literally people do not know what the hell is going on in the stroke world. And they don’t know how to respond or they don’t know how to speak.

    Bill Gasiamis 26:09
    And they don’t know how to make things better. And that’s what a lot of people try and do don’t they? They try and make things better. Because they want to help but they don’t know how to do that. So it becomes awkward.

    Alina Gonzales 26:21
    Yeah, that’s true. I want them to be honest, and upfront with me, but I think that they worry about things. Because I’m moving forward, I’m not stressed out about anything anymore, I don’t want to worry about things I worried about before.

    Bill Gasiamis 27:04
    What things were you worried about before that don’t matter anymore?

    Alina Gonzales 27:12
    Why do people like to stay away or at work, like why I wasn’t doing better at work? Or maybe somebody didn’t like me.

    How Hard Is It For The Caregivers?


    Bill Gasiamis 27:32
    Why somebody didn’t like you? Why you weren’t performing enough? Why you didn’t do too well on that project? All the usual junk that in the end doesn’t make for a healthy or happy life, does it? At all, what’s it like for mum? Has Mum been able to share with you how difficult it is for her at the moment?

    Barbara Gonzales 28:08
    It’s difficult, but I’m so grateful to have her home. That’s the only thought that comes to mind when things get a little. A little dicey. I remember how it was when she was hospitalized and my only concern was getting her back to the house I’m so glad and grateful to have her here.

    Bill Gasiamis 28:31
    Do you still get cranky at each other Mum?

    Barbara Gonzales 28:35
    We have our days.

    Bill Gasiamis 28:41
    I mean, it’s normal, isn’t it? It’s normal to have somebody who’s sick and unwell, whom you want to do everything for, but then you also want to tell them off and tell them to shut up. Or do you want to tell them to be quiet or do you want to tell them to behave?

    Barbara Gonzales 28:57
    It’s more the other way around. But yes.

    Bill Gasiamis 29:01
    Alina mum, drives you nuts?

    Alina Gonzales 29:05
    No.

    Bill Gasiamis 29:06
    Are you honest? Are you being honest now?

    Alina Gonzales 29:09
    Yeah.

    Bill Gasiamis 29:12
    Look, we can all admit it a little bit. This is a bit like a therapy session. All right? So everyone can just tell the truth for a little bit if they want to. But if they don’t want to, it’s okay as well. We can all lie. There’s no problem at all.

    Bill Gasiamis 29:24
    I know how frustrating it was for my wife. She was caring for me at the beginning and man she copped so much abuse because I was not myself like I was in a completely different headspace in the world.

    Bill Gasiamis 29:41
    You know, like I was just gone. I was angry the medication was making me act up and misbehave and all sorts of things. And some of it was not only the medication, some of it was me as well. Right? Upset at what happened and all the usual stuff and I reflect on it now. And I know that she was doing a tough, I never knew how tough she was doing it.

    Bill Gasiamis 30:04
    Because she never told me because she was interested in maybe becoming well. And not making it about her. But at some point, I think caregivers need to make it about them, especially when it’s a 24-hour-a-day, seven-day-a-week job. Is that what is happening with your mum? Is it 24 hours a day, seven days a week that you’re with Alina?

    Barbara Gonzales 30:31
    Yes, it is.

    Bill Gasiamis 30:33
    And did you put your life on hold?

    Barbara Gonzales 30:39
    Oh, yes. There’s there’s nothing that goes on. That doesn’t revolve around her right now.

    Bill Gasiamis 30:45
    Yeah. And what was your life? Like, up until the stroke? What were you up to? How did you spend your days?

    Barbara Gonzales 30:55
    Well, I was I was babysitting with my two grandchildren. And then there were some illnesses in the family. And I thought that I just thought that, and then COVID This, this all happened. She got sick right around the time that COVID-19 started. So it’s just been it’s been like the world is turned upside down.

    Bill Gasiamis 31:19
    And is there anyone helping you out from time to time?

    Barbara Gonzales 31:23
    No, Not presently? No.

    Bill Gasiamis 31:27
    Right? And is there any support for somebody like you a caregiver and the person you’re caring for? Is there any way that you guys can access any support any kind of in-house support or external support?

    Barbara Gonzales 31:41
    I haven’t looked at anything right now. We’ve been so busy doing outpatient therapy. So we were driving a distance from home to get therapy for physical occupational and speech. So we’re, we’re really busy. So I know. We haven’t looked at anything like that.

    Bill Gasiamis 32:05
    It’s pretty common to be busy, at the very beginning of the whole stroke recovery, and working out how to solve all the little problems that turn up. And then at some point, when you start getting into a bit of a routine, and you have solved a lot of the problems.

    Bill Gasiamis 32:24
    Then maybe there’ll be some space or some time that’s created for you to start to get curious about what other support you can bring in how else you guys can support Elena, and also how you can give yourself a break because caregivers do it tough. And they need help and support as well. We need to make sure that the caregiver is healthy and well, there’s no point in having sick people.

    Barbara Gonzales 32:52
    That’s true. And I just want to say that we admire your work so much that of all of the people and all of the areas that we’ve looked into and researched. There is no single person that we enjoy hearing more than we enjoy hearing you. You’re just a wealth of information.

    Bill Gasiamis 33:20
    I enjoy you telling me that thank you so much. Yeah, I felt the same as you I was like Alina I wanted to share. I wanted to help because there was not enough known and when I went through my situation, it started 10 years ago, and I’m still going through it right now.

    Bill Gasiamis 33:40
    But clearly, I’m in a different situation than a lot of other stroke survivors, because we’re all different. I wanted to know how to help and what I could do, and I realized some people weren’t getting any support and weren’t getting any awareness about the situation.

    Bill Gasiamis 33:59
    Caregivers were one of those groups of people. And, then I felt like, if I’m going to interview people, I want stroke survivors to come on. But I didn’t know how bad stroke was because I got this version of it. And then I met people who can’t speak because of stroke who can’t see because of stroke, who speak but have got a different voice like Alina.

    Bill Gasiamis 34:22
    And then I had to make a decision. Because I used to be ignorant. I had to make a decision do I want everybody on my podcasts or just the people that can speak properly? And it’s like, how will I be able to share what stroke is really about if I just have people on that can talk like I can that wouldn’t be an accurate representation of stroke survivors.

    Bill Gasiamis 34:48
    So I’ve interviewed people that can talk like Alina, that have less ability to talk and some people that can’t talk at all, and we’ve used a machine recording to do that. So I also wanted to get caregivers on I wanted to get caregivers on because they are part of our community.

    Bill Gasiamis 35:13
    They are doing the heavy lifting as far as I’m concerned, and caring for people who need the support, but the caregivers don’t get any training. Mum, do you agree there’s no training, no support, no information about how you can do that well? And then also, at the same time, how to support yourself?

    Intro 35:34
    If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. How long will it take to recover? Will I recover? What things should I avoid in case I make matters worse?

    Intro 35:51
    Doctors will explain things that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you.

    Intro 36:14
    It’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website. Now, recoverafterstroke.com and download the guide. It’s free.

    Barbara Gonzales 36:37
    Absolutely none when she came home. We for some reason, because of COVID. We had no instructions on how to do anything. And she was on a feeding tube, which she still is, but I figured it out.

    Barbara Gonzales 36:51
    And it was very daunting to come home in a hospital bed with a trach and a feeding tube and not able to communicate I was told not to bring her home. They wanted her to go to a facility, a long-term facility and I didn’t want that. And I know that she’s thrived as a result of being here. She wouldn’t be as well as she is if she was elsewhere.

    Bill Gasiamis 37:20
    Yeah, I hear you. So you have to become a medical expert overnight, and nobody tells you how to do it. That is ridiculous. Doctors spend years and years in hospital to make sure that they don’t do the wrong thing. Are you concerned when you first come home that you might do the wrong thing and make things worse?

    Barbara Gonzales 37:49
    Oh, obviously, but it didn’t take me long to look, she’s on no medication. And it didn’t take me long to figure out that she was being overmedicated. And things that she was suffering from when she was in. She no longer had a problem with so I gained my confidence quickly.

    Bill Gasiamis 38:10
    So one of the people that you might love to listen to me interview guys is Duncan Campling. And he was on episode 133. And he spoke to me with a machine. So we did a little bit of preparation, and we wrote the questions down. We allowed him to record his answers on his voice, computer, or whatever it’s called.

    Bill Gasiamis 38:40
    And then we interviewed about a week later. So you might find that interesting. And everybody that’s been on the podcast just wants to share, they just want to help they just want to put stories out there. It’s a good way for families to kind of get an understanding of what is happening. So do you feel like this is something that is going to be worth sharing with the family? Are they going to be able to hear or watch this podcast episode?

    Barbara Gonzales 39:14
    Absolutely. Yes. It’d be great.

    Bill Gasiamis 39:18
    Yeah. Family and friends, because really, they’re the ones we want to know what’s going on. We also want them to know that we understand if they don’t know how to speak about what’s happened to us or how if they don’t know what to say it’s okay. If they say the wrong thing we won’t get offended might be a really good way to reach them without having to sit them down on one and have a conversation with them.

    Barbara Gonzales 39:49
    That’s true, that would be great.

    Living with Aphagia


    Bill Gasiamis 39:51
    So Alina, are you still on a feeding tube because there’s a risk of choking when you chew and swallow food?

    Alina Gonzales 40:02
    Yeah if I swallow I could have aspiration. So my right vocal cord is still paralyzed. So I can’t swallow properly.

    Barbara Gonzales 40:22
    So, what she takes in because the right vocal cord isn’t working it could end up in her lung instead of her stomach. But she’s come a long way I mean she’s eating mashed foods now and we’re looking forward to having the tube removed once she can keep her intake at a level of the proper calories and the nutritional value.

    Bill Gasiamis 40:56
    Okay, so that’s improved as well. So you’re getting slowly able to increase what you have the kind of food that you eat, and then increase the amount that you ate so that you’re getting, say your regular 2000 calories a day or whatever the number is.

    Bill Gasiamis 41:10
    But at the moment, you’re not able to get that many calories through chewing it and through your mouth yet.

    Alina Gonzales 41:17
    Right.

    Bill Gasiamis 41:19
    Okay. So the tube is connected to where? Where is that attached? I know it’s somewhere around the belly. That’s your cat, hello kitty cat, the cat wanted to be on the podcast too.

    Alina Gonzales 41:40
    In my stomach.

    Bill Gasiamis 41:43
    It’s connected to your stomach. Okay. Aspiration is what happens when food goes into your windpipe instead of your throat.

    Alina Gonzales 41:54
    Yeah, instead of going to my stomach, it goes to the lungs.

    Bill Gasiamis 42:00
    Yeah. Okay. So you’ve found over time that that’s getting better? And is there some kind of a goal or some kind of a timeframe where you’re hoping to move from being tube-fed to being fully able to eat normally, or something close to normal?

    Barbara Gonzales 42:25
    Her speech therapist thinks that maybe in a couple of months that might be possible. So she’s off, when she came home, she was on continuous speed, which really limited movement for her and all but I figured out how to give her the bolus feedings. And, so she’s eating, she’s happy that about three times a day, which is great, because that way she can get around without being attached to anything.

    Bill Gasiamis 42:54
    Right, right. So mum you’re gone back to caring for the child that you already cared for when she was born. Are there similarities? Is it a completely different experience? How do you relate to this version compared to the first time?

    Barbara Gonzales 43:20
    Do you know it’s indescribable, number one, but I can only tell you that I do see light at the end of the tunnel here? And I know that she can improve. And I know that this isn’t a permanent situation. So it’s just getting through it. That is the journey. So I’m hopeful.

    Bill Gasiamis 43:44
    Do you agree Alina?

    Alina Gonzales 43:51
    Yeah, I have to get better.

    Bill Gasiamis 43:53
    Yeah, you have to do and you will, things will improve. Is she a pretty cool mum?

    Alina Gonzales 44:02
    Yeah, I feel very lucky, at the end of the day I know how lucky I am.

    Bill Gasiamis 44:14
    Yeah. She’s a pretty cool lady. I can hear that in her voice, I love the psychology that she used to approach this situation, you know, it’s a situation where things are difficult, but they’re going to get better. We have to get through it. It’s indescribable. But we have things that we need to achieve and overcome and it’s not permanent.

    Bill Gasiamis 44:46
    And I love that that is probably one of the best things that I’ve heard on a podcast is that this particular current state in situation although it feels quite possibly, you know, being shiny an ongoing and never-ending, it is not permanent, you will shift and change. That’s a great way to think about things.

    Alina Gonzales 45:10
    Recovery is so slow, that’s the thing I was unaware of before.

    Bill Gasiamis 45:22
    Yeah. It is so slow. I would love to have you guys back on the podcast 12 months from now to show me how far you’ve come.

    Barbara Gonzales 45:33
    That would be great.

    Bill Gasiamis 45:37
    All right now, Mum has remained behind the camera for this whole time. And she hasn’t revealed herself. We don’t even know her name. So why don’t we get Mum in front of the camera? And we can get to see her and we can ask her name.

    Barbara Gonzales 45:56
    There you go.

    Bill Gasiamis 45:57
    That’s not enough. That’s not enough. Hey, hello.

    Barbara Gonzales 46:04
    My name is Barbara.

    Bill Gasiamis 46:05
    Hey, Barbara. Lovely to meet you.

    Barbara Gonzales 46:08
    And I’m so thrilled. You are just really special to us your voice. Whenever I hear your voice. I come running to hear what it is you’re saying.

    Bill Gasiamis 46:17
    Thanks so much, Barbara. How old are you? You look so young.

    Barbara Gonzales 46:22
    I’m so old.

    Bill Gasiamis 46:24
    You don’t look it, how old are you?

    Barbara Gonzales 46:28
    This is a podcast other people will be hearing this I’d rather not. I turned 66.

    Bill Gasiamis 46:36
    Okay. Well, you look so young. You look fit healthy, and energetic. That’s where I was getting at. You guys look like, there’s not a lot of gap between you in age. And yeah, I was kind of right. It’s only 26 years. It’s nothing. You’re a young mum?

    Barbara Gonzales 46:53
    Yes. Yes. Very young.

    Bill Gasiamis 46:56
    Yeah. Well, I can relate to that. I was a young dad, I was 22 when I became a dad.

    Barbara Gonzales 47:02
    That sounds about right. Yeah. That is too young to have children.

    Bill Gasiamis 47:08
    Too young to know what the hell you’re doing let alone raise kids right?

    Barbara Gonzales 47:14
    And your children are how old now?

    Bill Gasiamis 47:16
    25 and 21.

    Barbara Gonzales 47:20
    Wow, that’s incredible. Right? He looks so young himself.

    Bill Gasiamis 47:24
    So that’s the thing. I’m trying to get my head around the whole age gap. And I think it’s great to be young and energetic when you have kids because you guys can support each other for a long, long time to come. And that’s kind of one of the benefits that I didn’t realize that I was going to be able to have when my kids were so young.

    Bill Gasiamis 47:49
    And I was so young when I had the stroke, I was 37. So they that that lack of old age, between, you know, that lack of gap between me and my kids meant that they kept me young and I had something to focus on and something to aim towards getting better about and something to teach them and to leave them better for what happened to me like to kind of give them life experience without going through the tough hard parts of it. Does that make sense?

    Continuous Learning


    Barbara Gonzales 48:23
    You have such a great attitude, you do such a solid, so centered, and truly balanced. I enjoy hearing you.

    Bill Gasiamis 48:33
    Yeah, I try to it’s something that I work on. And you know, people who listened to me sometimes. And I asked him to be in a podcast, I get all flustered, you know, what am I going to say it’s Bill, Bill wants me on the podcast. And it’s like, I’m just a regular guy learning all the same stuff that you’re learning, and I don’t know how well I’m doing until I’ve become better.

    Bill Gasiamis 48:56
    And I reflect on how far I’ve come. So I’m constantly in this learning phase like you guys about, you know, what’s the best way to go about this. We can choose a way that’s difficult and mentally challenging. And we can suffer through that. But that’s not the most useful we suffer regardless of which way we go forward, we may as well use suffering to our advantage to get something out of it.

    Bill Gasiamis 49:27
    And that’s kind of what I see you doing. You said it you know this is only temporary in this current situation. And I love what you said it’s about what’s going to happen in the next and how things will change for the better in the next two, three four five months six months, or a year.

    Bill Gasiamis 49:44
    So I just hope that my thinking is making other people think and if they disagree with me, I’d love to hear from them. Tell me you know, come on board to the podcast, leave a message On YouTube or, you know, give me a thumbs up or thumbs down, I don’t mind.

    Bill Gasiamis 50:05
    But I think this is the only way we’re gonna get through it together, right? And it doesn’t matter how far we are in the world. We can all help and support each other. And you think that I’m helping you and I am. But you guys are also helping me. That’s what’s important for the people who come on this podcast to also know.

    Barbara Gonzales 50:29
    It’s amazing how an experience like this also makes you realize how much you can do that you didn’t think you were able to do. That’s always an eye-opener.

    Bill Gasiamis 50:41
    That is such an eye-opener. Look, it’s such a pleasure to see you both. Thank you so much for being on the podcast. Alina, I’m going to invite you back in a year. Right? We’re going to do this again. So is there anything you want to say to leave us with before the end of the episode?

    Alina Gonzales 51:00
    Just don’t give up.

    Bill Gasiamis 51:09
    Don’t give up. I couldn’t agree more. Thanks so much for being on the podcast.

    Alina Gonzales 51:13
    Thank you so much.

    Bill Gasiamis 51:17
    Well, thanks for joining us on today’s episode. I hope you’ve enjoyed that conversation and got something out of Alina and Barbara’s story. They’re both amazing ladies and support each other to get through this. And I think that what I have to share should make and will make a huge difference for a lot of people.

    Bill Gasiamis 51:39
    Please comment, like, or share. Wherever you see this podcast episode. If it’s on YouTube, give us a thumbs up, leave a comment, like, share. If it’s on Instagram, and you’re just seeing a small amount of this share let me know what you think give me some feedback, every interaction will make a big difference to how the show ranks on social media.

    Bill Gasiamis 52:01
    As a result of that, it will make it easier for other stroke survivors to find the show and hopefully, it’ll support them to have a better stroke recovery. So thanks for listening and see you on the next episode.

    Intro 52:14
    Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals’ opinions and treatment protocols discussed during any podcast or the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

    Intro 52:31
    All content on this website at any linked blog, podcast, or video material controlled by this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis, the content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.

    Intro 52:31
    The information is general and may not be suitable for your personal injuries, circumstances or health objectives did not use our content as a standalone resource to diagnose, treat, cure, or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.

    Intro 52:31
    Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be, call triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.

    Intro 52:31
    Medical information changes constantly. While we aim to provide current quality information in our content. We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency, or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with the links we provide however third-party links from our website are followed at your own risk and we are not responsible for any information you find there.

    The post Living With Aphagia After Stroke – Alina Gonzales appeared first on Recovery After Stroke.

    56 min
  • How A Sub-thalamic Hemorrhagic Stroke Cured My Anxiety – Mali Torres

    Mali Torres was anxious about everything until one day she had a Sub-thalamic hemorrhagic stroke which had a positive side effect of curing her Anxiety for good.

    Instagram

    Highlights:

    01:48 Introduction

    08:04 Stroke Cured Anxiety and Depression
    12:47 Drugs and Alcohol
    20:09 Deficits from Sub-thalamic Hemorrhagic Stroke
    25:58 Life Without Anxiety And Depression
    35:44 Common Cultural Treatment Practices
    49:22 Having Me Time
    56:50 Starting Over
    1:03:53 People Worth Keeping In Your Life

    Transcription:

    Bill Gasiamis 0:00

    What were you anxious about?

    Mali Torres 0:03

    Everything. I mean, just I had what I would think would have been diagnosed had I ever gone in. As general anxiety, I was afraid that leaving my kids something would happen to them. I didn’t start driving until I was about 30 years old. Because I was afraid of hurting people. I was afraid of being in an accident. I was very nervous about a lot.

    Intro 0:40

    This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after a stroke.

    Bill Gasiamis 0:53

    Hello, and welcome to another episode of the Recovery after Stroke podcast. Recently, Spotify released a new feature that allows people to rate their favorite shows similarly to how the Apple podcast app allows it.

    Bill Gasiamis 1:08

    So if you think that the Recovery after Stroke podcast with yours truly Bill Gasiamis deserves it, I’d love it if you left the show a five-star review. This will help the show rank better on search engines and help newly diagnosed stroke survivors find the show and it could make a massive difference in their recovery.

    Bill Gasiamis 1:28

    Just like you needed something to help guide you and to help make you feel like you’re not going through this alone. When you were diagnosed. Newly diagnosed stroke survivors will also benefit from knowing that there is a podcast out there where they can listen to the stories of other stroke survivors.

    Introduction


    Bill Gasiamis 1:48
    So go to your favorite podcast app and share what the podcast means for you. I would appreciate it and new stroke survivors finding the podcast will appreciate it. Now, this is episode 184. My guest today is Mali Torres, who experienced a sub-thalamic hemorrhagic stroke at age 47, which had the positive side effect of curing the debilitating anxiety that she lived with most of her life. Mali Torres, welcome to the podcast.

    Mali Torres 2:21

    Thank you. Thank you for having me.

    Bill Gasiamis 2:24

    Yeah, you’re welcome. Thank you for being here. Tell me a little bit about what happened to you.

    Mali Torres 2:30

    Well, December 2020 was November 30, like the last day of November, after a great Thanksgiving. We had gone out of town to Northern California, which is beautiful. All woods and full of nature.

    Mali Torres 2:55

    I came home. I had been having headaches for quite a while I’m now realizing. And so November 30, I was getting my husband ready for work. He’s a nursing assistant. At the time he was working nights.

    Mali Torres 3:21

    So getting him ready helping him get ready for work and his first day back to work after vacation. And so I sent him off and got ready for bed. And I fell and I remember not that we have a giant house with quite a small house. But I remember falling in the doorway between my kitchen and living room.

    Mali Torres 3:53

    And thankfully my younger son was home and heard me fall. I had fallen by the couch which was probably 20 feet behind me. I remember telling myself I was having a stroke because I knew from reading I’m an avid reader I knew the signs of stroke. There was no reason I should have fallen where I did how I did.

    Mali Torres 4:33

    But my husband told me that he was the one who told me I was having a stroke. So who knows, you know, memories are always weird.

    Bill Gasiamis 4:41

    Especially when you’re having a stroke.

    Mali Torres 4:44

    Yeah. So I don’t remember being afraid at all. I don’t remember my husband being there. My son had called my husband back from work because he only worked probably 10, maybe 15 minutes away from us.

    Mali Torres 5:10

    So very close. So he was at work already signing in and getting his patients ready. And he said I gotta go, you know, my wife’s been in trouble. I gotta go. So he came home and by then the ambulance and everybody all the medical was here.

    Mali Torres 5:35

    And so yeah, they came in and I was on the floor and I had a hemorrhagic stroke on my left side, so I’m affected on my right side. But yeah, my husband said that I looked like a very sad gorilla sitting on the floor, and just very sad and apologized to him.

    Mali Torres 6:17

    And which is I’m very, usually very clumsy. So I guess I was telling him, I was sorry for falling again. And yeah, so they ended up taking me. I live in I guess, a suburb. We call it the hood of Los Angeles. And so about here, we go by time, so 15 minutes outside of downtown Los Angeles City.

    Mali Torres 6:59

    But they took me to a wonderful hospital, in Long Beach, California. And they’re very well known for their stroke care. So thankfully, because I got some amazing, amazing doctors, and amazing nurses, the whole staff was just amazing. So my husband was able to meet me there and there started my journey.

    Mali Torres 7:30

    You know, it was something that I didn’t ever think would happen. You know, none of us do. But I was there for probably I think it was a month and a half that I was in the hospital. So as of right now. Exactly a year ago, I was still in the hospital. So it’s been crazy.

    Bill Gasiamis 8:02

    It’s very fresh, isn’t it?

    Stroke Cured Anxiety and Depression – Mali Torres

    Mali Torres 8:04

    Yeah, it’s I’ve never been afraid of it. I’ve never been you know, angry. Because I have met quite a few stroke survivors that are angry, and bitter, and why me? And I’ve never done that. You know, and like I told you the way we started with during the interview I have suffered from anxiety and depression since a very early age.

    Mali Torres 8:45

    I can remember being in first grade just riddled with anxiety, missing school days, many days. And as I grew up, I became of all things a hairdresser. Which, you know, meeting people all the time, that’s not something you would think somebody with anxiety would do.

    Mali Torres 9:15

    But I love art, I love to create I love to you know, make people feel good. And that was a good thing with hair. But I remember having to convince myself to stop the car, I would leave an hour before my appointments. So I could put myself up to go to work.

    Mali Torres 9:42

    Even though these were people who wanted me there, you know, my anxiety was so bad that I couldn’t do it. I was gonna go see friends. I couldn’t do it. I canceled constantly and when I finally, like, not just woke up, but realized where I was in the hospital I realized I didn’t have that anymore.

    Bill Gasiamis 10:18

    That’s very cool before you go into that part of it because that’s everyone’s going to be interested to hear about that. But what were you anxious about?

    Mali Torres 10:28

    Everything. I mean, I had what I think would have been diagnosed had I ever gone in. As a general anxiety. I was afraid that leaving my kids something would happen, to them. I didn’t start driving until I was about 30 years old. Because I was afraid of hurting people. I was afraid of being in an accident. I was very nervous about a lot.

    Bill Gasiamis 11:14

    So it’s fear based it sounds like.

    Mali Torres 11:19

    I think so. But even with people, even with situations, it was just a general anxiety. And it was very debilitating, I guess you could say because they would stop me, and there were times that I would cancel appointments. Because I couldn’t make it to work. Because I was shaking in my car. I had to stop my car, and I’d have to come home.

    Mali Torres 11:54

    Because I’d be just so nervous about everything. You know, and these, like I said before, these are people that I knew that were there because they liked my work. And still, it was very difficult, very difficult. So now, you know, along the same lines, even going out with friends, people I had known, you know, for 20 years, it was very difficult for me, I would cancel, you know, oh, we were going to go to a club, but I couldn’t do it.

    Bill Gasiamis 12:40

    Why couldn’t you do that? Because the club sounds like it was fun. You couldn’t have hurt somebody at a club, could you?

    Drugs and Alcohol – Mali Torres

    Mali Torres 12:47

    No, I just would get so anxious and so nervous. I can’t even explain it, I would be shaking. And unfortunately, because of all my anxiety in my teens, I dealt with it with our goal. I had a big problem with alcohol so I quit drinking before our legal age of drinking.

    Mali Torres 13:34

    You know, so then, unfortunately, I started doing, you know, doing drugs. And it was all to cope and get rid of that part of myself. Because it was such a difficult part. You know, I couldn’t do, I couldn’t function. I wasn’t functioning at all I should have been to the doctor.

    Bill Gasiamis 14:04

    Yeah. Yeah. Did it help at all? Was it helping? Were the drugs achieving what you intended?

    Mali Torres 14:13

    That was my problem, they did. So it was you know, that’s how I kind of justified it. You know, okay, well, you know, I’m okay, I can go and I would talk to people and I wasn’t myself. But they were hurting me physically, hurting me mentally, emotionally.

