Recovery After Stroke

She didn’t know yet that she had two arteriovenous malformations in her left frontal lobe — one discrete, one diffuse. She didn’t know that within hours she’d be helicoptered to Wellington Hospital for an emergency craniotomy, or that the following Monday a neurosurgeon named Dr. Woon would spend thirty hours trying to remove both malformations from her brain. She just knew something was wrong, and that her daughter was in the back seat, and that she couldn’t keep driving.

That moment — pulling over, self-diagnosing, refusing the urge to simply lie down and rest — may be the reason she’s alive.

An arteriovenous malformation is a tangle of abnormal blood vessels that connects arteries directly to veins, bypassing the capillary network that normally regulates blood flow. Most people with an AVM never know they have one. But when an AVM bursts in the brain, blood floods into surrounding tissue at high pressure, and the consequences are almost always severe: haemorrhagic stroke, seizures, sudden neurological deficits, and in many cases, death.

Jennifer’s first surgery controlled the bleeding. The second, five days later, was supposed to remove both malformations. It didn’t go as planned. The surgical team discovered that blood flow to the first AVM was feeding the second one, causing the brain around it to swell. Dr. Woon had to make an impossible decision in the middle of the operation: let her die, or remove a portion of healthy brain tissue along with the malformation.

He chose to keep her alive. The surgery took thirty hours. When it was finally over, he called her husband and said, “Well, you’ll be lucky if she talks.”

Jennifer has no memories of the first six weeks after her AVM burst. She was in a medically induced coma for the surgery, then in intensive care, then transferred to rehabilitation. Everything she knows about that period has been told to her by other people.

When her memory started returning, she found herself in a rehabilitation ward in Masterton, using adult nappies, unable to sit up in bed. The front of her skull had been removed and wouldn’t be replaced for months. She wore a protective helmet whenever she walked. And yet — she insists — she felt fine.

[Quote block — mid-article]

“I kept saying, ‘I’m okay, I’m fine. You guys should just take it easy around me.’ But of course, I wasn’t really fine.” — Jennifer Tomscha

The honest recognition of what had happened to her didn’t come for almost two years. It took that long for her brain to have enough capacity to think about her brain.

Most stroke survivors are told, either directly or by implication, that the first year matters most. That after twelve months, improvements slow. That after two years, you’ve plateaued.

Jennifer’s experience — and the experience of nearly every long-term survivor interviewed on this podcast — contradicts that narrative. Four years after her AVM burst, she is still discovering what recovery means. Her academic writing, once her profession as the Director of the Writing Program at NYU Shanghai, doesn’t flow the way it used to. She can’t recall songs from memory anymore, or sing the ones she used to sing. Her aphasia shows up most at night, when she’s tired. She still takes an afternoon nap most days.

But she’s also finishing a PhD. She can read as well as she ever could. She’s speaking, articulately, in a podcast interview eighty minutes long. And the parts of recovery she thought had stopped improving are, quietly, still improving.

Her advice, offered near the end of the conversation, is short and unsparing:

“You can rest, and that’s okay. You can be as slow as you want to be, and that’s also okay. But don’t give up. Just keep going — at whatever pace feels right.”

It’s a rejection of both the productivity culture that tells survivors to push harder and the clinical culture that tells them to accept their limits. Recovery, for Jennifer, isn’t a race against a deadline. It’s a long, patient process of finding out what comes back and learning to live fully with whatever doesn’t.

If Jennifer’s story resonates with you, Bill Gasiamis’s book — The Unexpected Way That A Stroke Became The Best Thing That Happened To — explores the same territory: the slow, unexpected, sometimes beautiful work of rebuilding a life after a brain event.

Get the book here

Readers who want to support the podcast and connect with the community of survivors it serves can do so at Patreon.

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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.

She self-diagnosed her own stroke while driving with her daughter. Four years on, she’s still discovering what recovery really means.

