Recovery After Stroke

A few days later, he was admitted. Overnight in the ICU, he had multiple strokes in his sleep: around 11 infarcts across seven parts of his brain, on both sides. His wife, Lindsey, was eight months pregnant, with seven children at home. When he was discharged from inpatient rehab seven weeks later, he still needed three people to help him move. He started outpatient rehab on a Monday. On the Tuesday, Lindsey went into the hospital and had the baby.

Most stroke stories follow the body: the walking, the talking, the arm that won’t cooperate. This one follows something rehab rarely asks about, which is what happens to the relationship.

When one partner has a stroke, both lives change, but not in the same way. One person becomes the patient. The other becomes the caregiver, often overnight and with no training.

Lindsey describes two moments that hit hard. The first was arriving home and realising this is for real, this is forever. The second came months later, when the support faded and friends went back to their own lives. As Brandon puts it, the work ahead was clear: “You have to get fired from patient and caregiver and become care partners again.”

That’s harder than it sounds. In Lindsey’s experience, rehab focuses on functional recovery. There’s support for survivors and separate support for caregivers, but very few places where a couple sits in the same room and works out what the stroke has done to them. If you’re the partner reading this, you might relate to what it’s like when your husband has a stroke [link: https://recoveryafterstroke.com/my-husband-had-a-stroke/], and to the wider challenges facing stroke caregivers [link: https://recoveryafterstroke.com/stroke-caregivers/].

Most of us assume that once someone is medically safe, the person caring for them can step out of that role when they choose. Take the medication, tick the boxes, and you’re husband and wife for the evening.

Brandon tested that assumption. He planned a date: a taxi so Lindsey didn’t have to drive, a dress for her, dinner out. On the way home, she was drawing hearts on his hands. Back in the bedroom, the first thing she asked was, “Have you taken your medicine?”

He had, at the restaurant. But the question put him straight back into the role of patient, so he rolled over and said, “Let’s just go to bed.” Lindsey says they both went to sleep sad that night.

Lindsey has a name for what happened: hypervigilance. When your partner’s survival depends on you noticing everything, your brain learns to scan for danger automatically. Checking becomes a reflex rather than a decision, and a reflex doesn’t switch off because the lights are low. “That hypervigilance sets in and becomes habitual,” she says, “and it’s really challenging to turn that off in a moment.”

It wasn’t a lack of trust or desire. It was a protective habit doing exactly what it had been trained to do. And for Brandon, the stakes were high:

“The bedroom is the only place where I’m not disabled.”

Another pattern caught them both out. Whenever Brandon got Lindsey alone at night, she fell asleep. In his head, the story was brutal: she hates me, I’m disgusting now.

The truth was simpler. She was exhausted from running a household of ten. He hadn’t done much all day, and was ready to go. Same bed, two different wavelengths, and neither knew what the other was thinking until they talked about it. Stroke affects the whole family [link: https://recoveryafterstroke.com/stroke-impact-on-family-kathy-cunningham-408/], and fatigue doesn’t land evenly.

Brandon calls these conversations deposits in a “trust bank”. Every time he shared something vulnerable and Lindsey responded without making it weird, he trusted her more the next time.

About three and a half to four years in, Lindsey said something she’d been holding down for a long time: “I’m really pissed at you for giving us this life.” She made it clear that didn’t mean she wanted to leave. She was frustrated and angry at the situation.

Brandon didn’t argue. He made space for it. Lindsey calls it one of the most beautiful moments of their relationship, because in that moment he was her partner again, not her patient.

Brandon now sees it this way: while he was burying his old self in the backyard, he had to let Lindsey bury hers too, along with the plans she’d had for her own life. Their children told him they were angry as well. Caregivers carry their own version of the journey, as you’ll hear in Donna O’Donnell Figurski’s story [link: https://recoveryafterstroke.com/stroke-caregiver-journey-donna-odonnell-figurski/].

In the early days, aphasia meant Brandon could manage only a word or two. Longer conversations had to wait, but they didn’t stop. Lindsey learned to put words to what she thought he was trying to say, so he could confirm or correct her without speaking.

Her advice for couples navigating aphasia after stroke [link: https://recoveryafterstroke.com/stroke-and-aphasia-recovery/]: “You have to learn to hit the pause button and not the period button.”

They’ve turned those conversations into a book, The Waterline, a 58-week discussion guide for couples rebuilding after an acquired disability. You’ll find it at beyondthis.org [link: https://beyondthis.org].

In more than 420 episodes of Recovery After Stroke, it’s been rare to have both partners in the room telling the story together. What I hear from survivors again and again is that the stroke happens to one person, and the recovery happens to everyone who loves them.

If you’re looking for a path through your own recovery, my book, The Unexpected Way That A Stroke Became The Best Thing That Happened [link: https://recoveryafterstroke.com/book], is a good place to start. And if a stroke has made your world feel smaller, my new book, Your World Doesn’t Have to Stay This Small [link: https://mybook.to/yourworld], is written for exactly that moment.

If this show has helped you, you can support it at patreon.com/recoveryafterstroke.

This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.

Four years after Brandon’s stroke, Lindsey told him she was angry at him for this life. He made space for it. Here’s what changed.

Highlights:

00:00 Why would a 35-year-old skip the ER?

Transcript:

Lindsey and Brandon Taylor (00:00)

And so like mentally, if I wanna get out of this chair and be somewhere else, the bedrooms where I can do that at. And so then we had to figure out that whole switch thing and how to help her transition into being able to be the partner that can think about what we’re doing there rather than caregiving for that time being, because I don’t wanna be reminded.

that I’m disabled everywhere.

Bill Gasiamis (00:31)

Child and she became his caregiver overnight. Nine years later, they talk about the part of stroke recovery that rehab almost never touches. What happens to the relationship? Going from patient and caregiver back to husband and wife. Why a caregiver can’t just switch off? Intimacy, anger, aphasia,

And the conversations they had to learn to have, including one Lindsey held on to for almost four years. before we start, if a stroke has made your world feel smaller, my new book, Your World, Doesn’t Have to Stay This Small, is a practical guide for realbuilding your life after trauma, even when you’re not ready. Search for it on Amazon or tap the link in the show notes.

A quick word about how this show keeps going. Recovery after stroke is independent. There is no big organization behind it. Every episode is recorded, edited, hosted and published because listeners choose to support it. That’s why I ask. Your support on Patreon covers the real cost of making the show, the editing, the hosting, the production, so it can stay free for the next stroke survivor who needs it at two in the morning.

If this show has helped you, imagine what it could do for someone just starting out. And become a sponsor at patreon.com/recoveryafterstroke.. Now let’s meet Brandon and Lindsey Taylor.

Bill Gasiamis (02:27)

Lindsey and Brandon Taylor (02:31)

Bill Gasiamis (02:34)

Lindsey and Brandon Taylor (02:46)

And so I kind of focused on that and being a white, I was a dating coach and relationship coach. And so I kind of figured I had it all figured out and knew what to do. And then the stroke told me otherwise, basically one thing.

Bill Gasiamis (03:34)

Lindsey and Brandon Taylor (03:36)

Bill Gasiamis (03:39)

Lindsey and Brandon Taylor (03:55)

because I had been falling down. And I thought it was an old football injury. And so I went to the doctor. The doctor tested all my stuff and he called me one day and said, you need to go to the emergency room today. Your test results are really bad. And I had promised my kids, my boys, I was going to take them to a Royals game. And so I told the doctor, not today. I can’t go to the hospital today, going to the Royals game.

And then I wasn’t going to tell her because I knew that I would end up at the hospital if I did tell her. So I was driving a friend.

Bill Gasiamis (05:00)

Lindsey and Brandon Taylor (05:03)

And then I ended up with that. Yeah.

Bill Gasiamis (05:27)

Lindsey and Brandon Taylor (05:29)

he started having like just tremendously painful headaches. He was what his left eye was kind of wandering a little bit. It was not good and it went on for weeks but he was the kind of guy who

I like, I’m fine. I’m fine, I’m fine. And just kept on pushing. I always say I was Superman. But I didn’t understand until I was in the wheelchair that the S was actually for the strength that I have and not that I was actually Superman. So it the strokes for me to learn why I was wearing this S on my chest. So we.

Bill Gasiamis (06:39)

strength, but your kryptonite was the thing that got you, right? And that’s the thing.

Lindsey and Brandon Taylor (06:45)

Bill Gasiamis (06:46)

So how old were you when you had your first kid?

Lindsey and Brandon Taylor (07:13)

Bill Gasiamis (07:14)

Lindsey and Brandon Taylor (07:20)

Bill Gasiamis (07:20)

Lindsey and Brandon Taylor (07:23)

Bill Gasiamis (07:25)

Lindsey and Brandon Taylor (07:29)

Bill Gasiamis (07:31)

the number of kids that you guys ended up with. And if it was me, I would have told the doctor, I told you so. I definitely would have told him.

Lindsey and Brandon Taylor (07:50)

Bill Gasiamis (08:07)

It sounds like he was right with the diagnosis of high blood pressure, but at eighteen or nineteen, the first time you hear about high blood pressure, does it mean anything to you?

Lindsey and Brandon Taylor (08:20)

Kind of was a duck head in the sand sort of situation where, and even the word stroke, I’m like, okay, well I have a stroke and then I’ll be back headed tomorrow. Like, okay, great. But that’s not how stroke works at all. Here we are nine years later, still working at it.

Bill Gasiamis (09:03)

Lindsey and Brandon Taylor (09:20)

Bill Gasiamis (09:32)

Lindsey and Brandon Taylor (09:32)

10, nine and eight year olds. That list sounds so long every time we keep going. Yeah.

Bill Gasiamis (09:57)

love it. so when was the first time that you were kind of becoming aware of these underlying conditions that eventually led to the stroke?

Lindsey and Brandon Taylor (10:11)

his injury caused him not to be able to talk again, which led us to have some pretty important conversations about all the things that we may not have yet said at that point that we would want to have said if something happened. So was quite surreal when a few days later we were heading to the emergency department and he woke up in ICU the next morning after we were admitted quite quickly.

to the hospital and he had had the strokes in his sleep in ICU at the hospital and he was unable to be woken up by the nurses at shift change in the morning, which is how we realized that this was happening.

Bill Gasiamis (11:23)

Lindsey and Brandon Taylor (11:28)

Bill Gasiamis (11:30)

Lindsey and Brandon Taylor (11:52)

neurological processes that he was undergoing. So I started studying him and everything that was happening with him and trying to figure out what the heck it meant for the rest of our life. It took a number of weeks actually. We were in inpatient rehabilitation for about seven weeks.

And it wasn’t until about two weeks before we were discharged that I heard we were in a learning institution. So there were students and attending physicians and lots of people rounding his room all the time. I heard one of the attending doctors in the hallway not realizing that I could overhear the conversation, talking to the students quite candidly as doctors do between them.

about the severity of his injury, which was a multifocal injury. He had, I think, 11 infarcts in seven parts of his brain on both sides.

And the phrase that he used was that Brandon had had a massive injury and combined with his comorbidities, it was truly a miracle that he was still alive. And they went on to discuss how uncertain they were about his prognosis. And up until that point, the uncertainty that they described was

ambiguous enough that I didn’t quite know what to make of it because they left open the possibility that he might miraculously heal and the possibility that he might not. It took up until right before we were discharged when he was still three person assist, still required a whole year lift, was going to need a hospital bed at home.

that it really started to sink in how severe his injuries were and how long of a journey we were up against for his recovery. So what do you do? I think people ask me all the time, I don’t know how you did it. I don’t know how did you do it. And I don’t think there is an answer to that question other than you just kick into survival mode and you just do the things that have to be done. And that comes with a toll that you don’t.

really start to pay for until later in the process.

Bill Gasiamis (14:58)

Lindsey and Brandon Taylor (14:59)

Bill Gasiamis (15:00)

Lindsey and Brandon Taylor (15:09)

Bill Gasiamis (15:11)

And then when the dust settles, it then you start to pick up the pieces, then you realize how much impact there has been, not only to your partner, but also to you and then the rest of the family. We went through

Lindsey and Brandon Taylor (15:35)

Bill Gasiamis (15:36)

kind of going, well, I think I want to get back to my own life and the children moving on with their lives and then me trying to somehow rebuild my life. And it hasn’t stopped, right? It continues and the work continues. Brandon, what does it feel like to listen to your partner talk about the things that she’s just spoken about? What is it like for you to be to hear someone talk about you and you’re observing that conversation?

Do you know what I mean? Like as the third person.

Lindsey and Brandon Taylor (16:21)

I, even being in it at the hospital, I was amazed with what was happening. She never let me spend the night alone and those sort of things. And so I would lay there thinking, I wonder if I could do what she’s doing if she was laying in this bed. And like when they explained what needed to happen at home, it sounded like a fairy tale.

in my mind. said our house is not going to take all that stuff and I’m never getting out of here. I used to ask everyone to break me out of the hospital because I didn’t think they were ever going to let me out. And I actually was frustrated that life went on with my family, with her, with all of those people. The football season started five days after I had my stroke.

They connected up the internet and let me watch them. And I was like mad that they were playing without me. Like I had been with this team for three years and they were my team. And I was like, what are you doing? Like your coach is laying here hurt and you’re going on without me. But life doesn’t stop for everyone else. And so it truly is the first time you realize you’re mortal and you don’t matter as much as you thought you did. Like I…

I believed I was so important to so many people and they came and saw me and brought me this or hugged me and told me they missed me. But they went on with life too and so that was like the most awakening thing and just hearing her recount all the story I am sad every time that I put her through that. And like on that trip to the doctor we stopped to eat.

and by mother’s three little birds came on. So I was singing her the song as it came on and she started crying. Well, she was crying beforehand and then it came on. So I sung it to her. And then after she explained the story to me of following the ambulance to the hospital that I went to to get saved at, I could hear in my head her, or see in my head, her riding along singing the song.

And it was like a surreal movie and I like felt pain in my heart that I put my spouse through this thing. And it’s so beautiful now that people are like, I want a love story like that. But you don’t know what we had to go through to get to this love story. So it’s kind of a, don’t ask for too many other people’s problems before you really know what they’re going.

Bill Gasiamis (18:58)

Lindsey and Brandon Taylor (19:04)

Bill Gasiamis (19:05)

always in a pretty good mood, always presenting in a decent way. And then they the the people that are early on in recovery assume that that’s what stroke should look like for them, their recovery, how it should

Lindsey and Brandon Taylor (19:40)

Bill Gasiamis (19:41)

move one leg after the other. Just put one leg in front of the other to get to your destination. And then, you know, fall into a heap when you get there, but don’t fall into a heap while you’re walking. And then I had to recover. And that and that takes a day to recover. and and I even get comments on YouTube which say stuff like, Have you even had a stroke? And it’s like almost hurtful, but I I realize that where they’re coming from is they’re coming from this

place where they’re in it, perhaps they’re in the very early phase, and they are their struggle is so massive that when they see me, they say, this guy like hasn’t even had a stroke, you know, like doesn’t even look like it. We’ve been going through this for 14 years and it it never goes away. I wake up every morning with my deficits. My wife came home from work yesterday. She was working for a full day and she was exhausted, right? I was I was not working

And she came home and she said, like, you look like you’ve had a rough day. And I was like, I haven’t done anything. But that’s just how some days are. And and I get and I really and this is kind of why partly why I do the podcast is to just give a lot of different versions of what stroke looks like, how people experienced it, what they went through, how they overcome it, how they’re still overcoming it, how they’re dealing with it, how families

Have to come together or change the way they do things and adapt and grow. And it affects everybody, right? and to hear you talk about how it affected you by saying like it hurt you knowing that your decisions impacted your wife and your family negatively, people don’t realize that after a stroke, especially if you’ve been neglectful of your health, that you have some regrets that you have to deal with now as a stroke survivor.

Not only are you dealing with the strike, now you’re dealing with coming to terms with decisions you made, the impact of those decisions, how they’ve impacted your life, your family, all those types of things. I do hope that at some point you get to the place where you feel like there is nothing to do about fixing anything in the past, and that you accept everything that led to where you are, and that

And that going forward, you will put in place things that will help you not make the same mistakes again. That’s all we can do, right?

Bill Gasiamis (22:29)

What happens when you plan the perfect date night and your wife’s first words in the bedroom are, Have you taken your medicine?

If a stroke has made your world feel smaller, the way Brandon’s went from a football field to a hospital bed, my new book, Your World Doesn’t Have to Stay This Small, was written for exactly that moment. Search for it on Amazon or tap the link in the show notes. Now back to Brandon and Lindsey.

Lindsey and Brandon Taylor (23:26)

found out her story was she fell at the gym on a Friday night and had a stroke in the gym. They didn’t find her until Monday morning because they locked up the gym and found her. Then I was like, I don’t want that story. I’ll take what happened to me. And so that’s when I learned then to kind of not try to judge myself against anybody else and just be better than yesterday me.

And even being

Bill Gasiamis (24:22)

Lindsey and Brandon Taylor (24:22)

Bill Gasiamis (24:50)

Lindsey and Brandon Taylor (25:15)

and she very naturally just stepped up and was exceptionally helpful with the kids during the time that I was in the hospital with Brandon. And thereafter too, right? Because we discharged from out from inpatient treatment on a Thursday evening. We had some friends over on Friday to welcome Brandon home.

We spent the weekend at home adjusting. We checked him into outpatient rehab on Monday, and then I went to the hospital on Tuesday and had the baby.

Bill Gasiamis (26:18)

Lindsey and Brandon Taylor (26:20)

two other children under the age of two at the time. And then we had a little guy and the rest of the kids were in middle school and high school. So they were old enough to fend for themselves a little bit. And I just coordinated a lot from the hospital because he was not coherent enough to manage being in the hospital by himself. And I didn’t want to leave him there. So.

We figured it out and one extra blessing from being pregnant and having a baby at the same time as all of this is I was able to take leave from work for maternity leave for the first few months of having him home. And although it was a lot to manage unexpectedly, more or less two infants for that period of time because he was

super reliant on me for everything for the first couple of years. At least we got that time and I could set work aside for a few months. Yeah, so that was quite interesting and helpful. And also something we’ve reflected on a lot is the first, moment of like getting home from the hospital and realizing

wow, this is for real, this is forever. And this is my mess to kind of hold and figure out. And then the second moment when all of that support fades, and folks go back to their regular lives, and then you’re kind of hit with it again, because as you’ve said a couple of times, it doesn’t go away. And each day is new and different and brings different challenges. But

at some point it was back to just us and it has been while we but even that too was like another phase because for the longest time you’re patient and caregiver and so you have to get fired the patient and caregiver

and become care partners again and like have a relationship and dates and intimacy and all these sort of things. I, intimacy is kind of my thing, which is why we have eight kids. And so I totally was like, okay, we need to like fix this like now. I’m still in diapers and like all these things. So I plan a date one day. And I mean like to the nigh, I plan the date.

Wonderfully, buy a car, I mean, get a taxi to come pick us up so she doesn’t have to drive. I buy her dress. I do all these things so she doesn’t have to think about it or anything. And I take my medicine and I take her to the restaurant on the way home. She’s drawing hearts on my hands, which hearts on the hands are always a good sign when you’re going home. And so then we get home and once I start getting undressed all by myself again.

She says to me, well basically it like cussing me out. She says, you taken your medicine? And it like broke my heart because I didn’t want to be a patient in that moment. So I just rolled over and said, let’s just go to bed. And so like those types of stories, there’s a totally different phase because you have to recover her, me and the relationship besides the kids and everybody else that’s involved too. And so it’s a lot.

Yeah.

Bill Gasiamis (30:08)

put all that effort into snuggle time, but you forgot the one thing that would have guaranteed it, which was just take your medication.

Lindsey and Brandon Taylor (30:16)

it at the restaurant, but she went back into caregiver mode. I failed in

Bill Gasiamis (30:22)

Lindsey and Brandon Taylor (30:23)

Nine years later, it’s still really hard because when you’re in survival mode and you have more on your plate than you’re meant to probably realistically manage, the caregiver’s brain also develops shortcuts and starts to figure out how to be as efficient as possible. And that hypervigilance sets in and becomes habitual. And it’s really challenging to turn that off in a moment.

or turn it off, get in the mood, then turn it back on for a second while we have to do some positioning or whatever and then flip it again. It’s just a sort of a cruel ongoing aspect. tough part of that is it’s cruel to her to have to flick the switch from caregiver to agency and stuff. for me, the bedroom is the only place where I’m not disabled.

And so like mentally, if I wanna get out of this chair and be somewhere else, the bedrooms where I can do that at. And so then we had to figure out that whole switch thing and how to help her transition into being able to be the partner that can think about what we’re doing there rather than caregiving for that time being, because I don’t wanna be reminded.

that I’m disabled everywhere. You gotta have some place that you’re castle and you just can be, whether that’s video games or we met a guy who plays the guitar and a guy who plays bingo and like all of those things. Like if you feel at home there, then go there sometimes.

Bill Gasiamis (32:25)

Lindsey and Brandon Taylor (32:44)

Bill Gasiamis (32:45)

I get it. My wife is a bit like that, you know, in the she will be the one that you know, when we travel and I’ve, for example, purchased something that’s not allowed to be taken onto carry on luggage, right? Sometimes, you know, I’m I I like like pocket knives and things like that. You know, my wife might ask the obvious question, like, You didn’t put the knife in our carry on luggage, right? And I’m like, Yeah, of course I didn’t. But

I’ve made that mistake once in my life, perhaps. And she will not unforget that. And then she’ll just

Lindsey and Brandon Taylor (33:31)

Bill Gasiamis (33:31)

Lindsey and Brandon Taylor (33:36)

Bill Gasiamis (33:37)

Lindsey and Brandon Taylor (33:40)

Bill Gasiamis (33:41)

linear process that you go through. It’s just it’s just done.

Lindsey and Brandon Taylor (33:57)

You have to use that one. Sorry husband.

Bill Gasiamis (34:29)

he’s done that obviously. Yeah.

Lindsey and Brandon Taylor (34:33)

And I did it recently too. That’s the thing about it. I recently rode off the sidewalk and rode into a curb and like all those sort of things. And those things are prime example. And we’re nine years later and they’re not her responsibility. I’m driving the wheelchair in front of my body at this point. So I understand that she feels like she has to protect me, but I don’t want to mama.

I want a wife. I married her for a reason. And so I would like to be her husband and not be her kid all the time. I think

Bill Gasiamis (35:13)

Lindsey and Brandon Taylor (35:13)

The communication that happened between us after that event is communication that often happens when something goes a little bit sideways and we learn from that. And it’s those kinds of moments over the course of nine years where we figured out what he is ready to take and what we are working on developing as something that is consistently his responsibility now and not mine. And.

So even though it feels a little obnoxious that I’m sharing that example, it’s still a process of recovery every day and those conversations help us help each other to be in partnership in a way that doesn’t feel like conflict.

Bill Gasiamis (36:14)

Lindsey and Brandon Taylor (36:42)

for us to say, okay, so we do agree that this is your thing, because what happened is I let go of it, and I walked the way that the ambulatory folks go, and his path was a different path. And he’s able to affirm then, yes, I want to be responsible for that, I’m going to pay attention and then

we have that understanding the next time we go out and we continue to practice.

Bill Gasiamis (37:12)

that and he that that could be a great analogy too. Like he took his own path, like literally and figuratively, right? It’s like

Lindsey and Brandon Taylor (37:21)

Bill Gasiamis (37:22)

Lindsey and Brandon Taylor (37:28)

Bill Gasiamis (37:30)

If you actually maybe Lindsey, if Brandon didn’t roll over and just go forget about it, was there still a chance for him? Did he miss out?

Lindsey and Brandon Taylor (37:46)

He definitely would have gotten what he came to bed looking for if he hadn’t been so upset about the medicine. But I think all

Bill Gasiamis (38:19)

Lindsey and Brandon Taylor (38:22)

normal and doesn’t make it weird feeling to me, I trust her even more than next time. And so any of those sort of things. And some of my thoughts, I’m kind of recovered. I mean, you’re never a master of recovery, but I’m kind of recovered. And some of my thoughts are really good, I think. And so then if I share it and you act like it’s crazy, then I don’t want to share with you anymore.

But if I share it, even if it’s a bad thought, you say, well, that might need some tweaking. That’s a totally different thing. I can trust you then to share my thoughts with you and you give me back feedback instead of trying to like tell me what to do or how silly that is or any of those things.

Bill Gasiamis (39:25)

get an outcome rather than kind of getting stuck in the same cycle of here we are here we are again, we’re just doing the same thing again and et cetera. And I’ve got to say, I I know that I just like rolled that off my tongue like a expert couples therapist, right? But I’m fifty two and I reckon we’re getting good at that now. And we’ve been married for since nineteen ninety six. Like we are just now.

Lindsey and Brandon Taylor (40:24)

Bill Gasiamis (40:24)

the last five years or so getting better at that. And that’s because we’ve both come into the apex together. We had a different tr trajectory to it. My wife, I would say, was slower in getting to the same spot that I’m at. Not slower that there was a race or anything, but she had other things on her mind, tasks, studies, all that kind of stuff. So now that all that stuff’s done, she’s kind of.

Picked up the pace and met me where I’m at, so that now our disagreements, misunderstandings, arguments, they l they la they happen, but they last for a shorter amount of time. And there’s a big understanding that they’re not personal. And sometimes when you’re at a different rate of growth, emotionally, physically, mentally, you’re gonna clash a little bit more. And both people have to be willing to be

Critical of their own behavior. I think if you can be critical of your own behaviour in a productive way, then you can catch yourself out. And if you catch yourself out, then you won’t get disappointed so much in your partner for being human and saying the wrong thing or reacting in the wrong way or doing something that you didn’t want them to do without them knowing that you th that they weren’t supposed to do that, you know, like

Lindsey and Brandon Taylor (41:52)

Bill Gasiamis (41:53)

Turn up and say their lines. There is a stand-in waiting in every show. And the stand-in gets the nod, you’re in. And no one wonders how is the protagonist going to feel now that they can’t

Lindsey and Brandon Taylor (42:39)

Bill Gasiamis (42:39)

philosophical opportunity, you know, to look at these things in a completely different way than you have before. And that’s kind of that can be the gift if you can separate yourself for a moment to go meta and to observe the situation and not be the situation, you have an opportunity for great learning. And that helps with recovery. And that helps with you kind of moving on from

what caused your deficits and what caused you to be negatively impacted by this situation.

Lindsey and Brandon Taylor (43:27)

and figuring out like who we are today and not who we were because a lot of people will chase who they were after the stroke and try to get back to normal per se even though none of us are normal but try to get back to that sort of thing when I am so much better than normal and so yesterday was world stroke day and I asked her at the end of the day where would we be if this stroke didn’t happen?

And neither one of us had a good answer to like where we would be. And so not that the stroke was a wonderful thing to happen, but bad things happen to good people’s lives or bad things happen in good days. And so like all of those sorts of things, you have to kind of figure out who you are dealing with. I love learning her every day.

Purple was her favorite color forever, but it may not be forever. So I have to keep checking in to figure out who she is, what she is, what she likes, all of those sort of things. There’s an interesting thing that happens with the insecurity that comes from having an injury like this that we’ve been talking a lot more about lately, where if you…

rely too heavily on the safety of what you know about the person, then you get stuck real fast. accepting that we may be different tomorrow is a vulnerable place to be because it upsets that sense of security that you have in the other person. And so that exploration of like, yeah, I might change tomorrow.

something about me may shift over the next year. Something about you may shift over the next year. We have to just stay curious and continue to learn and explore and be okay with a little bit of sense of instability because the magic happens in the moments of discomfort and and that’s the magic in the bedroom and out of the bedroom so like I

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And I did, I have been in a place where I’ve seen it as a threat, which it’s not. And she has seen my growth as a threat when it’s not. Because I’m excited about a topic that she hasn’t caught up to or isn’t interested in or whatever. And then it’s

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Well, on one hand, I intentionally created as much space as I could for Brandon to focus on his recovery. I tried really hard not to burden him with my worries or my emotional baggage that was developing in there because I needed him to focus on getting better. And on the other hand,

when he was focused on getting better, he had moments of like really fast personal growth and revelations. And he’s always been the kind of guy that he just like, intuits a thing, and then he changes something and off he goes. And there’s like not a lot of

time wasted in that process. And so there were times when I felt even a little bit of resentment in that, like he had the space and the time which I had intentionally given him and that he was learning to create for himself since that was never a thing before.

And here he was turning into this amazing human right before my eyes. And I was still like carrying this load and feeling like I didn’t have that space and I couldn’t figure out how to create that space for myself. And that was really, really hard. In fact, I think it was that dynamic that led us probably three and a half or four years in to have one of the first conversations that really catalyzed a return in my mind to him being my partner again, which was the moment when I

finally was able to recognize and allow and then surface all of those feelings and I said to him one day like listen I don’t know if you’re ready to hear this from me yet but I need to trust that you can and I just have to say like I have this new awareness of the feelings that I’ve been pushing down and what I know now is that I’m really pissed at you for giving us this life and I

have, that doesn’t mean I want to leave. That doesn’t mean, you know, I’m just, I’m so frustrated and angry at this situation. And it was one of my favorite, most beautiful moments in our relationship because he was still my partner in that moment. And he handled me just as tenderly as I would have hoped he could.

And he made space for that to be true. And he might’ve taken it a little bit personally, as I’ve heard him describe afterwards, but he didn’t show me that in the moment. And we were able to work through like making space for that emotion to be released. And then I felt so much lighter. And over time, then we began to more intentionally figure out what it looked like for him to transition back into

adapted partnership roles so that we could balance the load differently again and again. But it is really

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with their okay to have feelings too and their life did change because of it. And so it’s very egotistical of me to be like, well, you’re getting me mad at me, know, but they can feel whatever the, like she’s free to have her own feelings about things.

And I was mad at me too about having a stroke. I didn’t plan on being in a chair. I was planning on still being coaching at this time. I had my own plans and so I understood that some of her dreams had to go down the drain. So I have to give her time to mourn those too. While I’m burying my old self in the backyard, I have to let her figure out how to put her old self kind of in the backyard too and let the two new of us blossom.

Out of that, kind of like where the word fern grows.

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improving your experience now that the dust has settled and you haven’t moved on with your own life and you haven’t let go of dad’s issue or my husband’s issue or whoever’s issue, well then that’s on you. But initially, yeah, that’s fair. But then

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through my life complaining about what my parents behaved like when I was 15 at 52, well that’s on me. It’s

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You know, I if I haven’t done it yet, I need to put on my big girl pants and then just just move on and let them and and let them be and learn in their own way and the and and in in their own time, you know. So it’s all fair and then there’s a time where everyone’s gotta go, Okay, this is no longer that person is no longer the one who’s causing my life challenges.

I might be causing some of those life challenges to me. Yeah, sure. I still gotta get back to an appointment. I’ve still got to, you know, like help out with a task that Brandon can’t do or whatever. Or I’ve got to, you know, go to the fridge for milk if Brandon asks me to go to, you know, especially the children, right? And it’s really interesting. I’ve got a 30 year old and my 30 year old is a cool dude. amazing child child. Says my 26 year old. They’re amazing.

But sometimes we get stuck into parent-child situations. And my son will roll his eyes every once in a blue moon, just when he’s not thinking like an adult, when I haven’t, for example, put the bin liner, the rubbish bin liner, back in the rubbish bin after I’ve taken the rubbish out. Like, dude, the drawer is there. All you gotta do is pick up the bag and put it in the the bin. I’ve taken it all out outside already. Like, we don’t need

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Get upset about that, you know, like but again, he knows logically and in every way that his res reaction is ridiculous. But sometimes

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Freaking put the bin liner in the bin and move on with your life. Yeah, for God’s sake. So

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and something that I was thinking about as you were sharing that is the hardships we go through make us who we are too. And there’s a moment of reckoning with that where without this experience, I would have not had the opportunities that I have had to evolve and grow and change and become. We all have a choice about what meaning we make from the things we go through. And

My choice is to live with a tremendous amount of gratitude and optimism about who we all can become and what the world can become in light of what we are able to learn and recognize from having such hardships in our life. I think I see that in all of our kids too. And everyone had, as you described, we all have our days and we all have our moments, but.

The kids are incredibly empathetic and socially and emotionally much more aware than they might have otherwise been without this is the situation and they’re so caring and helpful and seeing them perpetuate those characteristics and and those acts in the world is like one of the most cool things to see come out of the life that we’ve lived.