    Mali Torres 14:38

    So it wasn’t a good thing. So thankfully, I stopped. You know, because yeah, I would look in the mirror and I didn’t recognize myself, you know? So I didn’t want that anymore. So when I met my husband I completely quit. I quit it all.

    Bill Gasiamis 15:03

    But you still had the anxiety?

    Mali Torres 15:06

    I did. But once I met him you know, people talk about like, the whole soulmate thing. And he was my other half, he became that what I could depend on, and he took that place, you know, he helped me a lot. And he helped me to get back in the world to you know, experience other stuff.

    Mali Torres 15:44

    But I still had anxiety I still had even that depression, you know, it was just my whole life, you know. And once I had kids because we have two boys, I put all of my energy into being a mom, and that was kind of taking the place of the alcohol and the drugs, and it was always something else that took my mind off of it, you know, thankfully, a healthier way.

    Bill Gasiamis 16:28

    So now that it’s gone. Okay, I’m gonna give you my version of what I think happened, and why it’s gone. Okay, but maybe I’m completely wrong. And that’s okay. Because I want to prompt the conversation about it. Is it possible that the stroke interfered with all the connections, the ones that created anxiety?

    Bill Gasiamis 16:50

    Because anxiety is it’s kind of like a learned behavior, you get anxious about one thing, and then you get anxious about the next thing. And the pebble starts to create a lot of neural pathways, they create neuroplasticity to make anxiety happen. And they get better and better at it, they practice it so much, they just get better and better at it.

    Bill Gasiamis 17:11

    And then they don’t know how to unpractice it, and how to get rid of those pathways. Do you feel like the stroke perhaps, firstly, do you relate to that? And then secondly, did that also interfere do you feel like it did interfere the stroke interfered with those pathways and made them stop working or something?

    Mali Torres 17:34

    It feels like it, it feels like, you know, there is a part of our brain that dies. And I feel like that’s the part that did that like something completely gotten away, you know, and, that was supposed to be out, let it out.

    Mali Torres 17:56

    You know, because now I can talk to people, I would never have done this interview before ever, you know, like I’m a naturally shy person. But shyness is completely different than anxiety.

    Mali Torres 18:17

    Because shy is just being you know, a little hesitant here and there. But anxiety is very difficult. It’s a difficult way to live. And believe me, there’s no one tough you know, would willingly have anxiety, you know, because unfortunately, I do know other people that have anxiety and how depression and the same thing, you know, it limits your life.

    Mali Torres 18:51

    And they have seen the difference and maybe been asked what did you do? How to get out of it. And that’s like, unfortunately, I had a stroke. So I wouldn’t recommend this way to anybody. But yeah, it has to be something it has the stroke took away so much negative, you know, and it’s great that first of all, I love that I can be here to talk that I survived it.

    Mali Torres 19:35

    Because you know, I do know even since my stroke a friend of mine lost her uncle to stroke and then we’ve seen celebrities lately that you know, have died from stroke. And that’s all you hear is, you know, people that pass and so to be here to be able to You learn about it, know about it. And, be happy about surviving it.

    Deficits from Sub-thalamic Hemorrhagic Stroke

    Bill Gasiamis 20:09

    It’s when you’re when you were in the hospital, what did you have to overcome? Did you have deficits that you had to recover from as well?

    Mali Torres 20:18

    Honestly, yes. I don’t remember the very beginning, in my first three weeks I have maybe three memories from three very quick memories. And it was more like the nurse’s station and the view outside of my window.

    Mali Torres 20:48

    But I was told that I had speech therapy, which I had to learn how to eat again, I had to learn to just, I mean, to swallow to talk, clearly again. It didn’t take as long as some people have seen. But yeah, It took a while, it took a while, even after I did kind of, I guess wake up to where I can remember things happening.

    Mali Torres 21:34

    My speech therapist would come to the room. And she’d have me read three or four lines of a paragraph. And then put the stuff in order. And one of my first memories in there was just being so sad that it was taking me so long. Because I’m an avid reader. I love to read.

    Mali Torres 22:08

    I mean, I’ve read Lord of the Rings, three times, and even once is difficult. I am on my 13th time of reading the Harry Potter series. I joke with friends that I’ve donated more books than most people have read.

    Mali Torres 22:30

    So for me not to be able to read a few lines and put it together, It was scary, it was really scary that I wouldn’t get that back. But thankfully, since I’ve been home now I’ve read, I think it’s six full books. And that for me, that’s a slow year.

    Bill Gasiamis 23:00

    So it’s only been 12 months. Did you have any of those moments? I know, you said you didn’t go to the Why me? But did you have any of those moments where you considered all of the negative side? I might not be here. This might mean this and this. Did you go there at all?

    Mali Torres 23:21

    I did. Because I think that to not think about it. You can’t appreciate what you do have and what you’ve come back from. And I do that quite a bit. Actually. I read a lot of stories, I listen to a lot of stories. I listen to all the podcasts. And actually, yours was the first podcast that I could listen to I was never able to listen to them before.

    Mali Torres 23:53

    I never enjoyed them before. And then I found yours. And I was hooked. Believe me. So then that led me to a few others. And so yeah, I reflect constantly, because I’m reminded, you know, I’d like to remind myself where I could have been, where I have been, and where I am.

    Mali Torres 24:24

    And it’s because I kind of tend to forget, because I have memory issues too, but I kind of take life for granted no matter what, you know. So I like to remind myself that you know, I almost wasn’t here anymore. You know, I came very close to not being here anymore.

    Bill Gasiamis 24:55

    It’s very human to take things for granted and it’s fair enough. We don’t always have to think about the possibility that stuff’s gonna go bad. But a reminder every once in a while, that’s okay. I think that just lets you appreciate amazing things that are happening around us that we can see otherwise.

    Bill Gasiamis 25:13

    I mean, I was like, you, I didn’t go to the negative side of it too much. But I did become aware that I was gonna die one day. And that was the first time that it happened. So I was like, you know, so I did what I had to do to make things right, by the people that needed, that I needed to make things right by and to adjust my behavior, and to be a better version of myself and to apologize, and to do all those things.

    Bill Gasiamis 25:45

    So it was helpful like that. Then I realized that if I don’t do those things, and I’m not around anymore, then I won’t be able to do them. And that’s no good, I have to do those things.

    Mali Torres Life Without Anxiety And Depression


    Bill Gasiamis 25:58
    And it kind of made me speed up my idea of when I should do those things, or when I should take responsibility for those things. And that’s kind of how I went about it. So now that anxiety has gone from your life, How has life changed? What is different about life?

    Mali Torres 26:25

    I get out more I see more people because I’ve always loved being at concerts, and little shows and music are big on our family. And my husband’s musician on the side. And a lot of our friends are musicians. And yeah, it’s kind of funny, because we live in LA. So all these musicians, right?

    Mali Torres 26:59

    But we do have a lot of people that would play music and a big thing for me and my husband is going to shows. And it used to be that I made excuses, not to go to the small shows and, you know, be in like around people. And now it’s like, let’s go, let’s go, let’s go, you know, I can’t wait to go to the shows and practices and meet new people.

    Mali Torres 27:29

    And, you know, we’re both meeting people who have been in the music business for a very long time. I met one of my favorite drummers through my husband, you know, my absolute favorite band is Jane’s Addiction. And I met the drummer, and I’m just like, she knows, my husband takes pictures because he’s an awesome photographer.

    Mali Torres 28:00

    And it’s, you know, my husband’s best friend, now is the basis for a band called Fishbone. That’s been around forever. And so we sit and we’ll talk to these people. And before, there’s no way I would have been just like, alright, I’ll be in the car. I’ll be over there. I’ll be you know, in the corner. I’ll be you know, I’ll be out of the way.

    Mali Torres 28:29

    And now it’s like I get in these conversations. And people will ask, you know, these people that have been around the world 20 times 30 times and, you know, performed in front of 1000s, hundreds of 1000s of people. And I finally can see them for who they are. And that’s regular people who are making music.

    Mali Torres 29:01

    And I have no, like, they’ll ask me, Hey, you want to go meet this? And this? And of course, let’s go. And before there was no way there was like, I’d make an excuse. Oh, I’m not feeling good today, you go ahead, go ahead, I’ll be over here. And now it’s a very freeing experience.

    Mali Torres 29:27

    I can enjoy life now. It’s when people say you’re reborn after a stroke. I get that. I totally that it feels like it. You know, because you don’t just get another chance. You see life a whole other way. And it’s you get to tell people about that and share your story. And it’s been good, it’s been good. And yeah, I have my deficits. And, you know, I started therapy yesterday because I’ve been having problems with my throat since the beginning.

    Mali Torres 30:23

    But with COVID, getting rehab is difficult. You know, they used to do it before COVID. It was the three types, it was physical, occupational, and speech therapy, all in the same day, you know, three hours of recovery every day, like it was in the hospital. And now it’s not, because you know, everybody has to be separated, and they don’t do group stuff anymore.

    Mali Torres 31:02

    They don’t you know. So now I’m just starting. Because I have this thing. It’s called a PVFM. It’s, it has to do with the vocal cords and everything. So you’ll notice sometimes it gets a little scratchy, But yeah, so that’s helping me. I get a little off track, sometimes.

    Bill Gasiamis 31:32

    It’s all relevant. I was curious. You had a hemorrhagic stroke? Did you have surgery to resolve that? How did it resolve?

    Intro 31:42

    If you’ve had a stroke, and you’re in recovery, you will know what a scary and confusing time it can be. You’re likely to have a lot of questions going through your mind. Like now long will it take to recover? Will I recover? What things should I avoid? In case I make matters worse, doctors will explain things. But, if you’ve never had a stroke before, you probably don’t know what questions to ask.

    Intro 32:06

    If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recovery after stroke.com where you can download a guide that will help you it’s called the seven questions to ask your doctor about your stroke.

    Intro 32:26

    These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website. Now, recoverafterstroke.com and download the guide. It’s free.

    Mali Torres 32:45

    Know thankfully, I did not need surgery. I did have a drainage tube. It was right in here. They had to shave my head completely because my hair was down to the middle of my back completely shaved. And yeah, I had a tube and they drained all the excess liquid. And it was fine. Thankfully I didn’t need any surgery. But yeah, it was a hemorrhagic stroke. And it was because of high blood pressure for too long.

    Bill Gasiamis 33:29

    Were you aware that you had high blood pressure?

    Mali Torres 33:33

    I had I wasn’t aware because our healthcare system is horrible. So getting health care wasn’t, you know, easy in our situation. And so I wasn’t always at the doctor, I just, you know, few motions here and there and headaches would go away. Not realizing it was my blood pressure causing it.

    Mali Torres 34:05

    At the time I was even thinking of going in for possibly like migraine, you know, like asking a doctor about migraines. And so had I maybe been going to the doctor for blood pressure or to check and to be checked out? Maybe they would have thought like they would have diagnosed it earlier. But no it took having to go in first.

    Bill Gasiamis 34:41

    So was it maybe your anxiety stopping you from going and getting help?

    Mali Torres 34:47

    Yeah, I think a little bit of the anxiety because I had anxiety and depression and it was you know, I take care of my kids first, take care of everybody before myself. The whole mom syndrome, you know, it’s the everybody else comes first. You know, I’ll take a few pills, and I’m good.

    Mali Torres 35:17

    Keep going, just keep going. And being Hispanic. It’s, yeah, yeah. Here it just is. It is. I remember listening to when you talked to you interviewed Joe Borges. Yeah. And he said the same thing. And I so like, I get that. I get it. Because it’s true.

    Common Cultural Treatment Practices

    Mali Torres 35:44

    It’s the, you know, our cultural joke is, when you’re sick, it’s go do the boil, which is chicken soup, Vicks Vapor Rub, Seven Up, You know, and like our blanket, and there’s a certain blanket that we have that has like animals on it and stuff. And everything will go away. And that’s all we did. And that’s, unfortunately, something that it’s widespread.

    Bill Gasiamis 36:23

    I relate to all of those things that you said, not the colorful blanket. But, it’s a great way as well, exactly, you know, make the kid a soup, and lie down, get the lemonade, because it’s easy to swallow or something. I don’t know why the lemonade. And, most of those things get solved like that.

    Bill Gasiamis 36:45

    And, you know, when you come from a community, like a village in the middle of Greece, or I’m not sure where your ancestors were from, or where your family’s from, but that sometimes is all they had. So that’s all they could do. So they did their best. And it worked, because most of the time, it wasn’t a near-death experience that people were having.

    Bill Gasiamis 37:12

    Most of the time, it was something that was going to pass anyway. But that has created this thing of, like, well, these are the resources that we had “They worked for us, they’ll work for you, too”. And they’re teaching that to the next generation because that’s just what happens.

    Bill Gasiamis 37:34

    But I can relate to what you’re saying. 100% and Joe was also somebody who had a stroke because of high blood pressure. And he was also, I think, not diagnosed or wasn’t aware of it or something like that.

    Mali Torres 37:57

    Yeah, cuz like he then said, the reason I, like so identified with him was because he would just push it back, you know, take some aspirin or something and get on with life. And that hit because I was like, that’s exactly how we were raised, you know, just take something for it. And keep going. Just, you know, put it in the back of your head.

    Bill Gasiamis 38:32

    Yeah. Joe’s episode 98 on my podcast, I think it was quite a while ago, but it’s available for anybody listening who might want to listen to that episode, just go to recoveryafterstroke.com/episodes and scroll down the list and you’ll find the episode that has his name on it, how high blood pressure resulted in stroke.

    Bill Gasiamis 38:55

    And yeah, I know what you’re saying. But also, I feel like a lot of it’s got to do with it’s not going to happen to me the whole it’s not going to happen to me written you know, it’s nothing serious. That’s happening to me, I can just take minor steps or action.

    Bill Gasiamis 39:18

    But how can you know, I mean, most of the things that we go through are minor. So it’s logical to relate this next thing that’s happening is also being minor. Rather than always thinking about the possibility that it’s far every one of them is going to be a near-death experience.

    Mali Torres 39:41

    And I should have been more concerned with my house because, you know, I had when I was 19 I had my gallbladder removed emergency surgery because it had gotten so inflamed. Then when I was almost 30, wait, let me see No, I was 32. And I had my second son through, an emergency C-section.

    Mali Torres 40:20

    Because he was two months early, and not that you could tell anymore, boys bigger than I am. He’s tall and thriving, thankfully. So you would think that that I would like, want to be at the doctor’s and take care of everything, and it just still had the WAM complex, you know, that. Just I got to take care of everybody, but I thought, I’m okay, I’m good. I’m good, you know.

    Mali Torres 40:53

    So it was never that, you know, they tell you in a plane crash that takes put your air first, and then your kid’s. My thought my first thought was always my kids, always my family, always my mom and my dad. And, you know, I lost my father, six and a half years ago to cancer, lung cancer.

    Mali Torres 41:20

    And I was his main caregiver, you know, I took him to his doctor’s appointments, saw all his scans, all the, you know, everything, helped him with his paperwork helped him with everything. And so again, I was his caregiver, and then, once he passed, I became my mother’s caregiver.

    Mali Torres 41:53

    My mom is now going through dementia, you know, and me and my husband are her caregivers. And, you know, so it’s always been that take care of everybody else, you know.

    Mali Torres 42:12

    And so just, life was almost like, Alright, you’re gonna stop. And if this is the only way we’re good at that you’ll sit and think about yourself then this is it pretty dramatic. A little bit a little bit, you know, but it’s almost like, because, you know, people told me you should take a break, take a vacation. And it’s it was just never in me. It was never in me to not take care of others.

    Bill Gasiamis 42:51

    And now what’s it like now? Because it sounds like you’ve had a shift. And you are putting yourself first and are you doing me time are you having even though you’re having to care for your mom? Are you doing me time?

    Mali Torres 43:05

    I am I actually will stop during the day I meditate. I am doing more yoga. I woke up extra early, so I could have coffee with no one else. Just sit and watch the sunrise. And you know, put it on the news later on. And just that quiet time. And you know, just like I don’t even think about what I have to do for the day. I just think about it right now. And I never did that before. I never knew how to do that.

    Bill Gasiamis 43:51

    Sounds like you’re present now to present, you’re mindful whereas before your mind is always on something outside. But now it’s like now.

    Mali Torres 44:05

    Yeah, yeah. I never understood how people could calm themselves so much. To do that, too. You know, you always heard about the people who did yoga and the people who meditated and were in the present moment. I didn’t know how I had no clue.

    Mali Torres 44:30

    Because I had my day, my week, my month my year planned. Okay, I was everybody’s planner. I was my family’s. We didn’t have a book. We had mom. So now it’s my calendar. I write in my calendar. I write I put stuff in my phone, but I was able to let my kids take their roles for themselves. So it worked for everybody. You know, my kids learned. I mean, they’ve always been quite helpful.

    Mali Torres 45:23

    Wonderful kids, amazing boys. strong, smart, inventive. But it was always Mom where is this? Mom where is that mom, you know, is this ready and now it’s, they do their laundry, and they’re cleaning and yard work and animal care and all that stuff that I did for them. They learned how to do it themselves.

    Mali Torres 45:51

    And it’s, so it’s been beneficial for them too, you know, and which I’m proud to see them. You know, my oldest is 19. And goes to college, and he knows where all his stuff is he knows he takes care of his calendar. And he cooks he cleans, he washes. And so he’s finally the young man that he needed to be, he should have been.

    Bill Gasiamis 46:26

    Yeah, but mom was still treating him like a child?

    Mali Torres 46:33

    I kind of was, I was you know, I put I’m not pushed, but I encouraged them before to do what they wanted, you know, learn, learn about the world you know, read, explore. But I had forgotten about the basics, you know because mom will take care of it. You know, because my mom was always the she’s from Mexico.

    Mali Torres 47:10

    And so she had that female role, you know, stereotypical. And, you know, I grew up watching her, and how to take care of the kids. And so I kind of had to let that go and just say, okay, you know what, they can do it. I’ve taught them enough, they can do it. And man, they stepped up. I mean, they’re just amazing, amazing. So that’s a great thing to see.

    Bill Gasiamis 47:44

    Of course because if there’s a reason not to do something, because somebody will do it for you, most people don’t matter how nice they are, they’ll go okay, you do it, no worries, it’s just normal, you know.

    Bill Gasiamis 47:55

    But then when you can’t do it, and then they have to step up, then they realize they can do and then it’s not a big deal. They do do it. Because they kind of forced me to do it, you know, my kids are 25 and 21 now, but I got to that point where I also realized that hey, you guys are leaving your laundry downstairs?

    Bill Gasiamis 48:18

    And you’re asking us to do it mostly my wife. And then you’re when it’s not done, you’re wondering where your clothes are. And how am I going to get dressed and all that kind of stuff? So I don’t know what your plans are for where you’re going to go on the weekend.

    Bill Gasiamis 48:36

    If you know what your plans are, why don’t you prepare for that, and don’t expect somebody else to prepare for it? But see, we got caught up in that. Because we just continued our behavior from when our kids and our little and they couldn’t do their washing.

    Bill Gasiamis 48:52

    And it’s like, oh, hang on a sec. We’ve been doing this for too long now it’s got to stop. Now you have to start doing it on your own because I care for you. When you’re a child, now you care for yourself, you’re gonna jump out of the nest and go and do your thing. So it’s funny how we get stuck in a routine and a process and then it can be 20 years and still we’re doing the same process in a certain routine.

    Mali Torres – Having Me Time


    Bill Gasiamis 49:22
    And, what you do is, instead of realizing that you can let that routine go, you just add extra stuff to that routine, and then you become the person who doesn’t have me time and calendar, your calendar should have days in there that say, Mali Day, that’s it. This is my day. Nobody else can do anything on this day that interferes with that. You need to just leave all of that out. Do whatever you want, but this is Mali Day I’m not doing anything else.

    Mali Torres 49:55

    And I have more days like that. I make myself not schedule stuff, but I’ll cook a meal just because I want to. And then I’m like, okay, you know what I’m going to go create because I make jewelry. And I make a lot of stuff just because I like creating little things and you know, my jewelry, I do my hair, it’s time for me to do this stuff I enjoy.

    Mali Torres 50:33

    You know, I sit and read a book. And it’s like, Alright, I’m out. I’m done for the day. I’m reading and they see a book in my hand, and they’re just like, oh, it’s mom’s time. You know, and I make my coffee, read my book, or my articles or my podcasts. And I’m like, Alright, putting my earbuds in. I’m done for the day, you know?

    Mali Torres 50:56

    And sometimes it’s all day. Sometimes it’s after my daily walk. I’ve made time more often for myself now. And I don’t feel any guilt for it. I don’t feel any like, oh, I’m not making time for anybody else. It doesn’t bother me anymore.

    Mali Torres 51:27

    It doesn’t. And, you know, I remind other people that it’s okay. But then I hear myself. I’m like, Alright, they did that for me for years, too. So it’s gonna take a little more, you know, because people always tell me, why didn’t you take time for yourself? And I didn’t know how. But finally, I do.

    Bill Gasiamis 51:51

    Yeah, it takes practice, like anything. And you have to be aware of it if you’re not aware of it. It’s, it’s not a fault of yours, it’s just that you haven’t gained awareness about it yet. And you haven’t made time to gain awareness about it, because you’re too busy doing stuff for everybody. And you are too busy being the person to go to and the calendar person and the caregiver and all this stuff.

    Bill Gasiamis 52:15

    And it’s like, okay, alright, enough, now we’ve become aware of it, now we can do something about it. And when we try it out, and you have that time to yourself, you get the benefit of it, and you go, wow, I want more of that, because it’s so good, you know, for me to do that, for myself, and to have time where I’m not thinking or doing or where I can be present where I can create, where I can do what I love.

    Bill Gasiamis 52:42

    And now, I want more of that. And yeah, it does take practice to give yourself space to do that. And not be and not blamed. And not blame the fact that you’re not doing it on other people by saying, Well, I have to do this for that person, or the people have to, I have to do that for them. And that’s, it’s not about them. It’s never been about them. You just use that excuse. And then when you stop using that excuse, things change.

    Mali Torres 53:17

    I was I was always like a natural people pleaser. You know, I’m the third in a family of four kids. You know, I have an older brother, an older sister, a younger brother. And I was always that, like, typical middle child kind of took care of like everybody was I felt better than me.

    Mali Torres 53:52

    And I needed to do stuff that was gonna get me that attention. And it was I turned into, like the second mom in our family. And so I cook and, did all that for everybody in you know, even as an adult, I still took care of all the holiday planning and the gift planning in place of my mom.

    Mali Torres 54:28

    And it was just a natural thing for me I didn’t realize how much of myself I had spread, you know, throughout the family, not only my family with my boys and my husband but my siblings. And you know, I it was I couldn’t help it. I just it was my way of life. You know now It was the first holiday season that just passed that I didn’t plan every little bit.

    Mali Torres 55:12

    Every get-together every menu, you know, we had Thanksgiving here in November. And one of my nephews cooked, he never cooked he brought anything. My sister-in-law made something and brought it and I was so happy.

    Mali Torres 55:38

    And you know, my older brother, they may and his wife they were cleaning and you know, they helped me set up and I was like, wow, I had to let everybody take their role. And it felt really good. It was an amazing thing that I had no guilt, and no shame in letting all that work get to work itself out. It was awesome. It’s been a great experience.

    Bill Gasiamis 56:16

    I can tell by the look on your face.

    Mali Torres 56:18

    Oh, yeah.

    Bill Gasiamis 56:19

    So your hair has grown back and you painted it red?

    Mali Torres 56:25

    Yeah, it’s pink. It’s magenta. I’ve done these colors since I was 19. I’ve had every color under the sun, except black. I’ve had every hair length shaved off completely down to the middle of my back.

    Starting Over After Sub-thalamic Hemorrhagic Stroke


    Mali Torres 56:50
    When I woke up in the hospital, I was rubbing my head and I was completely shaved. I was like, Oh, wow, my hair you guys shaved it off. And the nurse apologized. Oh, you know, they didn’t want to do just partial because it was gonna look weird.

    Mali Torres 57:10

    And now it’s gonna be able to grow back. And I’m like, and she apologized. She says I’m so sorry. Like, Oh, please, I get to start over. I’m happy. She was like, Are you serious? She’s like, how long was your hair? Down to the middle of my back? So like, I said, No, I could start over.

    Mali Torres 57:30

    I’ve always had weird hair. I’ve always had, you know, I’ve always been that person that’s walking down the street. And I’m short. So why I was intimidating? I have no idea. But people would see me and you know, plugs and all this stuff. And the way I dress and stuff people would be even in LA I always stood out.

    Bill Gasiamis 58:02

    Did you stand out in LA?

    Mali Torres 58:04

    Yes. If you can imagine that. And, yeah, so people would. It’s our I guess it’s always been kind of my shield. But now I’m really happy they shaved my head because I get to start over.

    Bill Gasiamis 58:21

    I love your looks, your look is cool. I wouldn’t be intimidated by somebody like you I would like, wow look at that somebody different who looks, is expressing themselves I would be so I’d be loving it. I mean, I might not walk to you I might not have come over and just said hey, I love your hair, or anything like that.

    Bill Gasiamis 58:45

    But I wouldn’t have been intimidated. I often don’t get intimidated by the things that intimidate other people. And, I found that strange that people would get intimidated because they see tattoos or whatever. Or a big guy or muscley guy and they have these ideas. You know, one muscley guy with tattoos means a bike or, like come on, man.

    Bill Gasiamis 59:10

    Like a little more what the word. Like a little more open-minded. I don’t know. Maybe I wasn’t always completely open-minded because I was taught to label people and to make them you know that they fit this stereotypical look, you know, but, man, that’s one of the things about a tattoo culture now is there’s so much tattoo culture now.

    Bill Gasiamis 59:24

    People are wearing tattoos all over the world all over the place. And from any background and from with muscles without muscles, you know, with hair, without hair, and it doesn’t matter.

    Bill Gasiamis 59:57

    It doesn’t make a difference some of the sweetest people that I know are covered in tattoos. And back in the day, those people would be made to feel. I don’t know what, like, you’d get intimidated by the sweetest person. Like, come on.

    Mali Torres 1:00:18

    It’s funny cuz I kind of grew up around that because my father before I was born, hung out with bikers, he built his motorcycle, you know, beautiful, and, but one too many accidents. And he was like, I’m done. I am done with it. And but, you know, he was in the army, had army tattoos and you know, stuff and, but a lot of his friends were you know, the mean bikers, the big beards, and, you know, tattoos.

    Mali Torres 1:01:04

    So I guess seeing that, it was kind of like, I knew these people, I knew that they’re regular people, and you know, so it was still. So I saw how people reacted to them. And I was like, but that guy’s like a teddy bear what are you talking about?

    Mali Torres 1:01:30

    You know, so it was a lot easier for me to accept people that look like that. And you know, but even in LA, even nowadays, a lot of people with tattoos still get discriminated against, you know, it’s less than when I was a child, but still more than it should be.

    Bill Gasiamis 1:01:51

    I did a couple of strange things with my hair. A few Christmases ago. And my hair is always sort of cut short like this, because it hurts when it’s longer it’s annoying.

    Bill Gasiamis 1:02:09

    So anyway, I cut it short. It’s easy to maintain and everything. And it had grown, say about two or three weeks worth of growth. So it was much thicker than what you can see now. And I’d like to have it nice and short. So I was at home, I couldn’t get to the hairdresser.