Highlights:

00:00 Introduction and Background

Transcript:

Jennifer Tomscha (00:00)

I’ll never do another surgery like that ever again.

it was really long. And I think he definitely

had made me worse. Like they had taken out.

too much of my normal brain. when he called my husband after the surgery was over,

Dr. Woon said like, well, you’ll be lucky if she talks.

he was just so discouraged from how the AVM surgery went.

when I finally talked to him on Zoom. was so you And I was like, yeah, yeah, yeah, of course I can. He was like, will you show me?

and I walked up and down the room and he was like laughing so hard at my being able to walk. He was like so enthusiastic about it.

Bill Gasiamis (00:44)

What followed was a medical emergency unlike anything I’ve heard described on this podcast and a recovery story that quietly dismantles one of the most damaging myths

in stroke survivor community. That after a certain point, the window for improvement closes. Jennifer is four years out from what happened to her. She still takes an afternoon nap every day. She still notices the edges of what her brain can and can’t do. And she is also finishing a PhD, raising two children and speaking with a clarity and warmth that will stop you in your tracks.

This is a conversation about what it actually means to play the long game and why might be the most important thing any survivor can do.

Before we get into it, if this podcast has been part of your recovery journey, I’d love for you to check out my book, The Unexpected Way That a Stroke Became the Best Thing That Happened, at recoveryafterstroke.com/book.

And a genuine thank you to everyone supporting this work on Patreon. If you wanted to support the show, you can go to patreon.com/recoveryafterstroke.

really helps me keep the conversation going. Let’s get into it.

Bill Gasiamis (02:12)

Jennifer Tomscha (02:14)

Bill Gasiamis (02:17)

Jennifer Tomscha (02:20)

Mm hmm. Yep. Yep. I’m American originally, but we moved here in 2020. So ⁓ we I’m grew up in Iowa. And then and then I after but we were living in Shanghai for us for almost seven years, my husband and I were living in Shanghai and I was teaching at New York University, Shanghai and then when COVID happened in China.

Bill Gasiamis (02:35)

Jennifer Tomscha (02:54)

Bill Gasiamis (03:11)

in China, was it just a request? Was it a directive? What was the situation?

Jennifer Tomscha (03:18)

go and I was like, I want to get out of here. So we went to New Zealand and they also had a lockdown, but it was just for a month and then everyone could wander around because the virus was not here. we just stayed and I got into this PhD program. So that’s why we’re still in New Zealand.

Bill Gasiamis (04:00)

That kind of brings us to the first question I ask most people these days is what was life like before stroke? So there was a little bit of stuff going on. was, work in China. There was a bit of, ⁓ travel from the United States to China. was children, but daily life. What, what was that like before the stroke?

Jennifer Tomscha (04:21)

go and get them. So, and then they would come home and we would do all the other stuff in parenting. And my husband at that time was working at the library. So he had, he was at the libraries from nine to five every day. So he was at work. And that’s what, that’s what we were doing. Yeah. When I had my stroke. I was busy trying to finish up this research proposal. And then, yeah.

Bill Gasiamis (05:14)

Jennifer Tomscha (05:16)

Bill Gasiamis (05:18)

Jennifer Tomscha (05:23)

hospital for those at one point and I think they didn’t know what that was and they just did an EEG. I don’t even think we had an MRI where I lived. So I didn’t really know and then that sort of passed. But I was feeling when I have a daily journal that I was writing and when I go back and read that daily journal, the whole, for a couple months ahead of time, I was like, I just feel kind of weird.

I don’t feel great. I feel like a little bit sick and I don’t know what’s wrong with me. And at that time they were allowing COVID to enter New Zealand. They were putting it in. So I was like, I think I might have COVID, but I took a bunch of tests. They were all negative. And then my stroke happened on Tuesday, but the Friday before I was so sick. And then that weekend I was really sick too. And then I got, like, I kind of felt like I woke up, I felt really nauseous. And then I felt better on Monday and Tuesday.

And Tuesday was when my stroke happened. So I think that was all, it was all, think, my body reacting to, I was probably bleeding in my head at that time or something. mm-hmm.

Bill Gasiamis (06:57)

Jennifer Tomscha (07:05)

Not super hard, I just, I don’t know what, I actually don’t know, and maybe it’s nothing to do with it. You know, maybe it’s something else in my body that I am prone to fainting. But I don’t know, I don’t really know why that, and maybe it wasn’t anything like that. But I had one day when I was 16 and I passed out three times and that did seem kind of funny. And I went to the doctor and I passed out while I was at the doctor’s office.