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marriage, stroke, life, they’re all hard. They don’t come with a manual. And so like, you don’t know how you’re supposed to react or supposed to parent or do any of these things. So to hold against her or my kids for them to hold me against me, like for a long-term thing, it makes absolutely no sense because…

I just did my best. That’s what people are doing is what they’re doing their best. And so like, if they if my dad didn’t feed me that evening, because he couldn’t eat, couldn’t feed me that evening, like it wasn’t like he was trying to starve me. He was he couldn’t feed him. So that’s a totally different thing. Not that that happened, but I’m just saying that it’s a totally different thing. And so you don’t, to me, don’t hold it against the people for that sort of stuff.

even with the relationship part of it. If she is sad about this tomorrow, well actually one of things she said was she figured out how to help out and stuff all the time in the talking. What she didn’t do during stroke was figure out what she wanted for dinner still. She stayed a wife in that aspect.

Bill Gasiamis (57:43)

can relate to that, my friend. My I have the same problem with my wife every day. Honey, what because I’m at home most of the time, so I can cook. What would you like to eat? She never has an answer. I have to always imagine what she would like to eat. What’s cool about it is it doesn’t matter what I eat, she just what I cook, she she eats it. So that’s cool. so at least she doesn’t say that’s not what I wanted to eat today after she didn’t tell me what she wanted to eat.

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always says no to the first three things. So I just name the things that I know she’s gonna say no to and then that fourth, and I don’t care, just pick whatever. And so that’s how we get past it now. I feel convinced that

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fortunate because sometimes he does in fact read my mind and bring me things that I love or might have been craving and sometimes he even does it before I’ve said I’m hungry. So I’m quite quite a lucky human if I do say so myself.

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point that you made about decision fatigue. That is such a great point. You gotta decide all these things to get to the end of the day and dinner. And it’s like, Mm, man, somebody else handle it for me. Just do it. Don’t worry about it. Yeah. I get that. I like that. That kind of gives me a bit more of an insight perhaps into my wife, what what’s going on in her mind, you know? now this this inadvertently became a proper couples therapy.

session and you guys are playing a beautiful role in being a great couple to kind of therapise. I’m not a therapist though, right? But that bring that puts into my mind a show that I’ve been watching with my wife called Couples Therapy. And there is an American season or no, there’s six American seasons, and the doctor’s name is Dr. Orna O R N A. And I’m not sure what her surname is.

But what it is is two people go to therapy, she’s a proper psychologist, and she talks them through life problems, their couple problems and all that kind of stuff. And it’s like I think each episode goes for about an hour, and in the episode you meet I think three or four couples, and you get the spectrum of challenges that they’re all going through, and then it just swaps between the couples. And

If you’re the type of if you’re in a relationship where there’s a possibility that you guys have some issues as a couple, I’m talking to the people watching and listening, and you haven’t been able to get to therapy, watch this show together because it is going to just open your eyes and it’s going to you’re going to be seeing yourself in each one of these couples.

In some way, shape, or form. And it’s going to give you insights that you’ve never had before. And it is going to be very helpful and useful. So even though my wife and I have come a long way and we’re, you know, beyond all of the stuff that we used to go through when we were in our 30s, for example, we sit down and watch it together, and it is so amazing to hear both the therapists say,

extract from the people what’s really going on and then also the people struggling to get to what’s really going on. And then eventually they kind of all come together. Some don’t and some are talking about separating and things like that at the end of it. But overall it’s very helpful and useful. It’s called couples therapy. The first season in the US started in 2019 and I think there’s five or six seasons and and I think there’s an Australian version as well, which is very similar.

So that’s that. I wanted to also now touch on some other work that you guys are doing together somehow in the middle of recovering from stroke, finding new identities, being parents to eight children. you guys wrote a book

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it. Have you got a copy there?

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on the website, which is beyondthis.org, the blurb for the book goes for interrabled couples rebuilding after acquired disability. When one partner acquires a disability, both lives, both lives change, but not in the same way. Above the waterline.

A couple may look strong, grateful, and resilient. Beneath it are the things few people see. Grief, exhaustion, changing roles, lost intimacy, fear for the future, and the question, how do we find each other again? It sounds like an amazing book. Tell me about how the book came to be, why was it necessary to write it?

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help these conversations get started because rehab doesn’t tell you that these are conversations like nobody prepared me to come home and be a husband in a wheelchair. I had to figure that all out on my own. And I didn’t with the new wife who was a caregiver, that’s a totally different wife than before. And so all of the book is basically just those conversations. And the way it came about was that rehab, my rehab,

I was there and couples would find out that I had done this before the stroke. And they would corner me and beg for help. And I was still out of my mind during this time. And so I didn’t help them. But I told myself, I’m going to come back here and help. And so then they asked us to come around and talk to couples or to the patients. And we decided to write a book and…

get beyond this goal and stuff. The concept of the book came out of the acute awareness that we had at least in US-based care that there is an intense focus on functional recovery for the patient and there are support resources for caregivers and there are support resources for survivors of acquired disability.

especially post discharge, but there are very, very, very few places as in the couples therapy show you were just describing where the couple is invited into the same space where both perspectives of the same experiences are very different and there’s no support for interrogating what that means and getting

the book written in a way that brings my experience and Brandon’s experiences into the same space over a long period of time of the winding journey of recovery.

was our first step in starting to create some of that space. And so then the work we do with couples and with therapists, both in the medical rehab space and couples therapists, sex therapists who don’t have the lived experience component is to bridge the gaps that exist in the fragmented care continuum so that folks can have a little bit more of

the whole person care need, which relies really heavily on the relational system in which people are recovering. And a good example of the book is every night that I could get her alone, I was trying to get intimate, she would fall asleep. And I would think it was because of my arm or my legs not working and she was just tired.

But in my head, I’m over here like, she hates me. I’m disgusting now and like all of these things. And it wasn’t until we had these conversations where like, I don’t hate her at all, I just am tired. that makes sense. We do have all these kids.

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person, I haven’t done anything all day. And so I’m like, well, it’s nighttime, I’m ready to go. And like, so it’s just being on two different wavelengths. And if you’re not talking about it, you’re not in each other’s brains, so you don’t really know.

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the e the the way that you guys both experience the world. Well, firstly you are different genders and then you know, there’s a million things why you experience things differently. And to just expect that the other person knows what you’re thinking or what you’re on about, etc. And that they’re in the right frame of mind to pick up on your clues and the, you know, the trails that you’re laying down to get the outcome that you want. Man, it’s just too much to to put on another person.

doesn’t matter whether it’s Brandon doing it or Lindsey’s doing it, whether it’s children doing it, whomever, conversation and and having permission to totally communicate is one I think one of the best gifts you can give somebody in a relationship with whether it’s a a child relationship with their parent or a or a you know, couple with each other, whatever it is, you know, like I think that

I think that the hardest times that I ever created for my wife was when I wasn’t talking. Which recently I’ve been able to sort of say to my wife, that’s actually me talking. I know that sounds a bit weird, but when I’m not talking, it’s not what you imagined it to be, which is I’m shutting you out, or I’m not doing this, or I’m not doing that. That’s actually me communicating because sometimes when I don’t talk, what I don’t do is make things worse.

as some men can do. and sometimes when I’m not talking, what that also means is that I don’t actually have any words to say. Like I I literally, my vocabulary is gone. and that is an interesting thing for somebody else to hear, is that quiet may also be I’m reflecting to see, you know, like how can I change my approach or

How can I reword this? Or did I act, was I wrong? Can I accept that maybe I did something wrong and I need to apologize? You know, like I’m doing a a lot of things in that thing that looks like I’m not talking. If you spoke to me and you said, hello, how are you? And I didn’t respond, that it definitely is me giving you the cold shoulder and not talking to you. That is definitely the other thing. But if you’re asking me,

Well what do you have to say for yourself? And I’ve got nothing? I’ve got nothing. And it’s not and it’s not like I I’m not trying to not give you something. I just don’t have it.

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is uncomfortable to a lot of people. And

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And then we know because, well, actually with my daughter, my nine year old, I was riding her to school on my lap the other day. And she said, well, you should just read my mind and know. And I said, why would I do that? Well, you’re doing it for mommy all the time. You’re supposed to be able to read my mind too. And so I was like, no, I feel sorry for your husband. like, is it true that you can read minds? Now he’s going to have to read minds.

I think there’s something

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producing a sentence was incredibly taxing, we had to learn other ways to communicate. And sometimes that meant holding off on what felt like a necessary longer conversation for me, because he didn’t have the capability to engage in that way yet. But what it didn’t mean is that we held off forever or

that we didn’t find some interim step and some alternative way to communicate. It just meant back to your early point about curiosity, we had to really be very curious and attentive and creative to learn the nonverbal ways that we were communicating with each other and to start to interpret. And I would put words to the things that I thought he was communicating so that he could nonverbally affirm or.

denied that I was on the right track. And I think that folks need support in that space significantly more than even couples who have the ability to communicate and maybe struggle with the emotional aspects of doing so. You have to learn to hit the pause button and not the period button to innocence.

Bill Gasiamis (1:13:16)

adjusting and learning and dealing with emotions and that is such a great point that you made there about like nonverbal communication, what that looks like. And then sort of starting to train yourself into well we know it about as parents, you know, we we learn it about kids when they’re so little. We we know we have the ability to tune in on the nuance of a cry. Well that’s a I need to be burped cry. That’s a I need to keep a changed cry. That’s a I need to be fed cry.

And you kind of work out the nonverbal communication and then that’s kind of a skill that we need to kind of rediscover when we’re trying to navigate situations like aphasia and memory issues and all that type of thing. Guys, it’s been a real pleasure getting to know you and having this conversation with you. I’m glad that you guys reached out and we were able to

shine a light on this part of stroke because I haven’t often had proper full-on conversations about what it’s like as a couple to experience a stroke. I love the fact that you’ve written a book, The Waterline, that takes people down this kind of how to reestablish yourselves again as a couple after stroke, amongst other things. Where can people go and find a little bit more

About you guys by the book and then also perhaps connect with you.

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the books there too. The books online. We’re also on,

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the links will be in the show notes for everyone watching and listening. The book can be purchased directly from you as well, is that right?

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Bill Gasiamis (1:16:03)

a discount to okay. Fantastic. Well thank you for joining me on the podcast.

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Guide for Couples Rebuilding After and Acquired Disability. You’ll find it at beyondthis.org. It’s discounted when you buy it direct from Brandon and Lindsey. And you can also find it on Amazon. Just check out the links in the show notes. The guys are also on Facebook and Instagram and TikTok. So feel free to reach out if you want to connect. If you’re the partner,

in the caregiver role, go back and listen to my conversation with Donna O’Donnell Figersky. She’s walked this road to.

If you can think of a couple who needs to hear this episode, send it to them today. And if you’re a survivor who wants to support rebuilding your identity, your confidence, or your relationships after stroke, I work one on one with survivors through my coaching program. It’s built on lived experience. It is in therapy or medical treatment, and it’s designed to help you take the next step when you feel stuck. Find out more at recoveryafterstroke.com/momentum.

And if your stroke has made your world feel smaller, pick up my new book, Your World Doesn’t Have to Stay This Small, and start rebuilding it one step at a time. Search for it on Amazon or tap the link in the show notes. Remember to subscribe and I’ll see you on the next episode of Recovery After Stroke.

The post Brandon and Lindsey Taylor: Getting Fired From Patient and Caregiver appeared first on Recovery After Stroke.

If you’ve quietly wondered whether your stroke was some kind of payback, God’s way of settling a score for something you did, or a lesson you were somehow meant to learn, you’re not alone. It’s one of the most common things stroke survivors say to Bill Gasiamis, host of Recovery After Stroke, and it’s rarely said out loud to a doctor or even a partner. It just sits there quietly, shaping how someone feels about their own recovery.

Here’s the question that belief can’t survive: if strokes were God’s punishment, why do people who have genuinely done terrible things, who have hurt others, broken every rule in the book so often live into their 90s without one? And why do infants, toddlers, and people who have lived scrupulously careful lives sometimes have strokes at all? The arithmetic of “stroke as punishment” falls apart against the very people it would need to hold up against.

This kind of guilt rarely starts with the survivor. It’s typically inherited, handed down by an elder, a parent, or someone in a faith community who used the fear of punishment as a motivational tool, often with good intentions: it kept people showing up, behaving, staying in line. It’s a blunt instrument, but an old and common one, and it isn’t unique to any one religion.

There’s a well-documented pattern in psychology sometimes called the “just-world belief”: the deep, often unconscious assumption that the world is fundamentally fair, and that bad things only happen to people who did something to deserve them. In the abstract, it’s strangely comforting, because it implies control: if bad outcomes are earned, good behaviour can prevent them. Researchers who study religion and serious illness have also long noted that a medical event without an immediately satisfying explanation tends to get a moral one instead; the mind reaches for a story, and “I’m being punished” is often the fastest one available. When that story gets turned inward after your own stroke, the same belief that once felt comforting in the abstract becomes corrosive in practice.

Strokes have physical causes: a blocked or burst blood vessel in the brain, and risk factors that raise or lower the odds: blood pressure, smoking, alcohol use, diet, inactivity, genetics, congenital vascular differences, and plain chance. Bill’s own stroke happened at 37, when a blood vessel he was born with not something he did, something he was born with burst. He was also smoking and drinking heavily at the time, and he’s never pretended those habits played no part in his risk.

That combination is exactly why this topic matters: it isn’t that lifestyle never plays a role it often does. But the distinction that actually matters for recovery isn’t “blame vs. no blame.” It’s guilt vs. responsibility. Guilt says: I am a bad person and this happened because I deserved it. Responsibility says: some of what led here was outside my control, some of it wasn’t, and I can only change the second part going forward. One of those framings keeps a person re-litigating the past indefinitely. The other frees up the energy recovery actually requires.

Holding onto punishment-framing doesn’t just feel bad; it has a real cost during recovery. Shame and self-blame tend to pull energy away from the work of rehab: a person who believes they’re being punished is, in effect, fighting the recovery itself as much as the deficits it left behind. Letting go of guilt is not the same as letting go of responsibility. You can still quit smoking, cut back on alcohol, move more, and take your risk factors seriously all without carrying the belief that the stroke itself was a moral verdict on who you are.

A few questions worth asking honestly if this belief has been sitting with you: What would you say to a friend who told you their stroke was punishment for something you knew they didn’t deserve? Whose voice is this belief actually in yours, or someone else’s from years ago? And separately: is there anything in your control, going forward, that’s worth changing not to earn forgiveness, but because it’s good for your brain and body either way?

A stroke is a medical event, not a verdict. The physical causes and risk factors are real and worth taking seriously, but guilt over the past and responsibility for the future are two different things, and only one of them is useful in recovery. Letting the guilt go isn’t letting yourself off the hook. It’s what makes room for the work that actually helps.

Internal links: https://recoveryafterstroke.com/book · https://patreon.com/recoveryafterstroke

*This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.*

The post Is My Stroke a Punishment From God? appeared first on Recovery After Stroke.

If it’s sold as healthy, it must be safe to add to your recovery. Most of us carry that belief without examining it. A new superfood, a trending supplement, a copper bottle that promises better water. The label says healthy, so more good things should mean a better brain.

Then you sit down with a psychiatrist and hear that the copper water bottle is, in his words, “a health risk.”

I went into this conversation expecting a straightforward chat about nutrition after stroke. I never expected it to go where it did.

My guest was Dr. Robert Hedaya, Clinical Professor of Psychiatry at Georgetown University School of Medicine and founder of The Whole Psychiatry & Brain Recovery Center in New Jersey. This was his fourth and final conversation on the show, after earlier episodes on photobiomodulation, hormones and thyroid, and what blocks brain recovery. Here are the four things he wants you to know.

Dr. Hedaya calls nutrition a bedrock of recovery. Neurons need essential fatty acids, protein, and minerals such as magnesium, zinc, copper, and selenium. B12 is needed to make myelin, the sheath that lets neurons fire at the right speed. His rules are simple:

He is blunt about blood sugar: for anyone recovering from a brain disorder, high blood sugar is your enemy.

Nutrients aren’t “more is better.” Dr. Hedaya tests B12, free copper, ceruloplasmin (the protein that binds copper), and zinc. B12 absorption can drop after 50 or with acid-blocking medication, so he looks at several markers together. In his patient population, he says, at least half are low in zinc, which neurons need to communicate.

“If you’re trying to recover from any brain disorder, high blood sugar is your enemy.”

Copper is essential, but too much can harm. Dr. Hedaya says free copper can drive irritability and push zinc down, which is why he’s wary of copper water bottles.

Unlined copper does release copper into what it holds. A lab test of water stored in a copper vessel measured about 1 mg/L after 24 hours in plain water, which the authors judged within WHO and US EPA limits. But the contents matter. Another study found more copper in stored water containing amino acids and organic compounds, and US food-safety rules keep acidic food and drink away from copper. That’s why copper pots are lined, as I said in the interview. Do the maths: two litres a day at that level is around 2 mg of copper from water alone, before you eat anything.

Whether that matters depends on your baseline. With normal copper and good zinc, probably not much. With high copper or low zinc, it’s an extra source, and that’s what he tests for. I found no study of copper bottles in stroke survivors, so treat his “health risk” as a clinical judgment.

His other examples:

His clinic uses HYLANE: hyperbaric oxygen, laser, and neural exercises such as neurofeedback. They’re passive treatments, and he follows Professor Shai Efrati’s protocol, covered in this episode. His limits are clear:

“Healthy” isn’t a property of a food or supplement. It’s a relationship between that thing and your baseline. Remember to test before you add anything.

What is the best nutrition after stroke? Dr. Hedaya starts with whole foods and a balanced plate, then tests for deficiencies.

Is a copper water bottle safe after a stroke? Unlined copper releases copper into water, more so with acidic or organic-rich drinks. He calls it a health risk, especially with high copper or low zinc. Ask your doctor to test copper and zinc first.

Can any treatment revive dead brain cells? No. He says HYLANE may wake dormant cells and speed progress.

My book, The Unexpected Way That A Stroke Became The Best Thing That Happened, is a path to post-traumatic growth after stroke. You can support the show financially on Patreon, and find Dr. Hedaya at wholepsychiatry.com.

Research (via PubMed): DOIs 10.1016/j.jaim.2018.02.134, 10.1007/s10482-010-9435-3, 10.1007/s11356-020-09970-z, 10.1038/s41598-023-50119-y, 10.3389/fnut.2024.1366231, 10.1038/sj.ejcn.1600631, 10.3143/geriatrics.37.304. Food Code summary: Snopes.

This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.

Copper water, avocado, dark chocolate: Dr. Hedaya explains why “healthy” depends on your baseline, and what to test before you add anything.

00:00 Nutrition After Stroke

Transcript:

Dr Hedaya (00:00)

Bill Gasiamis (00:21)

Back to something most of us are overcomplicating, nutrition. And then into something I’d never heard of before called Hylain. In this conversation, you’ll hear four things: how to feed your brain the raw materials it needs, why testing your baseline comes before adding anything, why some healthy sounding habits deserve a second look and what Hyane can and can’t do.

Listen for the one idea that changes how you decide what you add to your recovery. Before we begin my book, The Unexpected Way That a Stroke Became the Best Thing That Happened is a Path to Post Traumatic Growth After Stroke, the field pioneered by Tedesky and Calhoun. Find that at recoveryafterstroke.com/book. And remember to support the show financially on Patreon if you can, at patreon.com/recoveryafterstroke. It helps cover the costs.

Of keeping this podcast going. And I’m grateful to everyone who already supports the podcast in some way, shape, or form, be it financial or by leaving a comment or leaving a five star review. Now here’s my discussion with Doctor Hedaya

Bill Gasiamis (02:03)

Dr Hedaya (02:06)

Bill Gasiamis (02:09)

Healing the brain and recovery after something like a stroke. And today we’re going to touch on some other things that one of the things I’ve never heard of, and one of the other things which we talk about so often, which is overspoken about, which is nutrition. And I think we also overcomplicate it. So if you could kind of give me an indication or an or some information around

how to go about nutrition after a brain injury, how you have found approaching nutrition has been positive and successful for your patients. And then and then we’ll you’ll tell me about HyLane and what it is and how it is applied in a similar situation.

Dr Hedaya (03:27)

You need the sesame seed bun, you need the special sauce, you need the pickle and the patties and the lettuce and the tomato, and that’s you need to make a Big Mac. Well, to make a neuron work, you need certain things. You don’t need a pickle and a bun, okay, but you need things like essential fatty acids, and you need vitamin B12 to make myelin. Myelin is the sheath that helps the neurons fire properly at the proper speed, right? You need the right types of fatty acids, so it’s,

You know, that’s best tested. Nutrition is best tested so you know where you’re falling short. But you know there’s so many raw materials. need adequate protein. You need adequate minerals, magnesium, zinc, copper, selenium. You know, they all do different things and multiple things, right? So you could, copper, for example, necessary to make energy. Too much copper, irritability, rage, anger, right? Zinc.

necessary for the neurons to communicate like the serotonergic neurons can’t really communicate properly, right? So you need enough zinc. The brain has more zinc in it than any other organ in the body. If you have inflammation in your body, say your gut or an infection in your body, then that zinc gets shunted away from the brain and the brain is lacking in zinc. Zinc is necessary for the neurotransmission. It’s necessary to convert

something called ProBDNF to BDNF. So that’s one of the chemicals that helps the brain grow new branches, brain-derived neurotrophic factor. So there’s just hundreds, probably thousands of things. So we can’t know all of these things, right? So really you want to work with a really solid nutritional program. And that means in a simple way, a couple of simple rules.

Bill Gasiamis (05:50)

Dr Hedaya (05:53)

properly raised meats and fish of high quality, et cetera. You want it whole foods the way nature meant them to be. That’s number one. Number two, there is a problem, at least in the United States, and I think it’s better in some countries like the European countries, in Israel, for example, the quality of the food is better than it is in the United States. I’m not sure what it’s like in Australia, but.

Bill Gasiamis (06:50)

good.

Dr Hedaya (06:52)

you might have a need for more zinc and B6, right? And that’s very important for neuronal function and also mood regulation. So there are specific things each individual may be different in. If you’re over the age of 50, for example, or if you’re on something like Prilosec or an acid blocker, you’re not going to absorb your B12 very well, right? Over the age of 50, you start…

really having trouble absorbing B12. And you may even have an immune reaction to the protein that helps you absorb B12, intrinsic factor. And your immune system could even be attacking that. So what do do? You need B12, parentally, ideally, meaning injected once or twice a week. But before you just do that, you want to check and see how your B12 is functioning. And there’s a few ways of doing that.

One is a B12 level, but the reference range is not great for that. So for me, any B12 level under say 800 in the United States, I don’t know what your reference ranges are, even though that’s well within the normal range, it’s suspicious. But then I’m also gonna look at the red blood cell size, whether there’s any kind of anemia, where’s the iron level, where’s the homocysteine. So we kind of look at it in a dynamic way.

to try and figure out what are the factors involved here. And there’s really no harm to taking a B12 injection unless you happen to have certain types of genetics in which case you could be activated by it. So you might need a different type of B12 because there are different types. This is hydroxycobalamin, there’s methylcobalamin. And then at the regular pharmacy you get cyanocobalamin. But I don’t really like that because each molecule has a cyanide.

in it and it’s fine. It is a poison to your mitochondria. So not a great idea. So you want,

Bill Gasiamis (09:19)

bit there because I want to kind of give people a sense of your depth of knowledge and understanding and like how complicated things can get. One of the things that we talk about a lot, people ask me is like, what do I do for my nutrition? And like giving people information about my nutrition is not helpful because everyone’s in a different situation

Dr Hedaya (09:44)

Bill Gasiamis (09:45)

I

work with a naturopath here at home and the reason I work with a naturopath is so that I can have an understanding of those markers in my bloods that

Dr Hedaya (09:56)

Bill Gasiamis (09:57)

To store their water in. And it’s being promoted and sought and sold as if it’s the newest, most amazing thing that you need to do if you want to be well, feel well, etc. And

Dr Hedaya (10:32)

Bill Gasiamis (10:33)

And as soon as I saw that copper water bottle one, I was very shocked that this is being now touted as the next you know healthy thing to do for your body. You briefly mentioned just in that early opener discussion, you mentioned that too much copper is no good. Why is drinking or storing your water in a copper container probably to be avoided?

Dr Hedaya (11:15)

could be very serious. So if you were to do this over time, not only might you get irritable and aggressive and moody, and your zinc will also drop because copper causes zinc to drop, and then your brain becomes deficient in that, really imbalanced, your immune system will become compromised. But you also, down the road, could have long-term neurological problems. It can be connected with Parkinson’s disease, for example.

And it can deposit specific areas of the brain, I think in the striatum, as well as the substantia nigra. But, you know, so that, I’m not certain on where those copper deposits are, but they’re very, they can be very serious. So that’s actually a dangerous thing. Now, your body will compensate to a little bit of a degree, so it can.

can increase something called ceruloplasmin. Ceruloplasmin is the binding protein for copper. So if the ceruloplasmin is holding on to that extra copper, then you have a buffer, right? And if you take some N-acetylcysteine and maybe some selenium and maybe a little glycine and some riboflavin, then you can actually boost your ceruloplasmin production over time. It’s not quick.

but over time, your body probably will adjust it up anyway because it’s sensing too much copper. But you’ll reach a point where there’s just too much copper, free copper running around, and then you start to get the damage. So to me, it’s dangerous, really. And it’s going to be dangerous for people who have psychiatric problems, obviously, and maybe for people who have neurodegenerative problems or proclivities as well.

Bill Gasiamis (13:34)

Dr Hedaya (13:49)

Bill Gasiamis (13:49)

Dr Hedaya (13:53)

Bill Gasiamis (13:54)

gonna be a need for testing at some stage in recovery and trying to work out how to heal your brain. There’s gonna be a need for sort of baseline bloods to get you some feedback on where you’re at right now so you can identify the areas to target.

Dr Hedaya (14:18)

And what you want to do is check the free copper, the ceruloplasmin, and the zinc. So that’s what you want to check. Now, in the United States, in my patients, I check copper and zinc and ceruloplasmin in everybody. And I could say the one person that I think might have two people with low copper, one of them has a

kind of a variant, let’s say, of Wilson’s disease, okay? So, there’s a genetic component to it. It’s just very rare for someone to be too low in copper. It’s very rare. Zinc, yes, very common. So, no, you drink your water out of this copper thing, and you’re probably, you know, I’d say in the United States, you’re probably, in my population anyway, you have at least a 50 % chance of being low in zinc, so drink your water out of this copper thing, and you’re gonna make it worse.

Bill Gasiamis (15:14)

previous conversation that we had earlier was about juice doesn’t grow on a tree, a biscuit doesn’t grow on a tree, that kind of stuff. If you think about the food pyramid and how governments specifically try to advise people to eat, there’s been a lot of controversy around the food pyramid of late, one of them being that in the United States, the

Trump administration flipped that upside down and and completely changed it with the help of yeah. Yeah, flipped

Dr Hedaya (15:48)

Bill Gasiamis (15:51)

bother telling people about the food pyramid. How do you advise somebody who’s very early on in their recovery and has say awareness that nutrition is really important? How do you advise them to eat?

Dr Hedaya (16:24)

And then a third of your plate or your calories will be healthy fats. It could be avocado, but if your copper’s high, you don’t want to eat avocado, right? But it could be olive oil on your salad. You want to basically, the book that I really like is called The Zone, Barry Sears, The Zone. He’s got several books. And it’s about balancing your plate so that you’re getting a good healthy balance of everything.

getting the nutrients that help control your blood sugar because erratic blood sugar and high blood sugar is your enemy. If you’re trying to recover from any brain disorder, high blood sugar is your enemy. Okay, that’s one of your biggest enemies. So if you have too much rice or then you have your gluten-free muffin or whatever, you know, after you have a few pieces of meat or whatever it is, you’re in trouble and you’re gonna make things worse because your neurons are gonna have trouble getting energy and they’re gonna have trouble.

keeping the inflammation down and they’re have trouble healing and you don’t wanna be doing that. You wanna be creating a really pristine environment in your brain and your body so that your body can recover. You know, the brain is plastic, it needs the right conditions and it can recover. It’s slow, it’s too slow, we like it to be faster, all of that’s true. But it can recover.

Bill Gasiamis (18:15)

Dr Hedaya (18:32)

Bill Gasiamis (18:35)

Dr Hedaya (18:38)

I like consumerlab.com and they test the chocolate to see which ones are low. GRDeli at this point seems to be the dark, I think it’s 73 % dark chocolate is pretty good, pretty safe. But most of the other ones that they’ve tested are not. So, yeah, too much chocolate, you can get a lot. Now you can have your chocolate. If your copper’s okay, you can have some chocolate. It’s not gonna be, your body will adjust to that.

Bill Gasiamis (19:33)

Dr Hedaya (19:49)

Bill Gasiamis (19:50)

Processed sugars and other additives to kind of make it palatable and tasty. So that’s

Dr Hedaya (20:08)

Bill Gasiamis (20:09)

Dr Hedaya (20:26)

Bill Gasiamis (20:28)

you’re already getting enough of those trace minerals.

Dr Hedaya (20:35)

if you’re on birth control pills, you’re very likely to have high copper levels.

Bill Gasiamis (20:43)

Why?

Dr Hedaya (20:46)

Bill Gasiamis (20:54)

Dr Hedaya (21:00)

extracting it, I guess, and you’re storing it. But I don’t know the mechanism, but it’s there. So I see it regularly. mean, pretty consistently, actually. And people with IUDs that are copper, for example, these are the things that we look for. I almost always try to get people to take that out.

Bill Gasiamis (21:27)

Dr Hedaya (21:52)

Bill Gasiamis (21:54)

Dr Hedaya (21:54)

Bill Gasiamis (22:12)

Dr Hedaya (22:24)

Bill Gasiamis (22:25)

Dr Hedaya (22:28)

Bill Gasiamis (22:29)

Dr Hedaya (22:35)

All right. All right.

Bill Gasiamis (22:39)

Dr Hedaya (22:40)

Bill Gasiamis (22:42)

and consumerlab.com for checking chocolate brands. Both are in the show notes along with the research I found on copper, chocolate and avocado. remember to subscribe so every new episode finds you. Next we get into Hylene Hyperbaric Oxygen, laser and neural exercises. So let’s get back to the conversation.

Bill Gasiamis (23:33)

Dr Hedaya (23:48)

There’s there’s no shots, there’s no nothing, right? So you can actually bypass a lot of the stuff that’s going on in the body to kind of wake the brain up, wake certain parts of the brain up using these methods. So the hyperbaric oxygen has been around for a long time, many years, and it’s essentially putting you into a chamber that puts you at a pressure that’s…

say one and a half times the pressure in our regular atmosphere. That’s roughly how you would feel if you jumped into a pool and you went 10 feet down. That’s the level of pressure you would feel on your body. It’s one and a half atmospheres or so. And the hyperbaric oxygen chamber can go as high as I think two and a half, probably more, but two and a half atmospheres. But we use lower pressure in our clinic, but some people use higher pressures.

I think you get a lot out of the lower pressures without having to have the hard chamber. So you can actually have a chamber in your home. You can actually purchase one. So that actually is, I think that in a general sense, is a tonic for the whole body. And it seems to generate new neuronal growth, vascularization. are actually studies that show clearing of the brain function.

in people with Alzheimer’s disease. And it’s been known for a long time to help heal wounds, using diabetes, brain injury. We use it a lot for people with traumatic brain injuries, et cetera. So it’s got many, many mechanisms, lowering inflammation, enhancing the antioxidant status, et cetera. So that’s a kind of a foundational thing that we do. The only time we wouldn’t do it is if someone can’t go into the chamber because they can’t clear.

their ears or if they have certain types of infections that they’d actually get worse like babesia. It’s a tick-borne infection that loves oxygen, so you don’t really want to put someone in the chamber with more oxygen, right? So.

Bill Gasiamis (26:26)

then goes to a caution around just getting an oxygen chamber at home unsupervised and getting in it.

Dr Hedaya (26:33)

right, yeah, yeah. You don’t want to just grab one. want to certainly try it. If you feel better afterwards, you probably don’t have a Babesia. If you have a Babesia, you’re going to probably feel worse in the days afterwards or right afterwards. But it’s something that should be assessed by a clinician for sure. You don’t want to go in it if you’ve had a pneumothorax in the last year or if you’re prone to pneumonia or things like that.

But it’s a very good treatment, and most people can do that. So that’s one thing that we do. And the way we do it, we follow the Shai Efrati protocol, which is from Israel, where we basically

Bill Gasiamis (27:21)

Shai Efrati.