    Bill Gasiamis 1:02:28

    And I put the Clippers in and I started to cut it and I cut half of it off. And I made a nice line. And I left the other half without being cut. And I went to Christmas lunch like that. And everybody was freaking out because my family is not used to that stuff. They said what are you doing? What happened? I was like nothing, man, I just had a haircut and I left it like that, like, what’s wrong with that?

    Mali Torres 1:02:54

    Like? Why not?

    Bill Gasiamis 1:02:56

    So I did that. And everybody was freaking out. And one of the people that was there says he looked at me and did the whole Okay, well, there’s worse things in life than that. And he was he was trying to make himself feel better about my decision to leave my hair half cut, and half not cut.

    Bill Gasiamis 1:03:20

    And then the following year, I went with a mohawk. It was just straight down the middle, just not a straight line or anything, and wasn’t a good line was just terrible. And then the third year, I didn’t do anything. And my niece said to me, where’s the weird haircut this year?

    Mali Torres 1:03:37

    Right? She’s gotten used to it, that’s funny

    Bill Gasiamis 1:03:42

    Yeah, I have to go back and do it again. It does not matter what your hair looks like it doesn’t make a difference.

    People Worth Keeping In Your Life


    Mali Torres 1:03:53
    No it’s a freeing experience when you can do stuff like that. It just, you know, it forces people to like, want to know who you are, you know, when you look different. It takes them you know, some people just are unwilling to get beyond what you look like.

    Mali Torres 1:04:23

    But there are those good people. They’re like, well, this is just the outside. This is just what you’re wearing today. I want to know what’s inside. You know, and those are the people you want around. Those are the people that are worth keeping in your life because they’re not seeing just outside because we don’t look like this all the time.

    Mali Torres 1:04:43

    You know, there are times I’ll go outside and my hair’s not done and I don’t wear makeup anymore. I just don’t have the patience for it. But, you know, I grew up with a sister, She was the quote-unquote perfect sister. You know, her hair was always done. And her makeup was always flawless, and she matched everything, and she was that perfect woman, you know, and there was still that unhappiness.

    Mali Torres 1:05:25

    You know that, like, people wanted to know her only as that perfect person. So when she was a little off, are you okay? People would flip out because she wasn’t kept perfect. And it’s like, I don’t want to be like that. I want people to you know what, this is how I look right now. And then half an hour, I’ll be, you know, my hair is gonna be messy. And I’d rather be that way than have to keep up this thing.

    Bill Gasiamis 1:06:02

    It would be tiring to be the person who feels like you have to always present yourself in the same way. I know women who I know of women who would have their makeup on before their husbands woke up.

    Mali Torres 1:06:21

    Yes. My grandmother’s generation. That’s what they did. They woke up super early. And their husbands never, ever thought they would go to bed with makeup on. Get up when their husbands fell asleep, take it off, then get up before their husband said put it back on.

    Mali Torres 1:06:43

    And it’s like, why? I don’t get it, I don’t get it. So I never wanted to be like that. I never felt comfortable around people like that. I’m just like, I want to know who the person is just, and then, you know, knowing so many different types of people. Like I said before, musicians and artists and you know, it, no one I know looks the same.

    Mali Torres 1:07:13

    Even I look different than a lot of my friends you know, and I know designers and graphic designers and bakers and just, all of us look different. And we all bring something to the table. And it’s when you hang out with people like that, it just makes it feel better, makes life better.

    Mali Torres 1:07:39

    You know, and it reminds our kids because most of us have kids, it reminds our kids that as life goes on as time goes on, people around us that we don’t know, our learning. You know, they see the confidence that a lot of us have and like, even though I’ve dealt with anxiety I had for so long.

    Mali Torres 1:08:08

    The one thing I wasn’t anxious about was what I was wearing. Because it was mine it was my armor, you know, against everything. It was gonna keep the people that weren’t supposed to be my life away. You know? Yeah. So it’s one of the things that got my husband’s attention when we first saw each other. And our story is, we were very much meant to go together.

    Mali Torres 1:08:46

    We because we saw each other at a concert in LA one year, and we’ve been together 23 years now. And we saw each other at a concert. Well, he saw me because I used to have what I call a bull ring. So my septum was pierced pretty large. And had more facial piercings because you can see I had that done.

    Mali Torres 1:09:18

    And I used to have one up and down. Had my eyebrows done. And he saw he passed it at a venue in LA. And it was a band that for every woman that listened to them 100 guys listened to them. So it was unusual to see a woman who was there to enjoy the music.

    Bill Gasiamis 1:09:46

    It wasn’t where you went to go and find the women was it?

    Mali Torres 1:09:51

    Not really no, no, you know, if a woman was looking for a guy. Have your pick. You know but I went in with a friend of mine who I worked with. And so I had seen my husband, I had just come out of the pit after a few songs stood in the back. And Sama has been with a friend of his not too far away from us.

    Mali Torres 1:10:28

    And I was like, okay, you know, whatever. Well, he saw me in the hallway, later on during the show, and at that time of my life, it was like, I didn’t look at anyone, you know, it was like, I’m here for the music. And you’d like this, you know, don’t look at me, I’m not gonna look at you.

    Mali Torres 1:10:54

    Well six months later, I was going to Santa Barbara, which is three hours north of us to see the same band. And that’s when AOL had the chat rooms. So I was bragging hey I’m gonna go see them again. And so he happened to pop up, not knowing that it was him.

    Mali Torres 1:11:23

    And he instant messaged me. And so we started talking and of all the people that sent me messages, he stood out, and I was like, Alright, so we started talking, start talking. Start talking about the band, and music. And yeah, I saw them back then. Oh, yeah, I was at that show.

    Mali Torres 1:11:50

    And so we started talking, and we realized we’d already seen each other. Like, wait, no show, you know. And this was six months later. You know, it was just crazy. And so he met up a few weeks later. And that was it he’s been here ever since. I kept him you know?

    Bill Gasiamis 1:12:20

    He was the keeper.

    Mali Torres 1:12:22

    Yeah, definitely. And what’s funny is he wasn’t the type of guy I usually looked at. But getting to know each other. We talked for a long time online. So it was always chats and, you know, as before, texts and all that. So it was when he came over, it was like, I’d known him forever.

    Mali Torres 1:12:55

    And then when he moved in with me, he brought his music collection. And again, music is huge in our family. And it was seriously 95% The same as what I had already. So oh, man, it was insane how much we had in common. And yeah, I mean, still, we enjoy just finding new music, and new bands and you know, going and just we’ll go for drives. And in LA, you know, we go along the beach. And it’s all music. It’s all just, you know, okay, what are we putting on today?

    Bill Gasiamis 1:13:56

    Sounds like you appreciate it much more now.

    Mali Torres 1:13:59

    Much more. I mean, as much as I’ve always loved music. It’s just it’s so different now. It’s like you I don’t know. It’s kind of like, this wall was broken down. And just now I see not just the music but what it took to get there and the journey that person is seeking, I hear the words and I can appreciate so much more of it and enjoy just not music isn’t just a background thing.

    Mali Torres 1:14:14

    You know, it’s, I hear it. I hear the emotion the work put into it. The feeling It’s funny because some of the music that I listen to you wouldn’t think it would be emotional. Because it’s very hard. There’s there’s a band I listen to called Lamb of God. And they’re very metal, okay.

    Mali Torres 1:15:21

    And they have a song that’s called Walk with me in hell. The singer wrote it to his wife when she miscarried their child, one of their children. And that can be a very lonely experience, you know, and he wrote this for her. And that’s now mine and my husband’s song.

    Mali Torres 1:15:49

    And so when we listen, I tell people, This is our song, and they’re like, What are you talking about? No, you have to understand what is behind that. He was he was not gonna leave her alone. He was in it for life for everything. Good, bad, horrible. They were together.

    Mali Torres 1:16:23

    And he wanted to remind her. And I’m lucky enough to have a man that is there for me just the same. And sings me dumb songs every day and just makes up stupid things. And I love it. And I get to enjoy that every day. And it’s an amazing thing, what our partners can do for us.

    Bill Gasiamis 1:16:51

    It is. I’m lucky to like that. So, look, I have enjoyed our chat, getting to know you a little bit, and listening to your experience about anxiety going away because of a stroke. Thank you for reaching out and sharing that and letting me know.

    Mali Torres 1:17:12

    Thank you for having me. I appreciate it. I appreciate it.

    Bill Gasiamis 1:17:17

    Well, thanks for listening to another episode of the Recovery after Stroke podcast. I appreciate you doing so. And also, I appreciate everybody who watches on YouTube and leaves a comment a thumbs up. I do appreciate hearing from people. I love the feedback. I love commenting, I love having a conversation, and listening to what other people have to say.

    Bill Gasiamis 1:17:42

    So if you’re on YouTube watching this, please give the show a thumbs up follow subscribe, and hit the Notifications tab. If you’re listening on Spotify, Apple podcasts or Android gives us that give the show a five-star review. If you think it deserves it, leave a comment and let me know what you think.

    Bill Gasiamis 1:18:02

    I look forward to hearing from you. And mostly I appreciate you tuning in to every episode and letting me know that you love the show. Thanks so much. It’s a real pleasure to bring it to you and I look forward to seeing you in the next episode.

    Intro 1:18:19

    Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals’ opinions and treatment protocols disgusting any podcast or the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

    Intro 1:18:36

    All content on this website at any linked blog, podcast, or video material controlled by this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis the content is intended to complement your medical treatment and support healing.

    Intro 1:18:53

    It is not intended to be a substitute for professional medical advice and should not be relied on as health advice the information is general and may not be suitable for your personal injuries, circumstances or health objectives did not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or is a substitute for the advice of a health professional.

    Intro 1:19:14

    Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be, call triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.

    Intro 1:19:38

    Medical information changes constantly. While we aim to provide current quality information in our content. We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency, or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with the links we provide however third-party links from our web site followed at your own risk and we are not responsible for any information you find there

    The post How A Sub-thalamic Hemorrhagic Stroke Cured My Anxiety – Mali Torres appeared first on Recovery After Stroke.

    1 hr 22 min
  • Carotid Artery Dissection Recovery – Saran Chamberlain

    Saran Chamberlain was 37 when she experienced a right ischemic stroke, caused by a carotid artery dissection

    Socials: 

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    Highlights:

    01:09 Introduction – Saran Chamberlain

    04:01 Carotid Artery Dissection Recovery
    09:18 Parenting During Recovery
    13:13 Dealing With Emotions
    19:59 Reflection In Recovery
    24:56 Celebrate The Small Wins
    34:58 Reaching Out To Other Stroke Survivors
    43:41 Saran Chamberlain’s Identity
    51:15 Someone On The Inside
    57:37 All About Stroke

    Transcription

    Saran 0:01

    So how was it navigating the children when you first got home and then all of that stuff, I know you keenly probably wanted to get back to the children and be at home and resume your duties as normal. But it wasn’t normal. When you get back. What was that like?

    Saran 0:20

    It wasn’t. And the emotion and the, the fact that basically, there’s no filter was just so hard. And so my youngest, who’s now 12, I used to come in and she used to want to, you know, play with me and I would say I’m just exhausted, I cannot do it, and I would cry, and she would get so upset. And luckily my mother-in-law lived with us at the time. And so she would sort of help her through.

    Intro 0:55

    This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after a stroke.

    Introduction – Saran Chamberlain


    Saran 1:09
    Hello, and welcome to the Recovery after Stroke podcast. This is episode 183. And my guest today is Saran Chamberlain, who was a young mum with three children aged three, seven, and nine. When at age 38, she experienced a right ischemic carotid artery dissection.

    Bill Gasiamis 1:29

    Now nine years on, she has overcome a lot to go back to work and is heavily involved in the organization she founded called Young Enabled Stroke Survivors, South Australia, an organization that assists and empowers young stroke survivors aged 65 and under to live their lives to the best of their ability. Saran Chamberlain, welcome to the podcast.

    Saran 1:54

    Thank you for having me.

    Saran 1:56

    Thanks for being here. Appreciate it. It’s good to have a fellow Aussie on the podcast, it’s very rare actually, I think the majority of the people I interviewed tend to be in the United States. And Australia is a very, very distant second.

    Saran 2:20

    Well hopefully, we’re finally more, as we’re going along in social media.

    Saran 2:26

    Yeah, more people to help and support and who need your help and we need to make up communities. Tell me a little bit about what happened to you.

    Saran 2:33

    So nine years ago, I was 38. And I was fit and healthy. I have three kids that were three, seven, and nine at the time. And I didn’t have anything that sort of gave any warning. But in the morning, I went to tidy up my daughter’s bedroom. And I lost feeling in my left arm. And when I stood up, I couldn’t feel my left leg.

    Saran 3:00

    So yeah, it’s a bit of a shock. That was it. I was awake the whole time. I can remember everything. Luckily, my partner recognized that it was a stroke. So I was in hospital within about 15 minutes. They thought it was a migraine for probably a good 24 hours even though they tried the thrombolysis.

    Saran 3:23

    And it wasn’t until at the time there wasn’t a 24/7 stroke unit, but there is now in Adelaide. And yeah, I had a couple of CAT scans. And then by the time I had the MRI, they worked out that it was a clot. It was a right ischemic stroke.

    Saran 3:42

    So carotid artery dissection went into the sensory premotor and motor cortex of my hand and fingers, so I had to learn how to walk again. I had nothing in my hand for quite some time. Yeah, it’s been a bit of a journey.

    Carotid Artery Dissection Recovery


    Saran 4:01
    Especially with the little kids, my gosh. Going through the stroke and trying to raise the children. So how long were you out of action in the initial phases from that day that you noticed the numbness? How long were you out of action?

    Saran 4:19

    So I was severely stubborn from the very start. I’m thankful that I still had my general stubbornness and wits about me. They told me I’d be in hospital for about a month and rehab for three months. I was in the hospital for eight days and rehab for three weeks as an inpatient.

    Saran 4:42

    They couldn’t keep me in for much longer than that. But I suppose it took me probably a good three months to be able to walk without a stick. But my therapist from the very start was strict with me so I was banned from living outside of my bedroom when I first got to rehab.

    Saran 5:00

    So I got told off a lot because you know, she was sort of saying, You need quality movement. So she got rid of my quadstick and gave me a stick. And yeah. So gave me sort of limits. And I kept sort of breaking those. But yeah, so I was home after about a month but still doing rehab every day.

    Saran 5:26

    I got my license back in three months so that was good. I drive with a steering knob. And so I can still get myself out. But obviously, the biggest thing has been fatigue, sensory overload, and all the fun stuff that people just don’t see.

    Saran 5:47

    Is that still now? Or was that at the beginning when you first went home?

    Saran 5:52

    Yeah. So I remember going to a pain specialist probably about a year and a half afterward and saying, so this fatigue, you know, when am I getting rid of it? And he said, No, you have fatigue and I said, yeah, I know, but when am I getting rid of it? And he said, No, no, you have fatigue, and you will have it for the rest of your life.

    Saran 6:10

    And you just need to learn to deal with it. And he wasn’t a very good pain specialist. But he told me the truth in that respect. I think I’ve worked out now that one, my body always wins. And I just go with it. And I know that if I’m learning something new, or if I have meetings, then I know that that sort of takes it out of me a little bit more.

    Saran 6:38

    But generally, now I think I’ve got it fairly under control as to, you know, I still have rests during the day, probably every second day, at least. And that’s just, you know, that I set my alarm for 45 minutes, and just let myself stop and let my body rest. And I always wake up and kind of go, thinking of a break and getting a rest but the body’s fine. So then so is my head, so it’s good.

    Saran 7:10

    Yeah, I kind of have to do an automatic 45-minute or an hour kind of power rest. These days, it’s not sleeping or anything like that.

    Saran 7:25

    Yeah, you’re still sort of conscious and can hear everything. It’s just stop, isn’t it?

    Saran 7:30

    Yeah. So it’s like a reset, like laying down reset, getting everything kind of, okay again, and then getting up and going, Okay, I feel better, I can get on to the following tasks, new tasks, require a lot of concentration fatigue may still kind of frazzled me a little bit, but the majority of the fatigue has gone away in that I’ve found the limits and push them and push them and push them.

    Bill Gasiamis 8:01

    And now I know, there’s no more pushing them. They’re just, they’re just further down the day than they were, they used to be early. And for a long time, that’s kind of stretched out the amount of hours that I can go before the body says enough. And if I’ve had good sleep for several days in a row, then it’s even better, but I find that the lack of sleep will determine how much fatigue I’m gonna have to deal with. On any given day.

    Saran 8:34

    I’ve kind of worked out that it’s like this little friend that just comes along with you for the trip. And you’re never going to get rid of it. So you just have to kind of you know, it’s this to get along. And if you don’t get along with it, you know, there’s a problem because you never gonna separate. So yeah, it’s just kind of like, okay, this is what you want to do. Fair enough.

    Saran 8:59

    So how was it navigating the children when you first got home, and then all of that stuff? Because I know you keenly probably wanted to get back to the children and be at home and resume your duties as normal. But it wasn’t normal. When you get back. What was that? Like?

    Parenting During Recovery


    Saran 9:18
    It wasn’t, and the emotion and the fact that basically, there’s no filter was just so hard. And I still so my youngest, who’s now 12. I know I used to come in and she used to want to play with me and I would say I’m just I’m exhausted, I cannot do it. And I would cry. And she would get so upset.

    Saran 9:44

    And luckily my mother-in-law lived with us at the time. And so she would sort of help her through. We ended up sort of working out that the best way for us to play was after when I sleep and then she’d come in, I’d be sitting in my bed and she’d sort of play shops with me.

    Saran 10:03

    So as opposed to perhaps, you know, before where I would go out, and you know, to hang out with them, she would come in with me. I was able to at least still take them to school. I stopped cooking, although I never really cooked before. But, yeah, again, the kids had to just learn that there were times when, like, in the afternoon, they had to be quiet.

    Saran 10:32

    And they had to learn to basically, look after me, which was hard, you know, to sort of change things around, turn those tables. And I did worry that you know, the kids are gonna grow up saying, I didn’t have a family, you know, I didn’t have a childhood, because I had to look after my Mum.

    Saran 10:52

    But they are so empathetic. And so understanding and so I sort of say that they weren’t in that childhood, selfish bubble, they’re always aware of things. And I, you know, I say that our journey was a family journey because we were that close. And we had to do it all together to keep going.

    Saran 11:17

    I had teenagers at the time, and I like to think that they’re even worse than young children who actually, don’t get it. Because teenagers, I think choosing to not get it was frustrating coming home, because I’d come home between sort of 4:00 and 4:30 in the afternoon, and my job would be to prepare dinner and all that kind of stuff because my wife would be home at 6:30.

    Bill Gasiamis 11:44

    And the kids just wouldn’t play along to the I need your help. Pick this up, do that, you know, prepare dinner prepare the table, whatever, they just wouldn’t come along for the ride, they were teenagers, they were totally and utterly selfish, couldn’t care less about what I was going through, they’re boys. So it’s even harder to sort of try and bring them along, for the domestic side of it.

    Bill Gasiamis 12:14

    And maybe they also were never really taught to be domesticated by us early on, we didn’t kind of see a need for them to be involved at that level, they did help out from time to time with certain chores, but nothing major. So retraining them was impossible.

    Bill Gasiamis 12:32

    The bad habits were well and truly established by the time I needed to get them to come over to my site, and I would just freak out, I would lose it, I would yell and scream at them, all at the same time, when I’m trying to be better and nicer, and all those types of things.

    Bill Gasiamis 12:47

    But the frustration, the challenges of the fatigue, and the fact that I couldn’t do it alone, there was no way that I could do it alone just made me lose it and scream at them and get them to sort of shock them into doing something for me. And then I find myself, you know, hating myself and apologizing and feeling terrible, but it was such a vicious cycle.

    Saran Chamberlain Dealing With Emotions

    Saran 13:13

    So have you spoken to them since like and as to like, their understanding and memory of that time? Because that’s sort of what I did is, you know, do you remember, I mean, my kids now sort of go remember the stroke. And this is just sort of what we do now. And probably I was lucky that they were young. Yeah, but like do you remember, sort of fighting that at all?

    Saran 13:44

    I think they might have rolled it into my old, cranky shitty self, you know, and kind of thought this is just another level of it. Because I was, I was a good dad, I was a good guy, all that stuff, good husband, but I was so under-resourced in my life like I didn’t have resources to know how to manage different emotions and different frustrations.

    Bill Gasiamis 14:06

    And I was pretty stupid. Like I was pretty thick, unintelligent, in that way. Very much lacked emotional intelligence. And I feel like my wife was on a similar level as me. You know, we weren’t skilled at communicating our needs. And we were helping we help each other the way that we thought other people needed help rather than the way that they needed help.

    Bill Gasiamis 14:33

    So the kids kind of just got well this is just him being normal again, but a lot of what they were getting that was extra was that we’re getting the apologies which I never really knew how to do before or understood that I needed to do or so that we get a lot of apologies to say look, sorry for before and all that type of thing, and I will try to explain to them what my frustrations and challenges were We’re, but they didn’t get it.

    Bill Gasiamis 15:02

    And it’s, I understand that they didn’t get it. Because the other level of it is, how can you possibly understand what somebody is going through unless you’ve been through it? And you never want them to go through what we’ve been through for them to understand you totally and utterly.

    Bill Gasiamis 15:18

    So yeah, it was just one of the hardest things for me. And now that they’re older and they’re in their 20s. Our interactions are very different, you know, still, we play the parents and child kind of role, but we’re evolving into adult and adult roles, you know, and it’s taken ages, but there was no other way to go about it. That’s the only way.

    Saran 15:52

    I feel like, I mean, you know, I was working stupid hours and traveling so much. And I think that if it wasn’t for the stroke, you know, there’s lots of reflection, of course, after stroke after a trauma. I know, that I wouldn’t have had the relationship that I do with my kids now had the stroke not happened.

    Saran 16:13

    And so, while you know, they’re still kids and tease me and do their usual stuff we are such a close unit that yeah, I sometimes, you know, I mean, I came home the other day, from Melbourne, and I had some more feeling in my arm, and they’re also excited for me, and yet, they’re all still, you know, teasing me and being idiots. But, you know, stuff like that would not have happened pre-stroke at all. And I know that, and I’m grateful for stuff like that.

    Saran 16:53

    Yeah. Too serious, too busy, too stressed, too focused too whatever.

    Saran 17:00

    Yeah, yeah, there was no time in my life for my kids. They were, I would pass them, you know, I would work stupid hours. And even when we went on holiday, once my partner and I, David, wrote diaries. And so you know, it says, David’s written, I called our family, and Saran called her family, which is work, you know, and it was just, it just was. And yeah, I look at it now, I think, Wow, imagine, you know, like, I still sort of go, what would have been like, now, you know.

    Saran 17:41

    We would just be crude, stupid, just, you know, you’re learning, you’re still evolving, you’re still trying to get a sense of growth and wisdom out alive. And it just takes ages to get there.

    Bill Gasiamis 17:55

    And you kind of have to fumble your way through stroke with the resources you’ve managed to build up in your life. And, doesn’t matter what you’ve got built up, there are not enough resources to deal with stroke, you have to learn new ones the hard way, there’s no other way, right?

    Bill Gasiamis 18:12

    So I considered myself stupid. And for the stupid people out there, don’t worry about it. Like you’re going to evolve, you’re going to get better, you’re going to grow. And you’re going to learn new skills. And you’re going to look back and go, man, God, I was sick. But I’m better now. And I’ve taken the lessons and it’s enhanced my life in these ways. Does that make sense? Do you relate to that?

    Saran 18:40

    Yeah, absolutely. I mean, I think we’re pretty hard on ourselves. So I’m sure other people I’m sure, I’m sort of thinking I’m sure you weren’t stupid. I just think we just learned to cope with what was being thrown at us, which is usually a hell of a lot. And so you don’t have time to consider and try and, you know, think about, well, how other people might be better how our kids might better respond to things.

    Saran 19:07

    You know, we only do that afterward. Because basically, one we have a hell of a lot of time. But also, we’re suddenly learning all over again, how to actually, you know, deal with our own lives, let alone everyone else’s that’s connected with us.

    Saran 19:22

    And you have new levels of challenges that you need to and problems that you need to solve that you’ve never had to solve before. So the old way doesn’t work for me. The old way did not work. If I continue to go down that path. It would just end in disaster.

    Bill Gasiamis 19:39

    So it was like, okay, you’ve got to find a new way and the new way was better and then I was able to reflect and go, Oh my God, if I was doing that earlier, that would have been so much better, but I wasn’t. I’ll start doing it now, and yeah, things kind of improved, and my level of intelligence at every level kind of improved.

    Reflection In Recovery

    Bill Gasiamis 19:59

    When I realized that the old technique of managing my household and my relationships and my children and all that kind of stuff was just not going to work. There was just no way. So it was up to me to step up and deal with stroke, evolve, and learn and discover new ways.

    Saran 20:25

    It’s Yeah, it’s amazing the reflections and things that we learned like again, I think that you know in some ways, it’s really difficult that we can still see our life pre-stroke, because we’re comparing, you know, we’re comparing that, but then if we just look at, you know, what we’ve done post-stroke, and how we have actually sort of evolved and how we have ridden the wave.

    Saran 20:57

    Again, if we look at it, you know at each other from our, you know, from each other’s perspective, you know, we realize how far that person has come. And I think sometimes we need to give ourselves a bit more credit for that. Because again, we’re still like, we still could be doing better. You know, but that’s, I suppose that’s life as well, isn’t it?

    Saran 21:19

    Yeah. And I think reflection is really important in recovery because you can focus on the wins, rather than on all the negatives. After all, there’s so many in stroke recovery, there’s, you know, there could be more negatives than positives if you spent enough time on it.

    Bill Gasiamis 21:35

    But the reality is, the positives are what sort of fill your wings and lift you a bit further and keep you going. And, and that offers more hope. And then with hope, changes perspective and focus and all that kind of stuff. And you go after things that you may have been told were not possible way back whenever and, that kind of gets you to the other side.

    Bill Gasiamis 21:59

    I didn’t focus on the negatives, and I haven’t, in life, I tended to get caught up with things like if I didn’t know the path forward, I might never take any steps toward the destination. So for example, when I was early, in my years, I wanted to in my 20s, I wanted to start my own business and work for myself, but I didn’t know what the first step was.

    Bill Gasiamis 22:32

    So then, it seemed like procrastination. But I never did anything for eight years until someone taught me or I learned somewhere what the first step was. And then I made the first step. And then the other steps revealed themselves. So that was, that’s kind of it and I never focused on the negatives, I just focused on what I didn’t know, I don’t know these things, therefore, I’m not doing anything.

    Bill Gasiamis 23:01

    Whereas in stroke recovery, I know some people focus on, well, my leg doesn’t work, my arm doesn’t work, or this doesn’t work. And then they get stuck there. Whereas I was always focusing on Okay, well, the left side of my body is not working well, I’ll just drag myself with the right side, you know.

    Bill Gasiamis 23:17

    Or you were kind of always looking for the solution to the challenge at the time. And that was what moved me forward. And I’m always a half-glass half half-full kind of guy. So I, I hear when people say they focused, you know, they got sort of stuck in cycles of negativity and all that kind of stuff. I just don’t know how they did it, because I didn’t do it. But I can understand why they did it.