So they were like, there’s nothing wrong with you. So they put me to the hospital. They did the EG. stayed the night. And then they were like, there’s nothing wrong with you. So that was it. But I think if nowadays they probably would have done an MRI, maybe, and they would have seen that I had my AVM and my whole life would have been different because I wouldn’t have done all the stuff that I’ve done now. Like my mom was like, if we had known you had had an AVM, you would have gone to school.

in Sioux City, you know, or we would have done something to keep you nearby because we would be worried about you. Instead, I was just like, doing whatever I wanted to, which is good.

Bill Gasiamis (08:14)

that’s kind of good. But also I get the preventative thing. One of the, my former guests had a daughter who had an AVM and I think she was five when she passed away from a bleed in the brain because of an AVM. That’s horrific. And one of the, it’s actually worth listening to that episode and it’s worth me interrupting this right now to jump on and find that episode so that I can share it with people.

And this particular lady has made it her life’s mission to raise money, get an MRI machine and do preventative scans for people in case they have an AVM or some other undiagnosed neurological condition. I think it’s Gina. Gina Keely. OK, it’s. And her ⁓ foundation is now called the Paige

Keeley Foundation, it’s the most heartbreaking story. It’s episode 141 and I’ll have the link in the show notes and I’ll have it in the YouTube description. So for anyone listening, jump back and have a look at that. And also maybe even consider supporting the foundation because the story is heartbreaking and the efforts that this lady is going to ensure that this doesn’t happen to other people is just amazing. So.

I wanted to, I raised that because I had a, in 2011, no, no, in 2010, about 18 months before my actual AVM bled, I had a really terrible negative episode, nauseous, room spinning, like all the signs of stroke, but completely missed the, completely missed

Jennifer Tomscha (09:47)

Bill Gasiamis (09:55)

Jennifer Tomscha (09:58)

Mm.

Bill Gasiamis (10:22)

Jennifer Tomscha (10:37)

Bill Gasiamis (10:49)

Jennifer Tomscha (10:53)

Bill Gasiamis (11:14)

Jennifer Tomscha (11:25)

Bill Gasiamis (11:26)

So what was the day of the stroke like? Was it, you said you’re feeling better on that Tuesday.

Jennifer Tomscha (11:34)

I just felt like a wash of dizziness and I started losing sight, I think, in my right eye. And it’s seven kilometers from Graytown to Carterton. And right before we got into Carterton, I pulled over onto the side of the highway. I tried, so by that time I think I had lost most of the sight in my one, my right eye. And so it wasn’t very long actually. And so I tried to call my husband, he didn’t answer. And then I just called

111 and I was like, I don’t know why I was like, I think I’m having a stroke, but I don’t know why I even thought that actually. Do know what I mean? I just, was like, something is wrong with me. And so my daughter was fussing in the back and, I don’t really remember anything after that. I don’t remember the paramedics coming. I don’t remember talking to anyone. but so when they, I think the police came first and then

Then the paramedics came and they said I was nauseous, but talking a little bit. But then they moved me into the ambulance and, I started, choking and, or something, and they had to intubate me in the ambulance. And then they took me in. I was helicoptered off to Wellington hospital. So.

Bill Gasiamis (13:12)

Jennifer Tomscha (13:14)

Mm-hmm.

Mm-hmm. I don’t know. just, let’s see, I think…

I think when I was losing my vision, that was hard. I mean, I’m really lucky. There was a little ⁓ path on the side of the road right before you enter Carterton. So I pulled over there so I could still control the car. You know what I mean? I wasn’t so bad. And I could dial 111 on my phone. I could still think about those things. But it wasn’t very long after I dialed 111 and talked to those people that I’d

that my memory is gone. So I think, I mean, I have spent a lot of time trying to like go back and figure out like, what was it? What could I have done early? know, like I was really lucky I was in the car, because honestly, because if I was at home, I might’ve like laid down and taken a nap and not called anybody actually, or called Dan and half have not answered. So then I could just see myself.