Dr Hedaya (27:25)

Bill Gasiamis (27:27)

Dr Hedaya (27:31)

and then we put it back on, we go through three cycles, three and a half cycles of that, and we do that, we try to do that five days a week for 40 to 80 sessions. So that’s the hyper back piece of it. And there’s a small, it’s controversial, there’s a small possibility that some people could have seizures from it, so you have to be careful and be alert to that. I had someone with.

Seizures who did it, who seizures actually cleared. So it kind of depends, I think, on the person, right? So that’s something to be aware of. And then there’s the laser. The laser is a certain wavelength of light. We use 810 and 1064. it’s like a wave in the ocean. And the peak-to-peak frequency is 810 nanometers, very narrow, right?

1064 nanometers. And it’s a laser, so it’s like coherent light, meaning all the waves are traveling together. They’re not canceling each other out. Now, most of that light, so what we do is we do a quantitative EEG. We look at the brain, put a cap on, and measure the electrical patterns in the brain. And then we really put that through AI. And we…

compare your patterns to other people your age and sex using a national institute of health database. And then we can see, look, in this area your patterns are off and we can go into much tremendous amount of detail. But then we know where the patterns are off. And with that knowledge and your symptoms and an MRI.

We look at all three, it’s like a GPS. We try and put them together so we know what to do. And then we can say, okay, if it’s appropriate for you to have a laser treatment, we know where to do it. And then we apply the laser. So we might, in some of them, typically, let’s say an aphasia from a stroke, we’ll apply it to the left side, for example. know, some people have had injuries that have visual sensitivity to bright lights, for example. Then we will look to see if there’s something in the back of the head.

or maybe the front and the back, because there’s tracks that go from the front to the back. If you cut two, three tracks that go front to back, and they can affect your reading and your facial discrimination, prosopagnosia, facial blindness, things like that. So we can actually tell all the tracks which ones are misbehaving, and we can see them. And we can then target those tracks also with neurofeedback. So we can say,

These tracks say in a lot of different networks will say the default mode network. The default mode network is, I call it the worry network. You just worry about this, worry about that. It’s like your narrator that’s talking about your life. It’s like a tennis ball machine. If you ever played tennis with a tennis ball machine, every 10 seconds another ball comes. Well, with the

Bill Gasiamis (31:10)

Dr Hedaya (31:11)

And it can really get out of control. And so that, if let’s just say for argument’s sake that that is the problem, then we can actually train that down into the normal range. So we can be so specific. I mean, it actually boggles my mind really. so that’s kind of when we put these three together, it’s basically the

Hyperbaric is in a way a tonic for the body and the brain, and the laser is providing in a simple, immediate way energy to the brain, and then you go into the gym and you work out the networks, right? So it’s kind of like going to the gym, maybe you have an energy drink, then you do your biceps, you know, something like that.

Bill Gasiamis (32:06)

they are done in conjunction or at separate stages or during the same week? How do they work?

Dr Hedaya (32:11)

depends on the person. Sometimes we will do the hyperbaric plus the laser, or sometimes we’ll do the, almost always doing the hyperbaric as a base, and then the laser, we may be not able to do it if there’s hyperactivity in the brain. We have to wait till we can calm that down, and then we can do it. And then we might do the neurofeedback with the laser or even without the laser. Everybody’s different.

know, one size fits all,

Bill Gasiamis (32:44)

g a guaranteed result? So one of the big challenges that stroke survivors face is they have deficits. Some of the deficits are really life-challenging and difficult to overcome and deal with, whether you’re overcoming them emotionally and mentally or actually physically, they could be really debilitating. And the hope is when they come across a new study or a new protocol or something, is that if I go there, they are going to be able to reverse my deficit. So I’m not going to have

the

damage in my brain anymore. How do we manage that part of the conversation? Because unfortunately every single thing that I’ve come across, none of it fixes brain cells that are dead.

Dr Hedaya (33:29)

All of sudden her problem was cured. And I’ve seen this actually with a few people with head injuries also, particularly from the occipital area. You know, two or three treatments and they’re reversed. So, but that I’m not going to, that’s not most of the time. So what can you expect if you have a stroke and you’re wanting to recover functions is that these treatments can help accelerate your progress. They’re not going to bring dead cells alive.

You’re going to have this still work to be done and it takes time, but it does accelerate the process.

Bill Gasiamis (34:37)

Dr Hedaya (34:39)

Bill Gasiamis (34:40)

Dr Hedaya (35:00)

and this can bypass it. And I’ll give you an example. Now this is very different than a stroke, but I’m treating a kid who’s 12. And his mother, I have never treated anyone who’s 12, but his mother came to me, she wanted to try the laser. He had a real problem, behavioral problem, impulsive, unable to read, ADD, whatever you want to call it, and home school, et cetera, really creating problems in the family.

But it’s a solid family. Long story short, treat him with the laser and neurofeedback. After four weeks, he’s reading for an hour. He’s helping clean the house without being asked. He’s got, you know, a total change. The kid is behaving normally, okay? Now, this is the amazing thing. We just got a lot of labs back just yesterday. He’s got all of these infections. He’s got four or five infections going on.

So the laser, particularly, allowed me to bypass the effect of the infections on his brain. But we still got to treat those infections. We got to take care of that because otherwise you stop the laser, it’ll go back to where it was. All right.

Bill Gasiamis (36:42)

that their infections in hindsight now were a thing or is it just, well these weren’t visible, like we didn’t know and therefore we assumed it was behavioural?

Dr Hedaya (36:52)

No, he’s had immune problems for maybe all of his life. he had some, like Lyme was treated. But now I see, yesterday I saw, he’s got an active mycoplasma infection. He’s got two infections in his intestine at a strong high level. And, you know, just a bunch of things. And these things all affect the brain. That we know. So it’s the same with stroke, right?

Although when you’re older, your brain doesn’t respond like a 12-year-old, but same process. So this is why it’s not the laser alone, but I will say that sometimes I could say, a patient would come to me and they’re not ready for this whole functional medicine thing. It’s just too much. Don’t have the bandwidth for this. Don’t have the money for this.

I don’t mind starting with the high lane because it’s passive. They don’t have to do anything. They don’t have to do a million tests or anything like that. And it bypasses the problems, not always, but a significant number of the time, I would say 80 % of the time, maybe a little more. You can bypass and get the brain going again. And then, OK, I’m feeling better. You know what? I’m ready to look at some of those things.

So there’s different ways, everybody’s different.

Bill Gasiamis (38:18)

it’s it sounds like a it’s a very comprehensive program. However, what are the challenges of people being able to access that type of program? I imagine cost will be one of those.

Dr Hedaya (38:32)

only in person. So the cost for the evaluation with the acute.

Bill Gasiamis (39:08)

for the evaluation, Dr. Hedaya. What I mean is like the f number of sessions for hyperbaric, you know, and the number of sessions for the laser and all that kind of stuff over the period of time can be quite significantly quite significant, the cost, right? So it’s like

What some people will be able to access there, others will be listening to it to and saying, Well, I won’t be able to do that. There’s no way. You know, how do we kind of bring everybody into the fold without everyone coming to a clinic, whether it’s yours or somebody else’s, and paying the money to to to kind of put that kind of protocol in place. One of my biggest challenges is w when I’m dealing with

interviewing people about the products and services that they offer to help people support is that I can’t make it accessible to everybody. Not everything is accessible to everybody. But there’s got to be some way that we can kind of go, hey, you might not be able to get here, A. B. You might not be able to have the funds. That’s okay. Cause you know, you’ve got you’ve had a stroke and all these, you know, your work has dried up and all that kind of stuff. We get it. But then how can we kind of bring people into the fold to do their

the protocol or to have the idea about the protocol without attending, flying across the country, across the planet, et cetera.

Dr Hedaya (40:31)

across the planet. So I actually encourage people to find a doctor nearby and I can train them. I can consult with the doctor. The patient would have to come to me initially live in person so I can actually lay my eyes on them and do my evaluation so I know what’s going on. And then I can work.

through their clinician, if their clinician is open-minded, and they consult with me as needed and I can give my recommendations. If they want to learn how to use the laser or the neurofeedback, I can train them. It’s an investment. It just isn’t an investment. There’s no way around that on their part. Well worth it if you ask me because I’m able to help people that I could never, never have, this kid I was telling about, could never have helped him. The woman who,

whose husband got connected us, you know, never could have helped her, you know, it just wouldn’t have worked. So I’m happy to teach this. I’ve put out feelers. I’m sad to say that.

Most physicians are just algorithmic thinkers. There are a few that aren’t. And I teach at the Institute for Functional Medicine. And so I’m open. Anybody who wants their clinician, who has an open-minded clinician, I’m happy to guide them and train them.

Bill Gasiamis (42:05)

Dr Hedaya (42:16)

Bill Gasiamis (42:16)

Dr Hedaya (42:22)

Bill Gasiamis (42:23)

To me. And as far as the investment goes, people are already investing in their bodies. They’re investing whether they’re smoking, whether they’re drinking sodas, whether they’re eating processed food, they’re paying money and they’re getting some kind of a outcome for that. Like it’s a result. And if you shift that, if you think about like how do I invest in my brain being healthier and I’m a smoker, well, invest in doing the opposite of smoking. There’s don’t smoke. Put that money

Dr Hedaya (43:03)

Bill Gasiamis (43:04)

not alcohol, et cetera. So it’s like it’s I I I talk I wanna I don’t want to talk about the price, but I wanna kind of shift people’s idea of the investment part of it. yeah, it’s expensive. Well so is not being able to work for the next thirty years. but then it’s still

Dr Hedaya (43:24)

Bill Gasiamis (43:25)

Dr Hedaya (43:30)

make you think you might be vulnerable well. Exercise, straighten up your diet, get on top of it when you’re young. Develop those habits. Hang around with people who are also health conscious. Very important because it’s very hard to do on your own when everyone around you is smoking and drinking and eating. Very hard, very hard. It’s not impossible.

Bill Gasiamis (44:24)

even if you’ve already had a stroke and you’re kind of on the path to recovery, maybe it’s a good idea to make that shift also to avoid another one and to avoid

Dr Hedaya (44:35)

Bill Gasiamis (44:36)

Dr Hedaya (44:53)

Bill Gasiamis (44:54)

and go live somewhere else and they won’t they won’t know any better and they’ll they’ll

Dr Hedaya (45:25)

Bill Gasiamis (45:25)

Dr Hedaya (45:30)

And she got it because you don’t you don’t win the battle By being hopeless you win the battle by saying I’m gonna die trying I’m gonna I’m gonna beat this thing. I’m gonna beat it. I don’t know how long it’s gonna take I don’t know what turns in the road. I’m gonna take I don’t know what the path is gonna be. I am gonna make this my vocation I’m gonna do this. Of course, you’re gonna have down days, etc. Etc, know, you’re a human being but that’s the attitude and she did it she changed her attitude

Bill Gasiamis (46:30)

Dr Hedaya (46:49)

Bill Gasiamis (47:01)

Dr Hedaya (47:05)

educational consult or being a patient, there are different paths that they can take.

Bill Gasiamis (47:26)

Dr Hedaya (47:28)

Bill Gasiamis (47:30)

Studies tell you what’s possible, not what’s in your blood. Test first, then decide. To connect with Dr. Hedaya visit wholepsychiatry.com where there’s a contact form for consultations. He sees new patients in person first and he’s open to guiding a local clinician. To revisit the series, listed to episode 404 on photobiomodulation and laser therapy.

Episode 413 on hormones and thyroid and episode 417 on mold, mercury, and lime. For the hyperbaric oxygen research behind Hylain, listen to my conversation with Professor Shea Efrati. All the links are in the show notes. Share this episode with one person who’s rebuilding after a stroke. It could change how they approach their recovery. My book, The Unexpected Way That a Stroke Became the Best Thing That Happened.

Is a path to post traumatic growth after stroke drawing on the work of Tedeski and Calhoun. Find that at recoveryafterstroke.com/book. And remember to support the show financially if you can at patreon.com/recoveryafterstroke.. Support starts at around six dollars a month. Until next time, this is Bill Gasiamis and you’ve been listening to Recovery After Stroke.

The post Test Before You Add: Nutrition, Copper and Waking the Brain with Dr. Robert Hedaya appeared first on Recovery After Stroke.

If you’ve had a stroke, the natural assumption is that recovery comes down to how much therapy you can get: more physio, more occupational therapy, more speech sessions. Six years ago I put a short questionnaire on this website asking stroke survivors and carers what they’d change about their recovery. Eighty-three of you answered. The single most common request wasn’t a body part. And the reason some of the most persistent unmet needs after stroke show up even in people who are already getting therapy is stranger than it sounds.

The questionnaire wasn’t fancy: a handful of questions for anyone recovering from a stroke, or caring for someone who is. Over six years, 83 people answered: 58 survivors and 25 carers.

Grouped by theme, physical goals a working arm and hand, better walking, better balance came up most often overall, named by about one in three respondents (27 of 83). But looked at as a single, specific theme, the biggest individual ask wasn’t a body part. It was information: almost one in four people (19 of 83) asked for a clear plan, concrete answers, or simply a way to know whether they were on track. One person asked for a flowchart of what to do after a stroke. Another just wanted to know if they were doing enough.

Then there was this: when people were asked how strongly they agreed with “I don’t feel supported, informed, or empowered to assist in my own recovery,” nearly half 47% agreed strongly. And the people already receiving physio, OT, speech therapy, or outpatient rehab weren’t exempt. On average, they still scored high on that statement (5.9 out of 10), lower than people with no support at all (6.8), but still high. If therapy alone closed the gap, that shouldn’t happen.

That pattern isn’t unique to the people who happen to read this website. A 2014 study of 765 Australian stroke survivors, all at least a year past their stroke, found that 84% reported needs that weren’t being fully met, with a median of four unmet needs per person. The people with the most unmet needs tended to be dealing with fatigue, cognitive or memory changes, and emotional changes: the parts of stroke recovery that don’t show up on a scan.

A Cochrane review, one of the more rigorous forms of evidence synthesis, pooled 21 trials covering over 2,200 stroke patients and nearly 1,300 carers, looking at what happens when people are given proper information about their stroke. The results were modest but real: better patient and carer knowledge, higher satisfaction with care, and a small reduction in depression scores. Notably, information people actively engaged with asking questions, working through it, revisiting it did more for mood than information just handed over as a leaflet. The same review found no measurable effect on carer mood, the overall rate of anxiety or depression diagnoses, or mortality, so this isn’t being oversold as a cure.

A second Cochrane review looked specifically at self-management programmes: education plus skills training in goal-setting, problem-solving and decision-making, delivered one-to-one or in groups. Across 14 trials and more than 1,800 participants, people who went through these programmes reported better quality of life and higher self-efficacy the belief that you can actually influence what happens next in your own recovery. The reviewers themselves rated this evidence as low quality because the programmes varied so much from each other. The direction is consistent; the certainty isn’t there yet.

That idea that you don’t wait to feel ready before you start building a plan- you build it in small steps while recovery is still hard is also the core of my new book, Your World Doesn’t Have to Stay This Small. It’s not written only for stroke survivors; it’s for anyone whose life split into a clear before-and-after. If the gap described above sounds familiar, it’s worth a look: mybook.to/yourworld.

None of this says therapy doesn’t matter; it clearly does. What it suggests is that therapy on its own isn’t the whole mechanism. Understanding your own stroke, and having skills to set goals and solve problems between appointments, appears to do something therapy sessions alone don’t: it carries you through the gaps, including the one that opens the day formal rehab stops. That fits with what survivors and carers in the questionnaire actually asked for: not more equipment, but a plan they could understand and act on themselves, alongside their treating team, not instead of it.

In the interest of honesty: the 83 responses above aren’t a scientific survey. They’re a self-selected group of people who found this website and chose to answer, over six years, and the theme coding behind the statistics was done in a first pass. The Cochrane evidence on information provision shows small, real effects, not dramatic ones, and didn’t move carer mood or overall anxiety/depression rates. The self-management evidence is rated low quality specifically because programmes differ so much in length, content and delivery; researchers don’t yet know which elements matter most, or what the “right dose” looks like. This is a consistent direction worth acting on, not a settled, final answer.

This isn’t about replacing your therapists; it’s about walking into the room with your own agenda instead of just theirs.

If you want to go deeper on building that plan, Bill’s book covers it from both the post-traumatic growth side (recoveryafterstroke.com/book) and the practical, rebuild-your-life side (mybook.to/yourworld). And if these videos are useful to you, Recovery After Stroke runs on listener support; you can help keep them coming at patreon.com/recoveryafterstroke.

This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.

The post Unmet Needs After Stroke: What 83 Survivors and Carers Told Me appeared first on Recovery After Stroke.

Written by Bill Gasiamis, a three-time stroke survivor and host of the Recovery After Stroke podcast.

She drove him to the emergency room, where doctors found an arteriovenous malformation in his left frontal cortex had ruptured. Surgery followed three days later. According to Alan, the surgeon told her afterwards that if she had not acted that morning, he had probably had about twenty minutes.

That was 32 years ago. Alan is 57 now, still married to the woman who got him there, and still recovering — the part of stroke that rarely features in conversations about the first year. Across more than 400 conversations on this show, the survivors furthest from their stroke tend to say a version of the same thing: the effects change, but they do not finish.

An arteriovenous malformation, or AVM, is a tangle of blood vessels in which arteries connect directly to veins, bypassing the capillaries that normally sit between them. Most people who have one are born with it, and many never find out. When an AVM ruptures, blood leaks into surrounding brain tissue, which makes it a hemorrhagic stroke. Alan’s was congenital, and part of it is still there. Two other survivors have described the same event: Juan Gonzales, eleven years on, and Lorenzo Price, a tattoo artist whose AVM upended his working life.

Alan lost the ability to walk, speak, read, and write. He spent one to two weeks in intensive care, about eight weeks in rehab, a long stretch of outpatient care, and roughly eight months before returning to work. Three decades on, what remains is subtler and much harder for other people to see:

Fatigue, slowed processing and sensitivity to stimulation are among the most commonly reported long-term effects of stroke, and because none of it shows, it is easy for others to wave away. The deficits no one can see and cognitive fatigue after stroke are the subjects survivors raise with me most often, usually long after everyone else has stopped asking.

Alan’s workarounds are worth borrowing. He stands up and walks every 30 minutes. He asks people to email a recap after phone calls so he has a written record. And when a thought drops out mid-conversation, he asks for a second, which reads as careful thinking.

Long before the rupture, Alan was losing small pieces of time. In class he would miss five seconds, thirty seconds, sometimes more. His teachers saw a daydreamer. He decided he was an anxious child. He became skilled at covering the gaps, and his wife of five years saw something she had no name for.

He had no brain scan until just before surgery, at almost 25. Only afterwards did he understand those lost moments were seizures. Not every daydreamer has an AVM, but repeated, unexplained lapses deserve a medical conversation rather than a convenient label.

“I think everybody has an undercurrent of something.” — Alan Durnwirth

There is no finish line. Alan says some days are harder than others, and that he has learned to recognize them and slow down. Recovery now means maintenance: his medication, good nutrition, and walking about ten miles a day, five in the morning and five in the afternoon. Walking began as a way to get back a sense of control, and became the thing that calms his mind.

His career reshaped itself around his brain. Unable to hold the corporate pace, he started a graphic design business from home, taking fewer clients and more time. He still runs it, and it meant both he and his wife were home while their children were small.

Alan also took anti-seizure medication for 15 years and only recognized, after a change, that a persistent low mood had quietly become his normal. A later switch was made without a gradual taper, and the months that followed were frightening enough that his wife connected the timing and his neurologist intervened. That is his personal experience, not advice: never start, stop or change a medication without consulting your doctor.

On those long walks, memories he had lost after surgery started coming back. Alan journaled them, several hundred entries, then expanded them into longer pieces, and they became Silent Fuse: Living with the Undercurrent That Shaped My Life. Writing it helped him stop blaming people and circumstances, and let go of old hurt and anger. He now says plainly that he loves himself, and describes the book as almost a love story about his wife.

Psychologists Richard Tedeschi and Lawrence Calhoun call this post-traumatic growth: not the absence of struggle, but the meaning and strength found through it. I have written about the growth you did not know you were having, and my book, The Unexpected Way That A Stroke Became The Best Thing That Happened, offers a path to post-traumatic growth after stroke.

They vary with where the bleed happened and what treatment was needed. Alan’s include slowed processing, word-finding pauses, sensory overload, fatigue and focal epilepsy. Ask your care team what to expect.

Alan says yes. Thirty-two years on, he still notices change. Gains usually slow with time, but many survivors keep adapting and improving for years.

It is when an AVM, a tangle of abnormal blood vessels, bursts and bleeds into the brain, causing a hemorrhagic stroke. It is a medical emergency, so seek emergency care immediately.

If a stroke has made your world feel smaller, my new book, Your World Doesn’t Have to Stay This Small, is a practical guide to rebuilding your life after trauma, even when you are not ready. Remember to subscribe so you never miss a survivor story, and if this show has helped you, you can support it at patreon.com/recoveryafterstroke. Alan’s book, Silent Fuse, is on Amazon and at Barnes & Noble.

This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.

Alan Durnwirth had about 20 minutes when his AVM ruptured at 24. Now 57, he’s still recovering, still walking, and still growing. Hear how.

Highlights:

00:00 They said it was just the tooth

Transcript:

Bill Gasiamis (00:00)

Alan Durnwirth (00:02)

I can honestly say that I I love myself now.

I’ve let so much.

hurt and anger and and and feelings that I had for so many years just let them go or work through them.

that I can just move forward.

Bill Gasiamis (00:23)

In March nineteen ninety four, Alan was twenty four and five months away from his wedding when he woke up one morning paralyzed down his right side, barely able to say his fiancee’s name.

An arteriovenous malformation in his brain had ruptured and he was in surgery three days later. That was thirty two years ago. Alan is now fifty seven and he will tell you he’s still recovering. Now here’s what I didn’t see coming. This story starts long before 1994. Alan was showing signs as a child and every adult around him had a tidy explanation for it. Every one of them was wrong.

And nobody looked properly until he was almost twenty-five. There’s also a stretch in the middle of this conversation that I think anyone on long-term medication needs to hear. And a question Alan ended up asking himself that has nothing to do with his brain at all. If a stroke made you feel like your world got smaller, my new book.

Your world doesn’t have to stay this small, is a practical guide to rebuilding your life after trauma, even when you’re not ready. Search for it on Amazon or tap the link in the show notes below. And if this show has helped you, you can support it at patreon.com/recoveryafterstroke.. Any support helps to cover the costs of the podcast to keep it going for other people to be able to find it and get the support that they need.

After stroke. And now here’s my conversation with Alan

Bill Gasiamis (02:06)

Alan Durnwirth (02:08)

Bill Gasiamis (02:10)

Alan Durnwirth (02:16)

Bill Gasiamis (02:17)

a special community. There’s a awesome gentleman who I interviewed, Greg Graham, who runs a podcast type thing. And he interviews AVM injury survivors and all that kind of stuff. And he calls himself the AVM superhero. And he does amazing work at kind of raising awareness about what it’s like to experience

Alan Durnwirth (02:44)

Bill Gasiamis (02:45)

Alan Durnwirth (02:46)

Bill Gasiamis (02:47)

Alan Durnwirth (03:00)

And actually my early twenties I felt better than I ever had in my life.

But then when I of all things I had some wisdom teeth pulled and when they were pulled there was

an abscess or you know some investion in in what they took out and it almost the instantly or the next day I felt I was living my youth all over again just just lethargic and I c I couldn’t think straight. And I actually went back to my

My dentist multiple times said I’m not feeling right. And they’re they’re saying, Well goodness, this just sounds like you know, recovery. You’re taking a little bit longer to recover. but it didn’t seem like tooth pain, it seemed quite different. And I was young, young enough that I wasn’t really thinking straight, you know. and plus

You know, I I was I wasn’t thinking it was anything other than the the recent extraction.

Over a few weeks’ time, I started getting some facial paralysis, facial droop on my right side.

Bill Gasiamis (04:31)

Alan Durnwirth (04:36)

I tried to wake her up and and then I kind of dozed off a little bit and I was thinking, maybe my body was just it fell asleep. You know

Bill Gasiamis (04:59)

Alan Durnwirth (05:02)

Bill Gasiamis (05:12)

Alan Durnwirth (05:19)

And that’s when my you know, that’s when they you know they did the tests and and said that’s what it was, it was a rupture and I was in emergency brain surgery soon after that.

Bill Gasiamis (05:37)

Alan Durnwirth (05:41)

Bill Gasiamis (06:06)

Alan Durnwirth (06:08)

Bill Gasiamis (06:27)

Alan Durnwirth (06:29)

Five seconds, sometimes it could be 30 seconds or even more, just depending on the the circumstance, you know, what was happening. and then what happened is that once I was missing that time, it gave me anxiety, like I’m what has what just happened there? You know, so I thought I was just a

Bill Gasiamis (06:50)

Alan Durnwirth (06:50)

But come to find out later, after I’d learned about the EVM and everything after, that was just absent seizures.

Bill Gasiamis (07:01)

Alan Durnwirth (07:09)

Bill Gasiamis (07:11)

Alan Durnwirth (07:22)

Bill Gasiamis (07:32)

Alan Durnwirth (07:39)

So it was never checked out as a youth in my teenage years. it wasn’t until right before I had brain surgery.

Bill Gasiamis (08:00)

Alan Durnwirth (08:18)

and at the time I never see it saw it coming.

Bill Gasiamis (08:44)

Alan Durnwirth (08:48)

Speaking was very difficult. It was hard for the thoughts in my brain to get to my mouth. You know, there’s just a disconnect.

writing, I I lost a lot of faculties in in reading, writing.

So walking, talking, reading, writing. it’s now been over 30 years and I’ve been fortunate to you know, I’ve worked on all those deficits for years. I still have lasting effects of the brain injury. I still have part of the ABM in my brain.

My cognitive ability is sometimes very slow.

I have a lot of trouble with screens and visual simulation.

Bill Gasiamis (09:47)

Alan Durnwirth (09:50)

I was I was having trouble with multitasking and getting really tired when I looked at the computer for a long period of time. I just thought it was fatigue, you know, eye fatigue, all this. But if I push myself too far, I would just get nauseous and have seizure type feelings and I just had to

push myself away from my desk and and take breaks. So that’s what I do now. I still work on the computer, but I take a lot of breaks. Like every 30 minutes I’ll get up and I’ll walk around and I’ll do other things. just to give my mind and and

Visual just some some break.

Bill Gasiamis (10:46)

Alan Durnwirth (10:52)

Bill Gasiamis (11:07)

Alan Durnwirth (11:15)

I was getting married in five months at that time.

You know, i i felt like I was getting my life in order.

You know, ever

you know, and then it changed overnight. You know, I I didn’t go back to work for many months, eight or at least eight months, but even when I did that, I couldn’t keep up with the pace anymore.

And I ended up leaving and I started my own business where I could

work at my own pace, you know.

Bill Gasiamis (12:09)

What kind of work were you before the bleed?

Alan Durnwirth (12:14)

Bill Gasiamis (12:20)

Alan Durnwirth (12:21)

And it was hard for me to keep up. But then when I started my own business, I started doing the same thing, but I could take on less clients, take more time if I needed to to complete a project. And that was the main thing. And I started my business out of my house. and I still have that business today, 32 years later. and that’s that’s enabled me to

live my life the way I need to live it.

Bill Gasiamis (12:51)

Alan Durnwirth (13:04)

after my brain surgery I thought maybe I’d live a another year. I had no idea. Because not only you know the the surgery affects you in a way and the your deficits affect you in a way and your your mindset goes up and down. You know one day you’ll be

Feeling great, and the next day you’re just depressed. Like, what’s you know, what’s gonna happen to me from here, from now?

And then I realized that even the medication that I was on for anti-seizure medicine affected me. And I had I took it for 15 years and and and I was quite depressed for 15 years, not knowing that it was the medication. I was thinking, well, it it it you know it’s doing what it’s supposed to do. I’m not having seizures, it’s great. But I was just

Bill Gasiamis (14:11)

just… You know there’s life

Alan Durnwirth (14:16)

on and I was married and I had kids and I w had a business, there’s a underlying

you know

Bill Gasiamis (14:25)

Alan Durnwirth (14:27)

Bill Gasiamis (14:28)

Alan Durnwirth (14:30)

Bill Gasiamis (14:30)

Alan Durnwirth (14:34)

Bill Gasiamis (14:41)

that you make it become so normal that you don’t realize that it’s not normal.

Alan Durnwirth (14:46)

Bill Gasiamis (14:47)

Alan Durnwirth (15:08)

being off of it and having a seizure when you’re, you know, I had situations that I was driving and I had grandma seizure.

Bill Gasiamis (15:34)

Alan Durnwirth (15:36)

Bill Gasiamis (15:46)

Alan Durnwirth (15:46)

Bill Gasiamis (15:47)

Did you have those types of conversations with yourself?

Alan Durnwirth (16:14)

It wasn’t a smooth

Bill Gasiamis (16:32)

What was it like having one of those seizures?

Alan Durnwirth (16:36)

Bill Gasiamis (16:37)

Alan Durnwirth (16:39)

Bill Gasiamis (16:44)

Alan Durnwirth (16:45)

It’s just like something just takes over your your body and brain and you have zero control over it.

Bill Gasiamis (16:55)

Alan Durnwirth (16:55)

Bill Gasiamis (17:09)

Alan Durnwirth (17:11)

Bill Gasiamis (17:13)

so she had known you before all of the drama.

Alan Durnwirth (17:17)

Bill Gasiamis (17:17)

Alan Durnwirth (17:24)

You know.

Bill Gasiamis (17:36)

become skilled at pretending nothing happened or what do you do?

Alan Durnwirth (17:41)

just when when it seemed like time had passed and you weren’t there to witness it.

you just kinda fake it like, yeah, that you know, it’s a funny story, you know, but you missed part of it. You know.

Bill Gasiamis (17:59)

have a sense of now, do you have a sense of how much you missed? Do you miss 30 seconds or a minute of it or more than that?

Alan Durnwirth (18:07)

Bill Gasiamis (18:15)

Alan Durnwirth (18:15)

Bill Gasiamis (18:21)

Alan Durnwirth (18:21)

And so I would pass out and as a child I was alone alone a lot. And so my cat’s joining us here.

Bill Gasiamis (18:52)

Alan Durnwirth (18:57)

playing when I was really little, we I lived in forty acres of acres of land. So I’d wake up in a field and I’d be like, I just fell asleep or something, but it you know, it wasn’t that at all.

Bill Gasiamis (19:11)

Alan Durnwirth (19:25)

Bill Gasiamis (19:26)

Alan Durnwirth (19:27)

Bill Gasiamis (19:29)

that you got to the wedding. What condition were you like when you got to the wedding? How impacted were you from all the brain surgery and the bleed?

Alan Durnwirth (19:42)

Bill Gasiamis (20:01)

Alan Durnwirth (20:04)

you know, almost forty years. And she’s been with me before the bleed and she’s been my rock ever since. I’m very fortunate.

Bill Gasiamis (20:20)

Alan Durnwirth (20:31)

Bill Gasiamis (20:33)

Alan Durnwirth (20:38)

Bill Gasiamis (20:40)

Alan Durnwirth (20:48)

I was feeling a lot better.

Yeah, I was I was getting it’s hard to

I was in a much better place, let’s just say that.

Bill Gasiamis (21:05)

happened just now? Was that thinking the processing happening or was that an emotional?

Alan Durnwirth (21:10)

Bill Gasiamis (21:20)

Alan Durnwirth (21:21)

Bill Gasiamis (21:22)

Alan Durnwirth (21:23)

Bill Gasiamis (21:26)

Alan Durnwirth (21:42)

Bill Gasiamis (21:42)

Alan Durnwirth (21:48)

Bill Gasiamis (21:49)

go through something like that in a conversation where they don’t really know the detail of your past.

Alan Durnwirth (21:56)

You know, let me think about that. You know, I c I like I said, I’m I’m very good at covering

The gaps, you know, covering up

And using that as like a pause.

And if I don’t show it too much, you know, like

You know, it looks really normal. You know.

Bill Gasiamis (22:16)

Alan Durnwirth (22:19)

Bill Gasiamis (22:23)

Alan Durnwirth (22:24)

Bill Gasiamis (22:26)

I love it. I love all those little things that people do to to work their neurology into, you know, a normal part of life, like to make it seem normal to everybody else, but it’s a strategy to get people over the line. That’s a classic example of adaption, you know, how people go through difficult things and then they adapt and they find a way to.