    Saran 23:44

    Yeah. I mean, I had some tough times and what I did learn was just like, with, I suppose the whole journey was, you know, early on, I fought it because I think no, I don’t want to feel bad. Like, you know, I’m not feeling this way. I’m just gonna put it away. And of course, all it did was exhaust me. But also, it was still there.

    Saran 24:08

    Once I’d worked out that, okay, I’m gonna go with this and I’m going to feel like crap when I feel it. And I knew that I was going to come out of it sort of the other side with it looking brighter with me with more energy because I hadn’t fought it.

    Saran 24:25

    And then I can actually go right, right, dealt with that now you can sit back there, and I’m still aiming for so I found that once I did that, and it probably took a couple of years, few years four years and but yeah, I do that I think I sort of doing that with most things now. The good and the bad. Just going with it, but yeah, still make sure that I celebrate the small wins because you know that’s what keeps you moving.

    Celebrate The Small Wins – Saran Chamberlain


    Saran 24:57
    Yeah, and they all add up into a big meaning you just can’t see it yet it hasn’t yet happened. So you know those little wins 1 2 3. And then however many there are, by the time you get to that big win, where you can look back and go, Oh, my gosh, this is how far I’ve come? Wow, I didn’t realize it was all those little steps.

    Bill Gasiamis 25:16

    And it’s, for me it was a bit counterintuitive is not focused on the massive goal, which was, for example, walking, it was just focused on the little goals, that I kind of knew were part of the massive goal somewhere down the track. And then I would eventually get there, and therefore that would be fine.

    Bill Gasiamis 25:35

    The other thing I found was that timelines and deadlines on when things would happen weren’t going to be useful. So what was that like for you? Did you kind of have these expectations of when you’d be reaching certain milestones?

    Saran 25:49

    That one-year mark? Hell, because you’ve got to the one year and kind of went, wait, I’m not done. Shit, I go hang on a minute, what? Like, you know, and I remember, I remember, it’s probably the one time I rang Stroke Foundation, I spoke with Simone she was amazing.

    Saran 26:10

    And basically, I said, you know, I was able to walk fairly quickly, my arms there’s nothing to my arm, but I can still move around. But I thought I’d be better by now. And, yeah, I’ve learned it’s a journey. And as long as I’m still moving forward, then I’ll just keep going, I don’t set timelines anymore. I don’t set recovery goals, you know, I set you know, I hope to be able to walk further.

    Saran 26:42

    You know, not I’m going to walk, I don’t know, five K’s without falling over. I want to have less foot drop, I want to be able to, you know, do those kinds of things to set recovery goals means that you know, you’re going to get to an end goal. And, you know, and that Yeah, I think that takes a little bit of time, doesn’t it?

    Saran 27:05

    Because I think we always have seen, you know, we’ve always looked at goals. But when it comes to stroke, because it’s your life, it’s you know, it’s not going to ever be better, even if everything, even my hand sort of got better. I don’t think you know, fatigue and sensory overload wouldn’t be gone. So it still, you know, it’s there. It’s just how to deal with things you deal with in your life. easier, better.

    Saran 27:36

    Yeah. Goals. For me, like I said, they were kind of big, but at a distance, they weren’t really about me achieving them right now. And they just took the pressure off, I think, and therefore, if I didn’t put a timeline on it, or also took the pressure off, it was about getting good at what I was doing then, rather than focusing on what the big far distant end goal was going to be.

    Bill Gasiamis 28:04

    So I can relate to that. I know, a few people that I’ve supported and coached through stroke recovery, you know, will tell me, but it’s been 12 months, and I should be better by now. I’m like, where did you get that information from? You know, who gave you that 12 months is early on in your recovery?

    Bill Gasiamis 28:22

    It’s early days, you know, it’s probably just like, if, if a broken toe is the day you broke it is when the beginning of 12 months is pretty much the day you had the stroke, it’s the first moment you still need time to get beyond that. And it’s different from a broken toe. It doesn’t have a doctor’s you know, six weeks, three weeks, you come back and you take this off for weeks, we check it, five weeks we do that and what six weeks you’re back at wherever you were doing whatever you’re doing.

    Bill Gasiamis 28:58

    It just doesn’t have that. And I know if you can get people to stop focusing on the timeline and anniversary and all that kind of stuff, then it gets better. Speaking of anniversaries Did you ever focus on Did you ever get to your anniversaries and be concerned about?

    Bill Gasiamis 29:19

    I don’t know having another stroke. I hear some people who have had a terrible time on the first and second anniversary. It either brings back the trauma or it makes them think that they’re about to have another one or they’re worried that they might have one.

    Saran 29:36

    No, mainly because our family is fairly good humor out on my anniversary and my kids and David used to go to the hospital, although it’s now been demolished as a new one. And then they tried to do that with the rehab hospital and then that got that was replaced anyway, but that would go to the room. Each year and sort of say, oh, you know, my mum had a stroke X amount of years ago, she’s okay.

    Saran 30:04

    Because they’d have to make sure that initially, it was like Lily, she’s fine. But we come here to celebrate that, you know, this place he’ll do and that kind of thing. So it was a bit of a celebration.

    Saran 30:16

    I was told that there was no real cause of my stroke and that, and that was a good thing because it probably wouldn’t happen again. So I had no pre-existing conditions or anything like that. So I didn’t really have too much of a fear around that time, or at all, maybe if I had a bit of a headache, but again, I didn’t even have a headache when I had the stroke. So yeah.

    Saran 30:40

    Yeah, just one of those things.

    Saran 30:43

    One of those things.

    Saran 30:44

    That’s interesting. So you’re pretty active in the community. In South Australia, specifically, the organization that you’re a part of is the Young Enabled Stroke Survivors of South Australia essay. And you’re involved with a couple of other people who are pretty awesome.

    Bill Gasiamis 31:07

    Peter Dempsey is somebody who I interviewed way back in episode 33. And Peter was talking about recovery from aphasia and childhood stroke. So I think when I interviewed him, he was, well it wasn’t that long ago. So you know, he’s an older bloke, but not that old. But he had a stroke when he was a young child. Tell me a little bit about it, Yes SA.

    Intro 31:38

    If you’ve had a stroke, and you’re in recovery, you will know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like, how long will it take to recover? Will I recover? What things should I avoid? In case I make matters worse, doctors will explain things that, you’ve never had a stroke before, and you probably don’t know what questions to ask.

    Intro 32:03

    If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recovery after stroke.com where you can download a guide that will help you it’s called Seven Questions to Ask Your Doctor about your Stroke.

    Intro 32:22

    These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, but they’ll also help you take a more active role in your recovery, head to the website now, recoveryafterstroke.com and download the guide. It’s free.

    Saran 32:42

    So it started with Susan Hillier, and I, just because we were talking about the fact that, you know, I wanted to get back to the gym, get back to Pilates and that kind of thing. And that, you know, I was never going to put myself in a position where, you know, I would walk in and people do anyone have any injuries, and you know, you put your hand up.

    Saran 33:06

    And so I’ll say I had a stroke, and they’re like, oh my god, I’m so sorry. And, you know, and it’s bad enough that people will stare at you anyway, let alone in a room that you’re then in with them for the next hour. And so we wanted to sort of look at, you know, arming people who had brain injuries, with the, you know, with the confidence to be able to go into any class and to know things that they were and weren’t able to do.

    Saran 33:18

    So I met Peter at one of the stroke forums and his right arm doesn’t work, so it’s kind of funny when we sort of hug each other because kind of an awkward, you know, lopsided kind of hug. And, okay, of course, because his stroke was on the other side, his was aphasia, mine was physical. So we sort of said, Hey, let’s, you know, let’s team up because we’re, you know, sort of one person ideally, or, you know, one stroke, put together kind of thing.

    Saran 34:05

    And, yeah, and so, South Australia is quite small compared to Melbourne, Sydney, you know, we wanted to sort of try and build that network, and we have a lot of health professionals that are keen on being able to, you know, integrate sort of stroke survivors into the community, especially young stroke survivors.

    Saran 34:27

    Because basically, with have so much life to live. Yeah, so that’s sort of that’s what Yes SA is and is trying to do. We’re trying to get funding but we’re also sort of being able to deal with stroke, which has now been sort of taken over by a hospital research group. And so sort of building up the raising the awareness of young stroke that way, right?

    Saran 34:53

    Okay. So what kind of events do you guys do you guys run events or how does that work?

    Saran Chamberlain Reaching Out To Other Stroke Survivors

    Saran 34:58

    So we don’t at the moment. I want to be honest, I’m doing a lot of ones finding, you know, stroke survivors. There’s a lot of us, but I think what it is that we’re also sitting and I did the same for the first four years sit on the outside and kind of just wait for something that we kind of go, Yeah, okay, we’re comfortable to put ourselves in that vulnerable position.

    Saran 35:22

    So, I’ve met a lot of people working with stroke foundations, young stroke projects, but through researchers through clinicians in South Australia, because I’ve basically been around, and I’ve always sort of tried to give every sort of therapy ago, I’m known fairly well.

    Saran 35:40

    So people will sort of say, look, I’ve got a younger stroke survivor, who, you know, really nice to talk to someone. So I sort of start-up communication that way. And so we keep in contact and give them some opportunities to catch up. You know, there’s, we had like a group of eight that are all active on Messenger.

    Saran 36:01

    But then when we want to sort of catch up, there’s only two of us. You know, it just sort of happens. But yeah, we just sort of try. I’m just sort of trying to keep everyone up to date. And when people want to step in and are ready to, you know, actually get involved. Like it took me ages, I didn’t want to see myself as disabled.

    Saran 36:24

    I didn’t want to have anything to do with other stroke survivors took me five years, before I even got involved with Genius. And yeah, because I wanted nothing to do with people. So I get where people are at. And I sort of look at it and think, Well, I’m here, you know, when you want to get involved. I’m here.

    Saran 36:48

    So you were in denial?

    Saran 36:51

    Oh, yeah in denial. And so I was just moving forward. But I was not. I didn’t see myself as disabled. Because I kept working. Stupidly, I went back to work fairly quickly. And just was driving myself into the ground, and then starting other things, but just kept going. Because that identity sort of crisis, I suppose was there. Who am I post-stroke? But yeah, it was a denial, but it was still a positive denial. Like I don’t think I lost who I was but I didn’t realize that I was a stroke survivor.

    Saran 37:37

    Yeah. Positive. What’s positive about that? I suppose what’s positive about that is kind of you’ve faced it and dealt with it when the time was right. When you could face it and deal with it. That’s a positive. I mean, yeah, I like the way you spun it, right? Because usually, people see that as a negative, or they, think that it’s a negative they ah, they’re in denial, or they haven’t dealt with or they need to deal with it.

    Bill Gasiamis 38:05

    And people often sometimes get pushed to deal with stuff like that. And I can understand if you’re not ready to deal with it already because it takes them time and energy. And it requires you to go to new levels of learning. And that takes effort. And if that’s happening in the very early days for some people while they’re trying to raise their children, I can see how we could be interrupting their lives.

    Bill Gasiamis 38:31

    Because I had a similar very basic version of that very similar experience in that I didn’t want to go to rehabilitation anymore because it was taking up so much time in my life. And that meant that I couldn’t get back to the rest of my life. Three days a week, one hour a day wasn’t enough, but it took me an hour to get there an hour to do this session an hour to get home.

    Bill Gasiamis 39:00

    And it starts in the middle of the day or you know, 10 o’clock or whatever. And there’s your whole day gone, and you can’t go and do anything else with it. And at the end, after about six or seven months, I said to the guys, look, you guys are sacked. I’m not. I’m not coming back. I don’t need you anymore.

    Bill Gasiamis 39:18

    I’m going to take responsibility for my recovery from here on and I’m going to do the way that I want to. Not that they haven’t been supportive or helpful. It’s just that it’s inconvenient. And that was so difficult for me to have to deal with. And at that time, I couldn’t deal with the psychological and emotional impact of stroke.

    Bill Gasiamis 39:38

    I couldn’t go to my counselor I couldn’t go to wherever else I needed to go. I couldn’t read study or listen to a podcast. It was consumed by this effort to get to these rehabilitation sessions. And I couldn’t make it it was very difficult to make time for Not to make time to remember appointments, even though I had them in my calendar.

    Bill Gasiamis 40:07

    Even though I had set reminders, it wouldn’t occur to me when I was getting the reminders that that was a reminder about an appointment that was coming up in an hour or two, I was playing this weird game of setting reminders and reading the reminders, and not knowing that I needed to then take action on that reminder, and go and do something.

    Bill Gasiamis 40:28

    So I get what you’re saying about trying to or putting off dealing with the stroke. For five years, the question I have for you is, once you dealt with it, once you said, Okay, I’m going to take a step to accept this, then what changed for the positive in your life, I imagine that shifted things a lot.

    Saran 40:56

    So where you’re saying that you didn’t want to do therapy, what’s funny, as I’m thinking about it is that therapy just became my everyday life, like I’ve been doing therapy, at least three times a week for the last nine years. And I’ve never thought of, I mean, like I’ve had breaks, because, you know, you sort of need to mix it up and that kind of thing.

    Saran 41:18

    But my therapy was always that to try and sort of strengthen myself, you know, so that I was able-bodied, and I was able to sort of get around with my kids and, and make sure that I could, you know, stay up and upright, literally, in most cases, I think when I had faced it. I think because I still, as I said, you know, it was still positive and moving forward kind of momentum.

    Saran 41:48

    It just probably put pieces into place a bit more. So there were sort of just disjointed bits and pieces, I was just still just chugging along and, you know, whereas when I sort of went, right, well hang on, I’m never going to be able to run again, which is probably not, you know, wasn’t a goal.

    Saran 42:12

    But, you know, I’m never gonna have my hand back again. You know, I’m, I’m potentially going to always be one-handed. And, you know, and this is this is it. It wasn’t it was just, I think it was an acceptance of okay. Alright, then. So I’ve been doing all the, you know, I’ve been talking the talk, not walking the walk.

    Saran 42:45

    So I’ve been saying, Yeah, I’ll be fine. I’ll be fine. And then actually, Ah, wait, now I am feeling that, you know, I’m feeling okay. I think, certainly, from talking to other people, I think it was probably a little bit different because mine was more in a positive aspect.

    Saran 43:10

    And that denial was a small part of me and who I become, I suppose what that acceptance had become, was that I wanted to be able to my idea of raising awareness and supporting became, I started trying to connect with other people to say, Hey, it’s okay. You know, to try and make people’s journeys shorter and easier than mine was.

    Saran Chamberlain’s Identity

    Saran 43:41

    That’s pretty good. Was it also an identity issue? So say, I’ll throw it out here, hypothetically. And maybe you relate it to this or you don’t. Was it? To be a mum and raise my children? I can’t be a stroke survivor. And then was it maybe a shift towards I’m a mum, but I can also be a stroke survivor and a mum?

    Bill Gasiamis 44:07

    And, therefore your identity is not lost or parked or made or altered? It’s just given an additional bit of information that you can add to it rather than it taking away from your identity. Does that make sense?

    Saran 44:27

    Yeah, yep. My identity for me was working. I didn’t have anything if I didn’t work. And so it was when I sort of found myself out of work that I realized that I was still something. You know, when I found myself out of work, I thought, right, that’s great. Nothing. Now what, but nothing changed.

    Saran 44:51

    You know, nothing changed apart from I had less stress about the expectations that I had at work. And so as soon like, I can still be this and I can probably be way better at being a mum, like, or being more present and doing things because you know, my identity of trying to do this work, which was always trying to, I don’t know, not only justify in myself but also justify my work with other people.

    Saran 45:24

    Suddenly, that wasn’t there anymore. So it was the case of why I can be a mum, and I can be a stroke survivor and so that’s where I kind of went, you know what I want to be in the stroke community, I want to be able to, you know, help people, I want to raise awareness, I want to be involved in research because far out like, I have this denial of being involved in it. But there’s so much here, there’s so much.

    Bill Gasiamis 45:55

    Work, work to be done. That’s kind of how I landed in the podcast, it was a bit selfish at the beginning, it was about me, was really about meeting other people. But it was trying to find people who understood me. And then I became embedded. And once you’re embedded, it’s hard to get out.

    Bill Gasiamis 46:16

    And not that I want to get out. But it’s a topic I’m becoming an expert on and I can, you know, talk about stroke, from the perspective of somebody who has spoken to 180 people that have had a stroke and interviewed them, you know, and that gives you a lot of insight.

    Bill Gasiamis 46:33

    It allows me to take a conversation and guide it towards making people aware of things that they weren’t aware of before, especially around identity and goal setting, and around all those things that are related, to those shifts that are thrust upon us, when we have a stroke, you know, it’s not our choice.

    Bill Gasiamis 46:55

    Things just change, and then we kind of have to sink or swim. So I think, for me, is the work there. And what I love about my work is it’s far-reaching. If it was on one, it’s certainly there’s an amount of there’s an amount of satisfaction to that, of course, absolutely right.

    Bill Gasiamis 47:19

    But because I can have them on-one conversation with you, and then I know it goes out to the podcast world, then I know that I’m doing one hour’s worth of work here, but it’s gaining 1000s of hours, potentially, of traction out there. And I could never get in front of 1000s and 1000s of people at any one time, I can’t do that I can only do that one-on-one most of the time unless I’m speaking to a crowd.

    Bill Gasiamis 47:48

    But even then most of them are not strike survivors. If I go to an event where I’m presenting, they aren’t all stroke survivors. And even that’s good, but that the message doesn’t filter through to the stroke survivors from the non-stroke survivors that don’t have the know-how the knowledge to, you know, filter the message through that I’m trying to send, hopefully, it applies to their life.

    Bill Gasiamis 48:12

    And one day Touchwood if they ever become unwell with stroke or something else, they’ll be able to remember the conversation and help hopefully it guide them. But that the work to be done is immense. And one of my mates kind of gave me that insight. So where do you want to do your work and present?

    Bill Gasiamis 48:34

    And who do you want to coach and speak to? And I was like, I live in Preston in Melbourne, Victoria, you know, and it’s like, that’ll be good. Preston won’t be good. It goes well, like there’s more to the world than just Preston Victoria, you know that? Yeah. I’m like, yeah, and now what’s your point? Wouldn’t it be great to just work with people anywhere and everywhere?

    Bill Gasiamis 48:54

    How would you find them? How would you reach them? And that’s when the idea came, oh okay maybe I could do something broader than that. How would I do that? And then the podcast was the only real solution to that. And then whoever wants to do it can reach out to me and work with me directly if that’s what they choose to do, rather than me knocking on doors, like a Sunday Bible basher. All I had to do was put it out there. And then if people want to come they come to me.

    Saran 49:29

    And I feel as though people are slowly learning the real value of the lived experience. voiced, and you know, and we can see that in Stroke Foundation, with the young stroke project and when I was employed as the engagement project coordinator, because they couldn’t, you know, that nonbiased, conversation that we can easily have and we don’t if I say I’m fatigued, you you say, Oh, I have an app during the day too, it’s not the same thing.

    Saran 50:03

    You know or sensory overload, or you know, sometimes my ears ring as well, that is not the same. You know, there’s that kind of thing that really, it’s something that, again, we would not want anyone to have at all, if we could have the choice, but, you know, it’s knowledge.

    Saran 50:25

    And it’s something that people just don’t get. And so that’s why we can add that value if we speak with either researchers or clinicians or anything like that. And that’s sort of what I’m bashing through as well, which is great. Yeah, and because in some ways I kind of went, I’m a bit of a smartass, I kind of go it’s not like they can argue with me that they can’t go, Hey, that’s not how you feel? Because kind of Oh, actually, yeah, it is.

    Saran 50:55

    Yeah, there, there is a little bit of the blind spots that people will have even people who’ve worked with stroke survivors a long time, and that’s okay, I get it. Now, I was frustrated, and annoyed about it. Early on, but I understand why it is like that. And there’s no issue now.

    Someone On The Inside

    Bill Gasiamis 51:15

    But that’s why I get excited. Which is weird. When I find a doctor who’s had a stroke. I don’t want them to have had a stroke, I don’t want it but the one I was like, I, okay, a medical person who’s had a stroke. Now, we’re kind of starting to break new territory, and we’re starting to get a person who’s on the inside, who knows what it’s like to be us, to go through what we went through.

    Bill Gasiamis 51:46

    And that informs far better outcomes and conversations with the people that they work with that matter. I’ve interviewed several people who have been doctors, psychologists, that kind of stuff who have had a stroke, and therefore have been able to just have a better what’s the word like a better impact on their colleagues about how to deal with somebody in that space? It’s that lived experience from a colleague of theirs.

    Bill Gasiamis 52:22

    And then that just takes things to a different level. You know, imagine being a stroke survivor, who’s taught psychologists because you’re a psychologist, and you know, the language and how they speak, who are treating stroke survivors in hospital as part of their stay or in as part of their rehabilitation? If they’re struggling psychologically, I mean, that would be a far richer kind of recovery or way to experience psychology, I suppose.

    Saran 52:59

    Yes, yeah. Again, it’s not something that we would wish on anyone, but it’s, it’s a hell of a lot of value when we do find someone, isn’t it?

    Saran 53:08

    Yeah. And whether they’re an occupational therapist, a doctor, or a GP doesn’t matter who. And that’s why I think Jill Bolte Taylor, is someone who gets a lot of air time because she’s written amazing books and took her brain onto a stage once.

    Bill Gasiamis 53:29

    But also because she was a neuroscientist studying, you know, brain conditions. And then she had her own experience. And then she was able to tell that story from a scientist’s perspective, as well as a stroke survivor’s perspective is just next level and such a unique gift to be able to have and share, even though you wouldn’t want them to ever have a

    Saran 53:54

    Yeah, that’s right. Again, making the most and that sort of, not that I’m Jill Bolte Taylor’s level at all, but I’m making the most of what I’ve got. And I’ve made the most of the experience that I’ve had. And you know, and I think that, yeah, I feel as though if I can connect to people and help people in any certain way and not from a selfish level, just like, I just wish that someone had maybe spoken to me when I was there, that would be great.

    Saran 54:31

    And 10 years ago, it was so different. It’s not that long, but it was so different. We didn’t have podcasts. We didn’t have YouTube, we didn’t have any of that stuff where it’s there’s nothing, almost nothing where things were proliferating to this level. And yeah, it was kind of like a dead zone of information.

    Bill Gasiamis 54:48

    And if you didn’t get it at the hospital, you might not have got it at all. And if you didn’t Fluke upon the Stroke Foundation, which I did, you wouldn’t have got anything. I was in hospice Close for, you know, more than three years and in and outs, right? Yeah. And I didn’t know that my hemorrhage was regarded as a stroke.

    Bill Gasiamis 55:13

    I didn’t know that I, I learned that very late on in that journey. And then when I find a letter, I was like, Ah, crap. That’s why I can relate to other people who have had a stroke because it’s a bloody stroke. It just is a blade. It’s not the other kind. And it’s like, right, okay, now I know what’s happened to me, I get it. Nobody said it, nobody said that.

    Bill Gasiamis 55:41

    They said you had an AVM, which is worse than blood in your brain. They also said to me, the AVM is technically a tumor. So the bleed was within the tumor, which is within your brain. So that gave me all this technical jargon and a battle complicated. And that’s why I never got dealt with by a stroke department.

    Bill Gasiamis 55:59

    That’s why I never was given any information about the Stroke Foundation because that exact word in my diagnosis wasn’t part of my diagnosis. Therefore, they never sort of mentioned that. It was just nuts. Certainly 10 years ago, but it was like another time in the world.

    Bill Gasiamis 56:20

    It was like a completely different time in the world was nuts. And I think that’s kind of what spurred me on to, to meet other people and to find other people was like, what else? Do I need to know that? I don’t know. That they’re not telling me? That’s gonna like make my life easier?

    Saran 56:38

    Yeah. I started. And only just recently, I must admit, I’m still learning. Going on to Instagram, I’ve got I’ve got a baby scram. They’re just sort of sharing my stories. And it’s weird. Like, you know, again, I was not there. I mean, there was no real social media when I had the stroke.

    Saran 56:58

    But the amount of people that have seen it now it’s just like, Oh, my God, there’s so many people out there who had strokes on Instagram. And you think, Wow, that’s fantastic. Like, why don’t you know, and I sort of dwell on it. But if you do go find out, that would have been so good way back then.

    Saran 57:16

    But, yeah. And the amount of people that want that engagement straight up, you know, because, this is, this is how we work. This is how we communicate, we don’t need to have, you know, we don’t need a phone, we don’t need, you know, we don’t need a telephone book, where, you know, it’s all there at our fingertips. And I think that that’s amazing.

    All About Stroke

    Saran 57:37

    I’ve got about 4800 followers on Instagram, they’re all stroke survivors. When we interact on Instagram, it’s a proper discussion about stroke. It’s not about what he voted for or what you believe in, or any of that bullshit. So that’s great. Yeah. You know, it’s sharing the podcast, and then getting people to interact and all that type of stuff. And then the podcast gets downloaded about 4000 times a month from all over the world.

    Bill Gasiamis 58:13

    You know, so you know, it’s a proper amount of, what’s the word lack of impact, or I don’t know what the word is, and then every day or every second day, or, you know, somebody contacts me to say something about someone that’s had a stroke, or they’ve had a stroke or a podcast, they listen to, you know, or a caregiver or whatever.

    Bill Gasiamis 58:42

    All the time. And it’s like, okay, well, how good is that? And, you know, they can be on the other side of the planet, and they can get to us immediately, and within moments, and we can respond immediately, and maybe help ease their suffering or their anxiety.

    Saran 58:59

    Just make them feel heard, that’s less alone. That’s the biggest thing is that you know, because you, do you, especially the way that, you know, maybe some medicos can sort of tell me about your stroke or not to have a stroke, as the case might be with you. You know, yeah, you sort of think, hang on.

    Saran 59:22

    This is weird. So does this mean that I’m the only one around but being able to speak to other people and see other people’s stories, I think makes that they expect acceptance, you know, or, you know, them to move forward rather than being stuck in that sort of position, or going backward? I certainly think it Yeah. It helps at some stage or another, whether or not it’s ready right then and there. That leaves no, it’s there. So I think that’s what’s good.

    Saran 59:54

    Yeah, that’s true. A lot of people will contact me and say, such and I know just had a stroke, or x Right. And I told them about you and I’m like, okay, it might be a while before they come around and need to speak to me specifically or anyone about what’s going on.

    Bill Gasiamis 1:00:12

    I know there was a girl I know who was found to have had an AVM who’s a member of some family of ours but from a different part of the family different side. She was in denial that she had an AVM for six to seven months, and she wasn’t ready to discuss it or talk about it or whatever until it got to the point where it kept bleeding.

    Bill Gasiamis 1:00:36

    And AVM is an arteriovenous malformation because it keeps bleeding. She eventually decided that she couldn’t avoid it. But it still took a long time for her to accept that. It even happened, let alone I’ve got to do something about it and speak to Bill is kind of like was not even in the picture.

    Bill Gasiamis 1:00:59

    It’s like maybe there was a bit of denial. I don’t know what it was fear or whatever. But yeah, people have a different journey to being ready to experience feedback or information or even know what questions to ask takes some time to develop them in your head.