Bill Gasiamis (14:14)

Jennifer Tomscha (14:22)

in that time period, but also that soul that my daughter was with me because it made me, I had this like parental responsibility that I had to, I couldn’t keep driving with her in the car. Like I just, I knew I had to do something and quickly. I feel like, I feel really lucky that that was the situation that I was in because I could see a different day where I didn’t go get the kids at that time. And I maybe would have tried to take a nap and it would have been totally different.

So you know what I mean.

Bill Gasiamis (15:19)

common thing for people to go, oh, I’m not feeling well. I think I’ll just go lay down and have a rest and see if I can just get over it, sleep through it or whatever. yeah. And then it just leads to even more and more trouble or problems. The fact that you said, I think I’m having a stroke, right? That is so cool and bizarre and amazing.

Jennifer Tomscha (15:29)

The guy was like,

why? And I was like, well, I’m losing my sight. I was like, I mean, I don’t know how it was. I was like, why do you think you’re having a stroke? I was like, I don’t know. But there was something wrong. You know what I mean.

Bill Gasiamis (15:52)

that’s such a good question for me. Why do you think I’m going to strike? I don’t know, but I just came up with it. What? That was enough though. Like that was such a response from you to say, I think I’m having a stroke. It’s very, very rare that people get there, but the fact that you got there kind of gave, gave them also like an understanding of how to attend the site and what to do.

Jennifer Tomscha (16:01)

Bill Gasiamis (16:18)

Jennifer Tomscha (16:21)

Mm-hmm.

Bill Gasiamis (16:23)

Jennifer Tomscha (16:27)

Mm-hmm.

Bill Gasiamis (16:51)

Jennifer Tomscha (16:54)

no.

Hmm.

you

Bill Gasiamis (17:21)

Jennifer Tomscha (17:30)

in the backseat, know, backwards in her car seat. And then we stopped and she was like, why are we stopping or whatever in her three and a half year old voice? And I was like, I just had to make a couple of phone, you know, I don’t know what I said to her. And then I think when the police came, she was asleep. Like she fell asleep back in the car. then, and then.

It’s just, I, I’ll, so then for the next six weeks I don’t have any memories of anything. So all, all of the information has been given to me by other people. But, so, yeah.

Bill Gasiamis (18:04)

Jennifer Tomscha (18:06)

large. They took me, so I flew in the helicopter from Masterton to Wellington and I think they, by then my sister had gotten to the hospital and they, yeah, I think they said, yeah, they did an emergency, is it craniac? Or what’s the?

Bill Gasiamis (18:25)

Jennifer Tomscha (18:26)

He, that was a Tuesday and he said, why don’t you, I was in a coma, just keep her in a medical coma. And then Monday they would do the, the, the surgery to get rid of the AVM.

Bill Gasiamis (19:05)

then that surgery happened.

Jennifer Tomscha (19:07)

and it was, had my, actually had two AVMs. One was really discreet and they could see all the endings of it. And the other one was diffuse. I don’t really understand it, but, the neurosurgeon said there was like parts of regular brain in and around the AVM. I don’t really understand how that happens, but, ⁓ so they started in the morning and they did, they got rid of the one AVM. They were taking it out.

And then something about the blood vessels that had some of they had been putting blood into that AVM. They then started feeding into the other AVM. So then that AVM made my brain sort of swell where that AVM was. And so the neurosurgeons had to decide if, mean, basically it was like, let me die.

because they couldn’t do anything about it, or they would get rid of that AVM and they would just take out the brain that was, the normal brain that was in the regular AVM. So they took, they decided not to let me die, thank goodness, and they decided to do that. so, but it was really long surgery, it was 30 hours, I think they just didn’t, yeah, it was really long. And…

And I think Dr. Woon was my neurosurgeon. And he just said, when he went and sewed my head back together, he didn’t think I was listening, but I was in the other room and I could hear him after I had my skull put back in. And he was like, I’ll never do another surgery like that ever again. it was too, it was really long. And I think he definitely thought that he had made me worse. Like they had taken out.

too much of my normal brain. when he called my husband after the surgery was over, like they didn’t call him. Dan, my husband was waiting for the whole 30 hours and they only called him one time at like 11 o’clock that night. And they were like, we’re finishing up. But then they had all this other stuff happen. So they didn’t actually call him again until noon the next day. And Dr. Woon said like, well, you’ll be lucky if she talks. Because we had to take out.

he was just so discouraged from how the AVM surgery went. And so, yeah.