Alan Durnwirth (22:52)

Bill Gasiamis (22:54)

Alan Durnwirth (23:02)

Bill Gasiamis (23:03)

Alan Durnwirth (23:07)

Bill Gasiamis (23:08)

exhausting if you had to do that every single time you met somebody new and you wanted to

Alan Durnwirth (23:22)

Bill Gasiamis (23:23)

It seems like quite an amazing thing that stroke survivors often find themselves doing.

Alan Durnwirth (23:36)

It’s nice to have a paper trail.

Bill Gasiamis (24:06)

Alan Durnwirth (24:14)

Bill Gasiamis (24:16)

Alan Durnwirth (24:22)

AI much, no. Mm mm. No, I really haven’t.

Bill Gasiamis (24:27)

Alan Durnwirth (24:28)

Yeah.

Bill Gasiamis (24:35)

Alan Durnwirth (24:55)

Bill Gasiamis (24:56)

It’s all about them and it’s very difficult to manage them when you’re feeling well, let alone when you’re

Alan Durnwirth (25:04)

Bill Gasiamis (25:05)

Alan Durnwirth (25:13)

Bill Gasiamis (25:13)

Alan Durnwirth (25:25)

But I was able to

yeah, pass off when I need was overwhelmed, you know, that kind of thing. or it taught me how to just slow down. You know, just

sometimes when you’re overwhelmed you just need to calm find that calm place. and that’s kind of going internal a little bit.

Bill Gasiamis (26:13)

Alan Durnwirth (26:13)

And since you had teenagers, it was a little more difficult when my kids were, you know, young and I was able to adapt with them as they got older and

I was able to give them the attention that I wish I had when I was a k child.

Bill Gasiamis (26:36)

Alan Durnwirth (26:48)

Bill Gasiamis (26:49)

the very early years of raising the children. Such

Alan Durnwirth (27:08)

Bill Gasiamis (27:09)

Alan Durnwirth (27:16)

Bill Gasiamis (27:42)

Alan Durnwirth (27:46)

You know, sh she’s always been the one for me. And I think you have those people in your life that

That are your support when you need it and I would do the same for her.

Bill Gasiamis (28:06)

Alan Durnwirth (28:08)

Bill Gasiamis (28:10)

Alan Durnwirth (28:11)

Bill Gasiamis (28:11)

Alan Durnwirth (28:17)

or they’re used to it.

Bill Gasiamis (28:21)

Alan Durnwirth (28:23)

Bill Gasiamis (28:25)

standard, normal, whatever.

Alan Durnwirth (28:28)

Bill Gasiamis (28:28)

Alan Durnwirth (28:31)

Bill Gasiamis (28:32)

Are you still finding things changing, improving, getting better? How do you experience the recovery part? Because I imagine, well, I’m 14 years out and I feel like I’m still recovering. Do you still feel that?

Alan Durnwirth (28:59)

And one thing that I’ve always well I’ve done for the last several years is that I walk a lot. I walk ten miles a day.

Bill Gasiamis (29:16)

Alan Durnwirth (29:17)

I walk five in the morning and five in the afternoon most days. So and and it wa it at in the beginning it wasn’t just for exercise. It was because I was trying to

you know, calm, you know, get to a a a calm place.

Because actually several years ago I had a a mishap with

I changed anti seizure medicine, but it affected me very adversely.

Bill Gasiamis (29:44)

Alan Durnwirth (29:45)

Bill Gasiamis (29:46)

Alan Durnwirth (29:48)

Bill Gasiamis (30:00)

Alan Durnwirth (30:01)

Bill Gasiamis (30:07)

Alan Durnwirth (30:08)

cold turkey. It just affected me so awful. I had so much anxiety in my body.

And that’s when I started walking, basically. Because that’s the only thing that kept me movement kept me feeling like I had control over what was happening.

Bill Gasiamis (30:42)

Alan Durnwirth (30:49)

You know, we’ve like you we here here are the different medicines that we think you should try. And for years and years I was always, you know, it works. Don’t mess with it. You know.

Like said, I thought I felt I felt good. It didn’t it I didn’t have any seizures, right? So

Because I was thinking when I went off of it at one point, that’s when I was driving. My wife was next to me and I had a grandma seizure and you know, that was something I didn’t want to ever happen again.

Bill Gasiamis (31:31)

Alan Durnwirth (31:37)

Bill Gasiamis (31:39)

Alan Durnwirth (31:50)

And my my my mind was just

I I couldn’t trust what was happening in my mind.

Bill Gasiamis (32:21)

Alan Durnwirth (32:27)

Bill Gasiamis (32:39)

Alan Durnwirth (32:39)

Bill Gasiamis (32:40)

Alan Durnwirth (32:44)

Bill Gasiamis (32:45)

So in this psychosis scenario, did you need medical treatment?

Alan Durnwirth (32:50)

Bill Gasiamis (32:56)

Alan Durnwirth (32:57)

My days were just very, you know, at one point I thought we were having a gas stake in our house and I’d called it gas company, they’d come out and they’d check, nope, everything looks fine. Next day I’d call them again. I smell gas, you know.

And then once that kind of tapered off, I was we’ve got mold in our walls. The mold in our house. It’s gonna kill us. It’s killing me. It’s killing our family.

I’d go to the store and and and I’d think that the police officer was there t and and he was there for me.

You know, this is all s made up in my head, of course.

Bill Gasiamis (33:44)

Alan Durnwirth (33:46)

Bill Gasiamis (33:57)

Alan Durnwirth (33:58)

Whatever there was yeah.

And that was the low that was the lowest

Bill Gasiamis (34:08)

Alan Durnwirth (34:10)

Bill Gasiamis (34:14)

right now, thank God.

Alan Durnwirth (34:16)

Bill Gasiamis (34:20)

to think that medication could do that to somebody that instead of making them better, it’s doing that.

Alan Durnwirth (34:27)

Yes.

But it was my wife again saving me connecting the dots of, you know, when did this start? Or you know, we sat down and she’s like, when did you start feeling

Bill Gasiamis (34:38)

Alan Durnwirth (34:39)

Bill Gasiamis (34:54)

Alan Durnwirth (35:11)

and when I don’t walk in the morning, my wife’s like, go for your walk because I’ll pace around the house. I just have, I just need to do it. You know.

Bill Gasiamis (35:31)

direct that energy so that it’s not around her.

Alan Durnwirth (35:36)

Bill Gasiamis (35:50)

had a little episode about a month ago. And when I say episode, it was, I think it was about 10.30 PM. And we were getting ready to go to bed, at least I thought I was. And my wife was got up and started doing chores. She’s never done chores at 10.30 PM. None of us have, but it was like, excuse me, what are you doing? And she said, I don’t know, I just feel like I need to.

do something. What do you need to do?

Alan Durnwirth (36:17)

Bill Gasiamis (36:17)

Alan Durnwirth (36:22)

Bill Gasiamis (36:24)

Alan Durnwirth (36:36)

Bill Gasiamis (36:37)

Alan Durnwirth (36:39)

Bill Gasiamis (36:42)

Alan Durnwirth (36:42)

Bill Gasiamis (36:48)

I like it. It’s just interesting. You triggered that memory. We had a bit of a laugh afterwards with my wife. She doesn’t do that ever, but it was just a strange thing. And a little while later, she went to bed a little while after me and I was in bed and she was trying to contain herself, you know, in the other room, just not be so noisy and so active

Alan Durnwirth (37:10)

Bill Gasiamis (37:11)

what happened with the journey to the book. So you’ve written a book. I do believe you have a copy in front of you there. Can you hold it up and show

Alan Durnwirth (37:23)

Bill Gasiamis (37:23)

Alan Durnwirth (37:35)

Bill Gasiamis (37:37)

Alan Durnwirth (37:43)

Bill Gasiamis (38:01)

Alan Durnwirth (38:02)

Bill Gasiamis (38:08)

Alan Durnwirth (38:08)

When I was walking, my mind would get calmed down. I started remembering things, things that came back that I forgot after my surgery. So I started keeping a journal. And after several hundred journal entries, I started making some of those longer stories as I remembered the details.

And I wasn’t writing a book at the time. I was just collecting memories and sharing stories with you know my my brother that’s on the cover and and it brought us back to our youth and this kind of thing. But after so much, you know, you know, so many decades of

living with the same same thing. I just I had to write it down. I had to put it all down. And it’s been a great healing process for me to put it all down. It was been a healing process, you know, my my kids have been able to read about my youth and what happened and how, you know, they see how I’ve persevered.

Bill Gasiamis (39:40)

Alan Durnwirth (39:40)

Bill Gasiamis (40:03)

Alan Durnwirth (40:04)

had a great attitude about it. For the most part. doctors always said that, you know, your healing is is is going well because of your attitude.

Bill Gasiamis (40:34)

Alan Durnwirth (40:43)

Bill Gasiamis (40:44)

Alan Durnwirth (40:49)

Bill Gasiamis (40:49)

more than 50 % in the positive rather than the negative,

Alan Durnwirth (41:02)

Bill Gasiamis (41:03)

seems to tell your story, is it about telling your story?

Alan Durnwirth (41:28)

what I have, what I suffer from currently has always been there. I’ve I’ve had a health I was born with a arterial venous mal malformation, which has been present since birth and it’s affected me for 57 years. But I didn’t realize it.

Bill Gasiamis (41:58)

Alan Durnwirth (41:58)

Bill Gasiamis (42:00)

Alan Durnwirth (42:06)

Bill Gasiamis (42:09)

Alan Durnwirth (42:12)

Medicine for my teachers when I was very young. And it’s like, why didn’t anybody ever see that this is what’s happening?

you know, I could have, you know, I chose not to do the blame game. I I kind of went up and down, but in the book that it’s just very this is just these are the facts and this is what happened. This is where I am now. And I’m finally I’m at peace with it now.

Bill Gasiamis (42:51)

Or actually, when did you start jotting

Alan Durnwirth (42:53)

Bill Gasiamis (42:55)

Alan Durnwirth (42:58)

Bill Gasiamis (43:02)

Alan Durnwirth (43:04)

started compiling it. it was very difficult to

pick out certain stories that really moved the needle through the the journey of the book. My youth is very quick, but it sets up kind of the the base of the story. And then it goes into, you know, the brain bleed and then the recovery and then after. Because there was a large gap that I was

kind of coasting through life, you know, I guess. And yeah, I wasn’t having any any major health scares, you know, it was just

You know, I wasn’t having any any seizures or any any major events.

But I didn’t realize that that’s kind of the undercurrent of it. It’s all there, but you don’t realize it. And I think everybody has an undercurrent of of of something.

Bill Gasiamis (44:07)

Alan Durnwirth (44:13)

No, I mean, you could be the way you are now could be because how you were raised by your parents, and you don’t think about why you do something. It just has always been. And and what I did is at one point I was like, why am I still doing it this way? Is this right for my is this right for me? Where did I get that mindset? Where did I

Get that in the first place. so you have to really think about

you know, almost dissect your life and something if you don’t like something, how can I change it? And where did that come from in the beginning?

Bill Gasiamis (44:50)

Alan Durnwirth (45:17)

mind gets quiet and then memories would come up. And it wasn’t something like I was

making them happen, they just came and like, my gosh, I remember that. I remember this. And so I dot jot it down. And then not even thinking about it in in another day, another, you know, how many days later, something else would trigger which correlated with that initial memory.

Bill Gasiamis (46:02)

Alan Durnwirth (46:02)

that’s when things started getting having some momentum of of of a story and a memory.

Bill Gasiamis (46:11)

Alan Durnwirth (46:16)

I can honestly say that I I love myself now.

I’ve let so much.

hurt and anger and and and feelings that I had for so many years just let them go or work through them.

that I can just move forward.

You know.

Bill Gasiamis (46:38)

in the way of your life?

Alan Durnwirth (46:41)

Bill Gasiamis (46:42)

Alan Durnwirth (46:45)

stopping, but there’s kind of

I don’t know, maybe sometime stopping that you have this I can’t do that or

I I I never thought I’d read a book about it, you know. But it it it became like anything if you do a little bit at a time, that’s when things

to fruition. I don’t know. I

Bill Gasiamis (47:08)

Alan Durnwirth (47:19)

Bill Gasiamis (47:40)

Alan Durnwirth (47:52)

Bill Gasiamis (47:53)

the usual stuff, you know? And now

Alan Durnwirth (48:10)

Bill Gasiamis (48:11)

My second book came from that. came from realizing that I could squeeze this book out in a quarter of the time it took me to squeeze out to develop the other book, which was four years.

Alan Durnwirth (48:47)

Bill Gasiamis (48:48)

Alan Durnwirth (48:56)

Bill Gasiamis (48:57)

know, so then you start seeing pieces of the puzzle and for the first time you can go, wow, I know where that fits, that fits right there and that fits right there. And then before you know

Alan Durnwirth (49:09)

Bill Gasiamis (49:11)

Alan Durnwirth (49:22)

Bill Gasiamis (49:23)

For some people it might be walking, for others it might be the gym, for others it might be writing a book or whatever. If I just do a small amount of it within 12 months, that’s a huge amount of things that we’ve

Alan Durnwirth (49:38)

Bill Gasiamis (49:39)

Alan Durnwirth (49:43)

Bill Gasiamis (49:43)

situation of being a positive bittersweet, know, like I miss my kids not being around, but also it’s cool to not have them around.

Alan Durnwirth (49:58)

Bill Gasiamis (50:07)

Alan Durnwirth (50:07)

Bill Gasiamis (50:24)

Alan Durnwirth (50:42)

Bill Gasiamis (50:42)

Alan Durnwirth (50:43)

Bill Gasiamis (50:46)

good about that is my wife was finishing her master’s in psychology. So she, she put that time to good use as well. She was going to make it about her and learn and

Alan Durnwirth (51:00)

Bill Gasiamis (51:00)

took precedence and she put all that stuff on hold and then picked it up 20 years later. And she’s gonna be

Alan Durnwirth (51:20)

Bill Gasiamis (51:25)

Alan Durnwirth (51:32)

Bill Gasiamis (51:33)

Alan Durnwirth (51:41)

Bill Gasiamis (51:41)

Alan Durnwirth (51:50)

Bill Gasiamis (51:51)

whatever they are for you. And

Alan Durnwirth (52:09)

Bill Gasiamis (52:10)

Alan Durnwirth (52:27)

It’s a life story, but it’s not only about health struggles. It’s about who helps you through these struggles, the the love of others and and how we can persevere

It it’s it’s it’s almost a love story of my wife for me.

Because without her I don’t know if I’d be here.

You know, the morning that I went into the ER, I basically had twenty minutes to live. That’s what the surgeon told my wife after my surgery. He said, If you hadn’t brought him in and acted quickly, he probably had twenty minutes.

And for a long time I was like people would say, Why didn’t you call an ambulance? I probably would have made it if the ambulance came. I probably would have

You know, I probably wouldn’t have made it to the hospital.

Bill Gasiamis (53:26)

Alan Durnwirth (53:29)

Bill Gasiamis (53:29)

threw her in the back of the car and drove her to hospital

Alan Durnwirth (53:59)

Bill Gasiamis (53:59)

Alan Durnwirth (54:09)

Bill Gasiamis (54:10)

to the hospital, not from a phone call to dispatch, to get an ambulance from another location to turn up. And she credits her brother as well for saving her life because if it wasn’t for that,

Alan Durnwirth (54:33)

Bill Gasiamis (54:33)

you know, in a difficult time.

Alan Durnwirth (54:48)

Bill Gasiamis (54:48)

Alan Durnwirth (55:01)

[email protected] for an email.

Bill Gasiamis (55:27)

Alan Durnwirth (55:30)

Bill Gasiamis (55:33)

10 miles a day, attention to the things that set him off, and a decision to stop blaming people and circumstances. And then the line I did not expect from a man describing a brain hemorrhage that he loves himself now. Alan’s book, Silent Fuse, is on Amazon and at Barnes Noble, and you can find him at silentfuse.com or on Instagram at SilentFuse Official.

If this episode landed for you, go back and listen to Juan Gonzalez, who talked about his AVM rupture eleven years on. Remember to share this episode with someone who needs to hear it. My book, The Unexpected Way That a Stroke Became the Best Thing That Happened, is also available at recoveryafterstroke.com/book. And if this show has helped you, you can support it at Patreon.com/recoveryafterstroke..

All the proceeds go into keeping the podcast going, paying for the hosting and the person who helps me behind the scenes to put all the episodes up every week and make it free for people who need this type of information after they’ve had their stroke. I’m Bill Gasiamis and I’ll see you in the next episode.

The post Alan Durnwirth: 32 Years After an AVM Rupture and the Undercurrent That Shaped His Life appeared first on Recovery After Stroke.

“I’ll start again when I’m ready.” If a stroke has split your life into before and after, you’ve probably said some version of that sentence, maybe not out loud. It sounds responsible. Heal first, then live. But what if readiness isn’t a feeling that shows up first? What if it’s something you build, often while you’re still struggling? That question sits at the centre of a growing body of research on post-traumatic growth after stroke, and it’s the subject of this week’s mini-episode.

In 2012, Bill Gasiamis had a bleed in his brain at thirty-seven. A month later, he had another one. He looked fine, people kept telling him so, and he spent weeks quietly waiting for the morning he’d wake up feeling like himself again. That morning didn’t come. For most people recovering from a stroke, it doesn’t. And the longer you wait for it, the smaller your world tends to get: fewer plans, fewer risks, more of life organised around the fear of another setback.

What breaks that waiting pattern usually isn’t a feeling. It’s a small, unglamorous action. For Bill, it was a search bar: a drug prescribed to reduce brain swelling was causing sleepless nights and other side effects, and one quiet morning he opened his laptop and looked up how to reduce inflammation through diet. He didn’t feel ready. He felt terrible. But that one change gave him a bit of evidence that he wasn’t helpless, and that evidence built momentum toward the next step.

A personal story isn’t proof of a pattern, so what does the research say? In the 1990s, psychologists Richard Tedeschi and Lawrence Calhoun named this experience post-traumatic growth (PTG) and, in 1996, published the Posttraumatic Growth Inventory to measure it (Tedeschi & Calhoun, 1996). In 2019, a systematic review and meta-analysis pooled 26 of those studies. Across them, just over half of participants, about 53%, reported moderate-to-high growth after a traumatic event (Wu et al., 2019). Growth after a life-altering event is a documented, common outcome, not a rare exception.

Here’s where it gets counterintuitive. A reasonable assumption is that growth only arrives once the pain has passed. A 2014 meta-analysis of 42 studies and more than 11,000 people found the opposite: post-traumatic growth and post-traumatic distress symptoms tend to co-occur, and the relationship between them is curvilinear rather than a straight line, with the highest growth often reported by people who were still, in some sense, in the middle of their struggle (Shakespeare-Finch & Lurie-Beck, 2014). In other words, you don’t have to be finished hurting before you’re allowed to start growing.

Bill’s own recovery wasn’t a straight line either. In November 2014, a third brain bleed led to brain surgery, two weeks after his mother-in-law passed away. He woke up unable to walk, spent a month in inpatient rehabilitation, and took roughly seven years before returning to meaningful work. He wasn’t “ready” at any single point in that process. What changed was that he stopped waiting for readiness and learned to take the next step from wherever he was standing that day.

Does the pattern hold for stroke survivors specifically, not just trauma survivors generally? A 2026 systematic review and meta-regression pooled 10 studies covering 1,046 stroke survivors and found a significant, gradual increase in PTG scores with each month after discharge. The strongest correlates of growth were active cognitive processing (deliberately making sense of what happened) and social support (Klass et al., 2026). A related meta-analysis of post-traumatic growth after acquired brain injury found similar patterns: growth was associated with more time since injury, social connection, and lower depression (Grace et al., 2015). And when researchers tested structured psychosocial programs rather than waiting for growth to happen on its own, a meta-analysis of 12 randomised controlled trials found a modest but real increase in PTG (Hedges’ g = 0.36) (Roepke, 2015). Modest and real beats waiting and hoping.

Honesty matters here as much as hope. Post-traumatic growth is common, but it isn’t universal or owed to anyone; close to half of people in these studies did not report moderate-to-high growth, and that doesn’t mean they’re doing recovery wrong. Growth is not the same as being grateful for a stroke, and it doesn’t erase grief or distress; the two can coexist. Most PTG research relies on self-report, often collected well after the event, so it tells us what people believe changed, not necessarily what changed on an objective measure. The link between social support or active coping and growth is a correlation, not proof that one causes the other. And the intervention evidence is modest, across a small number of trials, so it supports “may help,” not “will fix this.” None of this replaces professional care, particularly if distress is persistent or severe.

If the research has a practical edge, it’s this: small, concrete action seems to matter more than waiting for the right internal state. Two places to start: name one specific area of your life where you’re currently waiting to feel ready before acting, and choose one step so small it feels almost silly, then take it today rather than waiting for tomorrow’s version of yourself.

If you want to take this further with your own care team, useful questions to raise include: what kind of structured support (psychological, peer, or rehabilitation-based) is available to help with “making sense of what happened,” and what social supports in your own life could be strengthened now rather than later.

Bill explores this idea at length in his new book, Your World Doesn’t Have to Stay This Small: A Practical Guide to Rebuilding Your Life After Trauma, Even When You’re Not Ready, available at mybook.to/yourworld. If stroke is your story specifically, his first book goes deeper into one survivor’s path through post-traumatic growth after stroke, and you can read more at https://recoveryafterstroke.com/book. For listeners who want to support this work directly, you can also do that at https://patreon.com/recoveryafterstroke.

This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.

The post Why Waiting to Feel Ready Is Keeping Your World Small appeared first on Recovery After Stroke.

The night his stroke happened, Ramandeep “Bobby” Chaggar didn’t feel what he expected to feel. No pins and needles. No dramatic collapse. Just a left arm that wouldn’t answer him anymore.

 He limped to the kitchen anyway, poured a glass of water, and brought one back for his wife because that’s what you do, even when your body has just stopped taking instructions from half of itself. It wasn’t until the ambulance service ran him through the BFAST test over the phone that the word “stroke” entered the room. A right ischaemic pontine stroke, in December 2023. He was, by his own account, in the best health of his life at the time: no blood pressure issues, no diabetes, cycling a hundred kilometres most weekends.

Bobby grew up in an era and a family where a stroke wasn’t something you researched; it was something you heard about secondhand. “That particular cousin’s father’s grandfather had a stroke, and he’s gone,” is how the news used to travel. Nobody around him distinguished a stroke in the brain from a stroke in the heart. There was no internet to check, only the flat, final verdict that passed between relatives: he’s done for.

 It’s a belief he carried into his own stroke, even as his medical training Bobby spent years as a veterinary surgeon in India before qualifying in Australia told him something else was happening. That veterinary background is exactly why he recognised what was going on in his own body faster than most people would. It didn’t make the belief disappear. It just meant he was fighting it from the inside while everyone around him was still catching up.

In those first disorienting hours, Bobby was convinced his arm had started moving again. He filmed it and sent the video to his sister as proof, he thought, that he was already turning a corner. By morning, the movement was gone. “It was like a bad dream,” he says. “I was like, what was that?”

 What he was seeing wasn’t recovery. Doctors later explained that in the earliest hours after a stroke, the body can still fire off remnant spinal reflexes old movement patterns held in the spinal cord that can briefly activate on their own, independent of the brain damage that’s actually occurred. It’s a strange, almost cruel mechanism: the body offering a flicker of hope before the real work of recovery has even started.

Bobby spent 45 days in rehabilitation at Parkville, six months in a wheelchair overall, and credits one moment above almost everything else: his first physiotherapist he calls her Hannah sitting on the floor, moving his foot, and telling him he would walk again. It mattered enough that his book was originally going to be titled Walking with Hannah, before privacy considerations changed the plan. His son, who narrates the audiobook, still opens the acknowledgements by thanking her directly.

This is the part of Bobby’s story that speaks most directly to what so many stroke survivors go through and rarely say out loud. In his culture, and in his family, showing emotion, especially for the men expected to be providers and caretakers, wasn’t really an option. When his father died in 1997, he was told to be strong for his mother and sister. When his mother died in 2013, he was told the same thing again.

“I’ve been told that stroke is a part of grief, and you should not suppress your feelings.”

It took his brother-in-law showing up every day to help him with basic care showering, dressing, the things that felt hardest to accept before something shifted. His own psychologist eventually gave him the instruction that reframed everything: put on your own life jacket first, before you try to save anyone else. It’s advice Bobby now extends to every caregiver he talks to: the person supporting a stroke survivor needs their own support too, or they burn out trying to hold everything together.

He isn’t alone in this. Bill has spoken openly on the podcast about his own experience with unexpected, involuntary crying after a neurological injury, and how much energy goes into reassuring the people around you that the tears don’t mean something is wrong. For Bobby, permission to cry didn’t erase the culture he was raised in. It just meant he stopped fighting it.

Bobby’s recovery is full of small, deliberate acts of reclaiming identity. He got his first tattoo not long after his stroke, partly, he says, because people notice ink before they notice a limp. He’s spent years slowly making peace with not tying a turban the way he used to, calling himself, with real affection, a recovering “turbanator.” He built his own incline-and-decline walking circuit near his home and quietly upped the difficulty every fortnight, the same instinct that now has him choosing stairs over the lift at the allied health course he’s completing.

Running, he says flatly, is overrated. He can’t do it anymore, and he’s decided that’s fine. It’s the same acceptance that let him and his family move to Perth just one month after his stroke, and then move back again when isolation made the recovery harder than the geography ever was. 

None of it looks like the version of recovery he grew up believing in, the one where a stroke simply meant a story was over. Bobby’s version has a motorbike with a sidecar he now rides himself, a book he wrote one voice note at a time because typing with one hand wasn’t fast enough, and a fairly simple message for anyone who asked him to just think positively: some things are still hard, and that’s allowed to be true at the same time as everything else. 

If you’re navigating your own recovery or supporting someone who is, Bill’s book, The Unexpected Way That A Stroke Became The Best Thing That Happened (recoveryafterstroke.com/book), walks through ten practical tools for rebuilding after a stroke. And if trauma has made your world feel smaller than it used to be, Bill’s newest book, Your World Doesn’t Have to Stay This Small, is written for exactly that. 

If this episode helped you, you can support the show directly at patreon.com/recoveryafterstroke.

This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.

He was taught a stroke meant you were gone. Bobby Chaggar’s story proves otherwise and shows why crying after a stroke is nothing to hide.

Highlights:

00:00 Introduction

Transcript:

Ramandeep (bobby) chaggar (00:00)

in the hospital, I thought my arm started moving.

And the doctors, and when I got up in the morning, it was like a bad dream. No, it was not moving again. So I was like, what was that?

Bill Gasiamis (00:19)

Physiotherapist whose promise

changed the course of recovery and what it actually took for him as a man raised to be the strong one to let himself cry.

Before we get into it, if trauma has made your world feel smaller than it used to be, my new book, Your World Doesn’t Have to Stay This Small, is exactly what it’s about. Search for it on Amazon or tap the link in the show notes to grab your copy today.

And one more thing, this show exists because listeners decide it’s worth keeping going. There’s no other funding behind it. If an episode like this one has ever helped you or helped someone you love, even a few dollars a month on Patreon is what keeps these conversations free for the next person who finds themselves Googling this stuff alone at two in the morning, scared, looking for someone who’s actually been through it. That’s all.

patreon.com/recoveryafterstroke.. A small amount every month makes a massive difference.

But now let’s get into it. Here’s my conversation with Bobby.

Bill Gasiamis (01:56)

Ramandeep (bobby) chaggar (01:58)

Bill Gasiamis (02:00)

Ramandeep (bobby) chaggar (02:10)

Bill Gasiamis (02:11)

Ramandeep (bobby) chaggar (02:14)

So I I specifically remember this number because my mom had fallen and broken her shoulder once while walking in Labrador. So that day we counted the animals and we said, okay, no, after this, no more. That’s it. And the parrot was trilingual because the kids would play with him, so he wouldn’t know nursery rhymes, he would know the whistles, and then my grandmom’s dialect was Punjabi, so he could he could swear in Punjabi, and he could swear in Hindi because my mom was Hindi. So that’s why trilingual.

Bill Gasiamis (03:08)

love that. That’s an awesome way to grow up.

Ramandeep (bobby) chaggar (03:09)

Bill Gasiamis (03:12)

Ramandeep (bobby) chaggar (03:22)

And I was so excited because my son’s school was only five minutes away. So I was always looking forward that I’m gonna drop him off in school in the sidecar. It’s gonna be such a big thing for him. So it was quite cool. So that’s the reason we were expecting it. It took almost two months for it to come via ship. And you know, once a ship leaves the country, there’s no way of live tracking it. There they must must be ways for the guys who are doing it, but for the clients, they have no way. They have no clue. They just talk to the customer care.

And you have no idea what’s happening. And suddenly one day it just pops up and they say, Yeah, it’s in customs. Here you go and you have to do this, this and this and come and pick it up. So that’s the excitement.

Bill Gasiamis (04:23)

Ramandeep (bobby) chaggar (04:26)

We were just looking forward for the bike. Yep.

Bill Gasiamis (04:29)

In your book, you wrote about your culture that when somebody

Ramandeep (bobby) chaggar (04:34)

Bill Gasiamis (04:35)

Ramandeep (bobby) chaggar (04:47)

So you know a few things like that. But there are families who’ve been through stroke. Now I’ve realized and also met them. So they know stroke one could recover from the stroke and one also forgets about it over time. I’ve heard that. But mostly the thought process was because it was not too kind of a disease. And we also did not know what is a stroke in the heart. Some would someone would say he had a stroke in the heart, someone would say he had a stroke in the brain. So we had no idea what that meant.

We could just as kids, as growing up people, we just knew that he had a stroke and he’s done for, he’s gone. That’s one. And because of my medical background, my veterinary background, I realized that I was having a stroke. because it was not their usual pins and needles and there was no sensation. I couldn’t move my arm. I managed to limp. I went all the way to the kitchen. I trudged a little to the kitchen. I had a glass of water, brought a glass for my wife.

And I’ve also realized, learnt from doctors here that there are remnant spinal reflexes which work for some time. So those reflexes help you I think, navigate the initial few hours. It’s just that’s how we are made. Because I, you know, in the hospital, I thought my arm started moving. And the doctors, and when I got up in the morning, it was like a bad dream. No, it was not moving again. So I was like, what was that? And I have a video of that. I was sending it to my sister.

Look, my arm is started to move. Wow, I’m so happy. So they told me that was just a part of the spinal reflex. So maybe that’s what made me go to the kitchen and back. So we called the Ambos and they did the BFAST test. It was FAST initially, but now the acronym has changed to BFAST. so they did that over the phone and they confirmed it was a stroke. And they were they said they’ll be at my place in two minutes. And then we made the second phone call to my brother in law who

works with neurointerventional surgeons all over Australia. He’s also vet by education. So I thought he might be the best person to give me advice. And he always used to share his stories of patients, aneurysms, brain things, strokes. So I thought that, you know, he he will fix me, man.

So we called

Bill Gasiamis (07:10)

Ramandeep (bobby) chaggar (07:11)

So they drove me to Royal Melbourne and that’s where my journey started. Yep.

Bill Gasiamis (07:27)

My journey started at the Austin hospital, ended up at the Royal Melbourne as well. And I had my surgery there and I learned to walk again at the Royal Melbourne hospital and at their Parkville facility where the rehab was done.

Ramandeep (bobby) chaggar (07:42)

Bill Gasiamis (07:43)

experience. Really helpful. So you are also a vet. Okay. A surgeon as well. Are all

Ramandeep (bobby) chaggar (07:52)

Bill Gasiamis (07:53)

Ramandeep (bobby) chaggar (07:56)

When we used to technically pass out in those years, we were supposed to take take care of everything surgeries, medicine, prevention for all these species throughout. And obviously it was a it was a big experience learning practically as we went. Because when my father became a vet, my my grandparents were like, I don’t know whether anybody’s gonna get married to him or not. They they got worried. It was looked so down upon though that profession, you know. So he bought clamor to it. He showed everybody that passion.

Can happen. It can happen in bed science also. In India. It must be good in other countries, but that’s all I know about India. Only the rich class had the dogs. The Britishers, they’re the people who were connected to the Britishers when they had gone, when they had left the country. Only that rich class was able to afford dogs because you know it was a poor country. So that’s where he started. Yep, yep. Yep. And now you have specializations

Bill Gasiamis (09:05)

Ramandeep (bobby) chaggar (09:08)

So things like that. Yep.