    Saran 1:01:19

    Yeah. Yeah. Everyone’s on their journey. As long as we’re all sort of there around to Yeah, for that. That’s what I want to do.

    Bill Gasiamis 1:01:34

    Yeah. Yeah. It’s brilliant. Now where can people find out a little bit more about the stuff that you do in your organization?

    Saran 1:01:46

    So, I mean, my website is yesssa.com.au. But I’m also on Facebook, and our Instagram. So my actual Instagram handle is Young Stroke Journey Stories. Yeah, I mean, I’m also mainly Facebook and Instagram, I think, is sort of where I am. The website, you know, Facebook is fairly big I think, for my age being 40 on Instagram I hear better for younger, I’m so old. You know, but I’m, I think that’s sort of really the main social media that I’m on.

    Bill Gasiamis 1:02:35

    If you’re so old in your 40s, like me, what are you going to be when you’re in your 80s?

    Saran 1:02:43

    I’m gonna be a lot wiser.

    Bill Gasiamis 1:02:47

    A fossil, or something else? Look, thanks so much for being on the podcast and sharing your story. I appreciated our chat getting to know you a little bit and sharing your story. And hopefully, people listening find it relatable, and they’re able to take a little bit out of this. And it’s a great thing that you’re doing.

    Saran 1:03:11

    It was great chatting with you.

    Bill Gasiamis 1:03:13

    Well, thanks for joining us on today’s episode. I hope you enjoyed the conversation and got something positive from it. Please like comment and share this episode, and give the episode a thumbs up if you’re on social media. Or if you’re watching on YouTube. Leave a comment on every interaction that you do or that you leave the show helps other people find it easier online and it also helps the show rank better on the search engines.

    Bill Gasiamis 1:03:44

    As a result, hopefully, what that means is that more stroke survivors and their caregivers from around the world will find the show easier. And that will hopefully help them have a bit of stroke recovery. And get in touch and find immediately other people that are like them, so that they can have perhaps less anxiety and worry about what it is that they’ve experienced and what the future holds for them. So once again, thanks for listening. I appreciate it and see you on the next episode.

    Intro 1:04:15

    Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals’ opinions and treatment protocols disgusting any podcast or the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

    Intro 1:04:32

    All content on this website at any linked blog, podcast, or video material controlled by this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis the content is intended to complement your medical treatment and support healing is not intended to be a substitute for professional medical advice and should not be relied on as health advice.

    Intro 1:04:54

    The information is general and may not be suitable for your injuries, circumstances or health Do not use our content as a standalone resource to diagnose, treat, cure, or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.

    Intro 1:05:09

    Never delay seeking advice or disregard the advice of a medical professional, your doctor, or your rehabilitation program based on our content. If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional.

    Intro 1:05:23

    If you are experiencing a health emergency or think you might be, call Triple Zero in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department medical information changes constantly. While we aim to provide current quality information in our content.

    Intro 1:05:39

    We do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency, or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with the links we provide however third-party links from our website are followed at your own risk and we are not responsible for any information you find there.

    The post Carotid Artery Dissection Recovery – Saran Chamberlain appeared first on Recovery After Stroke.

    1 hr 7 min
  • Stroke Caregiver Journey – Donna O’Donnell Figurski

    Donna Figurski became a stroke caregiver and wrote a book about her experience called Prisoners Without Bars after her husband experienced multiple brain surgeries that saved his life after a brain hemorrhage.

    Socials:

    Donna O’Donnell Figurski–Author
    Surviving Traumatic Brain Injury
    Facebook
    Instagram

    For the person doing the supporting rather than the recovering, I recorded How To Help Someone After Stroke — what it looked like from the bed. A dollar.

    01:37 Introduction

    03:31 Arteriovenous Malformation
    11:27 Too Much Body Stress
    18:53 The Theory of Everything
    21:12 Stroke Caregiver
    26:48 Keeping Busy
    32:29 Laughing It Off
    44:50 The Recovery After Stroke
    55:00 Prisoners Without Bars By Donna Figurski
    1:03:56 Evolving Passion
    1:14:00 Following The Road

    Donna Figurski 0:00

    The first new neurologist came up to me shook my hand and said, I saw your husband’s brain on my home computer. He looks like he’s in really good shape. (Sigh) next words out of his mouth. He’ll make a great organ donor. Yeah, gasp okay.

    Bill Gasiamis 0:22

    How do you grow from that to that? That quickly? It’s so bizarre.

    Donna Figurski 0:28

    That was it. That was it. He’s in good shape, his body is in good shape. He’s gonna make a great organ.

    Bill Gasiamis 0:34

    Oh, his body is in good shape. Oh my gosh. Right, right.

    Intro 0:46

    This is the recovery after stroke podcast, with Bill Gasiamis helping you navigate recovery after a stroke.

    Bill Gasiamis 0:59

    Hello, and welcome to another episode of the Recovery after Stroke podcast. Recently, Spotify released a new feature that allows people to write their favorite podcast shows similar to how the Apple podcast app allows it. If you think the recovery after stroke podcast deserves it.

    Bill Gasiamis 1:19

    I would love it if you left the show a five-star review. This will help the show rank better on search engines and help newly diagnosed stroke survivors find the show. And it could make a massive difference in their recovery and also help other caregivers find the show and feel like they’re not alone.

    Introduction – Donna Figurski


    Bill Gasiamis 1:37
    So go to your favorite podcast app and share what the podcast means to you it really will make a huge difference. Now this is episode 182 And my guest today is Donna Figursky whose life was completely changed after her husband David experienced a bleed in the brain and multiple brain surgeries 17 years ago.

    Bill Gasiamis 1:58

    This meant that Donna became David’s main caregiver many years later, and just a couple of years ago, Donna completed and published a book that she wrote about their journey together called Prisoners Without Bars: A Caregiver’s Tale. Donna O’Donnell Figurski, welcome to the podcast.

    Donna Figurski 2:20

    Thank you, Bill, I’m so happy to be here.

    Bill Gasiamis 2:23

    Thank you for being here, I appreciate it. I very rarely get to hear from caregivers. And I think one of the biggest and most important things in stroke recovery is to get a feel for the people behind the scenes that are also doing their version of recovery when they’re dealing with somebody that they know or they love or they care for who has had a stroke.

    Bill Gasiamis 2:54

    And my thoughts were often with my wife about what she might be going through when I was becoming unwell. And I ended up in the hospital three times. And it was a very serious situation. And she had to take care of the kids go to work, and be a caregiver to her dad.

    Bill Gasiamis 3:19

    And it’s like, the forgotten person in the whole picture because everyone asked me how I’m going and how I’m doing and how’s Bill and how’s this and how’s that. But nobody did much of that with her.

    Arteriovenous Malformation

    Bill Gasiamis 3:31

    And I think that would have been better for me to know that people would. So while I was going through all the dramas of the strokes for me to know that my wife was also being cared about, in the same way that people were caring about my situation. Tell me a little bit about how you ended up becoming a caregiver.

    Donna Figurski 3:57

    Okay, I just have to reiterate what you said though, it’s so true. I always say that the victim or the survivor, as we usually call a brain injury survivor is the star of the show, you know, and everyone else is a supporting character.

    Donna Figurski 4:14

    And the caregiver is probably the lead supporting character. So, yeah, so I get that and that’s my role, and I’m sure that was your wife’s role. So how did we get here? Wow. It was about 17, well, it was 17 years ago, it was more than 17 years ago on January 13 2005 when David came into our bedroom around seven o’clock in the morning, with his hand over his right eye.

    Donna Figurski 4:47

    And he was having horrendous pain to go running through his head. He had been exercising. He had done 13 chin-ups, well he always did 12. But he did 13 that day. And 13 is what caused his subarachnoid hemorrhage, and his brain bleeds. So he had three brain bleeds within two weeks, every time the doctor would go in and take care of one, they’d come back out and tell me, he had something else we had to take care of.

    Donna Figurski 5:25

    So he went in for a subarachnoid hemorrhage, the bleed. And then when they took care of that, they said, he had an aneurysm, which was like a time bomb. And that had to be removed.

    Donna Figurski 5:41

    So I signed on the dotted lines to have that removed, thinking, Okay, now we’re okay, we’re going to be able to go home finally, only to find out that when they came back from that surgery, they said he had an AVM, which is an arteriovenous malformation.

    Donna Figurski 6:02

    For the audience, it’s it’s a tangle of blood vessels. And the neurosurgeon called that a time bomb, it can go off at any time. Now, also, they told me it’s congenital. So my husband was born with it.

    Donna Figurski 6:17

    And many of us live with it all our lives and never have a problem with it. But for someone who just had a subarachnoid hemorrhage, they wanted it removed. So David went back into brain surgery for the first third time, within that period. And by the end of January, he had three brain surgeries.

    Bill Gasiamis 6:39

    Well, that’s pretty intense, I had an AVM and that’s what bled and caused the three bleeds in my brain and then eventually brain surgery. And, yeah, it was not doing anything until it started to do stuff. And then when it started to do stuff, it seriously started to do stuff and became an issue.

    Bill Gasiamis 7:01

    And I can understand what the doctors would have thought when they went into your husband’s scans and saw that there were multiple issues there. And it’s like, okay, well, since we’re in this situation now, we may as well go, take it a little bit further and resolve the matter as best as we can. So that is not a risk of a more serious bleed later on. That’s potentially fatal. So how old was he at the time?

    Donna Figurski 7:07

    He was only 57 at the time. So he was pretty much in his prime. He was very, very health conscious. Very, you know, I said, he got it doing exercising, which he did every morning, he ran 20 miles a week, he took all his vitamins and placed all of them on the corner for me to take.

    Donna Figurski 7:38

    So I had to take mine too, if it were up to me I probably wouldn’t have. But they were always there. So he was very motivated to keep himself healthy. So that’s what was crazy something like this happened to David.

    Donna Figurski 8:17

    But I think when I said to you earlier that the neurosurgeons and every one of them said he had the slimmest chance of living through any of those, I think the reason he did was because of his good health, otherwise, I don’t think he would have been able to survive, that if he had other issues going on.

    Bill Gasiamis 8:37

    Yeah, the foundation is the most important like anything. And if you’ve got a good foundation to start with, well, then you got a better chance of starting from a higher level of wellness, and then therefore, having a smaller gap to close to get to a level of wellness that’s supportive of a healthy life.

    Bill Gasiamis 8:59

    And, yeah, at 57 There’s a possibility that, you know, most of us in the Western world, you know, might have some risk factors elevated because of our lifestyle for heart attack, cancer, stroke, all those things. So it’s great that at 57, he didn’t have any of those elevated levels of risk.

    Bill Gasiamis 9:29

    And the AVM is one of those things. It’s part of the stroke risk, but it’s not something that you’re doing to yourself that you’re causing yourself through your lifestyle through smoking and excessive drinking and not eating well, and not exercising it’s just one of those things, you know, it’s kind of a random event of nature.

    Bill Gasiamis 9:49

    And then one day, maybe it does do something, and then some days. For some people, it will never do anything or just stay benign and just Never pose a threat. So that’s, that is a really important part of the story. I think it’s, that we need to start from a great foundation.

    Bill Gasiamis 10:09

    And then once we’ve become unwell, we need to create a new approach to health and well-being. And we need to learn about, in fact, what have we been doing, and whether or not he was supportive of good health, even though we might have thought we were doing things that were healthy for us, maybe a little bit more effort into looking into that.

    Bill Gasiamis 10:33

    Maybe might reveal that perhaps, you know, we could avoid, you know, that supposedly, one drink a day, or that one drink every second day, just to make sure that we’re keeping everything as healthy as possible to give us as least complications as possible, going forward into our older years, because we’ve already kind of behind the eight ball when you have a stroke, and you want to make sure that you live as long as possible and as healthy as possible so that you have a good quality of life.

    Donna Figurski 11:07

    Right. And I think that’s one of the things with David, he didn’t drink he didn’t smoke he did earlier in his life. But you know, like, we all would go to parties and things like that, and smoking in college, of course, but he stopped smoking and all that kind of stuff way, way back when in his early 20s.

    Too Much Body Stress

    Donna Figurski 11:28

    And so that was not an issue. So that was good, you know that he didn’t have that going against him too. So, you know, that’s why it was so I’m suspecting that it happened to him, that, you know, he was in such good health. And yet, it happens. And it happened because of, I think, the extra stress that he put on his body at that time.

    Donna Figurski 11:54

    You know, so again, that’s something you have to be aware of, not to overdo, sometimes. But with David, good enough, was never good enough. You know, he always had to strive for more. And that’s, that’s always been his life. And, you know, so sometimes I even have to remind him now, because he’s still going, you know, he’s exercising now.

    Donna Figurski 12:16

    To help him regain some, you know, I can’t say his former life back, because that’s never going to happen at this stage. We had high hopes, at the beginning, when the neurosurgeons told us, he would be able to get back to 95%, well, they lied.

    Donna Figurski 12:36

    They didn’t lie, they thought he would, but he isn’t back to 95%. But fortunately, for David, all of his disabilities are physical. You know, so he doesn’t have any cognitive problems. He doesn’t have any emotional or personality problems. So we feel very fortunate for that.

    Donna Figurski 13:04

    Because it could have been a lot worse. And I don’t know whether you realize I also interview, stroke and why interviewing brain injury survivors period. And, and I and I see lot I see a lot of people that are, I haven’t been able to get back to near where they can have a fruitful life. So that’s why I say, you know, we’re happy that we are where we are, despite the limitations.

    Bill Gasiamis 13:35

    Yeah, but it’s still strange what you said, not many people with physical disabilities consider themselves blessed. And if they do, they haven’t revealed themselves to me, I know that some people would think that right. But that’s a really interesting spin on a physical disability.

    Bill Gasiamis 13:54

    It’s like, some people will lose a toe and then focus on the rest of their lives, and it’ll ruin their lives. And some people won’t be able to move and get out of a wheelchair, and then they’ll win tennis world championships or Wimbledon, or they’ll climb mountains that they’ve never climbed before when they had working legs.

    Bill Gasiamis 14:15

    Do you see what I mean? So it is a little bit strange. Is it a mindset that you guys picked up after the strokes and the brain surgeries? Or was it your standard mindset? Is that how you guys go about life normally?

    Donna Figurski 14:30

    Well, I think we did let go about it positively and most positively. And I think the thing that impacted us the most is David a professor at Columbia University in New York City.

    Donna Figurski 14:45

    So that was his life, his family and his work were his two major things in life. I think if he lost that, if he lost the cognitive ability to be able to teach or write graphs or write scientific papers, I think that would have been much more devastating to him. So put it in the balance now, the physical disabilities and his cognitive.

    Donna Figurski 15:15

    And so what are you going to value more? Well, obviously, for us, it’s going to be cognitive, you know, because he was able, after a year and a half, to go back to his laboratory, he was able to have students enter his lab and guide their research and get their PhDs under his guidance.

    Donna Figurski 15:36

    So saying that that’s the reason why we put it into perspective that way? Do we like the fact that he has difficulty walking? No. Do we like the fact that he has difficulty speaking in our ataxia, swallowing disorder, or vision? No, not at all. But he can still do the other things, he can still type with one finger now.

    Donna Figurski 16:07

    Whereas he used to be all over the keyboard, he can still read, he can still write papers, he edits all my work, my book, which is behind me Prisoners Without Bars. He is my first editor before it goes to my publisher. Anything I write on my blog, or the radio show, or any articles I write, he’s my editor. So yeah, we value that intensely.

    Bill Gasiamis 16:36

    Yeah makes sense. Some people tend to focus on the negatives even worse, even though there are a lot of positives to focus on. And others do what you’re saying. And I think, either one is, okay, I’m okay with whatever people choose to do. The question is, what are you choosing? Is it useful? Or is it not useful for you?

    Bill Gasiamis 17:52

    And absolutely, I think your idea of focusing on the positives is a way to go, and then also not being comfortable or not being completely satisfied with the negatives, well, then that’s obvious, too. And that makes complete sense. We don’t have to enjoy what we’re experiencing in our body, physically, but we can live with it, and we can still achieve things.

    Bill Gasiamis 17:52

    And even for people who are listening who can’t or haven’t gone back to their original Korea or their previous career, there are still lots of things that you can pivot towards, and do and live a fulfilling life and something that makes you feel like you’re contributing to society, I think it’s really important, and it takes time, and you have to learn new skills, and you have to put a plan in place, and you have to go after it.

    Bill Gasiamis 17:52

    And it’s doable, you can see that in so many people who have become disabled and still lived an amazing life. And I always go back to Stephen Hawking, you know, the most famous, most world-renowned scientist, and for the majority of his life, he wasn’t able to participate physically, in almost any way.

    Bill Gasiamis 17:52

    And also, he wasn’t able to use words, etc. Until electronic voices became a thing. But it wasn’t an amazing help, no matter what, he still managed to find a way to become a prominent scientist in his field.

    The Theory of Everything

    Donna Figurski 18:53

    I mean, he’s done more than many completely able people. And he’s been able to do that with his disabilities. And there’s a great documentary, I think it’s a documentary or a movie. I’m not sure which, but about his life. That’s very fascinating. If anyone wants to look at that. I don’t know the title, but I’m sure you can look it up and find it easily.

    Bill Gasiamis 19:17

    Yeah, it was a movie and it came out, probably about within the last decade. I don’t think it was that many years ago, I’m just gonna look it up.

    Donna Figurski 19:30

    It’s within the last few years, I think.

    Bill Gasiamis 19:33

    Yeah, I’m just gonna look it up right now as we speak just so that we can tell people what it’s called. It is called The Theory of Everything. And it was released in 2014.

    Donna Figurski 19:46

    Okay, so not so long ago.

    Bill Gasiamis 19:48

    Yeah, It’s good I’ve seen the movie and it’s a lovely movie because it also still goes through his experiences. As an able-bodied person, then a disabled person, and then also his emotional challenges and the marriage breakup, and all the things that you would expect to the difficult in normal life.

    Bill Gasiamis 20:17

    And then also becomes even harder and more complicated when your life shifts from being enabled by the person to a disabled person, and all the changes and shifts that the whole family had to go through, including his wife.

    Bill Gasiamis 20:31

    So it’s a great insight and for me, I was able to take a lot from that movie, as far as relate to a lot of it, and kind of understand how they ended up navigating the challenges that disability poses.

    Donna Figurski 20:52

    Yeah. And there are many. There are certainly many.

    Bill Gasiamis 20:58

    So, what were you doing for work? When did your husband, David, have a stroke? How were you going about your life?

    Stroke Caregiver


    Donna Figurski 21:12
    Well, I was a first-grade teacher. And so when David had his brain injury, and I called the paramedics, and from the ambulance, I called my secretary at my school and said, get me a substitute for today. And I didn’t know really what this entailed.

    Donna Figurski 21:35

    When I asked when we got in the ambulance, I asked the paramedics if they could drop me off at home afterward. I mean, don’t even go there. You know, it’s like, that’s where my mind was, I had no idea.

    Donna Figurski 21:49

    I mean, first off, paramedics are never going to drop you off. And, but that’s where I was, I was all in this calm, you know, convoluted state. But I didn’t realize at that time that I would be involved in this in the hospitals, basically living in a hospital for the next two to three months.

    Donna Figurski 22:09

    And when I didn’t go to my class that day, and they had a substitute for me until May. So we’re talking mid-January until May, I had to leave my first graders because I couldn’t leave David, I would not leave him in the hospital by himself.

    Donna Figurski 22:27

    Because every time you know, he was going through all these brain surgeries, and he comes up a little bit from his consciousness, and then he’d be, you know, thrust back down, then he’d come up again and throw us back down for the next one.

    Donna Figurski 22:42

    When he finally got to rehab, I thought, okay, he’ll be in rehab for three hours, you’ll have dinners and lunches and everything, I’ll go to work. And I’ll come back, my work was an hour away, and then an hour back, and then another half hour to the hospital.

    Donna Figurski 22:58

    So I thought, well, I’ll get there by five o’clock, and I can stay till 10. And then we’ll start all over again. Well, the first night while I was going to do that, and David ended up pulling out his trach or trying to pull out his trach. And he had a G peg in his stomach to feed him.

    Donna Figurski 23:20

    So the nursing staff had to glove him, they put mitts on him big, they were just like soft boxing gloves like, but you know, what, how big those are, and how. And so, David had those on, when I got in the next morning for this one, this one first day. And he’s, you know, raising his hands.

    Donna Figurski 23:44

    And I thought, Oh, he’s excited to see me. And all he wanted to do with me was get those things off of him. And he also had to be restrained. He was, he had tried to get out of bed.

    Donna Figurski 23:55

    And again, pulled out everything when he fell on the floor. And I realized that there’s no way I will let him in the hospital with these mitts on all day, and restrained to a bed. So I called my principal and explained to her and then they started taking all my sick days. And I said, that’s fine.

    Donna Figurski 24:18

    Once the sick days got used up, they started to take my days. And I said thank you so much, you know because those come back to you eventually at the end of your teaching career at a discounted price. But like I needed them now. And I was just so grateful that I had the support of my principal and my superintendent.

    Donna Figurski 24:39

    So that’s what I was doing. I was teaching until that day, and then I didn’t go back to teaching until the beginning of May. And that’s when David was home at that point. He was we had caregivers for him. Friends of ours from Germany came over and spent time with him when I couldn’t be there, and they just lived with us.

    Donna Figurski 25:06

    So we were fortunate that we were able to work that out so that I could go back to work. Because in May all time, all my paid time was going to be gone. And David wasn’t working. So really I needed to get that salary back in. And it worked out. Well. We were fortunate, we were lucky that we had the connections to do it.

    Bill Gasiamis 25:27

    Was he when he got home? Was he able to toilet himself and do all those things, feed himself, and be independent in any way?

    Donna Figurski 25:36

    No, no, he wasn’t able to do that I had to, he was in the wheelchair, or if I had to remove him, from the wheelchair to a couch, to a chair, to the bed, whatever, to the toilet, that kind of thing.

    Donna Figurski 25:53

    So what happened is, went I was there for a while when he came home on April 1, which I thought was a real April Fool’s joke, because he should not have been left out of the hospital at that point he was unable to do anything. But that’s insurance. And that’s another whole topic.

    Donna Figurski 26:13

    So that’s when we arranged for one of my daughter’s friends from Germany to come over and stay. And she took care, of all those things for him when I wasn’t there. When I got back from work, I went totally on duty with him.

    Donna Figurski 26:31

    But she was always there. So we became a family. And I did this four times and with 3 of the four girls, we became a family that just lived together and did everything together. Fun stuff, and not-so-fun stuff.

    Keeping Busy – Donna Figurski

    Bill Gasiamis 26:48

    Is this still right for you? Have you moved on emotionally from it? Is it still triggering? What’s it like after all these years to reflect on that part of the journey?

    Donna Figurski 27:02

    Well, part of the thing, though, is I don’t think about the beginning. I can talk about it now. Because I wrote the book about it. And I’ve gotten all that kind of stuff out of me. And I talk to a lot of people about it, because I give talks out out in the community and elsewhere, you know, interviews, and so I can talk about it.

    Donna Figurski 27:25

    And I can talk about it objectively like I am talking to you now. But if I stopped and thought about it, if I stopped to think about those days in the hospital in the rehab in the early coming home, if I stopped to think about the things that we’re missing out on in our life now, I could very easily become depressed. But I don’t do that. I keep that at bay. And so I often call it my Energizer Ostrich. I keep way, way, way, way busy with my head in the sand. So I don’t think about it. So I don’t get depressed.

    Bill Gasiamis 28:07

    Yeah, well, it’s in your awareness, but you don’t focus it or your efforts on it. And, and therefore it’s doing its job. It’s kind of saying, Hey, I’m still here. But you’re going yeah I know you’re here. But I got other stuff to do. You know, we’ve got things to do.

    Bill Gasiamis 28:23

    Because this week is my 10th anniversary. So in Australia today, it’s the 12th of February 2022. So the first brain bleed for me was the week of the 12th of February in 2012. And unlike you, I kind of reflect on things and I talk about it all the time. So it’s kind of always off my chest and out into the ether.

    Bill Gasiamis 28:52

    And I’ve answered a million questions about it. And I’ve done 180 podcasts about it, you know, so there’s a lot of therapy in all of those conversations and all that talking. But listening to you now, I asked you about whether you get triggered because I’m getting triggered listening to you talk about your husband.

    Bill Gasiamis 29:12

    And that’s caught me a little bit by surprise. Maybe it’s the 10th anniversary, I don’t know. It’s not that I have an issue with being triggered. It’s just that I’ve noticed it and I thought maybe it still goes on for people after that many years. And it makes sense that it could because traumas kind of like to lurk around. And as much as you deal with them. They still like to find a spot sometimes to hang around in.

    Bill Gasiamis 29:39

    But what I find is they get less traumatic over time, the memory changes and shifts, and the experience, especially your version of the experience becomes a positive one because you’ve written a book, and you have this upbeat approach to life and this gratitude about his problems are only physical. And I think all those things kind of tend to help to not allow the trauma to define both you guys and run your life.

    Donna Figurski 30:20

    Yeah, I think you’re I think that’s very true. And just congratulations on your 10th anniversary too, because that’s huge. And I don’t know whether you do anything about it. But every anniversary, we make it kind of big, we go out to dinner before the pandemic thing, we go out to dinner I’ll buy David flowers or I’ll cook a special dinner, and we have cake or some special dessert for him.

    Donna Figurski 30:45

    So we do acknowledge it. But we acknowledge it is like, I’m just glad you’re here. You know, that kind of thing. So, yeah, but different things can trigger you. Although, like I said, I try to bury them. You know, and I think because I don’t want to face that. I know it’s happened, it’s in my face every single day. Because David has difficulty walking across the room.

    Donna Figurski 31:13

    He has his face is a little distorted from some of the paralysis. So it’s in our faces every day, it’s never gone. But, you know, I think of him very much as before. He’s different. He’s very different. But I think of him very much as the person before I treat him the same way. You know, so if I get angry with him, I’m gonna get angry with him. Like, oh, God, he’s got a brain injury, I can’t get angry with him. So sometimes, that happens. It’s real.

    Bill Gasiamis 31:50

    That’s lovely. It’s lovely to treat him as usual because that’s what most people want. They don’t want to be treated differently. They want to be treated the same. But let me tell you a couple of times when I’ve been treated the same by my wife, and she’s taught me off.

    Bill Gasiamis 32:05

    I have used the but I’ve had a stroke routine on her. You know, I’ve done that a couple of times, to try and smooth things over to make me get out of trouble. I’ve used the whole Come on, you know, like, I had a stroke, like, you know, give me a break, you know, but I probably deserved what I had coming. And that’s all right.

    Laughing It Off – Donna Figurski


    Donna Figurski 32:28
    One of the things that we do is laugh it off. You know, if something, you know, okay, so he’s got me annoyed with something. And then he’ll try to say, Well can’t even say what we said the other day, but it was just like, insult the other person and something that you know, that they’re really going to be triggered on be upset with, and then we just crack up, you know, cuz it’s like, it’s funny, you know.

    Donna Figurski 32:59

    And that’s, I think that’s a lot of what we do with each other is we keep it light, keep it easy. If somebody I mean, very rarely do we get angry at each other for a long period.