Bill Gasiamis (21:24)

Jennifer Tomscha (21:27)

think that. I also think that, I mean, it’s, I mean, neurosurgeons, they’re, it’s amazing that you could, I’ve just, it’d be so weird if your job was to cut people up and go into their brains and try and fix something in that organ, which is so mysterious, do you know? Like, yeah, so.

Bill Gasiamis (21:48)

So he also is thinking in his career, he’s probably never going to come across another 30 hour surgery. Yeah. Well, only if it’s necessary to make somebody better, but yeah, we definitely want to avoid that if we can for every human on the planet and for Dr. Woon, but I just, I’m just completely in awe of these people. I bumped into my surgeon last year.

Jennifer Tomscha (21:57)

Right.

Mm-hmm.

Bill Gasiamis (22:15)

Jennifer Tomscha (22:20)

Yes.

Yeah.

Bill Gasiamis (22:44)

You’re useful. If you do that to a human, there’s no going back. And you’ve got to make that decision every single time you walk into the operating theater. And imagine his family. Like, I feel like we need to reach out to his family and say, is there anything we need to make up for? I know we had your husband for 30 hours, but like, how can we support your family now that he’s done that for my family?

Jennifer Tomscha (23:40)

Bill Gasiamis (23:40)

interesting that these people have been able to get to that level of capability.

Jennifer Tomscha (23:49)

Bill Gasiamis (23:50)

Jennifer Tomscha (23:51)

Yep. Yep, exactly. It’s just, it’s amazing. It’s just so, and I’m so grateful to him and he had another neurosurgeon working with him and yeah, it did, I mean, yeah, it’s amazing. I always think though, I’m trying to think about like, did, why, if he cut out those parts of my brain, why weren’t they, why?

I mean, I have some things I can’t do that I could do before. Like I can’t, this is so weird. I can’t recall songs very well and I can’t sing songs from memory, like at all. Like that part of my brain is done, which is fine, but I used to sing a lot. but I think because if the AVM is there when you’re in your, if it’s there when you’re in your mom’s womb, like if you’re, when you’re developing.

It’s probable that my brain was like, there’s a little issue here in this brain. We’ll move some of the stuff away from, don’t you think that would be, yeah, because I just think like, I think where my AVMs were, my brain was like, we’re gonna move, we’re not gonna put stuff by those AVMs because yeah, because your brain is really adaptable. Like that’s one of the things that I’ve been reading since I had my stroke.

Bill Gasiamis (24:59)

That makes sense, Jennifer. Because it’s… Yeah.

Jennifer Tomscha (25:18)

Bill Gasiamis (25:26)

is not right. So you imagine with blood flow not being right, then the brain’s not developing correctly in that spot anyway. And it’s just developing where there is blood flow.

Jennifer Tomscha (25:37)

So it’s still all Dr. Woon. I’m just so grateful to him and everything that he did. Because honestly, I feel like I come from the States. I don’t know that a neurosurgeon, I just don’t know how long a neurosurgeon would have, they might be like, I’m done, I can’t do this anymore. I just don’t really know. It just all depends on the doctor and who sees you and everything. So I just felt so lucky to have been here.

Bill Gasiamis (26:30)

doing a 30 hour shift on any day for anything.

Jennifer Tomscha (26:34)

Bill Gasiamis (26:39)

Yeah.

And they talk about, you know, how dangerous it is to drive when you’re off a take when you haven’t slept, when all those things. And these guys are going for 30 hours and they’re doing the most intricate, life altering surgery and it all goes perfectly well. So how wrapped was he when he realized how well it went.