Bill Gasiamis (09:17)

Ramandeep (bobby) chaggar (09:19)

Bill Gasiamis (09:20)

Ramandeep (bobby) chaggar (09:28)

Bill Gasiamis (09:30)

Ramandeep (bobby) chaggar (09:42)

Bill Gasiamis (10:06)

Ramandeep (bobby) chaggar (10:07)

So the single stomach animals are mostly similar, and how the physiology of the body works, how the brain works, how the conduction works, all the diseases, they have things like MS, they have things like diabetes. We used to treat them all the time. So yeah, yes, it helps. It does. Yeah.

Bill Gasiamis (10:22)

so give me a little bit of an idea of you’ve gone to hospital. you realize that your arm is moving and now it’s no longer moving. And then how long were you in hospital for? And what was that, experience like what, what was your hospital stay like?

Ramandeep (bobby) chaggar (10:43)

Bill Gasiamis (11:09)

left side your whole left side was gone.

Ramandeep (bobby) chaggar (11:11)

Bill Gasiamis (11:18)

Ramandeep (bobby) chaggar (11:18)

And they can just reverse the stroke instantly. But I did not know the concept. So those injections basically work and dissolve the clot which is in the brain. But if if if the stroke is of a bleeder’s type, it can also kill the person. So we were waiting for the MRI. We are waiting for the MRI when’s that gonna happen. And it was unfortunately a Saturday night, Sunday morning. So everything were lined up. You know how the systems are in Melbourne. So all the emergency patients who are dying are first, people who are not dying are second, people who just

Got normal things, they’re third. So things like that. So probably that took a little while. So I had my MRI on Monday. So I was in the hospital till Monday. I just had nurses coming in assessing me if I could stand, if I could step forward, step backwards. I mean, obviously they were doing my cognition tests and everything. I got tested for a drug which was is which is called clopedrogel, I think. that is the one which dissolves clots.

So they give that as an oral thing to you and they test the blood in the body that whether it responds to that or not. So they are ready for it. As soon as they have the result, they just shoot you with injections. But it was unfortunate that I got diagnosed only in about twenty four hours. And then they moved me to the rehab. I was lucky to get a room and this amazing partner in my room, and that’s that’s when my rehab started.

Bill Gasiamis (12:47)

Ramandeep (bobby) chaggar (12:48)

People were literally telling me that you’re eating like a Labrador, man. What happened? What’s happening? I was just like this. And the food in Royal Melbourne rehab is really good. They come to you with a menu and they ask you what you want. And so I was ordering everything I loved. So and I was hearing in one of your podcasts before, it it was literally like that. I had the I’ve had the best time of life in the last two years.

Different realization, it’s changed me, and I’ve just had the best time. I always liked exercising. I’ve exercised

Bill Gasiamis (13:39)

Ramandeep (bobby) chaggar (13:42)

Bill Gasiamis (13:51)

on the day that you noticed some movement, like in rehab, I think was that on day 28 or something like that, there was a little bit of, first

Ramandeep (bobby) chaggar (14:26)

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Ramandeep (bobby) chaggar (14:30)

I still have that video. I remember there was this friend of mine who used to come to the hospital and she used to massage my arm. So that is also called I think it’s called passive passive stretching. And she would really press my arm and she will caught cause me pain. And I’ve been told that I’ve got a good pain threshold. Maybe that’s because of my martial arts training when I was younger.

Bill Gasiamis (14:52)

Ramandeep (bobby) chaggar (14:53)

And I remember my roommate, he he had a problem with his arm, and they had to give him Botox injections to paralyze those muscles. So he could move and the muscles could be pain free. So that’s a that’s a routine thing which they do. So Botox is basically bottleneum toxin, which causes paralysis. and they give it in the muscle which is spas spas which is spasming for the person and it it releases the muscle and they feel better. So I was fortunate that she was there and I remember after her

Three, four weeks of massaging my hand, and my wife used to be sitting beside my bed and she used to be pressing on my left leg, I remember. So that particular day I could see my foot move a little like this, b which I could. So that was that was a big one for me. I just cried and I didn’t know what to what to expect. my God. Yep.

Bill Gasiamis (15:41)

that is all often a very good sign. And then, a lot of people kind of built from that.

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Ramandeep (bobby) chaggar (16:06)

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Ramandeep (bobby) chaggar (16:13)

So I had no clue what was going on. But then over time I realized there was a diabetic ward. So those were guys was ob obviously coming in because of their neuropathies. They’ve lost some limbs. Some people were lucky, they only lost fingers, some people unlucky, they lost legs, arms sometimes. But it can be it can be quite challenging for them also, you know, certainly because it’s too quick. I I think stroke is still slow. It gets you ready, it gets you going, but it’s it’s slow paced. And now I’m an expert, I know what is gonna work. So I’m still completing three years in December. So

With an exercise, I I know the stress and I know the difficulty and and and I can feel it. I can feel it that this will work. So in their in their case they don’t have time. They just lose a limb and they just have to learn in three, four days. Fortunately their brain is okay, so they are more you know, neuroplastic, I would say, but as compared to us.

Bill Gasiamis (17:17)

Ramandeep (bobby) chaggar (17:26)

So this does happen in diabetic patients, very common. So it I kept thinking of those those days, you know, when I would I would hear of him, we would go and visit him in hospital. So it’s very different. They are

Bill Gasiamis (18:02)

Ramandeep (bobby) chaggar (18:03)

Bill Gasiamis (18:18)

I’m to make a few huge assumptions. You’re a male, you’re Indian and your culture probably makes it difficult to accept care, especially when it comes to physical care. you know, being treated as stroke survivor in a rehabilitation hospital, when your left side’s not working means that people have to shower you and, help you at the bathroom and all that kind of stuff. What was that like for you?

Ramandeep (bobby) chaggar (18:47)

That the elder people or the boys are more looked from a perspective of as providers and caretakers. So I remember when my father passed on in 97, I was told that be strong for your mom, be strong for your sister. And then when my mom passed on in 2013, I was told the same thing: be strong for your sister. But there was one of my friends, one of my uncles, who told me that, you know, you need to do something, you need to have a couple of drinks, go to a corner and just cry it out, man. It’s important.

So now I know that grief is important. and I was I’ve been told that stroke is a part of a grief and you should not suppress your feelings. Like I can do with that box of tissues right now. I can go all out. No problem. Yeah, yeah, yeah.

Bill Gasiamis (19:50)

was just talking about my situation a few days ago. This happened to me in 2013. Brain surgery was in 2014 and I cry all the time. It’s not really like it’s strange. Have you heard of the super pseudo bulb affect?

Ramandeep (bobby) chaggar (20:06)

Bill Gasiamis (20:07)

condition. It’s a condition where people who with neurological injuries tend to cry, or laugh

Ramandeep (bobby) chaggar (20:14)

Bill Gasiamis (20:15)

sorry, what neurosurgery meant to me, you know, like, I’m only standing there because of neurosurgery without it, I wouldn’t be standing there. My surgeon was in the room. It was 400 people in the room. And I got up and I didn’t make it to the front lectern before I started crying. And then when I got up to say the speech, I was holding on to the lectern, just waiting for the crying to stop just so that I can start the speech. And then through the speech, I had to stop a couple of times.

Now I wasn’t upset. I wasn’t sad. was, I was excited, but the 400 people and the, situation talking about me, my family, et cetera, and having to describe what neurosurgery meant to me made it impossible to get through that speech. I got through it, but it was,

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not in a, not in a situation where I have to talk about something that’s emotional, that’s about me, my experience. And if my family involved, forget about it. can’t stay out kind of the poker face. No way. Yeah. But I can in a poker game when we’re trying to take somebody else’s money.

Ramandeep (bobby) chaggar (21:52)

Bill Gasiamis (21:59)

used to cry with the cat tripping over or something

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what’s today today we’re recording on Saturday on Thursday night. I was in Melbourne at Marvel stadium. there was an electronic dance music festival, 60,000 people in a stadium for a DJ. It

Ramandeep (bobby) chaggar (22:39)

Bill Gasiamis (22:39)

But it wasn’t big cries, it was just tears and excitement and something else happening that made me cry. And I was moved by the fact that I was A, at the event, B, it was such an amazing event that all the people there were having a great time. Like, it was moving rather than sad or upsetting or,

Ramandeep (bobby) chaggar (23:14)

Bill Gasiamis (23:16)

that’s what’s happening. That was the hard part because you know, we’re from a Greek family. They see you cry. Everything’s terrible. Everything’s bad. You know, they don’t know. They don’t know how to deal with it. You know, so you’ve got to reeducate people. That was the hardest part of that experience for me. That’s all it was.

Ramandeep (bobby) chaggar (23:37)

I keep thinking that since I was always in sales and I enjoyed my sales, I don’t know if that’s gonna settle down ever with me, my emotions.

Bill Gasiamis (23:47)

know, and he needed to continue, continue his fluids so that he doesn’t dehydrate. It was.

We laughed about it like you and I are laughing. Cause that’s he’s got to that stage where it’s like, wow, you know, it is what it is. Like no big deal. He was totally moved by the fact that he was a alive, able to be at the wedding, get married to the person that he loved. and then, and then later on they had a kid and it was down all downhill again from there, you know, more tears, more crazy stuff.

Ramandeep (bobby) chaggar (24:33)

Bill Gasiamis (24:34)

That’s just how it is. Many cultures are like that. So who’s Hannah?

Ramandeep (bobby) chaggar (25:05)

I c we couldn’t see them because you know it was post COVID so everybody was still using masks. But I could just see the eyes. And she was so beautiful.

So she sat on the floor and she was moving my foot.

So it was quite moving for me, even now. Sorry for that.

Bill Gasiamis (25:41)

Ramandeep (bobby) chaggar (25:42)

Bill Gasiamis (26:03)

And I think at the same time, that’s kind of when you had the realization that you should write a book. how did that come about? What was the, why did that carry so much weight that situation?

Ramandeep (bobby) chaggar (26:33)

Bill Gasiamis (26:39)

yeah, yeah. yeah, it’s okay. And yes, they have. Yeah.

Ramandeep (bobby) chaggar (26:43)

For me, only that one promise coming from a physio was a big deal.

I wanted to share with my friends, I wanted to share with my clients. I’ve got a lot of good people in my book, and vice versa. So I I wanted to share with all of them what I’m going through. So I was constantly taking pictures, recording voice notes. I was not so good at typing because you know I just had gone from two hands to one hand. So I just couldn’t type. So I was I was doing a lot of voice to text notes, I was writing notes, I was taking pictures, I was taking videos. We are very audiovisual. I am very audiovisual rather. So

I was really doing a lot. And then I also have a habit of listening to audiobooks. And I was doing prayers and I was listening to audiobooks. I don’t even remember what book I was listening to. maybe I think it was Andrea Gossi the one. I was listening to that one. Moving story. Good story. So I thought, hey, why why don’t why can’t I convert all this what I’m writing into a book? So and I had ample time.

So I thought

Bill Gasiamis (27:41)

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Bill Gasiamis (27:55)

I know that I know that feeling like same same here when I wrote the first book,

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then that would be a bonus. So it was the idea was about that. And then, of course, when you have a book, you may as well have the best book, and you may as well sell as many copies as possible. Well, what’s the point of having a book otherwise, you know, you want to make sure that it gets sold. So I really relate to what you’re saying about that. My book idea came in hospital as well. So no, the podcast came in hospital as well. I was getting wheeled transferred from the Royal Melbourne.

to Parkville and I was waiting in the transit lounge and that is when I had the idea to start the podcast, but I was never going to do it. I don’t think I was going to do it. A friend of mine put the idea in my head later on again. And because of that, the podcast emerged. I had the idea, he reinforced it. And then I went ahead and did it. And the book again was an idea from another friend. You’ve learned all this stuff, know, you know, how, are you going to do with it? You how are you going to…

tell other people about it. The podcast was one way and then the book was another way. And of course, then it’s not just about me, it’s about other people as well. Now, if I understood correctly, are you from the religion, the Sikh religion? Did

you seek right?

Ramandeep (bobby) chaggar (29:37)

Bill Gasiamis (29:40)

How is dealing with that situation where your left side doesn’t work and the use or the need to have a turban on your head, do you kind of deal with that?

Ramandeep (bobby) chaggar (29:57)

And I was very proud of my turban because people used to tell me that your turban looks fantastic, man. You’re the best looking Sikh we’ve we’ve seen around, you know. So I was quite proud of it. And I was I used to feel on top of the world with my turban. So every every trip of mine, every travel of mine, I had to pack a couple of turbans and and I’m I think I am O C D. So I used to match it with my shirt. Sometimes I used to match it with my ties. It should should be the same color. Sometimes I’ll match it with my jeans. So you know it was it was quite a task.

Every time I’m traveling. But I loved it. Having said that, I decided that my son is not gonna be a turbanator. I called myself a turbanator because of the same reason. I said that’s one thing less to take care of. It’s not that I don’t w want him to be a Sikh. He he realizes he’s a Sikh. He’s a good Sikh. He does what I do in the Sikh Sikh temple as well, which is serve. But from a religious perspective, he’s okay. He you don’t have to have a turban on your head to be that religion. You know, you can be a good person from that religion perspective also.

So I was very proud of it and not being able to do it initially was a big blow to my ego or my you know image in my own brain. I lost I lost my identity, I I thought, and and my my prayer consisted of that that you know I hope I can go back to tying a turban. Even you can see I still don’t dye a turban. A lot of my friends tell me that I look good like this. The man bun suits me. But you know, I’m like, okay, go with the flow. Well, let’s see, let’s see.

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it personal shame or is it or back in the day was a shame within the community from other people?

Ramandeep (bobby) chaggar (32:33)

Since they are warriors, they’re supposed to be a warrior race. It was just said that you don’t do any kind of bad thing to your body, just take care of yourself, be healthy. So if if if someone saw a Sikh smoking in public, they will definitely go up to them and tell them that if you are a Sikh, why you smoking, man? You should cut your hair. Just take it easy. So things like

Bill Gasiamis (33:10)

Ramandeep (bobby) chaggar (33:10)

Personally ashamed of not being able to do it.

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Ramandeep (bobby) chaggar (33:43)

This one for example And it’s got my son’s name here. is it? It’s here. That’s Raj, Raj, yeah, that’s his name. So

Bill Gasiamis (33:55)

that the impact that arm that, the arm that was impacted by the stroke?

Ramandeep (bobby) chaggar (34:00)

my first nurse who sat with me and she told me that, you know, you’ll be fine. And she held my hand. So she had a few. So maybe that had my had an effect. And then my brother in law said, he said, just don’t worry, man. When he’s when he saw me upset, he just told me, he You don’t have to be upset, you’re alive. Just just get okay, get a few tattoos, just travel around the world, do that. So, you know, that was that’s just got stuck in me. That okay, I want to do this. So I did it. Got it done. Yeah, yeah, yeah.

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Ramandeep (bobby) chaggar (35:03)

Look at the car, he’s come in. So he was quite polished. So and still he had tattoos. So the it broke the s the usual stereotype, you know? Everything that’s stereotypical. So I thought, yeah, I think this is the right time for me if I want to do it, because people will not notice my little limp. Because I was still limping and I was in a bad way for for at least a year. I was quite negative in my mind. I mean, and especially when I was 120 kilos, I don’t know what to do about do about it because I could not exercise, I could not cycle.

Just didn’t know what to do about it. And I could not fast at that time because I I was having so many medicines morning and evening. So it it would call a cause acidity. So I was quite negative end of the spectrum. But that’s the time when I realized when I then I thought that I don’t care about anybody else. I am just doing this, man. So I looked up a few people and this lovely girl who used to come to drive for me, she took me around we were in Perth at that time. So she took me around

my house and we went we visited a few places and then there was this lovely gentleman who was coming to Perth and he was apparently from Melbourne. So that was my turning point. So this happened in December. I booked him for for my appointment for for my tattoo in Perth. But then he told me that he he said, look, if you want to move back, if you are moving back eventually, because I had that in my mind. I wanted to move back. So he said if you’re moving back, I’m based out of Melbourne, just come to me there. So that’s when it happened.

That was my new year gift to myself. And everybody was so, you know, amazed with my the the thing which I had done on one leg. And they were like, Wow, that’s a good one. Man, where do you do it? I was like, there’s a special guy who does this. So I was just end up talking of that and not of anything else. I was so happy. I think,

Bill Gasiamis (37:00)

Ramandeep (bobby) chaggar (37:00)

Bill Gasiamis (37:02)

of the things my wife says to me every so often, she says, we should go live in a different location for a little bit, know, try the beach or whatever. And I’m thinking, well, you know, that sounds like a great idea. But in my immediately in my mind and in my body, I tense up and I just find that thinking about moving.

emptying a house, filling another house, doing all that stuff just fills me with like dread. And I don’t know why it’s her idea is a great idea, but I just feel kind of comfortable or whatever. But I wouldn’t think of moving. You moved your family back to Perth. And what was that like? Because.

I can’t imagine leaving Melbourne and going to Perth and packing up the whole family, the whole house and all that kind of stuff and doing that. Not because I can’t do them. I can’t live in another location because I can’t do all the work that comes with that before and all the work after. It feels like it’s going to take up way too much of my attention, time, energy. What was the move like for you?

Ramandeep (bobby) chaggar (38:10)

We had no friends, we had no support system there. Although we were in a very good place, we were very central as compared to the country here. Because we were st always struggling to get physios in, OTs in. So it was, you know, a constant struggle. So over there we were central, so everything was okay, we’ll do this. It was just bang on. And I spent a good time just learning I mean, getting myself stronger, walking every day in the morning. So that was the positive. But I was quite negative, in here. Physically I was positive, but mentally I was quite I was a goner.

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Not let you come back. I mean, so we had the discussion and they almost fired me, but they were happy to take me back when I was back in Melbourne, but they still let go of me. So I don’t know where what happened. I don’t have a job.

Bill Gasiamis (39:36)

Ramandeep (bobby) chaggar (39:36)

yep. So I think that was a very silly decision. But that whole year I spent like that in December, I moved for my son’s holidays to my sister’s house in Melbourne. She’s also in Melbourne, and we were there for about two months. she’s in the Bay side. So after spending that quality time with family and people who were familiar, I had friends visiting me, I had people visiting me, I had so many doctors, I had these doctors’ support system from RMH.

supportive stride strides workshop, which was happening, things like that. So it was it just helped me recover. And I thought that this is it, man, that this is what I should do. And and then I was, you know, I was still talking to my psychologist over the phone, and she in the book by mistake, I I just wrote a he. I think I missed the S because of this bloody autocorrect. She told me that look, you need to wear your seat your life jacket first. You know, that was one statement.

Ha ha.

made me calculate and rethink.

So that’s when we decided, okay, let’s come back. So twice, twice in here. Yep,

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kind of motivated to help their loved one. Often they end up becoming sick and passing away before the stroke survivor. So everyone needs to put on their life raft, their own life jacket first. Once they’re stable and everything is okay, then they need to assess what they can do for the other person. I love that. Such a profound statement. I can see why it moved you so much.

Often stroke survivors also complain, not complain, but they mention when somebody says, just think positively. what was it like for you to hear that? Just think positively

Ramandeep (bobby) chaggar (41:43)

Bill Gasiamis (41:44)

Ramandeep (bobby) chaggar (41:44)

Sorry.

So it was quite common to hear that all the time. And I wouldn’t even tell anybody that I’ve had a stroke. I wouldn’t tell them. I will just talk to them. I will try to hide my walk. I don’t know, I was a little shameful. I don’t know why. For example, I’m reskilling to be an allied health assistant at the moment in Boxhill Institute. So it took me about six months before I disclosed to my class that, you know, I walk funny sometimes because of my stroke. Because I just didn’t want to tell anybody. I was a little apprehensive.

And when I warmed up when everybody got to know me and I was I’m like probably the friendliest in the class. So everybody likes me. So then I told everybody, they’re friends. I said this is this is what has happened, that’s my book. Please read it. See if it helps someone. And I don’t know if this book is gonna actually help someone or not. I don’t know if there’s no scientific information in that. There’s no medical information. But what is gonna help in that book, I’m not sure. But the idea was just if even it can help one person.

Bill Gasiamis (42:46)

the timeline that they’re in in their recovery, whether it’s emotional, mental or physical is unique to them. So that one word might be overlooked by you and me, but then somebody else goes, that’s just the word I needed to hear. And that’s why 400 episodes of the podcast are really good because there’s something in at least one of those episodes for everybody, you know, so it will, it will help. It will make it so that people

maybe even if they just realized that they can write a book, maybe if they realize that they could just share their story, that’s all, that’s good enough.

So, how about this whole new normal statement? Now some people are told that they have to adjust to their new normal. And I kind of, I see why people say that it helps with acceptance in some situations when you have to let go of how you went about the past, how you did your life previously.

when you were more physically able-bodied or more cognitively able. So how did you handle the new normal comment statement?

Ramandeep (bobby) chaggar (44:20)

But then, you know, the whole religious part and how we’ve been brought up, it’s with a lot of acceptance. So which is, I think, important for a child sitting next to someone who’s a nobody, or for a child who’s sitting next to someone who’s super duper rich. Maybe he’s a prime minister of the country, but they are sitting on the same level and having food, for example, on the floor. Someone who’s sitting next to you who’s who cleans houses on the floor. They’re humans.

So I think that probably got me ready for the acceptance. I mean, that that primed me for the level of expect acceptance we had. I had to work less towards accepting things. and yeah, for example, I can’t run at the moment. But then what I say to people about that, that it’s overrated, I don’t care. You know, for example, so that’s it. That’s my acceptance. That’s what I do. Make a joke of it, man. That’s it. You can’t do it, you can’t do it.

What do you do?

Bill Gasiamis (45:11)

is overrated. That’s the I’m going to use that now as well.

Ramandeep (bobby) chaggar (45:16)

yep.

Bill Gasiamis (45:18)

couple of weeks, I’m going to go and spend some time away with a friend of mine. I’ve got a really amazing friend. We grew up together. He used to work at the Royal Melbourne hospital when I was there. He was a radiographer and he would come and see me when I was admitted. He would do my scans. Amazing. Like I’ve known this guy my entire life since I was about four years old. And we’re going to go and spend eight days just away from the whole family, the wives, everybody. We’re just going to go to Hawaii for a little bit.

Ramandeep (bobby) chaggar (45:46)

Bill Gasiamis (45:46)

Ramandeep (bobby) chaggar (45:52)

Bill Gasiamis (45:53)

Ramandeep (bobby) chaggar (45:55)

Bill Gasiamis (45:56)

left leg, my left leg goes down a little bit differently from my right leg. And because I have proprioception issues and the feeling is not correct, I never know when it’s exactly in the right position. And I risk injuring my knee because sometimes I can overextend, hyper extend. And, and

Ramandeep (bobby) chaggar (46:15)

Bill Gasiamis (46:17)

the foot going down and my ankle being solid. So I don’t want to run. I can run across the road to make sure that I’m safe and there’s no car coming too fast or injuring me, but I’m not running two kilometers or a marathon or anything like that.

Ramandeep (bobby) chaggar (46:37)

Bill Gasiamis (46:38)

it makes it more fatiguing, more exhausting.

Ramandeep (bobby) chaggar (46:44)

Bill Gasiamis (46:48)

Ramandeep (bobby) chaggar (46:51)

Bill Gasiamis (46:52)

Ramandeep (bobby) chaggar (46:56)

Bill Gasiamis (46:57)

When I say it’s fine, I look fine, but my leg is still tightening. is fatiguing. is, you know, it’s not the same as my right side. So I always choose the stairs going up. And the reason is because I want to make sure that I don’t lose that skill of climbing the elevation on the steps. And if I go to somewhere where there’s an elevator or, you know, one of those travel elevators, you know,

the travel escalators. Yeah.

Ramandeep (bobby) chaggar (47:43)

Bill Gasiamis (47:46)

Ramandeep (bobby) chaggar (47:50)

Bill Gasiamis (47:51)

Ramandeep (bobby) chaggar (47:53)

same same habit. So Boxell Institute, my classes are usually on the fourth floor. And on most times I’m not using the lift. I’m just walking.

Bill Gasiamis (48:02)

Yep. And

Ramandeep (bobby) chaggar (48:03)

Bill Gasiamis (48:03)

Ramandeep (bobby) chaggar (48:18)

Bill Gasiamis (48:20)

Ramandeep (bobby) chaggar (48:24)

Bill Gasiamis (48:28)

Ramandeep (bobby) chaggar (48:28)

You the flora and fauna rather than the just the

Bill Gasiamis (48:46)

Ramandeep (bobby) chaggar (48:47)

Big deal for me. So that was my thing to do. So that was my two hours, three hours in the morning. I would do that circuit. And in fact, this friend of mine who you might read about in my book also, who was my Sunday walking partner, I encouraged him also to do the same. But you know, it’s it’s it’s it’s I don’t know, it’s it’s putting someone at risk. It’s risky behavior. That’s what I’m learning at my institute also. So they teach us about risk that this these things can put you at risk and you try not to get hurt first.

And then you’d work on the things. So I don’t know why I was doing it. I’ve always been pushing myself all the time. And I like it. So

Bill Gasiamis (49:45)

Yeah. There’s nothing wrong with that. I wish stroke survivors will push themselves beyond their limits to test

Ramandeep (bobby) chaggar (49:51)

Bill Gasiamis (49:51)

Ramandeep (bobby) chaggar (50:00)

Bill Gasiamis (50:01)

If it’s hanging over, you know how sometimes people walk down the stairs and half their foot is hanging over the edge of the step, the step

Ramandeep (bobby) chaggar (50:20)

Bill Gasiamis (50:21)

healthy and you don’t fall down and injure yourself even more and make your recovery even harder or even worse. So I would encourage people to listen to their OTs, especially in the early days of their recovery, as they get better and things

Ramandeep (bobby) chaggar (50:53)

Bill Gasiamis (50:54)

Ramandeep (bobby) chaggar (51:09)

Bill Gasiamis (51:11)

Well, we’ll put an image of the book up for this segment where I’m chatting now just so people can get to see it. Tell me about the back cover, the back cover photo, getting back on the bike.

Ramandeep (bobby) chaggar (51:21)

Bill Gasiamis (51:43)

Ramandeep (bobby) chaggar (51:44)

And three of us, we sat there with our helmets on and I just sat on the motorcycle like this. I didn’t have a license at that time. I mean now I do, but that was just photo op. You know, we like audio visual, I told you. That’s what it was.

Bill Gasiamis (51:57)

Ramandeep (bobby) chaggar (52:00)

Yep. That’s the lock that’s a back image, yeah.

Bill Gasiamis (52:18)

Ramandeep (bobby) chaggar (52:37)

Bill Gasiamis (52:38)

the clutch to get my foot into the right position and move it up, especially up down, I could probably do but up. I would always, I’m always thinking that I’m gonna, I’m gonna miss the gear.

Ramandeep (bobby) chaggar (52:52)

It’s nothing that nothing that emotional, you know, actually. So I and I used to press the clutch. I used to try and press press the clutch. I remember that day the first time when I pressed the clutch. So I’ll give you a perspective. So the first day I had gone to the Pilates studio for my recovery and rehab and my exercises when I started. So there’s an assessment. So she’d made me do the grip test. I was pushing 75 kilos on my right hand, for example, which is solid.

She said she hasn’t seen seventy five kilos ever in her life. And with my right hand, it was only half a kilo. So imagine the difference.

So I could press the clutch only once the first day. And the second day, I mean and I I was also undergoing this clinical trial, which is called CIMT, constraint induced movement therapy. So what they do is they they they used to deliberately ask me to wear a mitten or a mat or something or hold something in my strong hand so that my weak hand is forced to do other stuff, which was very, very annoying, you know, deliberately doing stuff, deliberately doing stuff.

But this is what I’ve learned over time. That if something is not working, if you constantly work on it, it’ll it’ll eventually start working. You know, it’ll work more, a little more next time. I remember when I I used to clean I’m I’m a stickler and I’m crazy for cleaning. I think I’m OCD. I’m I’m literally undiagnosed, ADHD,

Bill Gasiamis (54:31)

Ramandeep (bobby) chaggar (54:32)

You know, towards the towards the wall, towards the splashboard. But now I can. Because you know, this is what I tried that. Okay, let me do it with this. It was very annoying because it was leave streaks and it was not perfect. And having those things which which won’t you know, which should be perfect. There should be no spot here. There should be no line here. It is crazy. So you work on it, you work on it, work on it, works. So now I can sit on my bike and it’s a trike, it’s a trike, you know, it’s with a sidecar. Yeah. So it’s with a

Bill Gasiamis (55:02)

Ramandeep (bobby) chaggar (55:04)

Bill Gasiamis (55:06)

Ramandeep (bobby) chaggar (55:07)

And now I can sit on a bike and I can ride it for about for example, we shifted. So I rode my bike. I didn’t put send it in a truck. I rode it.

go onto the highway.

Bill Gasiamis (55:41)

Ramandeep (bobby) chaggar (55:41)

Bill Gasiamis (55:44)

Ramandeep (bobby) chaggar (55:45)

Bill Gasiamis (55:48)

Ramandeep (bobby) chaggar (55:50)

Bill Gasiamis (55:53)

Where can people connect with you if they want to get a copy of the book? Where can they go?

Ramandeep (bobby) chaggar (55:58)

Bill Gasiamis (56:02)

Ramandeep (bobby) chaggar (56:03)

Bill Gasiamis (56:14)

Ramandeep (bobby) chaggar (56:14)

Because my friend, my friend had trouble. I had to send him a few books. But they can just order on Amazon, they can listen to it on Spotify, they can listen to it on Audible. It’s on all platforms.

Bill Gasiamis (56:33)

Ramandeep (bobby) chaggar (56:33)

This is one shot. So

Bill Gasiamis (56:53)

Ramandeep (bobby) chaggar (56:53)

Bill Gasiamis (56:59)

Ramandeep (bobby) chaggar (57:06)

Bill Gasiamis (57:09)

And it’ll point you to the right store for your country to purchase the book. If this episode meant something to you, share it with someone who needs to hear it. That’s genuinely the biggest thing you can do to help the podcast grow. My own book, The Unexpected Way That a Stroke Became, the best thing that happened, is available now at recoveryafterstroke.com/book And if you’re finding some of what Bobby talked about today,

The grief, the identity questions, working out who you are now, hard to navigate on your own. I offer one-on-one coaching built on my own lived experience of stroke recovery. It’s not therapy, it’s not medical treatment. But if you want someone in your corner who’s actually been through it, you can find out more at recoveryafterstroke/momentum Thanks again for listening. I’m Bill Gasiamis. This is the Recovery After Stroke.

Podcast.

The post Learning to Cry After Stroke – Bobby Chaggar appeared first on Recovery After Stroke.

Benjamin Miller was 16 years old and playing football in Texas when a carotid artery dissection changed the course of his life on September 22, 2017. He didn’t know what a stroke was. He didn’t know that the word would come to define the years that followed not because of what it took from his body, but because of what it took from his sense of who he was.

Teenage stroke recovery is not what most people picture. The standard narrative runs like this: young brain, high neuroplasticity, rapid recovery, inspirational outcome. And in some ways, that’s true. The motor and language systems that stroke damages can rebuild quickly in an adolescent brain. But there’s a part of recovery that neuroplasticity doesn’t touch, and that’s identity.

He was a football player. In Texas, that means something. It means a community, a future, a sense of place in the social architecture of a town. When the stroke took that away, it didn’t just end a sport. It ended a version of himself that he hadn’t finished becoming.

“My soul was torn in half,” Benjamin said in this conversation with Bill Gasiamis. It’s one of those phrases that stops you not because it’s dramatic, but because it’s accurate.

“My soul was torn in half.” — Benjamin Miller, EP422

The stroke forced him to grieve something most 16-year-olds don’t have language for: the future self they were building toward. When that future collapsed overnight, he was left with a present he didn’t recognise and a past that no longer pointed toward anything.

Teenage stroke recovery carries a layer of complexity that adult stroke recovery doesn’t always share. Adolescence is the developmental period in which identity is actively constructed; it’s not a fixed thing waiting to be restored. When stroke interrupts that process mid-construction, the survivor isn’t returning to who they were. They’re trying to become someone they haven’t yet figured out how to be.

Benjamin’s experience of turning to substance use during his recovery wasn’t a character failure. It was, as he articulates in this episode, an attempt to manage an identity fracture that nobody around him had the vocabulary to name. When the pain doesn’t have a name, people find their own ways to survive it.

This is one reason teenage stroke recovery deserves its own conversation separate from paediatric stroke outcome data, and separate from the adult recovery narrative. The emotional, psychological, and social dimensions are specific to this life stage.