    Donna Figurski 33:10

    But there are things that you know, in every marriage, and whether you have a brain injury or not, that are going to tick you off and you say something that maybe you didn’t want to say or something like that. But then if we just laugh it off, it just goes away. And I think that’s one of the good things about how we handle it.

    Bill Gasiamis 33:33

    Yeah, one of the things about getting angry is that I very rarely can remember why I got angry. And it gives me the shits, you know, I get angry. And it was something that happened that was at a low emotional time for me or something like that.

    Bill Gasiamis 33:50

    And vice versa for my wife. We could say the same things to each other on different days. And most days, it’s like, whatever. And some days, it’s one of the worst things you could have said, and those frustrate me because it’s like, how did we get there?

    Bill Gasiamis 34:07

    And in three or four days, why was it so bad, but I can’t remember what started the argument? I mean, it’s so silly. And today, I could honestly only remember maybe sort of a handful of things that were serious enough that I can remember I was angry for a valid reason.

    Bill Gasiamis 34:28

    And, you know, I could identify it, and I could discuss it now. But obviously, not going back to the anger we’ve resolved it. But it’s only a handful of things that I can remember that I was properly angry about that she did that she caused.

    Bill Gasiamis 34:45

    That she needed to make better, so to speak, was all the other stuff. I have no idea what they were about. Doesn’t matter. And we’ve been married 26 years like I’ve got no idea.

    Donna Figurski 35:00

    David’s sitting here right behind my computer laughing because he agrees with you. Because it’s true. It’s like, and I think that happens with people who are connected. As David I and I are and it sounds to me like you and your wife are that, you know, you do get angry occasionally.

    Donna Figurski 35:22

    But then you don’t even think about why, you know, when it’s gone away, whereas somebody else if they’ve done something that I didn’t like, and I’m feeling unhappy with them, sometimes I’ll remember that longer, you know, but with David, they just kind of fade away.

    Donna Figurski 35:40

    And I think that that’s probably good. I mean, it’s very good, because you’re not harboring bad feelings about each other. And so, yeah, I think that’s because I know that I can barely, you know, remember things that we get angry at. And some of the things are so ridiculous.

    Bill Gasiamis 36:03

    Yeah, angry for the sake of being angry is probably the wrong place to be, especially in life, you’ve got so many other problems to solve every day, that the last thing you need to be is putting your energy into something that’s completely not constructive at all, and just meaningless.

    Bill Gasiamis 36:20

    So I like that idea of just forgetting about what you got angry about not remembering how you got there. And then using that as the motivation to stop the anger on the next crazy argument. And just moving beyond that quicker and getting to the other side of it quicker.

    Bill Gasiamis 36:43

    Kind of acknowledging that it happened. And then it’s like, okay, well, alright, let that go. Now we can let it go and move on. I’m practicing I’m not fantastic at it yet. I’m 47, I’m still practicing that every day to try and be better at releasing nonuseful emotional, stuck points, you know, and situations that just get no positive outcome. So how long into this whole journey did you decide that you needed to write a book about your experience as a caregiver?

    Donna Figurski 37:29

    That’s funny because I didn’t decide to write a book. What happened is I was writing children’s picture books. I had been sending manuscripts out to agents and editors for several years and getting this close, but never quite signing on the dotted line.

    Donna Figurski 37:50

    And then when this happened to David, all my writing stopped. Because I couldn’t write, my mind wasn’t in children’s picture books at that point, I was still reading to the kids in school spot what I was doing the entire time that David was in the hospital, and he went to three different places.

    Donna Figurski 38:13

    I had a digital recorder with me because I knew I wouldn’t remember what everybody said. So as soon as I spoke to a doctor or therapist or whomever, I would go off and tell myself what they said. And then later that evening, I would go home and write what we call the David update.

    Donna Figurski 38:35

    So we lived in New Jersey at the time, and I only had two family members anywhere nearby, the closest other was 400 miles and most more across the country. So and friends too, of course, I had to keep them apprised of what was going on with David.

    Donna Figurski 38:53

    So much like those Christmas holiday letters that everybody sends out. Well, that happened almost every night like David waved today, David took a long sigh You know, I mean, it was just everything, or David had the trach put in or the GP or whatever it was, I wrote that down and let people know.

    Donna Figurski 39:16

    Then about 2006 Around January, I started to read these to David because he didn’t know what had happened to him and he never asked me you know, he never really felt you know, went back to the beginning.

    Donna Figurski 39:32

    And so when I was reading in the first chapter of how the paramedics came into the house and how we got to the hospital, etc. And what the doctor said to me on the first thing and I am going to tell you this.

    Donna Figurski 39:47

    The first neurologist came up to me shook my hand and said, I saw your husband’s brain on my home computer. He looks like he’s in really good shape. (sigh) next words out of his mouth. He’ll make a great organ donor. Yeah, gasp. Okay.

    Bill Gasiamis 40:09

    How do you grow from that to that, that quickly? That’s so bizarre.

    Donna Figurski 40:16

    That was it. That was it. He’s in good shape. His body is in good shape he’s gonna make a great organ donor.

    Bill Gasiamis 40:22

    Oh, his body is in good shape? Oh my gosh.

    Intro 40:30

    If you’ve had a stroke, and you’re in recovery, you will know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like now How long will it take to recover? Will I recover? What things should I avoid? In case I make matters worse, and doctors will explain things that, you’ve never had a stroke before, you probably don’t know what questions to ask.

    Intro 40:54

    If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recovery after stroke.com where you can download a guide that will help you it’s called Seven Questions to Ask Your Doctor about your Stroke.

    Intro 41:14

    These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website now, recoveryafterstroke.com, and download the guide. It’s free.

    Donna Figurski 41:33

    So I mean, that’s just part of the gasp in my book. But, so anyway, I started to read these missives, I guess I might call them because they weren’t chapters, but I started to read them to David.

    Donna Figurski 41:48

    And he would sit on the floor of my office, and he would go oh, my gosh, you know, that happened to me? Did you go through that? You know, and he was like, totally gasped by it all, because he had no idea he was in a coma. You know, he was sleeping the life of Rip Van Winkle.

    Donna Figurski 42:05

    And I was, as you know, taking everything into control into hand. So, at that point, he kind of suggested I should write it in a book. And I thought, I can’t write for adults, I could never write a long book. Okay, it’s 200. And I have it here. It’s 270 Oh, no, it’s more than that.

    Donna Figurski 42:33

    It’s 300 pages, you know, so, I can’t write this. But I sat down, and I started and I worked, and I worked, and I worked. And I worked after school and late into the night, and I worked on weekends. And that was in 2006. I didn’t finish it until about 2013 or 14.

    Donna Figurski 42:56

    And then I didn’t even get it published until 2018. So, that’s how all that happened. So no, I didn’t plan to write a book. What I have thought about when I was in the waiting rooms of all the different hospitals, is they need a pamphlet, you know how they have it for diabetes, and for Parkinson’s, etc, Alzheimer’s, they need a pamphlet so that people know what to expect with traumatic brain injury.

    Donna Figurski 43:28

    Because I had never even heard those words. I didn’t know what they were, I didn’t know what a brain injury was. So it turns out that I decided to, I didn’t get to write the pamphlet, but I ended up starting to write this. So that’s how the book came to be. And now I’m writing another book with someone you know.

    Donna Figurski 43:52

    Deb Brandon, you interviewed Deb a couple of weeks ago?

    Bill Gasiamis 43:56

    Yes.

    Donna Figurski 43:57

    And Deb and I are finishing our first draft of a book, from the caregivers lens and the survivor lens.

    Bill Gasiamis 44:05

    Wow.

    Donna Figurski 44:06

    So we meet once a week, and we work on our chapters and just, you know, do our discussion and then write our parts. And hopefully, within a year, we’ll have that book out there. Because I think it’s important for people to have these tools available to them. Because up in 2005 I didn’t know anything.

    Donna Figurski 44:32

    And there was very, very little out there. There’s a lot more now. But I just feel people have to be able to get the stuff in their hand and preferably read it before it might happen to their loved ones. But if not least get a chance to read it and see that you’re not alone.

    The Recovery After Stroke

    Bill Gasiamis 44:50

    Yeah. 2012 There was nothing out there either. There were seven years after David had his stroke. But the internet was kind of still emerging and ideas about these types of podcasts and groups and communities and whatever, they weren’t just fleeting. No one had taken the time to do it seriously, in 2015, when I started the podcast, and I was putting out maybe two or three or four episodes a year, you know, not much.

    Bill Gasiamis 45:23

    I didn’t get serious about it until maybe three years ago, when I’m putting out an episode a week, and there’s a lot of work that’s involved in that, as a stroke survivor, in 2015, I didn’t have all of the focus, the energy, the ability to go through that. So relying on stroke survivors to be the people who put that information out there is, I think, not the right path.

    Bill Gasiamis 45:46

    Because stroke survivors have too much on their plate to try and get content out to make life easier for themselves and other stroke survivors. And for the caregivers. I mean, that’s impossible to expect the stroke survivor to do that. That being said, it’s also just as hard for the caregiver to do that because they’re too busy giving care and trying to do regular life.

    Bill Gasiamis 46:13

    So I seem to have found this zone that I can go into and put this content out. But of course, there’s not enough time to do all the things that I want to do. Because I’ve got to do regular life stuff. So this is a good start for me. And I like the way you stumbled into a book over the many, many years.

    Bill Gasiamis 46:37

    And it took a long time to get it done. And that’s a great thing that there was no real deadline for it. There was no real publisher getting on your case and forcing the issue and all that type of thing. It just evolved and emerged. And I like the idea of that. And I am impressed by people who come on this podcast, every single one of them because they need to give back in this way that helps other people.

    Bill Gasiamis 47:08

    And even if it’s just getting on for an hour and then talking, somebody will pick that up at some point and they’ll go, Well, I needed to hear that podcast episode or I can relate to that one, or that made a big difference. And caregivers don’t have enough of those things that they can relate to.

    Bill Gasiamis 47:30

    They’ve got a great perspective on a lot of stroke survivors from my podcast, but they don’t have a lot of different versions of caregiver stories. And that’s what I like about the fact that you’re doing this with Deb, especially giving two sides of the story in one amazing book.

    Bill Gasiamis 47:51

    Deb is somebody who impressed me because of her background in academia. But more so because she was such a reclusive kind of character. And then found that in fact, she was able to be more involved in social aspects of life because of the stroke for some reason.

    Bill Gasiamis 48:22

    It made her more empathetic and made her more able to understand what other people were going through made her a better teacher it made her a better mom and a better better human all around and she sees it as being a real positive aspect of what happened in her head.

    Bill Gasiamis 48:45

    That was on episode 178 and she had a cavernoma which is a similar type of situation to an AVM but the cause of a cavernoma is a little bit different in some people. So it’s cool to hear that you guys are coming together. How did you meet each other?

    Donna Figurski 49:11

    That’s funny because I meet a lot of people on social media. And something that Deb said someday because I will pick people that say something and say would you like to interview on my surviving traumatic brain injury blog? I interview caregivers and survivors and that’s a paper I mean that paper but I mean it’s like goes on a website.

    Donna Figurski 49:37

    And then so she did that. And then she also did a radio show with me. And then you know I know how it was it was because I saw her book. That’s how without what’s what drew me to her and said, Okay, I want you to be on my show. Well, then it turns out that our publicists were, there was a connection between our publicists somehow.

    Donna Figurski 50:04

    And, yeah, maybe it was the same publicist, maybe that’s what it was. And so anyhow, they worked together so that we would go to the Tucson Book Festival. So Deb was gonna fly out to Arizona from Pittsburgh. She was going to fly right to Tucson, and we were going to meet there.

    Donna Figurski 50:22

    And I said, Well, that’s silly. Why don’t you fly to my house? And we’ll drive down together with David, we’ll get hotel rooms down there. And we’ll go to the book fair. And she did, you know, and this is somebody I had never met, we just met online, I liked her. And I’ve invited her to my home.

    Donna Figurski 50:41

    And so we have been best friends ever since we’ve been very close friends. And she proposed this book to me about a year ago. We started working on it last December. So I just passed and I said, yeah, let’s do it. So we have an editor who’s going to be working with David my editor first.

    Donna Figurski 51:02

    But then we have another editor overall before we send it to a company. So that’s how we got involved together. So every week, sometimes more than that we talk about what we’re writing, you know, and go back and edit each other’s and all that kind of stuff. So that’s how it happened. It’s amazing. And that’s how I found you. It was through Deb.

    Bill Gasiamis 51:26

    Yeah, I think I saw something on your Instagram or somewhere. And I said to you, you should be on my podcast. That was it. And you didn’t think that you qualified to be on my podcast, which I found strange, like, bizarre that somebody who is caring for a stroke survivor didn’t feel like they’re able to speak on my platform. I’m curious about that, just as to why you thought that perhaps that wasn’t the right platform for you.

    Donna Figurski 52:06

    Well, I just thought you were focusing on the survivor, and not necessarily on the caregiver. So I felt like I was a little bit out here, from what your interests were and what you were promoting on your podcast. So that’s why I just asked you, you know, wanted to make sure that you knew that I wasn’t a stroke survivor, that I didn’t have the injury, and just so that I didn’t come on the show with misconceptions.

    Bill Gasiamis 52:37

    Yeah, fair enough. The thing about it is every stroke survivor has a caregiver, whether they are professional caregivers or family members, every one of them has it. So I imagine that they would appreciate an episode like this. Not I imagine they definitely would appreciate an episode like this.

    Bill Gasiamis 52:57

    So for me, it just goes hand in hand, both of us are going through stroke recovery, the caregiver and stroke survivor. I mean, it’s just I think it’s even more unfair that it’s thrust upon the caregiver. Like I sort of say, from that perspective, I don’t have a lot of caregivers approach me that’s what I’m worried about.

    Bill Gasiamis 53:20

    Most of them do it in suffer in silence. This is the thing that I’m concerned about. That’s why when I see a caregiver, it’s immediate. It’s like, come on, let’s tell the story. And when I say a caregiver writing a book, that’s even better, because then they’re taking that story to the next level, and making it possible for people to stumble across the book, in a bookstore, online, or in all these places.

    Bill Gasiamis 53:49

    No one’s gonna find my podcast in a bookstore. You know, they can find a podcast, which is great, but no one’s gonna stumble on it. I’ve stumbled on some books in bookstores that related to traumatic brain injuries, and that’s made my day to find them.

    Bill Gasiamis 54:06

    And then to connect to the author and then to invite the author on to the podcast. And, you know, it’s another level of necessity, we need every story from every person and that’s all I do. I just share recovery stories. So what I love about your stories, is you guys are so far down the line, so many years down the line, that I get to express to people what it’s like, X amount of years down the line, if you’re just going through it now.

    Bill Gasiamis 54:36

    And it’s terrible. And it’s really hard and all these things. Well, it gets easier, still complicated and all those things but you seem to find a new way to do life and to adjust and to be yourselves and to reemerge from this thing in some way that’s meaningful to you.

    Prisoners Without Bars By Donna Figurski


    Bill Gasiamis 55:00
    And that’s why I do it’s called recovery after stroke. It’s not about staying in the stroke, it’s not about staying in the problem. It’s about recovering after the stroke. And however long that recovery takes is fine. Like, it doesn’t matter. It’s just about the entire afterpart of the stroke. So caregivers are always involved in that. Your book is called Prisoners Without Bars. Tell me about the title. How did you come about that?

    Donna Figurski 55:38

    I started with very mundane titles like Conquering Traumatic Brain Injury, and then Subtitle or something like that, or Surviving Traumatic Brain Injury. And that’s how it was in the very beginning.

    Donna Figurski 55:51

    But it wasn’t catchy. You know, I mean, it stated it, but it wasn’t catchy. And so when I was writing the book, there is a line in the book, saying that David is a prisoner without bars, basically, because of his disabilities. And the fact that he cannot leave our house without me.

    Donna Figurski 56:12

    He can’t walk down to get the mail, because of the uneven sidewalk or the little slope in the driveway, because he has such difficulty with his balance. So I wrote that he was a prisoner without bars, and then I was at a writing conference some years ago, I guess it was 2013 when we moved to Arizona.

    Donna Figurski 56:34

    And I talked to an agent, and she looked at me, and she, you know, once I explained the book to her a little bit, she said, No, this book is Prisoners Without Bars. And I said, No, no, no, no, no, this is about David. It’s not my book. It’s all about David. And she said, No, this book is about you. And I said, No, it’s not, you know, and here I am arguing with an agent, you know.

    Donna Figurski 57:00

    But then I went home and told David, he goes, she’s right. This is Prisoners Without Bars because I was restricted in my life for a good five years, whereas David did go back to work a year and a half. So while he was at work, I was able to go to work. And before he got home, one of his professor friends would drop him off.

    Donna Figurski 57:25

    But before he got home, I got all my errands done, so that I would be in for the rest of the night. So he wouldn’t be alone at all. So yeah. Then when he started to promote that, he said, yeah, that you are a prisoner, as well as, as I am. Now, I’m not so much a prisoner, because I can get up and walk out, go to the grocery store.

    Donna Figurski 57:46

    And David can be in the house and take care of himself that way. But truly the way this book takes place, up to when he returned to work. So the first year and a half. So it went to be Prisoners Without Bars, A Caregiver Tale. And David kind of was pushing the caregiver part. So that’s how I got the title, it’s funny how it evolves.

    Bill Gasiamis 58:14

    Yeah, that’s true. That’s my take on caregivers as well. It’s like, everything goes on hold, and everything revolves around the other person. So whatever you had in mind, to do for yourself, it stops. And, most caregivers don’t go back to it. They, put themselves last on the list of to-do things.

    Bill Gasiamis 58:38

    And it’s disheartening to see that it’s like, hang on a sec, take a break, go away for whatever, you know, organize some way to not be in this situation for a day or half a day or whatever, and go back to experience something that you need to experience in the summer that you’d like or something that you enjoy or something that’s not about stroke recovery, or helping somebody or whatever. But they don’t do they?

    Donna Figurski 59:05

    You know I give talks about that. Because when I go out to give caregiver talks, and this is something that I talk about all the time, it’s not something I did. That’s why I could talk about it because I know I should have, but what I do is I carry these little stones around that I purchased, and I call them I’m going to pick one I like it’s a tummy time stone.

    Donna Figurski 59:33

    We call it a Me Time Stone. It’s just a tiny little black polished stone. All different kinds of shapes. Here’s one great big huge one that I never thought anybody would want something that big but I did go to a conference or a talking engaged speaking engagement.

    Donna Figurski 59:51

    And a guy picked one of those stones as big as that. And I said why in the world would you pick something that big? He said Look at me. I’m a big guy. And he was he was like way, way up here, you know. So the purpose of the stone is and I keep all them, as you see, I have them right here, I have them all over the house, you know, my vanity in the bedroom, the bathroom, by all my computers, I mean everywhere.

    Donna Figurski 1:00:17

    And those are to remind me that I’m important too. Every time I see this, I think that I need to take some time for myself. Now, like I said, In the beginning, I did it. But now I just say like a cup of tea, or a cup of coffee for me, you know, but a cup of coffee, a bubble bath, a lot of people like to do that.

    Donna Figurski 1:00:42

    A walk around the block, read a chapter in a book, whatever you can manage to stop and take your mind off of everything else in your life, and focus on yourself. And frankly, what I did, this was past the five-year mark, again, I started to go to the theater. Now I had, I’ve always wanted to go to the theater to work in the theater.

    Donna Figurski 1:01:07

    But I didn’t have the time to do it. And I was retired at that point, too. So I started going to the theater meetings on once a month, Friday night, from seven to 10. And I had my phone right with me, if David needed me, he could buzz me. That was the first time I would take time for myself.

    Donna Figurski 1:01:31

    And now I’m in the theater all the time. I’m the stage manager for shows I have a show coming up in March and we just finished one in December, another one in April that I’m the stage manager for so that’s going out every night for several hours. And David’s right here with us, you know, he works on his computer, I keep him busy he’s editing my work.

    Donna Figurski 1:01:53

    Or he’s listening to a lot of TED Talks and things like that. So you know, the prisoner part has moved on a little bit. And the Me Time Stones have taken over a little bit. And, I think that it’s so important, even when you are inundated with every single minute taking care of someone that you do find some time for yourself, you know, just to decompress, you have to, reboot, you know.

    Bill Gasiamis 1:02:26

    I think that’s one of the most important things with anything if you don’t do that it becomes a chore becomes difficult becomes something that you start to dislike or despise, and then that becomes resentment.

    Bill Gasiamis 1:02:42

    And then it’s not useful. It’s not supportive if you’ve chosen to hang around and be the caregiver. Part of being a caregiver is caregiving for yourself. It’s not just for the other person, the caregiver role is about caring for self first and then the other person because if you don’t care for yourself, you can’t care for the other person.

    Donna Figurski 1:03:05

    They say that on the airplanes, don’t they? Flight Attendants start every flight by putting on their oxygen masks before they help others. Because if you don’t have oxygen, you’re not going to be able to do anything. And it’s the same concept.

    Bill Gasiamis 1:03:18

    Yeah, exactly. Right. Exactly. Right. So I feel like your journey has been really evolving, constantly evolving and changing and shifting and you’ve found space for things. Just by chance, as in naturally, as in, oh, here’s an opportunity. Here’s a window of opportunity for me to slot something in.

    Evolving Passion

    Bill Gasiamis 1:03:56

    I’m going to try that, and let’s see what happens. Is that how you guys went about it? Is that how you ended up in the theater? Or was it in the back of your mind to get involved in theater way, way long ago? And you just didn’t know how to make it happen. Just like the book, everything that you’re speaking to me about seems like it just kind of emerged and evolved rather than got targeted to achieve.

    Donna Figurski 1:04:24

    Yeah, I think you’re correct on that. I have always had the theater in the back of my mind since I was in second grade. I was Little Red Riding Hood and that was my starring role. But, so it has always been something that I would have liked to have done, but when I was working, there was never any time to do that.

    Donna Figurski 1:04:47

    You know, so um, and then when I retired and that was well after David’s injury. Again, it took five years for me to be able to feel that I was able to even do something and I happened to See our local theater had a meeting. So I said I’m going to go. So that that one going to that one meeting is what has evolved into.

    Donna Figurski 1:05:08

    Now that was back in 2010. So 11 years of my working in the theater, and this is all volunteer kind of stuff that you do, you know. But first back in not leaving, New Jersey, and now here out in Arizona. So that was one thing. And then another thing is I went to a jewelry class, and I liked doing it.

    Donna Figurski 1:05:31

    So I ended up setting up my whole studio. And again, after five years, nothing happened before that. And I started to create jewelry. And that I would zone out, we were in a three-story house. My main story was on the first and second floors. So David was just, you know, a few steps away in another room. And I was there. So I was still available for him.

    Donna Figurski 1:05:57

    But when I was creating, It’s almost like I had blinders on. I could think of nothing else. But what my creative work there. And that was very rejuvenating. Then when we moved out here to Arizona, in 2013, and 14, that’s when I started to want to sell and get my book out. It was done at that point. And I was on social media. I hadn’t known about it before that.

    Donna Figurski 1:06:29

    So I started to join all of the groups, all of the brain injury, stroke group, caregiver, there are a few of those spouses groups. I joined something like 30 groups or something, and tried to keep up with some things, but obviously couldn’t keep up with all. But I found that, wow, there are a lot of people out here who are going through this, and I didn’t realize it.

    Donna Figurski 1:06:52

    So I woke up one morning, and this is literally what happened. I woke up one morning and I said, I needed to create a website or a blog and start helping people because I had enough knowledge about what was going on in brain injury. So I started building a website. I think it was it’s a WordPress or a blog.

    Donna Figurski 1:07:15

    So I built that. And I called it Surviving Traumatic Brain Injury. I wish I had just put brain injury. But at the time, I don’t know when I can’t change it now because it’s popular. It just won its third window and won two awards. And I just got nominated, not nominated. It just got acclaimed for honored for one of the top 35 Drum blogs on brain injury.

    Donna Figurski 1:07:48

    And they took 1000s of them. So I was like, Yes, I was excited about that. Yeah, so I found that that was helping people. And so when I started to do it with survivors, when I added the caregiver page, and then I added this and I added that. And then from that I ended up with somebody contacting me a friend that I had met online. So, Donna, I am one of the hosts on the brain injury radio network.

    Donna Figurski 1:08:16

    And I think you’d be great to be a host there. So I said, Oh, no, I can’t do that. I don’t know how to be a radio host. I can’t you know. And so she said, No, just try it. And then her boss came on and said, I’ve been watching you too. And I’d like you to do it. So I started and now that is seven years or eight years ago now that I’ve been doing that twice a month.

    Donna Figurski 1:08:44

    So you, you know, things didn’t evolve. And they evolved around brain injury because that’s where my focus in my life is. Yes. If I can do anything to help anybody, I can let them know that they’re not alone. Like I felt and like you said you felt in 2010. Yeah, I just think that’s why we do what we do. I mean, I’m saying that’s what I do. And I think that’s why you’re doing it too.

    Bill Gasiamis 1:09:14

    Yeah, kind of fell for me. Things evolved in the same kind of way. Usually, it’s just because I took advantage of an opening spontaneously, and something came up. Yeah, let me give that a try. And then from that, something came up and evolved and emerged.

    Bill Gasiamis 1:09:31

    The book that I’m writing came out of that exact situation like you, I had no intention of ever writing a book about anything. Then I went to a particular course that a colleague of mine, a friend of mine mentor of mine, put together and it was about modeling excellence and how you model excellence in a particular field in your chosen field.

    Bill Gasiamis 1:09:59

    And then from that one of the things that I realized was that there was a whole bunch of people saying that stroke was the best thing that happened to me. Deb Brandon was one of those people who said that, and then it’s like, Okay, how did everybody get there? How did they get to be able to say that? Can we model that? Can we find, like a formula that makes people do that?

    Bill Gasiamis 1:10:22

    And then that began a conversation with my Instagram followers. I was contacted by about 15 Instagram followers, who said the same things that I was saying. And then I found that we all had a lot in common and all the things in common. We didn’t know what we had in common, but we had a lot in common.

    Bill Gasiamis 1:10:41

    That ended up getting us to that point of saying those words. So it’s kind of a story about post-traumatic growth and how people did that journey. Some of them didn’t have a clue that they were doing it, they just did it, and they got there somehow. And then that is what evolved into this thing. That’s become a book idea. And now it’s half a manuscript, and soon, it’ll be complete.

    Donna Figurski 1:11:08

    Can’t wait to read it.

    Bill Gasiamis 1:11:09

    Yeah, it’d be lovely to read. I can’t wait to read it and I haven’t even finished it. And it’s like, it’s just funny how I’m writing that book, but I’m not aware of what’s in it. Like, I think it’s gonna be a great read for me when I go through it. Strange. So yeah, everything has evolved, it’s been 10 years and the book idea, came about last came up about two years ago.

    Bill Gasiamis 1:11:40

    It’s taken time to get to that point, it’s taken about a year to write half a manuscript. And no one, I don’t have a publisher yet, or anything like this, and there’s no one on my back, forcing me to write X amount of words, by the end of this month, or whatever. And I haven’t written for about a month at the moment. So I’m not worried about that, or concerned about that.