Jennifer Tomscha (27:09)

And then I went to this last clinic, this ABI, this brain clinic for people who had brain injuries. And that’s when I finally talked to him on Zoom. And he was like, so can you walk? And I was like, yeah, yeah, yeah, of course I can. He was like, will you show me?

and I walked up and down the room and he was like laughing so hard at my being able to walk. He was like so enthusiastic about it.

I was, you know, I mean, we can talk about this too. was, everyone was like, when I finally have my memory back, I was in Masterton and I was using a diaper. I couldn’t walk. I couldn’t step in bed, but I remember being, actually,

⁓ I remember being like, I’m fine. I’m fine. Everyone is just fussing over me. But of course, they were right too. Do you know what I mean? But I was like, I’m okay. Everyone needs to just like, let me just relax around me. And everyone was like, everything I did, they would be like, you know, I couldn’t feed myself. And then, you know, there’s all this stuff. And I was like, I’m really okay. You guys should just.

take, like, I’m fine. I kept saying that, like, I’m okay, I’m fine. You guys are all. But of course, I wasn’t really fine, but I felt like,

Bill Gasiamis (28:36)

sounds like you weren’t physically there yet, but you were emotionally and mentally fine. Like it sounds like you were on the, you kind of knew that things were going to turn out or.

Jennifer Tomscha (28:48)

but I just didn’t really recognize that. Like I didn’t, wasn’t, I couldn’t do all the things at once. So I think I was just thinking about like, and finally at the middle of May, my mom and sister, I still had my like long hair in the back and short in the front. So my sister was gonna cut the long hair in the back. And I saw myself in a mirror and I was like, that doesn’t look very good. You know, like I wasn’t, I don’t feel like I was totally aware. I wasn’t, my brain wasn’t.

totally back in it. It’s a long time to recover and I feel like my brain only gave me, I don’t know, I felt like I couldn’t think about my own brain, maybe for like a year or something, really think about it in a second order way.

Bill Gasiamis (29:59)

Jennifer Tomscha (30:02)

Yes, I think I was like, it was like that my it was like maybe in October of the next year, October of 2023, where I was like, Oh, I can think about my brain and what it is in a way that I couldn’t. Because I don’t know, you have to go through, you just have to relearn a lot of stuff. But I didn’t like

I’m lucky, like, it didn’t affect my reading, so I could read right away. I’m not a very good writer, like, I don’t have good handwriting anyway, and my handwriting still maybe isn’t as good as it was before I had my stroke, but, yeah. I feel like, felt like, the actual healing was a longer process than I thought it was going to be, especially right when I first woke up, because I was like, I’m fine, but I wasn’t really fine, actually. Do you know what I mean?

Bill Gasiamis (30:55)

Jennifer Tomscha (31:11)

It’s true. It’s true. It’s true. Yeah. Yeah. So, yeah.

Bill Gasiamis (31:22)

like hair is a big deal and become.

Jennifer Tomscha (31:27)

I have always liked my hair and it was, I had short hair for about a year and a half maybe, you know, and I started growing out more and that was a little bit hard. I felt like that’s really vain, but I was like, man, I just did not like that short hair. Cause it’s not very, I don’t know. I just, wanted my old hair back. So I was lucky that it came back though. You know, everything, it’s not cancer. It’s a different thing. So you have a different, you know.

Bill Gasiamis (31:51)

Jennifer Tomscha (31:57)

⁓ yeah.

no.

Bill Gasiamis (32:13)

Jennifer Tomscha (32:20)

to do what they want with their hair and everything. you know, that’s something that one thing I think about my stroke is you just got to go live your life. Like you can’t and you’ve done that beautifully. You know what I mean? Like this podcast is amazing. it’s just like, you just got to go do what feels good for you at the time and what you want to do and just do it.

and stop saying no, or you know what I mean.

Bill Gasiamis (32:49)

Jennifer Tomscha (33:02)

Mm-hmm.

Great.

Bill Gasiamis (33:17)

And then in lockdown, we had two years of lockdown in Melbourne, and then I’m trying to keep that thing going again. And then there was this massive influx of work after lockdown because everyone’s going, I’ve been looking at these walls for two years. They look terrible. Let’s get them painted. They had spare money because they hadn’t spent anything for two years. And that was like, let’s do this and let’s do that. And there was this massive amount of work for about 18 months. And then that was done. It was gone.