You might also recognise elements of this in other episodes: the identity rupture that follows sudden stroke in a young person surfaces in Young Stroke Survivor Recovery and Identity Loss After Stroke. Benjamin’s story adds a dimension that’s less often named: what happens when the loss of identity happens before you’ve finished building one.

Here’s something worth naming a phenomenon the clinical literature notes but rarely centres in recovery conversations.

Adolescent neuroplasticity is real. Benjamin’s brain had the capacity to rebuild physical and linguistic function faster than an older adult’s would. But neuroplasticity is a structural property of the brain. It doesn’t extend to the psychological work of integrating a traumatic experience into a developing sense of self.

The result is a gap, sometimes a wide one, between the physical recovery that others can see and the internal recovery that isn’t visible at all. Benjamin appeared to be “doing well” in many respects while internally carrying a fracture that hadn’t been addressed.

This gap is one of the least-discussed aspects of teenage stroke recovery. If you’ve experienced it, or watched someone you love experience it, it may be the most important thing in this episode.

Benjamin’s memoir, Ed and I, available on YouTube, traces this journey. What comes through clearly in his conversation with Bill is that the path forward required him to walk through the things he’d been managing around the grief, the identity loss, the fracture itself.

Recovery, in his telling, doesn’t take you back to who you were. It takes you through who you are now.

That reframe from restoration to transformation is one that many stroke survivors eventually arrive at. Bill’s book The Unexpected Way That A Stroke Became The Best Thing That Happened documents ten tools for exactly that kind of recovery.

For more episodes touching on identity and recovery: Emotional Recovery After Stroke Mistakes, Identity After Stroke — Cassie Jewell, Stroke With No Warning Signs — Tom Ballo, Losing Confidence After Stroke, and Stroke Brain Healing Neuroplasticity.

This episode doesn’t pretend that recovery is a clean arc or that there’s a single turning point you can point to. What it offers instead is something more honest: the lived texture of finding yourself again when you’re not sure who you’re finding your way back to.

Listen to EP422 of the Recovery After Stroke podcast wherever you listen.

If a stroke or any trauma has made your world feel smaller, Bill’s new book Your World Doesn’t Have to Stay This Small is a practical guide to rebuilding your life, even when you’re not ready. Find it on Amazon at mybook.to/yourworld.

If this show has helped you, you can support it at patreon.com/recoveryafterstroke.

This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.

“My soul was torn in half.” Benjamin Miller had a stroke at 16 and lost more than football here’s how he found his way back.

Highlights:

00:00 Introduction – Teenage Stroke
09:01 The Day of the Stroke
11:56 The Loss of Identity
17:12 Coping Mechanisms: Alcohol and Escapism
22:37 COVID-19: A Blessing in Disguise
28:57 The Journey of Healing Begins
32:40 Facing Uncomfortable Emotions
38:45 Spiritual Awakening Through Adversity
42:34 The Power of Breath and Movement
47:35 Building Community in Recovery
55:39 Finding Belonging and Understanding
59:12 Creating a Path for Self-Healing

Transcript:

Benjamin Miller (00:00)
when I was told that by my father that. It felt like my soul was torn in half, because like I always saw myself as a student athlete and the bigger part of that was the athlete. And now I lost half of my identity and. I just didn’t know how to as a.

17 year old now like how to move forward with life and I didn’t know who I was and the only thing I defined myself as was taken away from me

So now I was just like in this weird place where I felt like I was drowning on a day-to-day basis.

Bill Gasiamis (00:33)
hello, everybody. Welcome back to Recovery After Stroke. I’m Bill Gasciamas. My guest today had a stroke at just 16 years old, a carotid artery dissection that ended his football career and cracked his sense of who he was, right at the age when most people are just beginning to figure that out. Before we get into it, if you’ve been finding value in this podcast, my new book is out now. It’s called Your World Doesn’t Have to Stay This Small.

A practical guide to rebuilding your life after trauma even when you’re not ready. You can find it on Amazon by searching my name or you can click the link in the show notes. Now it’s on to the episode.

Bill Gasiamis (01:14)
Benjamin Miller, welcome to the podcast.

Benjamin Miller (01:16)
Sir, thank you for having me.

Bill Gasiamis (01:19)
Tell me what’s regular life like for you before the stroke?

Benjamin Miller (01:26)
Yeah, I mean, when I had my stroke, I was 16 years old and I was in my third year of high school. So it was really comprised of just school, going to school every day and then playing sports after school. Like through the school, would play American football. I played baseball earlier in my life. And then towards the end of my high school, I just continued to play American football because I had the goal of following in my two older brother’s footsteps.

for playing football, American football, in college at that time. So I just saw myself as following their path and going to play college football. And that’s what I was chasing throughout high school.

Bill Gasiamis (02:09)
How long ago was that? The stroke?

Benjamin Miller (02:12)
It was 2017,

the fall of 2017. So

Bill Gasiamis (02:16)
Okay.

Benjamin Miller (02:16)
coming up on nine years on the 22nd of September.

Bill Gasiamis (02:23)
I I expect that stroke is the last thing going through the mind of a sixteen year old and the family of a sixteen year old. So

Benjamin Miller (02:34)
Yeah.

Bill Gasiamis (02:34)
w do you have any recollection of what it was like on the day of the stroke? Was there some kind of sign, was there anything that gave you an inkling of something being wrong before everything happened?

Benjamin Miller (02:53)
maybe like right before, because just playing American football, you’re always hear about head trauma and just CTE and concussions. And that’s always the biggest worry for playing football. But it was during the game that Friday night, it was the second game of our football season. And it was in between the first quarter and second quarter. And I came over to the bench and like in between going back on the field, our coach like brings the

offense or defensive units together and we like talk about any in-game adjustments and I came over and sat down on the bench and I just noticed my balance like start to tip like I was having to stare down at my feet in order to stop myself from falling over and Yeah, just from there like I like grew up in a

Society like especially in football. It’s I don’t know if I surround football is the same but just no pain no gain so

Bill Gasiamis (03:51)
Mm-hmm.

Benjamin Miller (03:51)
you’re always pushing yourself to your limits and That was like a saying that I grew up in if you’re hurt you can walk off the field if you’re injured you can so unfortunately, I played until I go back on the field and The first or second play of the next series I

help my teammates make a tackle. get back up to my feet and then I collapsed face first and at the ground. And from there, I, I’m able to like the trainers obviously come on the field and help me to the sideline and they’re running concussion tests, asked me, what’s your name? Where are you? What are you doing? And I’m answering every question. But even at that early stage, I mean, it was just like, that’s like when the initial carotid dissection happened.

It was probably in the guy, my teammate I was playing next to actually, he went on to study pre-med and he saw my aphasia on my face and he’s told our other teammates that Ben is having a stroke, but who’s going to listen to a 17 year old kid? And like we had a team doctor on the sideline, the trainers, no one really knew what was wrong with me. They just thought it was a severe concussion. So that’s what it was treated as.

So I spent probably 20 to 30 more minutes on the sideline. And before I was, yeah, it was just like a, just a failure on the part of the adults around me at that time. And yeah.

Bill Gasiamis (05:28)
Yeah, rough. The dissection that happened do you think it might have been from a collision during the game or what what’s the thinking behind the cause of the stroke?

Benjamin Miller (05:42)
Yeah, that’s something like a question that I’ve like both my parents and myself as I’ve always had, but it just never could be answered. Whether it was just from like one hit. saw a chiropractor for the first time at the beginning of that week, like the Monday before the injury. So maybe like a neck adjustment caused it or maybe like it could have been genetic.

So like that’s what my parents’ biggest concern was, was having my two older brothers still playing college football at that time. That if it’s genetic, is there a chance that it can happen to our two other sons? But they

Bill Gasiamis (06:19)
Yeah.

Benjamin Miller (06:20)
just…

Bill Gasiamis (06:21)
Sorry, Ben, I was gonna say yeah, it I know what you mean about genetic in that sometimes people’s carotid arteries for no reason do dissect. and sometimes I’ve heard the connection with chiropractic, there’s been a few well, it’s very well documented people going for adjustments. The thing about the adjustment is it’s never known whether or not

the person was feeling something in their neck because of a dissection. They went to the chiropractor, they had an adjustment, and then it caused the situation to get worse, or do you know what I mean? Like it may not have totally been linked, but I get that. I’ve met people who have had dissections who had no injury, had no adjustment,

They just had a dissection. So that’s a thing. when you went to the chiropractor for the neck adjustment the week before, was it because you had an issue that you needed to deal with? Was there some kind of pain that you were experiencing?

Benjamin Miller (07:29)
Yeah, I mean, I was actually dealing with lower back pain. So one of my teammates recommended me to a chiropractic, but he adjusted my whole back all the way up to my neck. So it wasn’t like, I wasn’t going there for a neck adjustment, but he just happened to do one while I was in there.

Bill Gasiamis (07:47)
Yeah, which is pretty standard procedure for a chiropractor. If you go there, you get your neck adjusted. Okay. so then you’re sitting on the sideline for another twenty or thirty minutes, and then what happens? How do they finally decide something’s not right?

Benjamin Miller (08:06)
Yeah, so just after that time period, the team doctor called my parents down to like in Texas, like we play in like massive stadiums even as kids. So he called my parents down to like the railing of the stands to the field and told my parents to bring our family car so they could take me to a local clinic. And as I’m walking out of the stadium, I

Like there’s like a incline up to get out of the stadium because it’s kind of like a bowl shaped and I can’t walk up like a 15 degree incline. Like I started like tipping over to my right side. So then they have to bring a athletic cart. They sit me in the cart and there’s like a trainer sitting behind me, holding me upright so I don’t slump out the side of the cart. And it was probably like a 15 meter ride to my parents’ car. And my parents saw me from there and drove me straight to the emergency room at a bigger hospital.

And from there I was, I would say in the emergency room prior for like two, three hours and they were running CT scans of my like base of my skull up. So they didn’t see the actual carotid.

Bill Gasiamis (09:16)
What

Benjamin Miller (09:17)
Yeah. So it was like with everything, how everything happened, like I’m so lucky to be here and be able to move and be able to speak and. But yeah. So then probably I probably got hurt around.

8 p.m. and it was around 12 a.m. where they finally called downtown to the bigger hospital in Houston, downtown Houston and a neurosurgeon on call that night said he’s having a he had a carotid artery dissection so then they life flighted me down and on the life flight down to Houston to downtown that’s when I lost consciousness in the helicopter so

Bill Gasiamis (09:54)
Mm.

And then at some point you wake up in hospital,

Benjamin Miller (10:00)
Yeah, I

woke up in the ICU probably, this happened Friday night, I would say maybe Monday morning. So I was unconscious for a couple days.

Bill Gasiamis (10:11)
Mm-hmm. And then after that, what are you dealing with? You wake up, you’re told you’ve had a dissection, a stroke, and then what are you dealing with physically? What’s not happening for your body?

Benjamin Miller (10:28)
lost all use of the right side of my body. So it was just immediately starting rehab, rehab. And

Bill Gasiamis (10:36)
Mm-hmm.

Benjamin Miller (10:37)
yeah, I mean, I was just going from like being on the verge of being a higher level athlete to my right side, going back to like, I was always describing it as like a newborn.

Bill Gasiamis (10:49)
Mm-hmm.

Benjamin Miller (10:49)
I didn’t know how as a 16 year old to really handle that. I mean, it took like

In the beginning, it was easy because I was so focused. Like I believed I was going to play American football again. So I was just like so committed to the rehab and doing therapy multiple times a day and just really just with that goal of getting back on the field. So the really the early days are really driven by that want to get back on the football field.

Bill Gasiamis (11:20)
Was there a moment you had the realisation that it’s not going to happen and what was that like?

Benjamin Miller (11:27)
Yeah, probably in June of 2018, I had a follow up with my neurosurgeon and before we went in to go see him, because I was supposed to, I got hurt September of 2017. So about nine months later and my parents sat me down and told me, Ben, when we go see your neurosurgeon tomorrow, he’s going to tell you after retire. And that was, yeah, that was like a very, I didn’t know how to deal with that as a 17 year old.

Like very soon after that I fell into alcohol use and then, yeah, just progressed from there.

Bill Gasiamis (12:04)
Got it. And by nine months later, were you up on your feet? Had you recovered the deficits or were they still there?

Benjamin Miller (12:15)
Yeah, I mean, I was lucky that I was 16. So my brain was still very plastic and I recovered like really I was in a wheelchair for the first day. Like September 23rd, I was in a wheelchair. I mean, like probably like just one day after. And then I was up and walking on day two and just like my strike pattern of the ground wasn’t correct. Like I would swing my leg and have drop foot as many stroke people patients suffer with.

but I wasn’t gonna let the stroke, like the people around me seeing me as still struggling from the stroke. So even like the early days in the hospital, I just hide it from everyone. Anytime my parents or my friends or anybody, my brothers would ask, how am I doing? I just tell them, I’m okay, I’m fine. You don’t need to worry about me. Which then led to me needing to find a release in alcohol later on the line, so.

Bill Gasiamis (13:10)
The whole I’m fine, you don’t need to worry about me was so that you can convince yourself perhaps and them that you’re good to go, you’re ready to just slide back into life exactly the way that you were.

Benjamin Miller (13:24)
That’s definitely it.

Bill Gasiamis (13:27)
Yeah. But you clearly weren’t okay if you’re we’ll talk about the alcohol in a moment, but you’re clearly not okay. What are you experiencing psychologically or emotionally that you’re hiding from them? Like what’s actually happening in that moment?

Benjamin Miller (13:44)
Yeah, Maybe just. It was more so from the retirement from football. It felt like when I was told that by my father that. It felt like my soul was torn in half, because like I always saw myself as a student athlete and the bigger part of that was the athlete. And now I lost half of my identity and. I just didn’t know how to as a.

17 year old now like how to move forward with life and I didn’t know who I was and the only thing I defined myself as was taken away from me and along

Bill Gasiamis (14:21)
Mm.

Benjamin Miller (14:22)
with like missing a whole semester of school. It was just like I just stopped caring about school too. So now I was just like in this weird place where I felt like I was drowning on a day-to-day basis.

Bill Gasiamis (14:36)
Setback after setback. It’s not that you become unwell and then you wake up in the morning and you just can’t play football. It’s also you’ve missed school, so you’re gonna go back and probably repeat that. Your friends have moved on. They’re doing what you know, seventeen year olds do, playing football, going out, doing their studies, who knows what they’re doing. You’re

You have to pick up the pieces and there’s a lot of pieces to pick up, right? There’s so much. The alcohol did it was it something that you did before this incident in in that had you as a sixteen year old had alcohol before? I know most kids would have at some point in America, in Australia, by the time they’re sixteen, they’ve had a drink. Had you had a drink before that?

Benjamin Miller (15:29)
I didn’t actually just with the role models that my brothers were, were very straight edge guys, like just focused on the goal of

Bill Gasiamis (15:38)
Mm-hmm.

Benjamin Miller (15:39)
college football. And so like I was very much the same way, but after just the injury, being around my friends and not having like those same like level of role models in the same house that I fell into the, just down the wrong path. I won’t.

say it’s my friend’s fault because it was…

Bill Gasiamis (15:59)
Yeah.

Benjamin Miller (16:00)
yeah, but it was…

Bill Gasiamis (16:03)
Sounds like it’s still tough talking about it.

Benjamin Miller (16:07)
Yeah, at times. Like sometimes it’s easier, sometimes…

Bill Gasiamis (16:12)
Hmm.

With the I’m not sure. I’ve never I’ve drank and I’ve drank a lot to be drunk and I’ve drank too much where I’m completely gone and I don’t drink since the stroke. What’s the what’s it helping you do when you have a drink? Is it helping you forget? Is it helping the emotional part of it? What is it kind of putting a cloud over or

And kind of stopping from coming forward.

Benjamin Miller (16:46)
Yeah, it was just, I mean, I would drink to escape, to be honest. It was just like my way to stop feeling the stress of how much I have to recover, the stress of how do I get back? How do I show people that I’m fine, that the stroke didn’t affect me? And it was just like a couple hours out of the night where I could just not feel any of the stress of me trying to hide the…

Just the emotional pain of not knowing who I was and not knowing how to move forward with my life without football, without sports, without like the level of a student I used to be because I was just very, I was a perfectionist growing up and had to make the best grades in class, had to be the best on the football field, had to be just the strongest in the weight room. So I just didn’t know how to move forward without.

trying to show everyone I’m still this perfect version of myself and just as Ben, the not perfect kid, the one who’s still fighting from what

Bill Gasiamis (17:51)
Mm.

Benjamin Miller (17:51)
he’s been through, but he’s not perfect anymore, even though.

Bill Gasiamis (17:55)
You never were perfect, but you at least were more capable of pulling off the facade, you know, because you did have good grades, because you were an athlete, because you always worked on improving things. So the th the the time that you were drinking gave you a little bit of relief from all the things that were kind of happening.

in your head that you needed to kind of quieten down. And then did that escalate? Did it go from a small amount to a larger amount and then and then kind of how bad did it get?

Benjamin Miller (18:38)
Yeah, I mean, over my senior year of high school, it did escalate to abuse. I go solely on the weekends, like Friday night, Saturday night. But then beginning university and the fall of 2019, it was five, six nights a week. I would be drinking till I would be most nights just blocking out. So I didn’t remember what happened the night before. And then even waking up in the morning, it was.

That’s the only thing I could think about was just making it back, getting through class, making it back to the nights where I could drink till I wouldn’t feel anything. And that continued through the end of 2019 and into the beginning of 2020, I joined a fraternity. And that’s when I noticed myself like really start to spiral, started to get into, like tried cocaine a couple of times, like was still drinking every night. And like that’s why COVID was like a lifesaver for me.

that I could go home and, you know, because like I was on a very bad path at school.

Bill Gasiamis (19:45)
So you’re already heavy drinker, then you join a fraternity.

Benjamin Miller (19:50)
you

Bill Gasiamis (19:51)
You’re the perfect candidate for being in an in a fraternity, right? And you

Benjamin Miller (19:55)
Yeah, it was a mess.

Bill Gasiamis (19:57)
can yeah, you can see why that would escalate it because already the culture is about drinking, about partying, about being loose or crazy or whatever. And it makes sense that it would escalate and get

really bad and get worse and then you try other things. And then COVID happens.

And then that gives it the opportunity to have a bit of a break in the cycle.

Benjamin Miller (20:27)
Mm-hmm.

Bill Gasiamis (20:28)
Your studies up until COVID, even though you were drinking heavily and probably parting too hard, were the studies being affected or were you still able to put out good work?

Benjamin Miller (20:42)
I won’t say good work, but just grades that were good enough. Like not failing classes, but not excelling. just like

Bill Gasiamis (20:49)
Mm-hmm.

Benjamin Miller (20:50)
B’s and C’s, maybe one or two A’s. just like for like the stand, like my perfection standards that I used to have, like just like kind of skating by.

Bill Gasiamis (21:02)
I l I love the sound B’s and C’s skating by. Dude, if I was getting B’s and C’s when I was at school, my God, that would be amazing. but I it gives me a good insight into like what the expectation of yourself is. I totally get it. Okay. So you’re skating by, you’re getting your grades. Does anyone n realize how bad things are? Like people in your periphery, your family going

Ben, we’re concerned about you. We think we need to talk. Was it any of that stuff or were you hiding it?

Benjamin Miller (21:36)
I was very good at hiding it from everybody. really like, I didn’t let anybody at that point, like that early on in the journey, like anybody see what was going on underneath. Cause I didn’t understand it I didn’t have the ability to verbalize what I was going through emotionally, what I was going through mentally. So it’s like at that point I was even hidden from myself. I’d go that far.

Bill Gasiamis (22:02)
Wow. You had to saved yourself in thinking that everything is normal, perhaps.

Benjamin Miller (22:07)
Yeah, I just thought like the more time that goes by like Everything will be okay without me having to do anything especially like at that time

Bill Gasiamis (22:17)
Mm-hmm. And then COVID happens. Why is that a blessing in disguise? How did it change things for you? And then we’ll talk about what what you have to deal with after that. But at the ma in that moment COVID comes along and it changes something for the better.

Benjamin Miller (22:37)
Yeah, in March of 2020, I go back to Houston from I was at school in Chicago, Illinois. And from there, it’s just like just being at home with my both my brothers are back at home and in our old house. It was just nice the first time since like 2016 since my oldest brother left for school. That we’re all together again, and I could just

get out of that environment that I knew I was spiraling and I still wasn’t in a better place at home. I’ll still.

struggling with like I started using performance-answersing drugs at the beginning of that year too. Just to, I thought that if I big, like built my muscle and strong, like really strong, that my effects from the stroke would also heal. So I just spent like two, an hour to two hours every day in the gym just, yeah, just like over that period of time from March of 2022, December of 2020.

just going to the gym every day and just trying to put on as much muscle as possible because I thought that would help me heal. And yeah, it didn’t.

Bill Gasiamis (23:52)
It didn’t Did you get bigger?

Benjamin Miller (23:56)
Yeah, I mean, I was I don’t know. And I would say I got up to like 100 kilos, like 220

Bill Gasiamis (24:02)
Okay.

Benjamin Miller (24:02)
pounds.

Bill Gasiamis (24:04)
Yeah. So you got bigger you achieved that thing, so visually it may have looked like you were achieving something, but you didn’t feel better.

So

Benjamin Miller (24:15)
So.

Bill Gasiamis (24:16)
what what did it feel like still? What does it feel like in your body when you’re gone back home, everyone’s together, you’re hitting the gym, you’re using performance enhancing drugs. What does that feel like? Does it feel like a letdown, a disappointment, or I’m not quite there yet? What what does it feel like?

Benjamin Miller (24:37)
I would say like, I’m not quite there yet. Like just always chasing a ever moving goal that like, as soon as it got closer, just like move further away. But I never like step back to like actually look at what I was chasing and realize that’s not what I’m supposed to be chasing. I need to be just turning around to my internal world and focus on healing myself from the inside out versus trying to do all this, put on another mask.

do another substance, put another thing in my body, chase another goal, external goal, to try to heal versus turning around and looking inside. So that took many years.

Bill Gasiamis (25:19)
Hmm. I love that flip that you said healing from the inside out instead of putting on another mask. And that’s really profound to get to that stage where you when you realize that. and at the same time when you were hitting the gym, getting bigger, your right side, is that feeling different? Do you have deficits on that side still?

Benjamin Miller (25:47)
Yeah, I would say at that time, yes, I was still very tight through my whole right arm and right leg. Still, like anytime I went up a stair, I got hit my right foot on the top of the step. So it was like, and I just thought the more like just being a no pain, no gain mindset stuff, I’m in pain

Bill Gasiamis (26:08)
Mm-hmm.

Benjamin Miller (26:08)
and I’m going to be recovering. I’m going to be gaining. And yeah, it just was.

And like the more muscle I put on the tighter it became because just the range of motion wasn’t right through my shoulder and through my hip. I was still swinging my leg, still shoulder hiked forward versus like pulling it back and letting gravity work, like working with gravity instead of fighting it. So that was.

Bill Gasiamis (26:33)
Yeah.

Yeah. I know what you mean because when I’ve been to the gym after the stroke, it’s I I tend to kinda achieve one thing and then the muscles get so tight that I’ve got to go and have a massage and try and loosen them up and try and get them moving again. And then it’s like that one two day recovery after you do your arms, for example, and your chest takes four or five days and it’s like back at the gym already.

And I still haven’t overcome or recovered from four days ago. And it’s really challenging and frustrating. It kind of makes it kind of makes it harder to go back to the gym. You’re all I’m always thinking about, I’m gonna go there and it’s I’m gonna just tighten everything up and I’m gonna put myself in that situation and it’s not gonna recover. And I’m gonna have to get massage again. And it’s just this whole loop of.

It’s very it’s very helpful, but it’s also something that has to be managed completely differently than it used to when you go to the gym and you recovered for two days and then you’re back again. and before we move on to the kind of the next phase of the conversation, I also wanna kinda understand this perfectionism in you on the field, off the field field, at school. Where did that come from? What

Do you have like a sense of how that started and why it was a thing that you adopted and ran with?

Benjamin Miller (28:12)
I would say that just watching my two older brothers grow up and seeing like in my like kid eyes, they were like the perfect human being, like the perfect role models. Like I just tried to be like them in every way. And I always thought that they were like so up here and like, didn’t know like, I was three years and two years younger than them. So they hit puberty before me. just at the time that my oldest brother, Alex left for school, I would still be like,

at his like chest level, always like looking up to them. So they were just like gods in my head. And I always would ask myself, how do I measure up to them? And because they were perfect in my eyes. So was like, I to be above perfect

to

Bill Gasiamis (28:57)
Mm-hmm.

Benjamin Miller (28:57)
be recognized as like their brothers. I got, it’s like always the bar I was chasing and yeah.

Bill Gasiamis (29:08)
And now you know they weren’t perfect, they were just bigger and older than you by three years and two years. Yeah. so then you have this realization that the healing has to start from the inside, but that’s gotta

Benjamin Miller (29:26)
Mm-hmm.

Bill Gasiamis (29:26)
be is that a relief that you work that out? Is that what what am I gonna do now? How how do you gr grapple with that?

Benjamin Miller (29:37)
Yeah, I’d say like, I had the, I know if I hit rock bottom, but I had to go even lower before I came to that realization. So I mean, yeah, like 2021 was probably the one of the lower lowest points. So it’s a, so like going back to school in January of 2021, I got into stimulant use at the same time as the performance enhancing drugs at the same time as alcohol and then marijuana came into the picture too. So I was just using like

a cocktail of drugs just to get through a day. And I ended up that winter quarter, I did make the Dean’s List at school. was like the top performer, but I remember just like looking at that email and like, I have like all the external achievement again. And I was even more, like I was lower. I got a lower place emotionally and mentally and like felt so empty inside that I knew that this isn’t

what I’m supposed to be doing at this point in time. So I went on medical leave from school like pretty soon after that. And that’s where I would say where the healing process really began was in the summer of 2021. And yeah, I mean, it’s been, I thought it’d take like in the beginning, the healing process would be like six months, but it’s been around five years that it’s taken me to be honest. So four years of just.

sliding down and I would say like I might have like and like the healing process too has been like trying to make it up and then still falling and going back up. So it’s never a straight line for

Bill Gasiamis (31:19)
Never linear.

Benjamin Miller (31:20)
me a long time to recognize that let’s focus on the trend.

Bill Gasiamis (31:25)
Never linear man, far out. you you still make it on the Dean’s list, that’s cool. But I I get like it even under duress, you know, you still make it on the Dean’s list. And then you have this realization and it’s like you hear that analogy, you know, things are gotta get worse before they get better.

Benjamin Miller (31:48)
Yeah.

Bill Gasiamis (31:50)
Dude, like how much worse can they get? Why should they get worse? Why can’t we just start improving from here? But is it’s for you the worst part? Was it about reconstructing from the beginning and then you therefore you have to get to the bottom because you can’t kind of reconstruct from b you know, above the bottom?

Benjamin Miller (32:13)
Hmm. Yeah, I mean, I would say in a way like I would say like the first over that summer of 2021, I just focused on like I was doing a lot like yoga almost every day, and that was the first time I started meditating in my life and working on like that’s really where my rehab started was just a lot of breath work, a lot of meditation, a lot of yoga, just to.

begin to be able to sit with the emotions and the mental states that I couldn’t tolerate. And like at that early point in time, I still couldn’t tolerate it. still like so uncomfortable that I still had to go use marijuana just to get through the days. But it was just the beginning of that process of being able to tolerate what I had been running from through alcohol, through stimulants, through performance enhancing drugs for so long that like I was still inputting a substance into my body, but

I could begin that process of sitting with it, even if it was for a minute. And those early days, two minutes, three minutes became 10, 15, 20, which then continued to expand longer. And the more just times I came back to sitting with those uncomfortable states.

Bill Gasiamis (33:26)
Yeah, wha what is it about being uncomfortable that people can’t handle? Do you think maybe you can tell me from your perspective? because you hear that, it’s almost ridiculous to hear somebody saying, I have a thought, it’s making me uncomfortable, I have to get that thought out. Yeah, I’ve b I’ve been there, so I’m not saying that

Benjamin Miller (33:47)
Thank you.

Bill Gasiamis (33:49)
people shouldn’t be doing that, but it almost does feel crazy, doesn’t it? Because it’s a feeling and a thought

that makes you uncomfortable doesn’t necessarily put you in danger. But

Benjamin Miller (34:01)
Mm-hmm.

Bill Gasiamis (34:02)
we can’t do that. Like, do you have a any inkling as to why why philosophically that might be the case?

Benjamin Miller (34:13)
I mean, would just like our autonomic nervous system, a danger, like a physical danger versus a mental danger. can’t, our physical body can’t tell a difference. So they’re treated the same. And I would say like this.

Yeah, so like just like uncomfortable, like state of mind or uncomfortable thought. just as humans, we prefer to be in a place of comfort, a place of safety. And so anytime something is uncomfortable, we tend to run in the opposite direction back towards what is known, what is comfortable, what is safe. And it’s like, that’s something I always like ask myself, like, how do I make my, what can I do today? That’s uncomfortable, but not

like to the point that I lose myself and I just go off the deep end and where I’ve been. So just like a weird and like, feel like that place changes every day. It’s just like a balance that’s always, yeah.

Bill Gasiamis (35:16)
I get what you’re saying. So a a thing that is scary and dangerous, a physical thing, a bear, a tiger, you run. You can run away from that. If you’re lucky, you’ll outrun it, right? And then

Benjamin Miller (35:30)
Thank

Bill Gasiamis (35:30)
you’re safe. And then there’s no bear around and there’s no tiger around. So you’re good. You’re good to go. You can just move on with life. But when the body is confusing thoughts and feelings with the same type of

Imminent danger, and you can’t run away from it, and it’s still there. You have to find a way to either escape it, which is short-lived because we’re harming ourselves to escape it, or you have to remind your body and yourself, your mind, that in fact you’re not in imminent danger. There’s nothing to run away from. This is

An obstacle that I can tackle and overcome. Like it might just be on the path to, you know, that walk in the wilderness instead of a bear, it’s actually just a fallen log. A tree fowl, it’s an obstacle. I’ve just got to find a way around it, under it, over it, whatever. And if you’ve never used that muscle, then you don’t know how to do it.

And then you get stuck behind something like a log that

should not be as debilitating as it is. It should be something that you can find a way over. At 16, that’s understandable that, you know, most people haven’t dealt with real exponential life problems, you know, that just keep getting worse and worse. That changes your identity. They haven’t dealt with that. So they haven’t developed the skill. So could it just have been a case of you were a little premature?

just from age an age perspective that y all you needed to worry about was playing football and and and studying and now you’ve got to deal with these existential issues, you know, that most people aren’t equipped to deal with at sixteen.

Benjamin Miller (37:38)
Yeah, mean, yeah, that’s like one thing in March of 2018. So about six months after my stroke, my mom took me to a neurosurgeon and he said, the good thing is that Ben is young and the bad thing is that Ben is young. And both of us didn’t really understand what he meant at that point in time, but just like the spiritual and existential journey that the stroke has taken me on.

It’s that’s like been like both like the scariest and most comforting piece of the journey. Just because like I was never a spiritual person and not like in terms of religion, but just like believing in something higher, something bigger than me, some energy source that’s larger than us as human beings. And that’s been like the most like the biggest part of the journey, like the emotional side, the mental side, the physical side, we’re all.

And like, I’m still on those journeys, but just like the spiritual side of it has been, yeah, just something I wasn’t expecting.

Bill Gasiamis (38:45)
Yeah. It is kinda good that you discovered it early, but the path to discovering it is, man, so hard to have to go through what you went through to to have these learnings and understandings. and then to learn that if you tackle the thing that you’re most afraid of, you can actually conquer it. You can overcome it.

Benjamin Miller (39:10)
Mm-mm.

Bill Gasiamis (39:11)
And

If you get good at doing that, you can overcome most things. And you can also recognise when it’s time to live in the pain and discomfort, the suffering, whatever it is, to live in it temporarily and then

Benjamin Miller (39:27)
Thank

Bill Gasiamis (39:29)
r find a way through. What other than yoga and meditation, what else was it that helped you go on this other journey, this recovery or

growth journey.

Benjamin Miller (39:45)
I would say there were a couple things. I don’t know if you ever heard about internal family systems. It’s

Bill Gasiamis (39:50)
No, tell

Benjamin Miller (39:54)
a theory from Dr. Richard Schwartz. He wrote the book, No Bad Parts. And that was in 2022 after going on another medical leave from school when I first discovered that book. And it was just talking about the different parts of the mind, like, and how different we get stuck through our history at different points in our life.