    Bill Gasiamis 1:12:04

    It will just come as it comes just like the podcast did and then evolved from a few episodes every so often to an episode a week. That’s kind of how everything else is coming up. I wanted to focus on this part of that conversation because it’s an idea that it’s a, it’s part of the story to sort of suggest to people who are doing tough in the very early stages of caregiving.

    Bill Gasiamis 1:12:36

    That right now it’s the time to do the tough stuff. And then soon, somehow things will shift, and it’ll be time to go into the other stuff that you’ve always wanted to do or that you want to do. And not to feel like this thing is never going to end I’m never going to get my life back, or I’m never going to do what I love anymore. It’s the tough stuff that happened for you many, many years ago.

    Bill Gasiamis 1:13:03

    And there was a season for that. And then the seasons changed and evolved, then became this other aspect of caregiving, and enabled you to be creative drawing from this part of your life that you also didn’t choose. But you’ve found a way to make it a useful thing for people and yourself.

    Bill Gasiamis 1:13:29

    Because you’re sharing and you feel like you’re giving back and you feel like you’re contributing and you feel like you’re making a difference. And you are. And that’s all come from this thing that you’ve asked for.

    Donna Figurski 1:13:42

    I know exactly. You know, and that’s the thing, it’s like, everyone comes to another fork in the road, you’re always coming two forks in the road. And sometimes you get to choose with that fork sometimes you don’t in this kind of a situation, but you still have to follow it.

    Following The Road

    Donna Figurski 1:14:00

    You have a choice, you can make that a fork, a happier fork, or you can make it an unpleasant path, or an unpleasant, pleasant journey. And it’s just easier to make it pleasant. You know, it’s more fun that way. So you just for me and for David, we just try to find the fun in life, you know, the fun whatever we can do. I mean, just goofing around the house, you know, silliness sometimes, but it works.

    Bill Gasiamis 1:14:36

    Donna, your book is called Prisoners Without Bars. If somebody wants to look you up online, find the book. Where would they go?

    Donna Figurski 1:14:48

    They could put in, they could go to Amazon, they could go probably anywhere there. It’s all over the place. Amazon, Barnes and Noble, Kobo, just I’ll put in the title. Probably what I’ve noticed is that when I put in prisoners, Amazon, and my last name just Figurski, that’ll bring it up.

    Donna Figurski 1:15:12

    You could also go to my website, DonnaFigurski.com. And then if you go to the book area on that website, you can see all the cast of characters, because most of the characters are in the book that, you know, that I talked about are on that website. Some will remain anonymous for various reasons, for privacy, but most of them are there. So it makes it more fun to read the book that way too.

    Bill Gasiamis 1:15:43

    Yeah. Fantastic. Thank you so much for being on the podcast.

    Donna Figurski 1:15:47

    Thank you. I enjoyed talking with you, Bill.

    Bill Gasiamis 1:15:50

    Well, thanks for listening to another episode of the Recovery after Stroke podcast. I appreciate you tuning in. And please do feel free to Like share, give the episode a thumbs up if you’re watching on YouTube, or leave a comment below. Anything that you could do to interact with the show will help it rank better.

    Bill Gasiamis 1:16:14

    And therefore be found easier by other stroke survivors and their caregivers from all around the world. And hopefully, it’ll make their stroke recovery journey just that little bit easier. And make them feel less alone.

    Bill Gasiamis 1:16:29

    And make them feel like they have other people out there who are like them and that they can reach out to and hopefully be inspired by them and hopefully support them in overcoming all the challenges that we know that people who experienced a stroke need to overcome. Thanks again for listening. I appreciate it and see you on the next episode.

    Intro 1:16:51

    Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals’ opinions and treatment protocols disgusting any podcast or the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

    Intro 1:17:08

    All content on this website at any linked blog, podcast, or video material controlled by this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis, the content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.

    Intro 1:17:31

    The information is general and may not be suitable for your personal injuries, circumstances, or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure, or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.

    Intro 1:17:46

    Never delay seeking advice or disregard the advice of a medical professional, your doctor, or your rehabilitation program based on our content. If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional.

    Intro 1:18:00

    If you are experiencing a health emergency or things you might be called triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department medical information changes constantly. While we aim to provide current quality information in our content.

    Intro 1:18:16

    We do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency, or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with the links we provide however third-party links from our website are followed at your own risk and we are not responsible for any information you find there.

    The post Stroke Caregiver Journey – Donna O’Donnell Figurski appeared first on Recovery After Stroke.

    1 hr 19 min
  • Cavernous Angioma Recovery – Heather L. Rendulic

    Cavernous Angioma Recovery – Heather L. Rendulic was 22 when she experienced a series of 5 bleeds in the brain in 11 months before her surgical team decided that brain surgery was required to resolve the matter once and for all.

    Socials: 

    Facebook:

    https://www.facebook.com/faithnotfearllc

    Website:

    https://heatherheadstrong.com/

    Andrew Jobling:

    https://andrewjobling.com.au/

    Angioma Alliance:

    https://www.angioma.org/

    Highlights:

    01:44 Introduction

    02:42 Heather L. Rendulic – Cavernous Angioma
    08:16 Invincible
    13:48 Cavernous Angioma Recovery
    21:27 Having A Support System
    28:03 Mind And Body Connection
    38:24 Body Awareness
    42:49 Struggling With Acceptance
    50:04 Life Lessons
    53:33 Headstrong Through Life Love and Brain Surgery
    1:00:03 There Are Many Ways To Succeed

    Transcription:

    Heather L. Rendulic 0:00

    Well, I mean, when I got divorced from my first marriage, I was disabled. And that was my first thought who’s going to accept me for who I am? And you know, I need a little extra help around the house sometimes like opening jars, which I think a lot of women do.

    Bill Gasiamis 0:17

    Even I do, let’s be honest Yeah, I mean the jar won’t open sometimes like just doesn’t want to open.

    Heather L. Rendulic 0:28

    I know, I swear they do that. And then he comes in, it’s like, really easy. And I say, well I loosened it for you. But it is tricky to do. But that was my first thought. And my encouragement to those people wondering that is, I eventually had to just tell myself, you know what, there’s not one perfect person out there on this planet right now. And we all have our things.

    Intro 1:01

    This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after a stroke.

    Bill Gasiamis 1:13

    Hello, and welcome to another episode of the Recovery after Stroke podcast. Recently, Spotify released a new feature that allows people to rate their favorite shows similarly to how the Apple podcast app allows it.

    Bill Gasiamis 1:28

    If you think the show deserves it, I’d love it. If you left us a five-star review. This will help the show rank better on search engines and help newly diagnosed stroke survivors to find the show and you could make a massive difference in their recovery.

    Introduction

    Bill Gasiamis 1:44

    So go to your favorite podcast app and share what the podcast means for you. It really will make a huge difference. Now this is episode 181. And my guest today is Heather Rendulic.

    Bill Gasiamis 1:59

    Like many of us stroke survivors experienced a vast range of emotional lows and highs and had to overcome many challenges when at the age of 22, a previously undiagnosed cavernous angioma bled five times within 11 months.

    Bill Gasiamis 2:16

    Heather has written a book about her experience called Through Life Love and Brain Surgery. I hope you enjoy this episode. Heather Rendulic, welcome to the podcast.

    Heather L. Rendulic 2:27

    Oh, thank you for having me, Bill.

    Bill Gasiamis 2:29

    My pleasure. Thanks for being here. You’re quite the achiever when it comes to hemorrhagic strokes. You’ve had a few. Tell me a little bit about what happened to you.

    Heather L. Rendulic – Cavernous Angioma


    Heather L. Rendulic 2:43
    I agree. So yeah, back then I was in my early 20s. And I was a healthy person who never had any problems and randomly had a brain hemorrhage. They then diagnosed me with a rare brain condition called cavernous angioma, which in layman’s terms is a cluster of really weak blood vessels.

    Heather L. Rendulic 3:06

    And I had one on top of my brain stem. And the only cure is brain surgery. And right now they’re researching treatments. But at the time of my diagnosis, there were no treatments other than avoiding blood thinners and living your life.

    Heather L. Rendulic 3:23

    So I was told mine was inoperable. It was too deep in my brain, they wouldn’t touch it. So I went on, I was a full-time college student, and over the next year, it bled five times over 11 months, and I had five hemorrhagic strokes.

    Heather L. Rendulic 3:39

    The fifth and final one was massive, I was paralyzed half my body, the left side of my body. And at that point, my neurosurgeon said, we have to get this thing out of you, or else it’s going to kill you.

    Heather L. Rendulic 3:54

    So I had a nine-hour craniotomy and they successfully removed the lesion. And I am here talking to you and it’ll be 10 years in December that this all happened.

    Bill Gasiamis 4:06

    We have a few things in common. My bleed was three times it was an AVM, but it wasn’t a Cavernoma. The first time it bled was in February 2012. So I’m coming into my 10 years today this week or something like that. And then my surgeon said the same thing after three bleeds.

    Bill Gasiamis 4:26

    They said, well, you know, we’ve had enough, it’s time to get this thing out. And it was really deep in the cerebellum near the cerebellum, not actually in the cerebellum. And the initial people who I consulted with thought it was a little bit too dangerous to get to and they wanted to leave it alone and didn’t want to touch it.

    Bill Gasiamis 4:46

    But this particular neurosurgeon said we need to go there and get it out. So that’s what they did. What was it like going through each bleed? Did you have the thought in your mind, oh my god, what if I have another one? What if I have another? Did that enter your mind? For me, it didn’t.

    Heather L. Rendulic 5:09

    Oh, it was terrifying, to say the least. I also had a ton of false alarms, like where, you know, sure you know, every headache or weird feeling you get, you know, you’re going to the emergency room thinking it’s bleeding again, just to find out oh, no, it’s just all in your head, and we’ll send you home.

    Heather L. Rendulic 5:32

    And then you start feeling crazy, because I was a frequent in the emergency room, and they kept sending me home telling me it was nothing. But the ones I had, four out of the five were very mild symptoms and I recovered rather quickly.

    Heather L. Rendulic 5:51

    You know, I had some vision changes, or I did have some like, tingling on my left side, or just some weakness. But you know, that fifth and final, and I did try after the second bleed, I met with a neurosurgeon in Chicago, who specializes in angiomas.

    Heather L. Rendulic 6:11

    And he recommended I get gamma knife surgery, which I did have. However, it was not successful, unfortunately. But it was also it was a controversial treatment. But at that point, I was willing to try anything.

    Heather L. Rendulic 6:27

    So you know, and then it did bleed, you know, three more times after that. But, um, it’s gone, which I’m happy about, but it was just a crazy time, and to feel like your body is betraying you, your body is failing, your body is letting you down.

    Heather L. Rendulic 6:44

    You know, like I mentioned before, I was a healthy person. I never had any problems, I used to compete in horseback riding, and I was a runner, and just healthy and living a really good life. And this kind of turned it all upside down. It completely changed the trajectory of my life as well. But it was really hard to go through that.

    Bill Gasiamis 7:08

    Let’s have a philosophical discussion. You were 22 so you were young? And I get that. Do you think that the idea that your body was letting you down was just something that comes from ignorance because realistically, there isn’t such a thing as your body letting you down?

    Bill Gasiamis 7:28

    Because your body’s just doing what your body does. And we don’t have a say in what it does, except if we’re living a lifestyle that’s contributing to its deterioration, and its early deterioration, for example.

    Bill Gasiamis 7:43

    So did you find a way to sort of deal with the idea that your buddy was letting you down? Because it’s quite it’s quite a statement, and it feels like a takes you out of control of your environment and what you can and how you can change the trajectory of your recovery. From a mindset perspective. Does that make sense? And just tell me your thoughts on what I just said.

    Invincible

    Heather L. Rendulic 8:16

    Yes. So mindset is everything I talk about in my book, I talk about it when I give talks around the world, but it was an ignorance thing, I think, because when we’re that young, we think we’re invincible you know.

    Heather L. Rendulic 8:32

    There’s no thought of illness or disability or anything, because, you know, I’m young, I’m healthy, like, nothing’s gonna happen to me. And, you know, so it was a wake-up call, I had to grow up a lot during that period.

    Heather L. Rendulic 8:51

    And you know, I remember being in the hospital, I’m trying to relearn how to walk and my friends are out at like fraternity parties, and, you know, doing stuff like that. And it was just it. I’m in the stroke recovery ward with like, people over twice my age, and sometimes three times my age, but, you know, it is a mindset.

    Heather L. Rendulic 9:14

    So what I had to do when I felt like my life was out of control, which it was, you know, I couldn’t control my brain or what it was doing. So I’ve tried to focus every day on what I could control.

    Heather L. Rendulic 9:29

    And it could be as simple as you know, making a plan of the things I was going to get done that day. I you know, or taking control of other parts of my house like making sure I was exercising and eating healthy.

    Heather L. Rendulic 9:43

    Or, you know, for me, I’m also strong Christian, so it was praying and reading my Bible, stuff like that, like those were things that I could grasp that were in my control, and in some way that habit of doing that every day helps me He’s that feeling of absolute chaos.

    Bill Gasiamis 10:03

    Yeah. What is it about religion specifically that makes it better that makes things better? Is it a familiarity is it kind of an idea that there’s a higher purpose? What specifically is about religion, I know that people go to religion, whether they’re Christian, Muslim, Buddhist, or any other religion it doesn’t matter.

    Bill Gasiamis 10:27

    You hear a lot about stroke survivors who found God, who discovered their religion again, or rediscovered it. I didn’t particularly go down that path for me. What stroke taught me was that it’s random, because next to me was a guy who had the same thing that I experienced, but was more severely injured from it.

    Bill Gasiamis 10:53

    And on the other side was another person who had a similar thing and was very slightly injured by it. And I had to have brain surgery and all those things. So I kind of took the approach of stroke as just random, but how did your religion or being able to have religion support you in your recovery?

    Heather L. Rendulic 11:15

    Well, I think you talked about it already touched on this point, it was that there is a higher power, who is in complete control. And, you know, this has all been pre-written, you know, this has all been worked out.

    Heather L. Rendulic 11:31

    And he knows he’s going to use this for my good and his glory, and that he has it in control, like, so again, that control factor that it felt uncontrollable to me, but there was somebody who was in complete control that I could rely on and find comfort in.

    Heather L. Rendulic 11:51

    And that I don’t, you know, I don’t agree with the randomized, you know, because I believe everything is planned, and everything happens, and I don’t believe in coincidences.

    Heather L. Rendulic 12:02

    And, you know, it’s not about oh, if you’re a good person, or you’re a bad person, it’s just about, it’s who you were created to be. And this was part of my story before I even knew it was.

    Bill Gasiamis 12:18

    Yeah, that’s fair enough. And, then is it kind of an adjustment period, it’s like, I thought I was meant to be a 22-year-old at frat parties, doing all the college stuff. And then I was gonna go down this next path, which is going to perhaps be a job in my field so and so.

    Bill Gasiamis 12:40

    But now, you’ve been thrust into this different version of life at 22. The frat party wasn’t what it was meant to be your idea wasn’t wrong. Until that point in time, it was right, for example. And now is just about you learning that you need to adjust, your mindset and your approach to what else is coming that you’re not aware of.

    Heather L. Rendulic 13:05

    Oh, yeah. So I talk about it a lot, that we all have a plan for our lives, you know, growing up, you think I thought I was going to be an accountant. And I mentioned I used to ride horses, and like, I was gonna have all these nice horses and a farm, maybe, you know, and I had this plan.

    Heather L. Rendulic 13:24

    And this completely derailed my plan. And I can’t even ride horses now. But I can still love them. But I, you know, I talked about accepting your new reality. You know, I also still to this day, have no functional use of my left hand. So I joke that I’m living one hand in a two-handed world because there are so many things you need two hands to do.

    Cavernous Angioma Recovery


    Heather L. Rendulic 13:48
    But I am so blessed. I mean, I live a great life. I you know, I graduated from college, I work full time I’m married, and I’m hoping to start a family. I you know, I don’t let it hold me back. I’ve accepted one of the hardest parts of my recovery was accepting that this was my new plan, that this was my new reality.

    Heather L. Rendulic 14:10

    And I think we have to do that. Because if you don’t, then you’re just gonna be constantly disappointed and let down then you’re gonna be depressed and we just have to accept that this is it. So what am I gonna do with it? And am I going to be depressed? Or am I going to make the best of it?

    Heather L. Rendulic 14:27

    What I talked about in my book, as well as kind of an analogy is to adapt, improvise, and overcome. So you have your plan and I equated to when you’re driving to work, you have the route you take every day, you know it by heart, and you can do it with your eyes closed. I did not recommend that.

    Heather L. Rendulic 14:47

    But you could do it. And you know exactly what turns to make and you know, what traffic’s gonna be like usually. And then there’s road construction and they close one of the roads on your routes.

    Heather L. Rendulic 15:03

    And at first, you’re like, oh, my gosh, this is horrible. Like I wasn’t expecting this, I wasn’t planning on this. And you’re freaking out because you’re going to be late for work. This is just like ruining your whole day.

    Heather L. Rendulic 15:16

    But you take the detour route, which usually has outlines, and you if you still get there, you might be a couple of minutes late. But so you adapt by taking this new route that might not have been in your plan, but you have no other choice. So you’re adapting to it, then you might have it might be a little bit of a longer route.

    Heather L. Rendulic 15:37

    So you have to improvise in your life, you have to maybe get up a little earlier, or have an extra cup of coffee, so you can leave the house early and get to work on time. And so you’re doing this for months and months and months.

    Heather L. Rendulic 15:50

    And if anybody lives in southwestern Pennsylvania like I do, it can take years, it seems for roads to be opened back up, but, you improvise, and then it comes to the point that you get so used to your new route and your new routine, that you have overcome that.

    Heather L. Rendulic 16:10

    Because now you can do that in your sleep. And you again, I don’t recommend and you you’re used to it, and you’ve adapted and you’ve improvised so then you overcame the situation, and then your old road opens back up and you have to make that decision, do I even want it maybe this route is prettier, or I get to drive by, you know, a coffee shop on the way to work now.

    Heather L. Rendulic 16:34

    So I can grab a coffee on my way to work. So it might end up being better. We don’t know, it’s just that first, that initial reaction is always down and disappointment and frustration. But we don’t know what this new route is going to do. It might end up being more beautiful.

    Intro 16:50

    If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. How long will it take to recover? Will I recover? What things should I avoid in case I’ll make matters worse?

    Intro 17:07

    And doctors will explain things that, you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you.

    Intro 17:30

    It’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery, head to the website. Now, recovery after stroke.com and download the guide. It’s free.

    Bill Gasiamis 17:53

    So basically, what you’re saying is that it’s a time for adjustment. And just seeing what’s possible in this new approach this new route, this new way of life, it’s not necessarily worth it’s just different.

    Bill Gasiamis 18:10

    We just have to come to terms with the understanding that we are the ones who have to make the change to adapt and overcome the new challenges or the new obstacles that are in front of us. And I completely agree with that. That’s exactly what I did. And isn’t it great? I mean, if religion can get you to that. I think it’s amazing, that’s fantastic.

    Bill Gasiamis 18:34

    And it’s not that I’m completely not religious, we’ve grown up in a religious household. And I suppose I may have drawn on my upbringing to kind of start to guide my path forward for my recovery. And then I was a bit a little bit older than you. So at 37, I was able to bring in other life experiences and other lessons learned from elsewhere so that I could make a solid, new trajectory that I could follow and that I could be comfortable with.

    Bill Gasiamis 19:13

    And then I did a lot of checking back with other people about how I was going what I was doing, what can I change? I went and got re-educated in areas of, you know, mindset coaching emotional intelligence, doing things that I loved, and stopped doing things that I didn’t like.

    Bill Gasiamis 19:33

    And I haven’t let it stop me either. But I can see how it might stop some people. Did you come across any other stroke survivors in the time that you were in your early stages of recovery? Because 22 I imagine there would not have been many, and therefore did you have many examples of people at a similar age to you that you were able to draw on?

    Heather L. Rendulic 20:00

    Yes, so I did meet several people. I mean, again, not maybe the similar age, but I, you know, made friends with people, I’m just a people person, I love to talk to people. And, you know, in my life recovery, like in the rehab centers when I was like learning how to walk again, you know, I’m spending a lot of time day in and day out with these people.

    Heather L. Rendulic 20:24

    So we ended up talking and we did feed off of each other on just, you know, how to cope with this new normal, and I think life is a series of that, like, it might not be to this severity.

    Heather L. Rendulic 20:43

    But you know, it is I, you know, you maybe even your job, for example, like, you dream of having this dream job, and you’re making all this money or CEO or something. And it’s like, okay, my job is not that I am not a CEO, but you know, I am content with where I am, because that is where I’m supposed to be right now.

    Heather L. Rendulic 21:09

    But people especially in recovery, I think having that support system to talk to, you know, I have a great family that surrounded me. And actually, my parents write a couple paragraphs at the end of each chapter in my book, because they wanted to give their perspective as a caregiver.

    Having A Support System – Heather L. Rendulic


    Heather L. Rendulic 21:27
    Because it’s not just the patient or the victim, the whole family goes through it. And it just adds a unique perspective to help families get through trials and tribulations. But you know, having I had them, which obviously, they were a great support. However, they had never gone through something like I had gone through.

    Heather L. Rendulic 21:50

    So when I would get frustrated with my disability or not being able to do things I used to be able to do. They, couldn’t fully understand what they were trying to understand, but you know, that they don’t, and you want to talk to somebody who like actually understands us.

    Heather L. Rendulic 22:08

    So I did this through Angioma Alliance, which is a nonprofit for people with cavernous angioma, their international now. I’ve connected with so many people through there, I just got off the phone with somebody today who’s about to have brain surgery. She is around my age, and she wanted to talk to somebody about my experience. So having that is key.

    Bill Gasiamis 22:35

    That’s amazing. That’s exactly what I needed. So I came across somebody who I’m pretty sure had an aneurysm rupture in the back of their neck when they were in their early 30s. The guy was driving a truck at the time, and had the episode in the back of his neck, drove into a poll, and smashed the car.

    Bill Gasiamis 23:02

    The police attended in the ambulance, and they all thought that he had taken drugs and as a result, smashed the car. And it was a work truck, so it had the phone number of the business on the side.

    Bill Gasiamis 23:20

    And it was his dad’s business and they rang his dad and they said to him, listen, your son’s been involved in an accident, you know, what drugs has he been on? And Andrew had never been on drugs. And his dad said he’s not on drugs. He was just at the factory now he just left you know? What’s happened?

    Bill Gasiamis 23:39

    They eventually got to the bottom of it. They found that he had blood on the back of his head. And they got him to surgery. They managed to keep him alive and he survived. And he went through a whole bunch of rehabilitation and I’m pretty sure it was many years later he was back on his feet.

    Bill Gasiamis 23:58

    Now I didn’t know the guy yet. He and I intersected when I met his sister and explained to her what I’d been going through and then a week from the day that I met her I was going to be going into surgery. And then she just said to me well, my brother has had a similar experience.

    Bill Gasiamis 24:18

    And he was in surgery and he’s doing well now. I had never met anybody who had a stroke and had surgery and I said to her, I need to meet him can you please put us in touch he lived near me. So sure enough, she put me in touch with him.

    Bill Gasiamis 24:35

    And I met Andrew and went through this conversation and after meeting him it was like, whatever happens in surgery, things are gonna turn out fine. No matter what I wake up with that I have to overcome I’m gonna be it’s gonna be fine. It’s doable. Brain surgery is a doable thing for people you know.

    Bill Gasiamis 24:53

    And I met Andrew in 2014 in November of 2014. We’re still great friends now. Now we have a lot in common, obviously, and he understands me completely, and I him. And it’s just a positive thing that happened to have this conversation with somebody who had been through what I’d been through all the hard times, and then all the recovery, and then had gone back to life.

    Bill Gasiamis 25:19

    And I think Andrew had been less than 10 years. But I saw the full spectrum of the stroke, then the really serious part of the surgery, and then life after the stroke, and then recovery. And luckily for Andrew, he didn’t end up with any deficits on his left or right side.

    Bill Gasiamis 25:39

    But, you know, he had to overcome a lot to get back to a full life, and his perspective on how much work he needs to do these days and how much stress he needs to put himself through and whether he does things that he hates or loves.

    Bill Gasiamis 25:52

    And one of the hardest persons to get in touch with and catch up with for a coffee is Andrew because of course, what he’s doing is he’s making sure that he’s spending time with his wife, his children, being around as a dad, he doesn’t work on Saturdays, if he can avoid it with a passion, of course, it doesn’t work on Sundays.

    Bill Gasiamis 26:13

    And he goes out of his way to just be a family man and a dad. And as a result, I miss out on catching up with him now, not that I miss out and I’m concerned or it’s a problem for us. We speak over the final lot. But that’s kind of, he’s brought it down to all these basics of life, all these let’s do the bare minimum, and let’s focus on being present alive.

    Bill Gasiamis 26:43

    Hanging out with the people we love. Supporting them, teaching them his dad who’s in his 80s Still works at the business and he spends quality time with his dad, they go away for a minimum of six weeks, every summer.

    Bill Gasiamis 27:01

    You know, so he’s done that whole thing. He’s still leading by example for me. He’s a younger guy than me, but he’s still leading by example. And he has led me through this path in such amazing ways. And it’s the thing the gift that you gave to somebody by just talking to them.

    Bill Gasiamis 27:23

    I think that one of the best things you can do is show the person on the other side. I love that you did that. And what a relief it would be for that person going into surgery knowing there’s one less thing that they have to worry about.

    Heather L. Rendulic 27:42

    Well, I think a story that jumped out while you were talking about Andrew was that before my brain surgery, I got not much notice I only had a couple of days because after the fifth hemorrhage was so big, I was in ICU like fighting for my life. And they were like, we have to do this in like two days.

    Mind And Body Connection – Heather L. Rendulic

    Heather L. Rendulic 28:03

    So I didn’t have much time to sit and worry, oh my gosh, what about brain surgery? But we were talking about mindset earlier. And I strongly believe that the mind and body are connected. And I always tell people to set their minds to success before any big trial.

    Heather L. Rendulic 28:26

    Just like and I think what Andrew did for you is he let you see that there is life on the other side of this and you’re going to be okay like when he said you’re gonna be okay, no matter what happens in surgery. So you went into that surgery feeling more confident.

    Heather L. Rendulic 28:44

    You went in saying I’m going to be okay. That plays a huge role because I so before my surgery, I decided my surgery was a year before my sister’s wedding. And I was at her wedding, well supposed to be at our wedding. I was hoping to still be at her wedding.

    Heather L. Rendulic 29:03

    But the neurosurgeon came into my room to give me the lowdown of the risks, and you know, you might not be able to walk ever again. You might, you know, not survive the surgery, you might be a vegetable, you know, we don’t know what’s gonna happen.

    Heather L. Rendulic 29:19

    You might be in a coma for a while it was the odds were against me in a lot of areas, but I just had this sense. And I kept telling myself that I kept picturing myself at her wedding a year from then dancing. And I don’t know why but that’s just what was in my head.