And we have to like there are parts of our brain like different voices like speaking to each other and they are some are trying to protect us some are trying to move us forward some are trying to keep us where we are and it just like developing a conversation between those parts because there was a lot of traumas I suffered from the stroke and being in the hospital and then just like post stroke to just like trying to hide my spasticity.

from everyone, not showing my parents, not showing my friends, not showing anybody I was struggling at all. And just starting to understand the different voices in my head and even the young perfectionist Ben could always be trying to push me to be beyond perfect and just beginning to have a conversation between those different voices in my head and allowing them to speak instead of just repressing emotions, repressing, repressing until they’re like.

bubble up and I need to go get drunk or high or need to use something just to survive during the day. And the biggest other big piece for me was I started to practice Tai Chi in 2022 and that was as big of it physically was for me. It was just as big spiritually. Just that’s what I, when I first learned just like the…

how to start being like water and going with what is today and not trying to force. Yeah, just like force myself to be able to do every single Tai Chi movement and, but yeah, and that’s like still a thing I struggle with is like this past month, I pushed myself too hard in the gym and now have tendonitis in my right ankle. So I haven’t been able to train for the past two weeks and it’s frustrating, but it’s just like, I can look at it as a frustration or just something to learn from.

And I can recognize I wasn’t being like water over the past month. Instead of resting immediately, I just let the injury build and build and build day by day until now I can’t train. So yeah, but the Tai Chi, like the breathing, the Tai Chi breathing technique. So that was like another thing. It’s like yogic breathing. You inhale and expand your belly. Then when you exhale, you contract. But in Tai Chi, it was as you inhale, you contract.

And as you exhale, expand. So that was like something I was never aware of. So like whenever I’m meditating now or just like trying to relax, I’ll do a yogic breathing. And whenever I’m like doing something active, working out on a walk or just like moving around, like I’ll be like Tai Chi breathing. So that’s something I got to work with stroke patients in 2023 than last year and earlier this year. And I got something like I always stress with them was

learning how to breathe because like I feel like as we never actually learn how to breathe it’s just like something we do unconsciously from the time we’re born and just like going back to that most basic step of being a living being of learning how to breathe I was like

Bill Gasiamis (43:24)
I

it sounds like it was real insightful. A lot of people breathe incorrectly as well, and they haven’t realized that shallow breathing, you know, or the opposite of shallow breathing and therefore it puts them into a different physiological state. You know, shallow breathing can create anxious experiences and then and then the opposite can

create hyperventilation, those types of experiences. So it’s like you can alter how you feel, even if your goal is to not worry about the thinking, or even if your goal is not about what you’ve been suppressing, even if you just get rid of all of the things that we could possibly help us resolve or overcome or grow from or be like water, even if we get rid of all of that and you just change your breath.

And jumped on a YouTube video and found somebody that was doing a calm meditation for whatever purpose. And even if you just did that and you had no other agenda other than to just experience a different breath right, you

Benjamin Miller (44:39)
Thank you.

Bill Gasiamis (44:40)
some people will have a profound experience from doing that, wouldn’t they?

Benjamin Miller (44:45)
Yeah, I 100 % agree. I just, I know to this like, yeah, I say that’s just like where it started was just like the recovery journey for me started with my breath work and relearning how to breathe and just like learning a bunch of different techniques of breathing and just like seeing what worked best at what times and it’s just like a trial and error type.

Just as like life after a stroke is, feels like you’re just trying things out and see what sticks, see what doesn’t. And tomorrow’s a new day. We’ll see if this still works today. And then if it doesn’t, we’ll find something else that just.

Bill Gasiamis (45:24)
Yeah. Curiosity seems to be a massive

Benjamin Miller (45:28)
Mm.

Bill Gasiamis (45:29)
thing for you right now. Is we’ll try this, see what happens, try this, see what happens, see what sticks. If it doesn’t stick, well then we’ll just move on. Tai Chi, how did you stumble across that? Like what made you start trying it?

Benjamin Miller (45:44)
I was seeing an acupuncturist in Houston actually when I came home on a medical leave and he recommended me to his Sifu or teacher and his teacher had from chemotherapy because he had cancer but he would get like the toast plasticity and he like so I knew he understood like the first time I walked in to meet him we were at a coffee shop and he told me you look calm cool and collected but I can tell you’re a raging fire on the inside.

I’m like, okay, he just walked past every mask, everything I tried to show to the public and he could see what, how I actually feel. So it was just like that instant connection. And from there he started to train me. Like I could go to his house and we train in a private session twice a week for like a year really.

Like I still practice every day by myself, but he just was the first person that I didn’t have to wear like this fake face to. And I could like go in and like, it was like more like talk therapy. Like we’d be doing Tai Chi, but I could just like tell him I was really feeling that I was still struggling with marijuana at that time. This was around 2023. And that was like the biggest thing like in my substance recovery journey was what he told me. He’s like, I don’t care what you do outside of.

this training, but the fact that you’re showing up here today shows me that you’re trying to move in the right direction. And I know that the fact that you’re still showing up, that you will be eventually moving in the right direction. Don’t worry about where you are today. Just focus on where you’re going and the trend of months, years, and especially in substance use. you get, I mean, in stroke too, you get so caught up in the day today.

Bill Gasiamis (47:35)
Yeah.

Benjamin Miller (47:35)
How am I gonna survive today? And just to start looking more long-term was a very, it’s a very hard.

Yeah, it’s so hard.

Bill Gasiamis (47:46)
I love

I love the acknowledgement of right now you’re in Tai Chi. Everything’s fine. You’re doing great. It shows me that you’re moving forward. And people forget to do that to themselves as well. Like how far have I come? Six months ago, I wasn’t walk walking. Six months ago, I couldn’t speak the way I’m speaking now. Even if it’s not perfect, it has changed. There’s signs of improvement.

And all that kind of thing. It’s kind of the same conversation that you had with your trainer who was just saying, Yeah, we’re here, we’re doing it. And that’s another rep that is going to benefit you down the track. If it doesn’t feel like it’s benefiting you now, that doesn’t matter. It matters that you’re here and that you’re putting the work in and you’re turning up and the whole lot matters.

one of the interesting funny things that came up in my head about Tai Chi, it’s a martial art, right? And

Benjamin Miller (48:50)
Mm-hmm.

Bill Gasiamis (48:52)
and there was a meme on one of the socials where somebody was walking down the street and they were mugged and during the mugging they broke out into Tai Chi you know, to defend themselves or to stop the person stealing their bag. It was the

epitome of you know like it’s probably not useful to stop the guy but calming

Benjamin Miller (49:19)
Yeah.

Bill Gasiamis (49:21)
and getting yourself grounded and being okay about it was just a real cool thing to sort of to sort of see in that in that moment in that in that time it is a it’s a it’s a it’s a martial art but for a different purpose. It’s not

for defending yourself or taking somebody down. It’s the exact opposite of what you were doing on the field as well.

Benjamin Miller (49:53)
just felt like refinding yourself in like the chaos of everyday life. That’s like how I describe it. Like it just allows you to come back to like your center line and just, just be. like, it’s like thinking of the Tai Chi versus a robber. Like that’s why I continued like from Tai Chi. started to go, I lived in Thailand in 2024 for a couple of months and train Muay Thai.

as like the next stage to go from like super slow to start speeding everything up. And I was lucky enough to go live in up in Northern Thailand and Chiang Mai and train Muay Thai for a couple of months and have been back. And yeah, I’m actually going, my mom and I are to Bhutan where my mom is from at the end of October. And then I’ll go spend a little bit of time in Thailand before I come back home. So.

Yeah, life is…

Bill Gasiamis (50:51)
I

I I think about people going in practicing getting in the ring, MMA, Muay Thai, all that kind of stuff. It’s like, dude, how can you do it? How can you get in the ring and know that you’re going to get hurt?

Benjamin Miller (51:09)
I don’t,

I won’t fight. just like, sparring is like very like just tap sparring. So it gets like all timing and rhythm, but

Bill Gasiamis (51:17)
Yeah.

Benjamin Miller (51:17)
like I had to retire from contact sports. So it’s just like more of like a therapeutic, like

Bill Gasiamis (51:22)
Okay.

Benjamin Miller (51:23)
beating my body up and learning how to throw kicks with both my right leg and left leg, throwing

Bill Gasiamis (51:27)
Okay.

Benjamin Miller (51:28)
punches. So yeah, I’m not going to go fight.

Bill Gasiamis (51:31)
I

okay, good. That’s fine. I mean, even if you did, that’s fine as well. But that’s immediately when I what I went to when you said Moi Toy, like I’ve seen those dudes, they’re mental and amazing athletes, but they hurt themselves. And I saw how can you put yourself in that kind of danger? Even though that’s what you’re training to do. It my mind doesn’t go there, you know, it can’t physically make me do that. Of course I’ve defended myself in fights before if I’ve needed to.

not as a fifty year old, but I probably still could, but getting in the ring is a completely different thing. So you’re not getting in the ring. That’s cool. so you worked with stroke survivors. How did that come about? Why did that come about?

Benjamin Miller (52:19)
Yeah.

I was, like a guinea pig, like early patient at a stroke clinic in the Netherlands. And I, my, one of my mentors who’s co-owner of this clinic, Linda Radezdad, she wrote two books now, Stroke Rebell,

Bill Gasiamis (52:37)
Yeah.

Benjamin Miller (52:38)
Stroke Rebell 2, and just had the ability to go there and attend the clinic. And while I was there, I mean, they treated me like family.

It was the first time, this was in 2022, so about four and a half years since my stroke, the first time I ran in four and a half years. And they just wanted me to come back and volunteer at their clinic. Cause I opened another one in Cyprus and that they just did last year one in South Carolina in the U S and then earlier this year in Florida.

So I got to go out to Cyprus in 2023, then South Carolina last year, then Florida at the beginning of this year. And they just, mean, they just always treated me like family. And I’ve been so grateful for her and her partner, our young Kipers. Both of them have treated me like their own son, invited me into their house. I stayed with them after Cyprus, going back where they live in Germany and got to go to the clinic with them every day for two weeks while I stayed with them.

And yeah, I I don’t know what I’d

Bill Gasiamis (53:45)
Yeah. How amazing.

Benjamin Miller (53:47)
do, but.

Bill Gasiamis (53:48)
I’ve heard of Linda and her partner. I’ve heard of them for many years and I don’t really understand what they do. Linda had a stroke, is that right?

Benjamin Miller (53:58)
She had two strokes in 2017 and at the beginning of 2018 I want to Drunk.

Bill Gasiamis (54:03)
Uhhuh. Okay.

And now they run is it retreats? Are these clinics full time? and d do they see only stroke survivors or do they see all sorts of people?

Benjamin Miller (54:16)
I know Arjan when he ran his chiropractic clinic in Zutphen, the Netherlands, it was like he would see people with TBIs and strokes and just anything brain related. But now I think they’re focused on strokes and they host like two week retreats multiple times a year. I don’t know their website, but

Yeah, they do them in Cyprus and Sweden in the summer. And then now they’re starting in the U S so it’s. Yeah, I don’t know what their end goal is, like how like what’s next for them, but I know they’re retreat. Like at least when I went in 2022, it was like. The amount of attention I got for. 14 days straight was nothing I’d ever experienced in any hospital or any.

outpatient or inpatient rehab. It was something that I’ll forever be grateful for them for. But Arjan

Bill Gasiamis (55:16)
What’s the

Benjamin Miller (55:18)
just wrote his book. I couldn’t tell you the name of it, but Arjan Kuyper’s. Yeah.

Bill Gasiamis (55:25)
Yeah, we’ll look it up.

what did you gain from it, that first r retreat that you attended after fourteen days? W when you left, what did you feel like you left with?

Benjamin Miller (55:39)
I’d say the biggest thing was just like the mental and emotional piece that I didn’t feel alone for the first time in five years. I felt like I could walk into that clinic and just be Benjamin the stroke patient and not Ben this other guy that Ben this party kid and college Ben this wannabe bodybuilder. But I could just be the stroke patient who doesn’t know what he’s doing and just wants to recover further, but doesn’t know how to move forward.

Yeah, that was like the biggest thing for me was just finding like a group of people for the first time in four and a half years.

Bill Gasiamis (56:19)
Yeah. I know that feeling of almost like belonging, but being understood and not needing to pretend and all that. That’s so good when you go into a room where people have been through what you’ve been through. It’s completely different because they get it and you don’t even have to talk. You just know that they get it and they know you. and it’s interesting that you said like what you got out of it was

Like all

emotional and

kind of more more along the lines of things that are unspoken rather than I walked out better or I my muscle was better or this was better or that was better. That’s definitely a goal. That’s definitely something to work towards and always find a way to try and optimize. But you’re talking about I I left feeling better, thinking better, clearly more understood, more all these things. People don’t realize that the

gravity of that experience and how profound li i it can change their life and put it on a different trajectory in a good way.

Benjamin Miller (57:35)
Yeah, I would say like even going back and volunteering, like helping work with stroke patients. It was the first time many of them would be around a group of people who they could just be themselves. could just like, they could struggle together. They could celebrate their wins, little wins together. Cause like, just like watching people walk for the first time. And I don’t know how like probably since their stroke and it was just, yeah. And like, they like just felt like,

the level of community that they’d build and even though they’d known each other for one week, two weeks, so it was a really beautiful thing just to watch humans, like human beings in that way. Just like how I, I know how isolating at post stroke it can feel that no one understands like why me? And then just seeing people who feel the way that we felt and then finding that same level of community and home.

Bill Gasiamis (58:31)
Yeah, I know exactly what you mean. so it’s twenty twenty six, we’re near the end of twenty twenty six. How are you these days? How are you feeling?

Benjamin Miller (58:42)
Yeah, doing, I mean, been really well, to be honest. Had a great summer, great spring, just really on a upward trajectory right now. I wrote my memoir, Ed and I, available on YouTube and am working on self-publishing my workbook that I kind of built over these years called Self-Healing.

Just like a, I want it to be like a pocket size guide that can take anywhere. And just for anybody who just after for myself being through too many psychologists and psychiatrists to count on my hands and toes, that I just wanted to create a all inclusive guide to what helped me recover mentally and emotionally and be able to integrate. Like, I don’t think recovery is just like.

You’re not recovered, you’re broken, then you’re healed. It’s just like a constant every day, check, check, check in, check in, check in, check in. Sometimes we start off the path, then we come back. We refine our center and it just, I don’t think it’s ever just a end journey. So just kind of created a workbook off that and I’m working on a website right now to have that. And we’d like to start public speaking, least around the United States right now. And I just see where we go.

Bill Gasiamis (1:00:11)
Yeah, man. It’s such a good place to find yourself. And I know the feeling of leaving the psychologists behind, you know, and the counselors behind and everyone behind and saying, Well, I don’t I think I’m good. I don’t need you now. I was probably seeing a counselor from the age of about twenty seven and still do, but there are lots of gaps in between

sessions now where there previously wasn’t. There needed to be more regular sessions, sometimes weekly, and then every two weeks and then monthly. and then once or twice a year. But now I’m kind of back into the regular monthly.

Benjamin Miller (1:01:00)
you

Bill Gasiamis (1:01:01)
And it’s been like that for about a year. And it’s just because life has changed. Things are different and I’m

reassessing and changing direction and all that type of thing. And I need somebody who’s got my back. Not not

Benjamin Miller (1:01:20)
Enough.

Bill Gasiamis (1:01:21)
that everyone around me doesn’t have my back. They do, all my family, my wife, everyone, they’re amazing. It’s just not their job to take go on the journey with me. Like they’re doing their own thing. It’s their own journey. So I I sort of seek out support.

from an independent person to just be fully even though they’re getting paid to be fully on my journey with me to support me through that. And it’s so good to be able to go back to something like that, to reach out to somebody that has been left behind for a little bit. I’m gonna venture on my own, you know, I’m a big boy now. I’m gonna go and

see what the world’s like. the world has thrown me a curveball. Okay. I’m gonna manage that, but also I’m gonna reach out and get some support, guidance, be it a Tai Chi coach, be it a Mutai coach, be it Linda on one of the events. There’s always a need for people to be

Involved in supporting us overcome and grow. But your pocket book is that as well, right? Somebody is on their own journey, but they pick up a book that you wrote because you’ve got some things to share with them that helped you and that might help them. And to self-heal is such

Benjamin Miller (1:02:57)
Thank

Bill Gasiamis (1:02:57)
a gift to be able to self-heal.

I love the idea that you can get better at self healing.

Benjamin Miller (1:03:10)
Yeah.

And I do fully agree that we always need someone like that. We can just fully disclose everything and just like let it all out. And that’s like one thing I want to tell your listeners is like if they ever need someone to just vent to just like an open ear to listen to, they can reach out to me on email, Benjamin Miller, zero one one seven at gmail.com or if they have Instagram at Ben shoe B and CHU Miller.com.

Miller. And I just like, I know what it feels like to not be able to vent to anybody, just not be able to just let it all out to someone who like, especially with family, like they want to help you so bad that they try to fix you try to fix you try to fix you. And you just sometimes just need someone just to vent and just get it out of your body so you can like have a little bit clearer of like a mental headspace. But yeah, so like if anybody ever needs like, I’m always happy just to be

This is an open ear.

Bill Gasiamis (1:04:13)
Yeah.

We’ll have the links in the show notes. I won’t publish your email address publicly, but we’ll have all the other links in the show notes and if somebody wants to reach out specific I’ll give them the email address. I’ve done that for heaps of people. but it just opens it up for spammers and all that kind of stuff. the family thing’s cool as well, like because they all want to fix the thing.

It’s such an instinct to just fix it and make everything better for the person rather than give them.

space to just sit with the thing that’s challenging them and that’s the problem and vent. I’ve got better. Like I promise, as you get older, you get better at just listening to somebody talk. My wife did that last night and I actually found myself thinking while she was just bloody talking, no, shut up. Don’t say anything. I don’t know what she’s on about. I don’t know why she’s saying what she’s saying. Just don’t

Say anything, just acknowledge her, acknowledge her, acknowledge her. And then she finished, and then we had a couple of words about it just at the very end, and then she was done. It was fine. And I didn’t step in, I didn’t fix it, I didn’t try and change it, I didn’t tell her what to do. All I did was just uh-huh, and help her and help her get through it. And it seems to be so

Counterintuitive, but it is better sometimes to say less.

Benjamin Miller (1:05:57)
It’s skill, most definitely something that’s hard learned.

Bill Gasiamis (1:06:05)
Sounds like you’re getting better at learning new skills. I really appreciate you reaching out, man, and sharing your story, being so open and transparent with everything that you had to go through to get to where you are today. And I actually look forward to hearing the book is complete because then we can have a discussion about the book and we can promote the book on the podcast as well.

Benjamin Miller (1:06:34)
Thank you for having me on Bill. It’s my pleasure and thank you again.

Bill Gasiamis (1:06:40)
Well, that’s another episode Done and Dusted. What a fantastic guest Benjamin was. I really learnt a lot from his resilience and perseverance and the way he goes about thinking about his continued journey to recovery from everything that has ailed him. If this episode moved you, pick up a copy of my book, Your World Doesn’t Have to Stay This Small, a practical guide to rebuilding your life after trauma, even when you’re not ready. It’s available on Amazon.

Search for my name, Bill Gassiamas, or click the link in the description so you can find it. And if this show has helped you and you would like to help me get to a thousand episodes so that every stroke survivor can find this podcast and feel better about their stroke recovery journey, you can support the show on Patreon.com/recoveryafterstroke. From as little as six dollars a month, you’ll be helping me cover the costs of hosting, recording, editing,

publishing and paying the person that helps me to put this episode out every week. Just visit patreon.com/recoveryafterstroke.. Thank you so much for tuning in and listening. I’ll see you on the next episode.

The post He Was 16 When a Stroke Ended His Football Career – Benjamin Miller on Identity, Substances, and Finding His Way Back appeared first on Recovery After Stroke.

Cassie Jewell got back from Iceland on a Monday. On Wednesday, she was demoted from the job she had built her life around. On Friday, she was in an ambulance with a stroke.

She was 42, a licensed counsellor supervising behavioural health programs inside a US jail. She loved working with inmates and took two or three extra hours of work home most nights. “My entire identity was my career,” she told me. Within a single week, she lost the role and nearly lost her life.

Her story shows something many survivors struggle to name: identity after stroke isn’t only about what your body can still do. It’s about who you are when the roles you relied on are gone.

On the Thursday night after the demotion, Cassie stayed up writing a book, determined to prove she still mattered. As she typed, her left hand stopped working. She put it down to tiredness and went to bed.

She woke the next afternoon knowing something was wrong but not what. She decided it was a panic attack. Then she remembered her hand. She texted her mum, a nurse practitioner, who told her to call 911 and ask for a hospital with a stroke centre.

When the paramedics arrived asking for the stroke patient, Cassie was the one who had answered the door. One side of her face was drooping and her left side was weakening. The diagnosis was an ischaemic stroke in the right basal ganglia, a deep brain region involved in movement, balance and, as she discovered, emotional regulation. If you want to understand this area of the brain better, our episode on lower basal ganglia stroke (https://recoveryafterstroke.com/lower-basal-ganglia-stroke/) goes deeper.

Her doctors told her stress contributes to stroke rather than causing it directly, and her cardiologist is still monitoring her heart rhythm. Cassie has her own view: “I was literally burning myself to the ground… and then my brain was like, okay, we’ve had enough. We’re gonna stop you.” It’s a theme we’ve explored before in stroke and stress (https://recoveryafterstroke.com/stroke-and-stress-darren-walker/).

The day after her stroke, Cassie tried to go to work. Her mum stopped her. Later, before she was cleared to drive, she got behind the wheel and bumped another car on her first day out.

There’s a name for part of what was happening: anosognosia. It describes reduced awareness of your own deficits after a brain injury, and it’s more often associated with right-hemisphere strokes like Cassie’s. It isn’t stubbornness or denial; it’s a symptom of the injury itself, which is why a survivor can sincerely insist they’re okay while the people around them can see otherwise.

Cassie summed up that period in one line: “It’s fine, it’s gonna be fine, even though it clearly, you know, wasn’t fine.” For families, understanding it can turn an argument into patience.

Identity is built from what we do, the roles we hold, and the stories we tell about ourselves, and a stroke can remove several at once. The more tightly your sense of self is tied to a single role, the larger the gap it leaves.

“I lost my career and myself at the same time,” Cassie said. Her first job after returning to work didn’t last. She found she wasn’t as quick as she used to be, and that raised a harder question: “When you measure your self-worth in the things that you do… and then all of a sudden you don’t have your career anymore, who are you?”

I recognised that question. Before my own strokes, I was a business owner and a dad, and I couldn’t have told you anything about myself beyond those labels. I didn’t have the vocabulary for identity loss. Guests such as Adam Wolfers (https://recoveryafterstroke.com/cerebral-vasculitis-stroke-identity-change-adam-wolfers/) have described the same collision between who they were and who they now are, and anyone weighing up work decisions may find our episode on changing career after stroke (https://recoveryafterstroke.com/change-career-after-stroke/) useful.

The emotional side can catch even a professional off guard. “You’d think as a therapist I would be good with it,” Cassie said, “but I’d prefer to deal with other people’s emotions, not my own.” Our conversation about emotional changes after stroke (https://recoveryafterstroke.com/emotional-changes-after-stroke-sam-hanes/) explores this further.

Eighteen months on, Cassie doesn’t have an elevator pitch for who she is. She’s clearer about who she isn’t: someone driven by work. She values free time, her partner, and her dogs. She works full time doing intake assessments and sees private clients, and she describes herself this way: “I’m not as sharp as I was before, but I think I’m kinder.”

A stroke, she says, “strips away everything else so you have nothing left but yourself,” and then “you can also choose what your new identity is gonna be.”

That choice matters most. For most of my life I did what I’d been trained to do; it took a stroke to show me I could choose differently. Researchers Richard Tedeschi and Lawrence Calhoun called this post-traumatic growth: positive change that comes from the struggle with a traumatic event, not from the event itself. Cassie put it in her own words: “It’s not about the stroke. It’s about, okay, what am I gonna choose to do now?” It’s the idea at the centre of my book, The Unexpected Way That A Stroke Became The Best Thing That Happened (https://recoveryafterstroke.com/book).

Drawing on Cassie’s story, here are a few starting points:

Watch or listen to the full conversation with Cassie Jewell. You can find more of her work at cassie-jewell.com (https://cassie-jewell.com).

If a stroke has left your world feeling smaller, my new book, Your World Doesn’t Have to Stay This Small (https://mybook.to/yourworld), is a practical guide to rebuilding your life after trauma, even when you’re not ready.

If this show has helped you, you can support it at patreon.com/recoveryafterstroke.

This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.

A stroke at 42 took Cassie Jewell’s career and the identity built on it. What she found underneath changed how she works, loves, and travels.

Highlights:

00:00 Introduction – Cassie’s Identity After Stroke
01:08 Life Before the Stroke
09:35 The Day of the Stroke
23:02 Aftermath and Recovery
28:41 Hospitalization and Rehabilitation Journey
32:04 Dissociation and Identity Post-Stroke
38:12 Life After Stroke: Adjusting to New Realities
50:32 How Stroke Forced Me to Discover Who I Really Am
01:02:14 The Dual Nature of Stroke Experiences

Transcript:

Bill Gasiamis (00:00)
Hi everyone, welcome back to Recovery After Stroke. I’m Bill Gassiamis. My guest today is Cassie Jewell, a counselor and author from the United States, who in February of 2025 at 42 had an ischemic stroke in the right basal ganglia. In the same week, she was moved out of the role she had built her whole identity around. We talk about perfectionism and the overwork loop that’s so hard to step out of.

Why she tried to go back to work the day after her stroke, a condition called anosognosia. And the question at the heart of this episode: who are you when your career is gone? Now, if stroke has made your world feel smaller, my book is written for you. It’s called Your World Doesn’t Have to Stay This Small: A Practical Guide to Rebuilding Your Life After Trauma, Even When You’re Not Ready. Search for it on Amazon or tap the link in the show notes.

And if this show has helped you, you can support it at patreon.com/recoveryafterstroke. And a massive thank you to everyone who already supports the show. You’re the reason these conversations keep happening.

And now it’s time for the interview.

Bill Gasiamis (01:08)
Cassie Jewell, welcome to the podcast.

Cassie (01:10)
Hi, how are you?

Bill Gasiamis (01:12)
I’m well. Thank you. Great to see you here. I really appreciate you joining me. I want to ask you a little bit about what your life was like before the stroke. What did you get up to? How did you occupy your time?

Cassie (01:26)
So my life was out of control before the stroke. I was working at a jail and it was a super stressful position. it was just stress all the time. I had a really bad supervisor too, a micromanager.

but I also that wasn’t the only part of my life. I traveled a lot.

I don’t know.

It’s hard to even think about it now, honestly.

Bill Gasiamis (01:54)
How long ago was the stroke?

Cassie (01:57)
So the stroke was it’s been about a year and a half. It was February twenty first, twenty twenty five.

Bill Gasiamis (02:02)
Mm-hmm.

w were you in a relationship? Were what’s the living arrangements like? What were you doing like personally?

Cassie (02:12)
Yes, I was in a relationship. I’m still in the same relationship. but I guess I was talking about work first because that was my entire life. It like revolved around my job. And I actually loved my job. It was just

some of the stress part that I didn’t love.

Bill Gasiamis (02:29)
You loved your job, so you’re working in a jail with inmates?

Cassie (02:33)
Yes, I’m a therapist.

Bill Gasiamis (02:36)
okay.

Cassie (02:38)
And so

I was working as a behavioral health supervisor at the jail. I didn’t have a lot of client contact, but when I did, those were the good days. But a lot of it was just inputting data, which was not fun.

Bill Gasiamis (02:54)
just all about reporting things to the bodies governing the jails or to

Cassie (03:00)
Yes. So specifically I worked with the when I say MAT, do you know what I mean by that? Medication

Bill Gasiamis (03:06)
No.

Cassie (03:07)
assisted treatment. So for the inmates who had opioid use disorders, they would start taking medication to help with that. It’s called Suboxone or buprenorfin is the name of the medication. Suboxon is the brand name.

Bill Gasiamis (03:24)
Mm-hmm.

Cassie (03:25)
But it helps

with cravings, so a lot of the inmates were on the medication. My role was to track all of the inmates who were on medication.

And so that was the data piece, like spreadsheets and just that was a lot. I kind of

Bill Gasiamis (03:42)
So you

Cassie (03:43)
sorry, go ahead.

Bill Gasiamis (03:44)
I was gonna say you became a counsellor or a therapist to have one-on-one contact with people, but you’re finding

Cassie (03:53)
Right.

Bill Gasiamis (03:53)
yourself in a situation where it’s all about statistics, data and a whole bunch of other things that you really w didn’t sign up for when you first started out to be a therapist.

Cassie (04:03)
Exactly. Like it was a good day if I got to spend time with clients or inmates. And a bad day would be me just at my desk, like hunched over till my neck was aching and just like I said, spreadsheets and data.

Bill Gasiamis (04:18)
Your world kind of revolved around work. How many hours a a week did you work?

Cassie (04:24)
I mean technically I was supposed to work forty hours, but I would stay late and I would work from home. So like that’s the worst thing about, you know, since the pandemic everybody works from home. I was able to bring it home with me, so if I didn’t finish something at work, I would just I’d be sitting on my couch make

Bill Gasiamis (04:45)
Is it that the

workload was too too high or was it just the nature of the job?

Cassie (04:51)
So to be honest, well the workload was definitely too high and I I’m sharp enough to know like if it was or wasn’t and it definitely was, but at the same time I’m a perfectionist and I wanted things to be perfect and so that played a lot into it. And this is what I realized in hindsight, ’cause at the time I would have told you that the workload was ridiculous and like I didn’t play any role in it, but I did.

Bill Gasiamis (05:20)
Wow. So that’s an awareness

Cassie (05:21)
I wanted it.

Bill Gasiamis (05:22)
you’ve had recently. The perfectionism thing is a real what is it like a real barrier?

Cassie (05:30)
Yeah, it’s I’ve dealt with it my entire life. But when it comes to employment with certain things, you can’t be a perfectionist ’cause it’s just going to kill you eventually. And for me it almost did. Like I believe my stroke was in part caused by stress because that was the only thing in my life that was like different. I’m a pretty healthy person.

Bill Gasiamis (05:56)
Yeah. At home, when you were working at home, how many additional hours would you be doing if you had a regular day at work and then came home? How much additional time would you be spending?

Cassie (06:06)
Like two or three.

Bill Gasiamis (06:08)
Yeah. Okay. And then are your employers noticing? Are they going, Well, congratulations, you’ve got the best notes in the world or the best statistics or data?

Cassie (06:17)
Nope, nobody noticed. My manager also worked from home and I know this because she would send emails like at ten PM and be like she’s doing the same thing because I think it’s probably in America like jails are not well staffed and not well run. And it’s probably just widespread. You have people who are overworking and no wonder nobody wants to work in a jail.

I loved it though. I loved the like I said, I loved working with the inmates. I like people.

Bill Gasiamis (06:49)
Yeah.

Cassie (06:50)
I like working with people. Doesn’t matter if they’re an inmate or not an inmate, like that’s why I became a therapist.

Bill Gasiamis (06:57)
Yeah. Ideal candidates for support therapy,

Cassie (07:00)
Yeah.

Bill Gasiamis (07:01)
learning new skills, understanding how their behavior impacts their life and other people and all that type of thing. And maybe some of the first times that they’ve ever come across a therapist, would you say for s for a lot of the people that end up in jail?

Cassie (07:17)
Possibly.

And a lot of the people who were addicted to opiates or they maybe h not b have been addicted, but who used opiates didn’t even recognize how deadly it was. They

Bill Gasiamis (07:30)
Mm-hmm.

Cassie (07:30)
had just been like they were young, like I said, children is how I see it. Like I’m in my forties now, but so everybody’s a child to me, but you know, eighteen, nineteen year olds in jail because

Bill Gasiamis (07:42)
Yeah, they yell.

Cassie (07:43)
they were using with a friend or something and they didn’t

know what they were getting themselves into.

Bill Gasiamis (07:47)
No, that’s perfectly fine. They’re children. in my mind as well, I know they’re technically an adult, but it’s such a small gap between childhood and adulthood when you’re eighteen. Like I

Cassie (08:01)
Yeah.

Bill Gasiamis (08:02)
mean, as if there’s a a year when it’s definitely an adult now. I know that the law is a little more kind of restri harsh on that definition, but

The truth

Cassie (08:15)
Yeah.

Bill Gasiamis (08:15)
is is this is very hard to kind of fit people into.

Cassie (08:18)
Their brains are still developing.

Bill Gasiamis (08:19)
Yeah, till twenty five or something, like many

Cassie (08:22)
Yeah.

Bill Gasiamis (08:23)
of the lobes haven’t come one of the lobes at least hasn’t come online. I think it’s the frontal lobe.

Cassie (08:27)
That I don’t know, but I’m sure

Bill Gasiamis (08:28)
Yeah.

Yeah. I might be wrong, but that’s okay. so life was pretty hectic, pretty full on, lots of work at home as well as at the office or in the jail. And then

Cassie (08:41)
Mm-hmm.

Bill Gasiamis (08:42)
how is that impacting kind of your just regular life in that switching off part, that doing things that you loved, or going out with your partner, or taking the dogs for a walk? How did it affect that part of it? Did it eat into that?

Cassie (08:57)
It did. I was not a great person to be around ’cause I was cranky all the time. I was tired all the time and thinking about work all the time. But I’ve always traveled and so I made a point to travel still. So I was still traveling the world. so that piece was good.

Bill Gasiamis (09:14)
Like the circuit breaker that you at least always did for a period of time. How long would those trips last?

Cassie (09:22)
I travel whenever I can, so sometimes it would be like a three day trip, sometimes it would be like a ten day trip.

Bill Gasiamis (09:29)
Uhhuh. So squeeze in whatever you can just to get out and about.

Cassie (09:32)
Mm-hmm.

Yep.

Bill Gasiamis (09:35)
So what happened on the day of the stroke? Do you have any recollection of that, any awareness of the lead up to that?

Cassie (09:43)
So I can tell you the story. There’s not like a anything that seemed to lead up to it. It was just living my life as normal. I had just gotten back from Iceland, but you know, like I said, that was travel was my norm. And

So this is still hard for me to talk about. This was like a horrible thing that happened to me. This is like sometimes I think it’s worse than the stroke. I don’t know.

If it is or not, but I was demoted from my position. And so this position is, you know, it’s everything. And then at the same time, it’s like the worst thing in the world because I’m so I’m overworked. I’m exhausted. I have a a manager who’s not supportive. And I could almost see it coming, but I was still still shocked and like.

I put my like everything into my career. Like that’s who I am. Like my entire identity was my career. And so being demoted was was is maybe the worst thing that has ever happened to me. And so that happened on a Wednesday and then the stroke happened on a Friday. So it was a very busy week for me. And I had gotten back from Iceland on a Monday. So it was in one week that all these things happened.

Bill Gasiamis (11:07)
Intense so you’re back at work after traveling, jet lag, you know, holiday mode, all those things. Then two days later you get called into the office, you get demoted from the role that you’re in into a different position. You take

Cassie (11:22)
Mm-hmm.

Bill Gasiamis (11:22)
a bad lib by the sound of things.

Cassie (11:25)
I think I was very professional when it happened but it was absolutely like devastating. It’s

Bill Gasiamis (11:31)
Yeah.

Cassie (11:32)
not something I talk about because it’s still like very painful.

Bill Gasiamis (11:35)
Raw.

Yeah. And then two days later, what happens on the Friday? How does that play out?

Cassie (11:43)
So it was Thursday night and I was I had just stayed up and been writing. I was working on a a book that I never ended up publishing, but it was a book that I was working on. And it was kind of like a well, let me show that I still matter, that I’m still worth something by I’m gonna write this book and so I was just driven by like spite and like my whatever, who knows.

So I hadn’t gone to sleep at all, and it’s Thursday night, and I’m still up and I’m still writing, and I’m drinking wine and I’m on the couch.

so leading up to it was the demotion, and had been traveling, and then I’m typing, and as I’m typing, like my left hand just stops working, and I didn’t think anything of it. I was like, that’s

Weird. This is weird. And I was like, I’m gonna go to bed. I’ve had too much to drink. And so like I get up and just kinda stumble to bed. And it’s not until the next morning, well it’s a afternoon by then, when I finally wake up or I get up and I know that something’s like wrong and I don’t know what’s wrong. I’m just like I can tell that something is off with me.

And I’m saying this to my partner. He’s like in the other room, but I’m still in bed. I’m like, something is wrong with me. Something is wrong with me. And I just keep on repeating that over and over again. And I couldn’t figure out what was wrong. And I was like, I decided that I was having a panic attack because I’m familiar with that. And it fit because I felt like I was dying, but I knew I wasn’t actually dying. And then I remembered, I was like, wait a minute. Last night was weird. That was weird. That thing happened. And so

I don’t call 911. I text my mom. And I’m like, mom, this happened to me. My mom is a nurse practitioner, so it makes sense that I texted her instead of calling 911. And she was like, Those are stroke symptoms. Call 911 now and ask me to take you to a stroke center or to a hospital with a stroke center. So my partner ends up calling. He makes the phone call. I don’t know what I’m doing at that point. And he’s like,

Yeah, maybe you should get ready. And I don’t know how I did because apparently I’m paralyzed on my left side. I don’t know when that actually s like settled in, but I was able to function enough until the ambulance arrived. And they’re like, Where’s the victim? Where’s the stroke victim? And I’m like, it’s it’s me. Cause I’m still standing, I answered the door and everything. But my

Bill Gasiamis (14:21)
Wow.

Cassie (14:24)
And I don’t know this of course, but like later I’m told one half of my face is drooping. So it was obvious, even though I’m still like walking and talking.

Bill Gasiamis (14:34)
And there

Cassie (14:34)
And I

had I had pictures of it, like how bad it was, like how pronounced it was, but I deleted them all because I’m very vain and I don’t want anybody to ever see how awful it looked.

Bill Gasiamis (14:44)
Wow.

Cassie (14:44)
Yeah.

Bill Gasiamis (14:45)
Do you prefer that you hadn’t deleted that now or are you happy that they’re gone?

Cassie (14:51)
I have there’s one picture left. Somebody else took the picture actually. And like looking back on it’s just I mean, I probably it probably would be good to have those pictures because I would be able to like remind myself of how far I’ve come, but it’s also like really d uncomfortable and disorienting to see yourself look like that. I don’t know if you

Bill Gasiamis (15:13)
Mm-hmm. Yeah.

Cassie (15:15)
if

you have that experience if there were pictures taken of you after your stroke.

Bill Gasiamis (15:20)
There was, not a lot of them, only because it wasn’t the first thing on our mind.

Cassie (15:26)
Mm-hmm.

Bill Gasiamis (15:27)
but I had pictures taken when I was in the rehab facility where w I was strapped in and I was attached to the ceiling and I was walking along trying to rehabilitate my leg

Cassie (15:39)
Mm-hmm.

Bill Gasiamis (15:40)
like like a marionette. so that’s about it. And I’ve got some pictures of my scar, which were pretty epic.

The surgery scar was pretty epic.

Cassie (15:52)
Yeah.

Bill Gasiamis (15:54)
and and then that’s about it. and they’re

Cassie (15:58)
So how do you feel

when you look at those pictures?

Bill Gasiamis (16:01)
The thing, Cassie, with me is I don’t relive the experience when I talk about it. Whereas I know people who have had something challenging happen to them that th when they’re re expi when they’re talking about it, it’s like they’re reliving it. So I kind of really understand why it’s difficult for them to talk about it or to see a photo.

And when I talk about that, there’s a disassociation with it. And it’s not a disassociation that I’ve made from the perspective of I don’t want to think or remember or etc. It’s just that I I’ve spoken about it so much that it’s like I’m telling a story about somebody else. Now,

Cassie (16:44)
Yeah, that’s healthy.

Bill Gasiamis (16:45)
yeah, it’s me, but it’s not really.

Cassie (16:48)
Right.

Bill Gasiamis (16:48)
I see the pictures, but it’s 12 years since brain surgery. Like I don’t connect me to that.

day, even though it’s definitely me and I have the deficits and I live with the, you know, injury and all the things that it did to me. Like, I don’t know, like I I don’t get triggered by in a negative way, but I understand when I’ve seen people talk about experiences that they get triggered by, it’s because they’re reliving it and that somehow they haven’t separated their current self to the the self that went through that part of the experience.

Cassie (17:25)
I also think that just the passage of time helps with it, like ’cause you’re so far removed from it. It’s

Bill Gasiamis (17:30)
Indeed.

Cassie (17:31)
like I believe that people change, like almost every decade we become new people. Not like every decade on the, you know, like at right at thirty and then forty, but like approximately every decade we become relatively

Bill Gasiamis (17:44)
Yeah.

Cassie (17:44)
different people than we were before. And so it’s like looking back

Bill Gasiamis (17:49)
I agree.

Cassie (17:49)
at a different person almost when you see that.

Bill Gasiamis (17:52)
I I agree. And a different person in many ways. Like not a podcaster, not an author, you know, not a speaker. a very different person, you know, and

That one that the person that I was was just basically a guy not dissimilar to what you described, just getting through, you know, like working as much as possible, at home, at work, too many hours, the phone always on, people reaching me any time of the day. It was mental. and it was the best time and the worst time. I’m gonna interrupt you for a second ’cause I’m expecting a phone call.

From my dad’s appointment at the hospital. One moment, please. Hello. Hey, is that Bill? Yes.

Yeah, he’s done with that injunction. He’s ready to be collected. Okay. well we’ll get there as soon as we can if that’s all right. Yeah, sure. Shouldn’t be too late. Okay, no worries. I’ll just organise someone. Thank you so much. Bye bye.

My dad had a little procedure.

Cassie (18:58)
Si okay.

Bill Gasiamis (18:59)
Yeah. And he just needs to get picked up.

And of course

I bet you’ve his grandson who was meant to pick him up has forgotten.

And we’ll edit all this out anyway, so

Let’s see what it says.

All right. let’s see what it says.

Awesome, he’s going now.

yeah, so as I was saying, so I

I I I put a lot of work into being a different person as well. Like that was important. I couldn’t be the same guy that came out of all of that stroke stuff because that guy was not heading in the right direction. He was gonna be unwell again. Right. And and what you said kind of reminds me of how I was. perfectionism might not have been my thing, but it was there was a thing, you know, that I

bought into that I needed to do that I couldn’t do any other way, that if it didn’t happen like that it was gonna be wrong. You know? And it was for me it was I can’t outsource it to anyone else because nobody’s ever gonna do what I do, how I do it, make the customer happy so we can get paid. It yeah, it’s kind of it kind

Cassie (20:08)
That’s perfectionism, maybe. In a sense.

Bill Gasiamis (20:11)
of is. Yeah. I see perfectionism in my wife differently ’cause she described what you described at her cause she’s a she’s studying and just finished her

masters in psychology. Yeah, and she does

Cassie (20:27)
good. It’s awesome.

Bill Gasiamis (20:28)
case notes and my gosh. It’s like you’ve done a day’s work. Yeah, I honestly like she does a day’s work. And then I’m like, how long did it does it need to take to do case notes after a day’s work? And she’s like, as long as it takes. And I’m like, Well, it as an outsider, somebody who doesn’t understand what you’re doing.

It seems like it’s taking way too long after the session with your client to d to do the case notes. It’s it’s what it seems like to me. And and she’s not denying it, but she is kind of saying, Well, I’m early on in my career and I have to make sure that the case notes are done well, et cetera. And I’m like, How have you ever compared them to other people’s case notes to know what’s good enough or acceptable?

And that’s kind of what I didn’t do either. Like I never understood that when you’re delivering a painting project to a client, ninety percent is good enough. If the client says it’s a pass, it’s a pass. And then you get paid. Trying to overdeliver to ensure payment, because I was concerned. I think it it was more for me, it was about getting paid rather than me being a stickler for perfection. It was about if I don’t do it.

To the client’s expectation, then I won’t get paid. And that was kind of what it was. But it’s a similar ailment, you know, like it gets in the way of spare time and hours for me to do something other than work, but I I didn’t know it at the time. It was just the way that it was.

Cassie (22:10)
Yeah. Well it’s hard to know when you’re in the middle of it also. And my partner would point it out like how insane I was being and I didn’t see it. Like I said at the time I just I didn’t well

Bill Gasiamis (22:26)
Yeah.

Cassie (22:27)
I did to an extent, but not enough to make me stop.

Bill Gasiamis (22:33)
Yeah. And you then have maybe the exit part of the loop. Like, where do I get off the loop? You know, like how do I jump out of here? I know he’s told me, and I know somebody else might have mentioned it. And I know I’m working too many hours, but like how do I get out of it? Like what’s the the exit? I get that too. That’s kind of how I was. The stroke became that for me. Is that how you kind of experienced your stroke afterwards? Was it a circuit breaker as well as this illness?

Cassie (23:02)
Yeah, I feel like that, like the way you said it. Like I feel like I was literally burning myself to the ground, like I was burnt out and just wasn’t gonna stop and was gonna keep on going and going and going. And then my brain was like, Okay, we’ve had enough. We’re gonna stop you. And I had a stroke.

Bill Gasiamis (23:21)
Mm.

Cassie (23:22)
And they say that stress doesn’t directly cause strokes, like it contributes to it. But like I mentioned, like I’m pretty healthy.

And I was I’m forty three now. I was only forty two. And that’s not normal. Like it’s usually age sixty five and older that have the strokes. Definitely

Bill Gasiamis (23:42)
Yeah.

Cassie (23:42)
wasn’t expecting it.

Bill Gasiamis (23:44)
What kind of a stroke was it?

Cassie (23:46)
It was an ischemic stroke. It was a right hemisphere stroke in the basal ganglia, which I didn’t know what they were. I learned about it after my stroke.

Bill Gasiamis (23:55)
And did they have

Cassie (23:55)
They apparently do a

lot with like has to do with your motion and balance, but also emotional regulation, which that was a huge thing when I was recovering, like having to deal with emotions. You’d think as a therapist

Bill Gasiamis (24:10)
Just crying.

Cassie (24:11)
I would be good with it, but I’d prefer to deal with other people’s emotions, not my own.

Bill Gasiamis (24:16)
And you’re human as well, right? So yeah. Just because you

Cassie (24:17)
yeah, I forgot about that. Yes. That too.

Bill Gasiamis (24:20)
learnt about it doesn’t mean that you’re the epitome of the perfectly emotionally regulated human just because you learned about it or studied it.

Cassie (24:28)
Yeah, absolutely not.

Bill Gasiamis (24:31)
Yeah. and do they know what the underlying cause of the ischemic stroke was? Was there an underlying cause?

Cassie (24:40)
They still I have like a little heart thing in still. It’s they’re like, maybe it was AFib and I told my cardiologist I was like, it’s not, it’s stress. I know it was stress. And he was like, it might be AFib. We’re gonna still check for this. So it’s like it can stay in for up to four years. I don’t know when they’re gonna take it out. but so far no AFib, which kind of doesn’t mean that my theory is correct, but it seems more plausible that there was they can’t figure out

Anything else? I probably drank too much. I was drinking the night of my stroke, but they said that didn’t cause it.

Who knows? Combination of

Bill Gasiamis (25:16)
Hmm. What

Cassie (25:18)
alcohol and stress.

Bill Gasiamis (25:20)
Yeah. Or when you say you drink too much as in what are you doing, a bottle a day or just a couple of glasses or

Cassie (25:28)
So before my stroke I was probably drinking more than a bottle of wine a day.

Bill Gasiamis (25:33)
Okay. Yeah, that’s too much.

Cassie (25:34)
So that’s like

four to five drinks. And for women, you shouldn’t have more than one drink of alcohol per day.

Bill Gasiamis (25:43)
Yeah, it is too much for any person really. Yeah.

Cassie (25:46)
It is. That

was my way of coping with stress.

Bill Gasiamis (25:51)
Yeah, takes the edge off, right?

Cassie (25:53)
Yeah.

Bill Gasiamis (25:53)
Yeah. It’s not uncommon. Like it’s so many I’m not hearing anything new here, you know, like it’s

Cassie (26:00)
Yeah.

Bill Gasiamis (26:00)
we’re all the same pretty much everywhere. It doesn’t matter where you live. And everyone needs a way to cope. And sometimes the easiest thing is whatever’s at arm’s reach. And it could be for it could be a piece of bread. It could be a piece of you know, sweet cake or whatever, it could be alcohol. There’s so many ways that we

Cope and it’s really useful, especially if you can cope. Yeah. If you Yeah. Yeah. The problem

Cassie (26:25)
It works so well it just kills you at the same time.

Bill Gasiamis (26:30)
is it’s short lived coping and it’s not learning or teaching you how to cope ongoing and without it. And that’s the the challenge, right? Is how do we cope with that? I used to smoke. And I would tell you still today that I loved smoking. It was one of the most amazing, most enjoyable things to do.

It also came with alcohol and it came after a meal and it came with a coffee. Like all the things I loved to do happened together and smoking was one of them. And I’m sure, I’m certain it was, you know, the nicotine hit and all the things that you get from a cigarette, good, bad, were all contributing to my coping mechanism. But I also was creating the perfect storm for being unwell and

Cassie (27:17)
Right.

Bill Gasiamis (27:18)
stress at work,

Not enough me time, always thinking about the job, the phone always being on, all that kind of stuff. And then it’s like, okay, well, what do I need? What do I need? What do you I know what I need? I need another coffee and a cigarette. Let me go and grab one. That’s gonna make things better. And it did, like just for that small amount of time. But not enough to be use supportive or not enough to be healthy. It was not healthy, but that’s okay. I learnt and

I don’t do that anymore. I don’t smoke anymore. Although I love walking past people who are smoking.

Cassie (27:57)
That’s funny. I hate the smell of I think a lot of people do, the smell of cigarettes.

Bill Gasiamis (28:01)
Yeah.

I love the smell of cigarettes. Not in the ashtray part, just in the air, kind of wafting around. You know, there was nothing better than being at a really smoky club or whatever. I don’t like the smell in my clothes the next day. But I’m old enough that when we were smok when we were going out to nightclubs and dancing and all that kind stuff, smoking was still allowed indoors in Australia. Whereas now it’s not. it was so cool. man.

so how long did you end up in hospital for and how did you manage to deal with the deficits that it was causing before you went home?

Cassie (28:41)
So I was in the like the actual hospital, like in the hospital on the stroke unit for a week. And then they moved me to inpatient rehab for a little over a week. So altogether it was a little over two weeks, so not that long. I was paralyzed for about a week, although it’s crazy, I barely remember it. you’d think like something huge like that you would remember, but I just remember the doctors coming in and being like, Okay

pull on my hands, now push on my hands or do this, do that and like I just remember my left hand wasn’t working as well, but it didn’t it didn’t feel like being paralyzed, but I don’t guess I don’t know who would know what that feels like if you’ve never been paralyzed, or you wouldn’t

Bill Gasiamis (29:23)
Mm-hmm.

Cassie (29:24)
feel anything, I guess.

Bill Gasiamis (29:25)
Mm-hmm.

Cassie (29:26)
And I was able to walk, so my rehab wasn’t that like intensive. It was focusing on I had this weird like kind of like lean where I would like lean left and like veer off to the left. Like if there was nobody to direct me, I would have just like walked off into the walls.

so two weeks and then for a month I did like outpatient OT and PT. But I also like I took a look at my drinking and I was like, I need to stop drinking. And so I went to treatment like a month after my stroke, or it was like six weeks after my stroke. So that interrupted my OT and PT. But two weeks to answer your question about

two weeks in the hospital and in rehab, which was they

were basically the same thing. I was in a bed, an alarmed bed, because I was a fall risk.

Which was awful ’cause I’m super independent, so having that taken away from me was like I couldn’t I wasn’t even allowed to get up. I would get scolded like a naughty child when I did. It didn’t stop me from getting up, but I got some scoldings. The nurses I was not a favorite among the nurses, I suspect.

Bill Gasiamis (30:38)
Mm-hmm. Mm-hmm.

Yeah, they were looking up for you.

Yeah. They were they were looking out for you but they needed to get the point across as much as possible. I

I kinda get it, but yeah, it’s also not nice to be told you shouldn’t do something. but when you can’t do it and it’s a risk

to your health, then maybe it’s maybe it’s all right to be told don’t do that

in no uncertain terms.

Cassie (31:13)
They so they taught my partner how to like unarm the bed. And I have to give him credit here because I like begged him to teach me the trick to unarm it and he never did. Yeah. Which was I didn’t care for it at the time, but he realized that maybe I might hurt myself, so

Bill Gasiamis (31:26)
Ha ha ha.

Cassie (31:35)
didn’t let me have my way on that.

Bill Gasiamis (31:38)
I’m gonna have to interrupt us again, my dad’s calling.

Cassie (31:41)
Okay.

Bill Gasiamis (31:44)
I don’t like cancelling appointments when we’ve made a a appointment for a podcast. So anyhow I’ll get this

Bill Gasiamis (32:03)
to that.

Bill Gasiamis (32:12)
Is

He’s just went in for a little procedure where they injected some cortisol into his back ’cause he’s got some pain. And they put him under so they need him to be picked up. And he’s getting picked up, but he just doesn’t know it and w now

we’re going backwards and forwards between

between us and the nurses, but I did tell

him and he does know but he’s eighty two and he doesn’t listen. If he rings back I’ll just interrupt us again. I’m so sorry.

Cassie (32:46)
No, it’s fine.

Bill Gasiamis (32:49)
so

Your

time in

hospital other than being scolded. How do you come to terms with what has happened? Do you come to terms with it? Are you thinking about what this means for you now?

Cassie (33:06)
Not once. It didn’t even cross my mind. My world like when I look back on it, like my world shrank just to like the hospital bed in the room that I was in. And it just that was the only thing that existed. I didn’t think about, well, how is this gonna impact me long term? Am I gonna be able to go back to work? Like they gave me they told me I couldn’t go back for four months. But I actually tried to go back to work. I was

Bill Gasiamis (33:19)
at work,

Cassie (33:34)
working overtime, I was also working at a different

location, doing like some overnight shifts. And the day after my stroke I tried to go to work. I was going to just go

and not tell anybody and then come back. But they found out my mom was there. She found out. She’s like, Cassie, you can’t you can’t go. You can’t work. You can’t even walk. And I was like, I mostly would just sit at a desk. It should be fine. I’m sure it will be fine. That was kind of my

motto the entire time, like,

it’s fine, it’s gonna be fine, even though it clearly, you know, wasn’t fine.

Bill Gasiamis (34:09)
just there was that stroke

brain? N like normal Cassie wouldn’t do that. You would know not to do that normally,

would wouldn’t you? Like somebody is unwell, that’s not what we do when we’re unwell. Or was it just

Cassie (34:21)
I don’t

Bill Gasiamis (34:21)
the stroke playing up on you?

Cassie (34:24)
So it’s both. Like I didn’t feel unwell for one

thing. Like I felt or I thought that I was normal. I thought I was still myself then. But then with right brain stroke especially, there’s I forget the word for it, but you become overconfident in your abilities and you think

that you can do things that you can’t do. And so

Bill Gasiamis (34:47)
Wow.

Cassie (34:47)
that was a part of it too. I do you know the word for that?

Bill Gasiamis (34:51)
I don’t.

Cassie (34:52)
There’s like a very specific word for it. It also happens to people with severe mental illness where they think that they’re okay when they’re not. But it’s specific to right

brainstroke. And so I thought it was fine. And then also like me, I’m pretty stubborn and think

Bill Gasiamis (35:06)
Yeah.

Cassie (35:13)
I know better than doctors. So there was that too.

Bill Gasiamis (35:20)
I’m gonna check what it is. I wonder if I can ask Chat GPT what it is, w what is it when somebody’s overconfident after a brain injury or a

stroke, right? Is that’s kind of what the search will be. Let’s see what

Cassie (35:32)
Probably starts

with an A.

Bill Gasiamis (35:36)
wonder what Chat GPT’s got to say about it. Yeah.

Cassie (35:39)
But it’s being completely unaware of your

Bill Gasiamis (35:44)
Anosognosia. Anosognosia. It’s a Greek word by the sound of it. from my background. And it is the

Cassie (35:45)
That sounds familiar.

Bill Gasiamis (36:00)
Anosognosia is impaired awareness of one’s neurological deficits following brain injury or a stroke. A person may genuinely not recognize or may substantially underestimate.

their problems with movement, cognition, communication, behavior, or other abilities. Does that sound like it was your thing? Yeah, wow.

Cassie (36:19)
That’s exactly what it was. And

But then that kind of like followed me after

my stroke. Like I was like, wait a minute, am I completely like disabled and I just have no idea? Like so that was difficult. That piece of it, like where I felt like I was doing okay. I mean I was walking and talking still, you know, after my stroke.

Bill Gasiamis (36:37)
Mm-hmm.

See?

So you have cognitive awareness of the deficit, but yet the deficit still plays out. This overconfidence

in your ability still played out, but you’re still kind of have awareness of it somehow.

Cassie (37:06)
Yeah, but I don’t know like to this day, like I don’t know, maybe I was completely not functioning at all and I have a memory that I was, who knows. It’s really weird, it kinda messes with your head.

Bill Gasiamis (37:18)
Yeah. How we it is it’s so weird. I know. I I remember being in all s sort of weird

out of brain spaces and experiences and trying to work out w is this actually happening or am I imagining this happening? Is this reality or is it a dream? Like what is it? had a lot of those moments and then people observing me doing that was the most interesting part ’cause then I had to explain to them what I

Cassie (37:35)
Yeah.

Bill Gasiamis (37:47)
what I was ha happening to me and I was like I was unable to even you know verbalize that like how do I explain that to them when I don’t even know what’s going on. It was just really freaky. and then you ended up going home at some point

and what was that like? What was the transition from rehab and care like when you ended up home? How do you

manage that?

Cassie (38:12)
It was really underwhelming. Like I had to

do training beforehand. They’re like, Okay, you have to learn how to get in and out of the shower and in and out of a car. So I had to do like training for that, which was silly because

Well, like I said, I thought I was functioning fine. But I’ve never fallen once, not once, which I think says that maybe I was functioning to

an extent. The physical disability was never really that big of an issue. It was more like the the cognitive stuff and then like the emotional piece. That was what was my big struggle. But yeah, they

I had to they had to put

me in a wheelchair to leave the hospital, even though I insisted I was fine. They were like, No, we don’t just let people get up and go, you have to do this. So they wheeled me out and my sister picked me up and took me home and that was it. And then I was home and I expected life to go back to normal, but it did not.

Like that was probably I guess being

home was like the wake up call when I was like, my life is gonna be different now. Very different.

Bill Gasiamis (39:25)
Yeah. Cybering.

Cassie (39:28)
Exactly.

Bill Gasiamis (39:30)
Hm. You weren’t working. Were you allowed to drive or go out and about were you up to that?

Cassie (39:36)
You know what? I was really, really, really tired for I’m still tired all the time, but like so I wasn’t like really up to doing anything. I wasn’t allowed to drive for six months, but I did. I got into an accident, I think, my first my first day behind the wheel. It was just a tiny little accident. I just tapped somebody’s bumper and they got very upset about it. They were overreacting, I think.

Bill Gasiamis (40:07)
People tend to do that with car.

Cassie (40:09)
They

do.

Bill Gasiamis (40:10)
Yeah. I don’t know why.

Cassie (40:12)
Yeah, she was upset.

Bill Gasiamis (40:14)
you wouldn’t it how how we act in a car when we’re in the car, when somebody

Cassie (40:21)
Mm-hmm.

Bill Gasiamis (40:22)
does something minor on the road, we would never act outside of the car in the real world in public when somebody crossed our

Cassie (40:29)
Yeah.

Bill Gasiamis (40:30)
path or bumped into us or whatever. It’s just strange what happens when people get in a car. Yeah.

Cassie (40:34)
wild. Same thing online,

people act w in ways they never would in real life.

Bill Gasiamis (40:40)
Yeah, it’s a little bubble of false sort of bravado or security or something, I don’t know what,

and people just change their behavior. I’ve become aware of that recently and I’ve made a massive effort to not be that way. And I did a lot of work around actually not

reacting when I’m in the car to

Cassie (41:00)
That’s amazing.

Bill Gasiamis (41:01)
yeah, incidences that are so insignificant because every time you drive

there is an insignificant incident and if you’re just freaking out about it all the time, all you’re doing is making yourself unwell. It’s just another negative

Cassie (41:13)
Yeah.

Bill Gasiamis (41:13)
thing that you do, right? So I’ve made a concerted

effort about a year ago to make sure that I do not react by yelling and screaming to people in a car when they’re just driving on the road. I’m doing exactly the same thing. I don’t know where I get off being the guy.

who thinks that my driving is so much better that that I I am if within my rights to be aggressive or act out or yelling or screaming at the person

in the other car who actually can’t hear me anyway and doesn’t even know what they did wrong.

Cassie (41:56)
That’s so one thing that like I could be a bit of a jerk before when driving. Not that anybody would know. I was just in my car yelling and cursing, but you know But since the stroke I’ve actually I have more patience because I’m much I’m slower and that’s just in like life in general, but also behind the wheel. I’m I’m much slower. And

Bill Gasiamis (42:07)
Yeah.

Cassie (42:21)
so then when somebody starts tailing me, I get super frustrated with it, but I’m like

when I think somebody’s going too slow, now I’m like, Well, there’s probably a reason for that so I can chill and just drive slow. I probably need to anyway. So

Bill Gasiamis (42:36)
awareness, yeah. Like it’s like maybe they’re recovering from something, maybe they’re just more careful. Maybe they have a you know, more more kind of anxiousness about them and they want to make sure that they’re paying more attention, you know, it’s

all all sorts of things going on. And judging people without having any idea was s so getting in the way of my just five minute trip down the road, you know, to pick up something. What’s the point of going for a drive and being angry for no reason? Like it’s ridiculous.

Cassie (43:05)
Yeah. The wild thing is is I had all these skills before my stroke. Like I could have I’m a therapist, you know. I understand these things. I empathize with people, but I would get so mad at other drivers. But now I

I’m just like, somebody they’re probably like me. And that’s in not just

in driving, in like all areas of my life. I’m more empathetic. I think I’m a better therapist in some ways. I’m not as

sharp as I was before, but I think I’m kinder.

Bill Gasiamis (43:40)
You have more insight.

Cassie (43:42)
More insight, yes, for sure.

Bill Gasiamis (43:43)
more life experience.

Cassie (43:47)
Yeah. Exactly.

Bill Gasiamis (43:50)
Yeah. so did you kind of find a way back to work? Are you working again?

Cassie (44:00)
I’m working I’m

working at a very different like paced job. I’m doing

intake assessments now, so it’s

Bill Gasiamis (44:08)
manage to deal with the deficits that it was causing before you went home?

Cassie (44:12)
I get more like FaceTime, which is nice, but it’s also it’s not a very challenging job. And before it was the work was very challenging. So it’s different pace of life. But I’m back to work. I’m working full time.

And then I see clients on the side and my and it’s not my practice, it’s a group practice, so private practice clients too.

Bill Gasiamis (44:36)
Sounds like it’s more alig aligned with the whole intention of becoming a counsellor, a therapist, like at the beginning.

Cassie (44:42)
Yeah.

Bill Gasiamis (44:44)
Yeah. Less statistically based and more client focused.

Cassie (44:49)
Yeah.

I do miss the population ’cause like I really liked working with the inmates. But

Bill Gasiamis (44:55)
Yeah.

Cassie (44:56)
I just I wouldn’t go back into that environment.

Bill Gasiamis (45:00)
Yeah. E especially when you’re you know, the people you’re reporting to are also maybe, you know, a bit difficult to handle as well or highly, you know, tense or whatever. They’re we’ve got to also understand like they’re living in a environment where they’re working in a jail as well and God knows

Cassie (45:18)
Yes.

Bill Gasiamis (45:19)
what they’re dealing with and putting up with as well and how they’re able to personally manage it. And if everyone’s kind of dysfunctional, you wanna not

Cassie (45:27)
Mm.

Bill Gasiamis (45:28)
be there, even though

that’s where people are needed, you need to kind of do your time and get out.

Cassie (45:35)
Yeah.

Bill Gasiamis (45:36)
’cause ongoing dysfunction just becomes traumatic for everybody who’s involved, even though you’re going there to do good work, you’re coming out and then you’re not well, you’re not healthy, and it leads to illness and what’s the point of that? your website is cassiejewell.com and there’s a couple of things on there that you talk about and promote and

There’s a very cool photo of you on the home page. Like I love that photo. It’s

Cassie (46:03)
Hello, thanks.

Bill Gasiamis (46:05)
so cool. and it says Cassie Jewell is a counselor and an author exploring psychology of change, resilience, regret, and identity.

Cassie (46:14)
Mm-hmm.

Bill Gasiamis (46:15)
Change, resilience, regret, and identity. Huge.