    Heather L. Rendulic 29:41

    And I kept resonating with that because it gave me the confidence to go into this and that I was going to be okay. And I went into that surgery. I came out I was in recovery and I was hooked up to all the machines in the hospital I swear, and my family was surrounding my bed and there, I was slowly waking up for anesthesia.

    Heather L. Rendulic 30:03

    And there sobbing, my sister is sobbing at the foot of my bed. And I remember waking up, I’m groggy, but I looked at her and I said, Oh, quit, you’re crying, I will be dancing at your wedding. And sure enough, I was. And so I just want people to know that you know, set your mindset on that success, like set it and know that you’re going to achieve it, and then the rest will follow soon.

    Bill Gasiamis 30:32

    So question, that is hypothetical, what if you weren’t dancing at the wedding? You were at the wedding, but what if you didn’t get the opportunity to dance because your recovery hadn’t come that far yet? What then?

    Heather L. Rendulic 30:46

    It would have just been another change in plan. You know, like I said, life is a series of those. Yes, I would have been disappointed. But if anything, I think it would have motivated me more to keep moving because I was there, which was a huge miracle in itself.

    Heather L. Rendulic 31:05

    And what else is on the horizon? And what other possibilities are out there? And I worked hard every day in my recovery, I would, you know, once I got home from the hospital from inpatient rehab, I every day said it, you know, I was gonna do a little bit each day towards my recovery.

    Heather L. Rendulic 31:27

    And that way, like, I mean, there’s a chance that a couple years from now, I’m still in a wheelchair, and I’m not walking, and all this hard work would have been wasted. But I knew that I’d rather find out that way, than not try at all, and then wonder what if, you know, looking back.

    Heather L. Rendulic 31:47

    And so it did take me a year to learn, like to be able to walk without a cane. And then I did have like an AFO like a brace, I work on my leg to help. I had that for another year or two. And then now, you know, I walk completely, unassisted.

    Bill Gasiamis 32:06

    You sound like a positive, upbeat kind of person, glass, half full, all that type of stuff. But there would have been real tough times and dark times were there? And did you take them badly?

    Bill Gasiamis 32:20

    Did you have to go through the bad mental states and all that kind of stuff? How was the lead up to this other side of you, which we’re all seeing now we’re seeing the positive, upbeat, reframing everything I imagined it wasn’t always like that?

    Heather L. Rendulic 32:40

    It was not it still isn’t I you know, it’s not all sunshine and rainbows. And I still have my days. And there were, I mean, during with before my surgery, when I was having the bleeds, and I didn’t know what was gonna happen. You know, there was a time I contemplated suicide, I was in a dark place.

    Heather L. Rendulic 33:01

    I was questioning my faith, I was questioning everything I’d ever believed in. And I, I, I talk that, you know, we’re human. So these are natural emotions. And I think everybody needs to allow themselves to feel those. But, you know, we can’t say there. So what I do now, is, I still have days, like I said earlier, I still don’t have functional use of my left hand.

    Heather L. Rendulic 33:30

    So every day is a struggle. You know, I, there are things multiple times in my day that remind me of my disability and things I can’t do. But that’s okay. And I have my moments, you know, where I get down, and I think like, this isn’t fair, and I’m frustrated.

    Heather L. Rendulic 33:47

    And, you know, I see other people who have two functioning hands, and I’m like, you know, I missed that, or I wish I could do that. And I allow myself those moments. And, but I don’t say they’re long. Because then I feel like that becomes a habit. I feel like happiness is a choice.

    Heather L. Rendulic 34:08

    And so every day I try and choose to be happy and grateful. And I think what I went through has changed my perspective, like Andrew, I, I see life in a different light now, you know, it’s more precious. It’s, you know, now I know I’m not invincible. So I know that, you know, life is short, and it could change at any given moment.

    Heather L. Rendulic 34:32

    And without warning, so I appreciate the little stuff. And I try to live each day like it’s my last because I might be I have no idea but no, I think it is not all sunshine and rainbows and it can be really hard. And that’s normal. And I think people need an outlet for that.

    Heather L. Rendulic 34:52

    So whether it’s journaling or venting to a friend, I always recommend healthy outlets not like drugs or alcohol. But because that’s just gonna cause more problems in your life.

    Heather L. Rendulic 35:05

    But, you know, you have to find what works for you. Because everybody is different. For me, it’s, you know, praying and worshiping and taking my crazy dog on a walk and just having quiet time. That to me is therapeutic.

    Bill Gasiamis 35:23

    Your dog wouldn’t appreciate you revealing that it’s crazy on the podcast, would it?

    Heather L. Rendulic 35:29

    Yeah, though, I think he knows. Because he’s cute. And he knows that he’s cute. So he can get away with some stuff that other dogs would not but he did just look at me, so he is laying on the couch right now. But there is a high possibility during our time talking, he will start barking at something. So just warning me.

    Bill Gasiamis 35:50

    Okay. All right, well, we can allow for that problem. So you can be happy. As a mindset, you can choose happiness, but you can have a shitty day. And you can feel bad. And it sounds like as long as the negative times that you allow to come up are fleeting.

    Bill Gasiamis 36:15

    As in, they’re there, they reveal themselves, they let you know. And then you just kind of let it ease and pass and go away, and then come back in another form when it wants to later if it wants to etcetera.

    Bill Gasiamis 36:29

    And I do often think back and because it’s my 10 years, this week, I’m constantly trying to go back to remembering what it was like for me before the stroke. And it wasn’t that much different. But things felt different, you know, the body was different, supposedly perfect, or, you know, normal, or whatever it was.

    Bill Gasiamis 36:56

    And it’s never really been like that for 10 years. So now I do have also what you say this constant reminder. Not that I remember my left side in a way that ah yeah, I had a stroke, it’s it’s not that I remember the stroke. It’s what I experienced that it was doing to me on that day.

    Bill Gasiamis 37:19

    And it’s like, you have to rest because your left side is tired now. So it’s kind of more a reminder like that. It’s telling me things that I need to be aware of, that I need to take action on, or that I need to stop doing.

    Bill Gasiamis 37:33

    And sometimes when I want to keep going, it’s when I get frustrated and go, crap, I wish I could keep going now, instead of not being able to keep going. I noticed that when I’m being physically active, and I’m tired, so when I’m physically active, but the tightness hasn’t kicked in yet.

    Bill Gasiamis 37:56

    It’s like it never existed. Like it’s like I haven’t got those deficits, but then later, as the physical activity tires me out, it’s like, okay, you’re tired now, pay attention. Stop. So that’s kind of my daily reminder, it’s a reminder of what I have to avoid doing or stop doing. Rather than, by the way, remember when you were different 10 years ago? Do you relate to that?

    Body Awareness


    Heather L. Rendulic 38:24
    Oh, yes, I mean, I don’t anymore, I used to earlier on and like remember what it was like, using my left hand. And now not so much. I was a part of a clinical trial over this past summer for spinal cord stimulation. And I was the first person in the world to get it.

    Heather L. Rendulic 38:47

    But they’re testing it. They’ve been using spinal cord stimulation for people with chronic pain for years, but they’re now trying it on people who’ve had strokes and have arm and hand weakness or deficits. So I had great success.

    Heather L. Rendulic 39:03

    I just got my permanent one I had my surgery back in November. And when I have it on it does give me like probably 10% improvement in function which doesn’t sound like much to some people but to me, that’s like a lot but like I’ve accepted the fact that I’m never going to be what I was before.

    Heather L. Rendulic 39:26

    Like my left arm like it’s just not and but back to your question about you know, I get you to know, the neuro fatigue still and I get my body tells me you know times like you said it’s not so much as a reminder but an alert to like you need to take it easy and it can be frustrating at times because sometimes it happens but like not the greatest moments and you’re like on vacation or you’re like out with your friends.

    Heather L. Rendulic 40:00

    It’s like, okay, this isn’t the time and, but you know, our bodies, they are on their clocks. And you know, we have to listen to them. And I’d say my biggest thing is, throughout my day, the reminders of what, like, I can’t do.

    Heather L. Rendulic 40:19

    And I always again, try to reshape my focus to what I can do like I am with the amount of brain hemorrhages I had, and especially the last one, how severe it was, I am so lucky to be able to be doing what I do.

    Heather L. Rendulic 40:34

    Like the fact I could walk the fact that I could talk I wasn’t cognitively affected, you know, I’m able to drive I’m able to work full time, like, I try to reshape that when I’m getting down on what my left hand isn’t doing is to what the rest of my body can do that, you know, medically speaking, probably shouldn’t.

    Bill Gasiamis 40:59

    Yeah, yeah. Tell me about your husband.

    Heather L. Rendulic 41:04

    My husband has a disability himself, he is hard of hearing. It’s actually kind of how we met and connected as we were just talking about disabilities in living in a world of, you know, people who can be kind of ignorant sometimes. He works in IT, and I work in HR, as I mentioned already, and he is a godsend.

    Heather L. Rendulic 41:34

    I mean, I was married once before, early on in my recovery, and it turned out to be a toxic relationship, unfortunately. And so we, you know, divorce, and I met my now husband, who has been like the answer to all my prayers. And he’s a funny, amazing guy.

    Heather L. Rendulic 41:56

    And I told you about the crazy dog. But we hope to start a family sometime soon, within the next year, hopefully. And yes, I do freak out about my disability and how I’m going to be able to do that.

    Heather L. Rendulic 42:08

    And I’m sure you know, my neuro fatigue, I’ve thought like, okay, how am I going to function on like, two hours of sleep, but I just know, I’m going to figure it out, you know, like I talked about earlier, you just, sometimes you just gotta say I have no other choice. Like you got to figure this out.

    Bill Gasiamis 42:26

    There are lots of first-time mums and dads who have had children after the stroke, or just before the stroke. And yet people adapt, right, we’re adapting amazingly different ways all the time to get through whatever we have to get through. And it might be a little bit harder for some people.

    Struggling With Acceptance

    Bill Gasiamis 42:49

    But in the end, you find your way like there’s no right way to raise a family, there’s no correct path. Everyone does it their way. So you’ll find your way, and you’ll be able to manage it well. On the one hand, there are so many people on the planet who are doing that, especially stroke survivors, I’m sure you’ll be able to reach out and find somebody to share stories with.

    Bill Gasiamis 42:49

    I know I’ve interviewed a few people who have been through stroke, just after childbirth, and just before childbirth. So I think you’ll be fine. You’ll you’ll work it out. The reason I asked about your husband, amongst other things was to get an understanding of what it’s like dating because a lot of people who go through what you’ve been through,

    Bill Gasiamis 42:49

    And those who have obvious disabilities or deficits, struggle with a mindset about how can somebody date me, you know, I’m not perfect, or I’m not right, or this, you know, why would somebody want to date me? Did you have those types of thoughts going through your mind? And how did you overcome them? If you did?

    Heather L. Rendulic 43:58

    Well, absolutely. I mean, when I got divorced, from my first marriage, I was disabled. And that was my first thought who’s going to accept me for who I am? And you know, I need a little extra help around the house sometimes, like opening jars, which I think a lot of women do.

    Bill Gasiamis 44:17

    Even I do that let’s be honest, I mean, the jar wide open sometimes, like, just doesn’t want to open.

    Heather L. Rendulic 44:26

    I know, I swear they do that. And then he comes in, it’s like really easy. And I say, well, I loosened it for you. But it is tricky to do. But that was my first thought and my encouragement to those people wondering that I eventually had to just tell myself, you know what, there’s not one perfect person out there on this planet right now.

    Heather L. Rendulic 44:52

    And we all have our things and, you know, I got lucky to meet my husband who has also a physical So, he doesn’t even see my disability. Like, I’ll say, I have a disability. And he’s like, No, you don’t.

    Heather L. Rendulic 45:08

    And you know it. When you find the right person, they don’t see that stuff. Yeah. And they see you for what’s inside. And, you know, I can be even a little crazy sometimes.

    Heather L. Rendulic 45:20

    And he loves that. So, nobody is perfect. And, you know, it’s so special to find that person who sees you for what’s inside and sees your heart and your soul. And it’s just, you know, don’t be afraid, because there is somebody out there that is gonna think you’re the most perfect person on this planet.

    Bill Gasiamis 45:45

    Yeah. Is it about self-love? Is it about accepting yourself? I know that I’ve come to accept the way I look how I am and how I behave. Not that I behave like a crazy or idiotic person or anything like that. I’m not rude or obnoxious or anything. But just my personality, I know, rubs some people up the wrong way.

    Bill Gasiamis 46:11

    And it’s just because I’m, well, I’m outgoing and outspoken. And I am an extrovert. So is it about self-love? Because the more that I accept myself, the more I seem, it seems to be that other people just sort of accept me or don’t. And if they don’t, they don’t take it the wrong way.

    Bill Gasiamis 46:37

    They just go oh I couldn’t hang out with Bill is too full on or is too in my face, or he’s too outspoken, or he wants to know too many answers to many questions. Does that resonate with you?

    Bill Gasiamis 46:51

    Is that how you move from being somebody who was concerned about whether people would love them? To them becoming somebody who was like, Yeah, sure, I’ll find somebody, it’s a matter of time.

    Heather L. Rendulic 47:03

    It’s 100% self-love. I mean, you just hit the nail on the head that I had to, you know, love myself for me, except to I am. And I just said, this is, this is me, like, I can’t change my disability. Unfortunately, if I could snap my fingers, I would, but I can’t. And I’m just going out there.

    Heather L. Rendulic 47:27

    And you know, somebody is either gonna take it or leave it. And you know what, that’s okay. Like, if they want to leave it, because this is me, I can’t change it. And this is who I am. And I think people wholeheartedly have to love themselves before they’re able to allow others to love them. And to have that identity and to be your authentic self. You know, I think it’s really important before going out and dating.

    Bill Gasiamis 47:56

    This is gonna be an interesting question for you, then you said you would if you could snap your fingers, you would change it so that you don’t have your disability anymore. But the question is, would you do that? Would you really snap your fingers and change it and go back to the non-supposedly disabled person?

    Heather L. Rendulic 48:19

    That’s a great question. Would I? No, I wouldn’t because I don’t want to take away what I went through. Because it has shaped me into who I am today. And I’m proud of that person. I am so proud of myself. Like, I, I mean, I have a long way to go in a lot of areas.

    Heather L. Rendulic 48:47

    But overcoming what I overcame is one of the things I’m proud of. And now would I make it maybe a little less disabled, but not fully yes? But I like to still have that reminder that you know, it was real and what I went through, it was tough. But, no, that’s a great question.

    Heather L. Rendulic 49:09

    And it’s funny, my husband is the same way with his hearing, he lost his hearing, like as a baby, we think he’s had it all he can remember and he wears hearing aids. But he’s still you know, has a lot of trouble and it’s, it’s hard for him every day is hard in certain situations.

    Heather L. Rendulic 49:27

    But I’ve asked that question. Like, if you could snap your fingers and he’s like, No, I wouldn’t like to change it and this is just, you know, who I am well, he jokes that he likes to sleep too much. He likes to take his hearing aids out at night and he doesn’t have to hear anything.

    Heather L. Rendulic 49:43

    He just sleeps like a baby so, no, I That’s a great question. Because like, I am like, this doesn’t define me but what I went through is just something such a part of who I am as my personality, my strength, you know, I don’t think I would ever want to erase that.

    Life Lessons In Cavernous Angioma Recovery

    Bill Gasiamis 50:05

    Yeah, think about it. I mean, if it wasn’t? Well, let’s not think about all the other possibilities of what things might have happened between the age of 22 for you and now, but say you hadn’t had the stroke, you wouldn’t have had that deep understanding of the dark times, the good times.

    Bill Gasiamis 50:23

    How to allow the dark times to present themselves and how to overcome them, and what lessons you need to learn from them, and all that kind of stuff, that all those lessons would have been yours to still learn at 32.

    Bill Gasiamis 50:37

    And it’s like, oh, wow, like, I picked up a lot of these lessons when I was 22 when most of the time at 22 were ignorant to the majority of what life is about. And we think that the worst things that have happened to us, you know, happened to us when we were in high school or whatever, but we don’t understand what else is to come in life, I was a data 21.

    Bill Gasiamis 51:01

    So at 21, I learned all the lessons that you have to about being frugal about working a little harder, you know, tightening your belt about the children about keeping the food on the table, I had to learn that early. And it’s kind of saved me from learning it in my 30s, or 40s, or whatever it was, that a lot of other people do.

    Bill Gasiamis 51:26

    And for me, what that taught me was that is better to learn the hard lessons early so that you have the wisdom of them later on in life when you’re gonna need the wisdom. Like when you have a time stroke, you know, you need to draw on some previous life experiences to help you get through the challenges of a stroke and overcome the stroke.

    Bill Gasiamis 51:54

    So, I love throwing that question out there. But would you really because I’ve asked so many people that question, and very few of them say 110%? Yeah, I would get rid of it. And I wouldn’t want to have the experience because most people even after a few years, or even months, but definitely after a decade can look back and go.

    Bill Gasiamis 52:25

    It shaped me I’ve grown, I’ve learned to lesson I’ve overcome I now know how to guide and advise other people who are going through something similar. So I love that that question made you think and hopefully it’s making people listening and watching think as well about that, about what they can take out of it.

    Bill Gasiamis 52:47

    And sure if we can wind down with dialing down the disability part and the the tough days and make them a bit less tough. Yeah, I reckon I would do that too. But most of what I’ve learned has been useful. And even learning how to deal with that constant reminder of your left side doesn’t do what it used to do differently.

    Bill Gasiamis 53:12

    Even learning how to deal with that and overcome that is a great thing to overcome, that’s change that’s been thrust upon me that I’ve got a manage because I didn’t choose it. So I’ve got to learn how to just get on with it and still do my podcast and still do all the things that I want to do regardless and not let it get in my way.

    Headstrong Through Life Love and Brain Surgery By Heather L. Rendulic


    Bill Gasiamis 53:33
    So I imagine that those 10 years of lessons that you’ve learned have made for a very rich book, you’ve referred to a couple of times, and I want to ask you about the book. It’s called Headstrong Through Life, Love, and Brain Surgery.

    Bill Gasiamis 53:53

    How did it come about? How did you get to the point where you decided you were going to write a book? It’s a very common theme in the stroke survivor community, which I love.

    Heather L. Rendulic 54:04

    Yeah, I think it was within the first year after my show. My parents and I were talking and just we kind of it was I don’t want to say it was a joke, but it was like a very, like light kind of statement.

    Heather L. Rendulic 54:19

    Oh, we should write a book. And, you know, but I couldn’t do it at that time. I was so focused on my recovery. And I don’t think, you know, mentally I could have handled the stress of writing a book.

    Heather L. Rendulic 54:33

    So it went on and you know, every year we would kind of just say in the background, maybe at a family dinner or something. And then I met a gentleman who’s in Australia who helps people write books and Andrew Jobling, okay, he’s he’s written like eight or nine books now by himself he’s a best-selling author

    Heather L. Rendulic 54:59

    He helps people write books. He’s a speaker, a great guy. And we got connected through a mutual connection. And I was like, This is my sign that you know, I just need to do this because I learned so much about mindset about overcoming challenges that I wanted to help other people.

    Heather L. Rendulic 55:25

    Because, I mean, the truth is, we all go through challenges. You know, life sucks sometimes. But, you know, I talk about that my real motto is we can’t control what happens to us, but what we can control is how we react to those situations. And I just wanted to get that out there.

    Heather L. Rendulic 55:46

    And then I started writing I mentioned earlier that my parents co-authored, they have a couple paragraphs at the end of each chapter giving their perspective, and I talked about not just my show I talked about how it’s a true memoir, I talked about the beginning of my life, you know, to I talk about I went through severe depression and middle school. I even went through some self-mutilation.

    Heather L. Rendulic 56:13

    I talked about some relationships I had that I feel shaped me as a person early on. I you know, I mentioned my divorce, I talked about that. And obviously, the bulk of it is my strokes and the brain surgery, and then my recovery from that. And I just wanted to help people, you know, and that’s where it was birthed out of.

    Bill Gasiamis 56:40

    Lovely place for it to come from. So Andrew Jobling is probably well known in Australia, not by me, but he was a team member of a football club in Victoria, which is football-mad, in the state of Victoria. And so Australia, really, the St Kilda Football Club.

    Bill Gasiamis 57:03

    And he’s 57 years old now. So there’d be plenty of people that know of him. And he shifted from a football career to this interesting career, where he helps people with all sorts of things he says empowering you to live a life of joyful longevity.

    Bill Gasiamis 57:26

    He is an author, who has published eight books and is on a mission to inspire people to live a purposeful life of joyful longevity. He’s also been a cafe owner and a public speaker. Wow, what a guy.

    Heather L. Rendulic 57:44

    he’s a busy guy, but he is the most down-to-earth person. So sweet. I, he’s my mentor, I still talk to him. Even though my book was published, I did start writing my second book now. And I, you know, talk to him frequently. And he’s, uh, he’s part of my family. He did come over to the States to visit right before COVID head. We got to spend a week with him here and just all around great guy, anybody who’s looking for a mentor in any way in their life, he’s the person I would recommend.

    Bill Gasiamis 58:21

    Wow, that’s pretty cool. So was it a long time? Did it take a long time to get the book complete and published, I’m talking about the writing and the creative part of the book.

    Heather L. Rendulic 58:35

    The writing took probably a year and a half, but I made it and something Andrew had taught me was to do a little bit each day. And some days, that was two words, some days, that was 1000 words, you know, it varied you know, based on where I was at.

    Heather L. Rendulic 58:57

    But I also kept like a notepad with me anywhere I went, because like, I would be at work or, I don’t know, in a car and like something like an idea would hit me and I would have to jot it down so I didn’t forget.

    Heather L. Rendulic 59:12

    It took some time, but it wasn’t, it wasn’t as long as I thought I thought working full time was gonna take forever. But doing a little bit each day helped. I got it done in about a year and a half. And then it took me about half a year to get a publisher. I didn’t do a traditional publishing.

    Heather L. Rendulic 59:31

    So I did find a publisher. And that took some time and that was hard. Because, you know, I sent my book to my manuscript to a lot of different publishers and I got a lot of nos at first and you know, it, it was kind of deflating and you get worried like, Okay, well maybe, this isn’t gonna get published and I just put all this work into it. And then you know, the right one comes along and It just worked out beautifully.

    There Are Many Ways To Succeed

    Bill Gasiamis 1:00:03

    Fantastic. Well, it just goes to show you, that it’s about really putting your mind to something and just going for it. And then finding solutions as the problems come up. And you are just giving yourself another way to get to a successful outcome. I mean, if you haven’t got in mind only one way to succeed, then you’re most likely going to succeed.

    Bill Gasiamis 1:00:26

    Because that’s I think what lets me down, is if I choose that I’ve got one only way to succeed, then there are more chances that I’ll fail at succeeding. But if I’ve got many ways to succeed, then that’s fine as well, then, if one doesn’t work out another one self-publishing is one of those ways to succeed in a book writing world where a publisher doesn’t take up the book.

    Bill Gasiamis 1:00:48

    Yes, it’s a slightly different challenge. And it’s a bit longer and it’s harder, perhaps, and it’s more expensive. I don’t know what, but in the end, you can still publish a book, if that’s the most important thing to you if you need to get it done.

    Bill Gasiamis 1:01:02

    I love that. And, interestingly, you find all the people from all around the world, somebody so far away, on the other side of the planet in Australia. That’s strange when you would thought there were plenty of people to support you just near where you are.

    Heather L. Rendulic 1:01:21

    Yes, it was, you know, nothing I would have expected. And like I said, I don’t believe in coincidences, I believe God sent him to me. And he tells everybody and I want all your listeners to know that there is a book inside everyone.

    Heather L. Rendulic 1:01:36

    I mean, even if you haven’t had a stroke, or, you know, it was your family member, there’s always a story. And, you know, he helps all types of people. It’s just amazing. And, I had no idea where to start. I think that what held me back for so many years, was I didn’t know.

    Heather L. Rendulic 1:01:58

    I like to write People told me I’m good at writing emails. But I, you know, I don’t sit and write for fun. But I’ve always liked writing like when I was in college. But you know, I never dreamed of being an author. It’s not something I grew up saying, Oh, I’m going to be an author.

    Heather L. Rendulic 1:02:18

    But it was something that came from what I went through again, why would not erase it because then I wouldn’t be sitting here as an author? But it’s everybody has a story. And sometimes you have a story that somebody needs to hear.

    Bill Gasiamis 1:02:33

    Yeah, I love that. If any of the aspiring authors out there don’t know where to start, start by writing a lovely email to somebody and practice your emails, making them the most fantastic emails that ever existed.

    Bill Gasiamis 1:02:50

    I love it. Well, thank you so much for being on the podcast Heather I appreciate it. We had a lovely chat, it was great to get to know you. I hope the book does well. I’ll have links to your book your website and your Instagram for people who want to reach out or connect or find the book.

    Bill Gasiamis 1:03:08

    They’ll be able to do that. But if people are listening, and they haven’t got a chance to check out the show notes, where is the best place for them to find you and your book?

    Heather L. Rendulic 1:03:20

    Well, my website is heatherheadstrong.com. And there is a link to my book on there, there’s a contact form you can it’ll get straight to my inbox so you can practice you’re really good email.

    Heather L. Rendulic 1:03:33

    And I’d love to hear from anybody, my book is on Amazon and anywhere books are sold. There’s an audio version as well if someone prefers to listen, rather than read, if somebody wants to reach out to me and get a signed copy of my book, I’d be happy to do that as well. So reach out. And Bill, I thank you so much for having me on. It’s been a pleasure.

    Bill Gasiamis 1:03:58

    And thank you for being on the podcast. I appreciate it and all the best with all your future projects.

    Heather L. Rendulic 1:04:05

    Oh, thank you very much.

    Bill Gasiamis 1:04:07

    Well, thanks for listening to another episode of the Recovery after Stroke podcast, please like, share, give the episode a thumbs up if you’re on YouTube comments, and leave some kind of interaction with the podcast, it’ll help it rank better, and therefore be found easier by stroke survivors from all around the world.

    Bill Gasiamis 1:04:26

    And hopefully, that’ll make them have a slightly better stroke recovery than if they didn’t find the podcast. Also, I love hearing from people so if you’d leave a comment, I will respond.

    Bill Gasiamis 1:04:38

    I like getting feedback from people telling me what the podcast meant to you what the particular episode was that made a difference for you anything that you like, just feel free to reach out and let me know. Thanks so much for listening and I look forward to bringing you the next episode soon.

    Intro 1:04:57

    Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals that pinions and treatment protocols disgusting any podcast or the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

    Intro 1:05:14

    All content on this website at any linked blog, podcast, or video material control this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis. The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.

    Intro 1:05:37

    The information is general and may not be suitable for your personal injuries, circumstances or health objectives did not use our content as a standalone resource to diagnose, treat, cure, or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.

    Intro 1:05:51

    Never delay seeking advice or disregard the advice of a medical professional, your doctor, or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be, call triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.

    Intro 1:06:16

    Medical information changes constantly. At the same time, we aim to provide current quality information in our content. We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency, or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with the links we provide however third-party links from our website are followed at your own risk and we are not responsible for any information you find there.

    The post Cavernous Angioma Recovery – Heather L. Rendulic appeared first on Recovery After Stroke.

    1 hr 8 min

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A Community And Podcast For Stroke Survivors And Carers

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