And it’s been a steady decline since as soon as Trump opened his mouth and did something in Iran and said what he said, and he plummeted like we’ve got no work. And I’m okay to have no work because I’ve been there before and we’ve managed our affairs so that we’re okay. But I can’t employ people right now at all. That’s gone. And getting people back and starting that again is going to be extremely difficult because the curve

Jennifer Tomscha (34:27)

Mmm.

Hmm.

Bill Gasiamis (34:36)

Jennifer Tomscha (34:47)

Bill Gasiamis (35:05)

Jennifer Tomscha (35:23)

Bill Gasiamis (35:29)

Jennifer Tomscha (35:38)

Mmm.

Bill Gasiamis (35:56)

treat people better in an organization so they have less mental health issues, so they have less physical issues, so they’re sick less, so they enjoy their work, so they’re not hating their life. And now I’m going to have all the time in the world to do it. And I’m shitting myself.

That’s the biggest issue, right? So that’s a little bit of a look behind the curtain. I am loving this. This is an amazing thing. And I do remember when I first started it, I was concerned about what people would say about me. You’re going to sound dumb, Bill. You you’re not going to, you know, what authority do you have? All those kinds of things, they were coming up in my head. And then when I wrote the book, the same thing, I wrote my first book, The Unexpected Way That a Strike Became the Best Thing That Happened to Me. Everyone has said, don’t write that book. Don’t write that.

Jennifer Tomscha (36:27)

Bill Gasiamis (36:39)

Jennifer Tomscha (36:44)

⁓ yeah.

Bill Gasiamis (37:03)

Jennifer Tomscha (37:15)

you

Bill Gasiamis (37:29)

Jennifer Tomscha (37:33)

Yeah.

Mm-hmm.

Mm-hmm. Mm-hmm. Yeah.

Bill Gasiamis (37:58)

strange, re-imagining yourself and recreating yourself after stroke is a huge thing because you’re also doing it with a stroke brain. Whereas before I had no excuses, I was doing it still. Like the pattern is the same. The stroke brain part of it is an obstacle that I wish I didn’t have, but somehow this stroke brain part has made me do things I’ve never done before.

Jennifer Tomscha (38:14)

Bill Gasiamis (38:27)

You know, I was a tradie. I was like, I didn’t study. didn’t read. In my, by the time I got to the age of 37, honestly, Jennifer, I reckon I’d read maybe seven books. And they were about this criminal underworld figure in Melbourne who had this, who had this career and of being like really terrible and somehow.

He was the thing that I was interested in reading about. Like that’s the only thing that captured my imagination. Everything else, everything else I picked up from listening to podcasts or watching shows on TV and that kind of stuff. So I wanna just, I wanna make people understand that the battles that you’re fighting, I’m fighting, it’s real. Like you’re not doing it alone. Everyone’s fighting this. How do I reimagine myself?

Jennifer Tomscha (38:56)

Bill Gasiamis (39:20)

Jennifer Tomscha (39:21)

Mm-hmm.

Mm-hmm.

That’s pretty good.

That’s actually quite a bit, I feel like. It’s quite a bit, actually. Mm-hmm.

Bill Gasiamis (39:47)

And it’s like, I still don’t say I’ve authored a book. Nobody knows.

Jennifer Tomscha (39:56)

should say it. mean, I do think the what are you going to do after you have a stroke? How are you going to do it? It’s all very strange and scary, I think. And like, yeah, I, I totally get your feeling about it. And it’s just really tricky to know what is the

You know, for me, I feel like I was in middle of my PhD, so I took 22 months or 20 months off of doing the PhD just to rest. And then I went back in and it was, it is still, it was really hard. I like, wasn’t very good at figuring out how to write in the academic way.

Which was my position. I was director of the writing program at NYU Shanghai. So I was like, that was my thing. And it was very hard to figure out how to return to do the critical work of my thesis. was just, it’s just, I don’t know, my brain just couldn’t figure out how to do it right. It was really interesting. was like, the sentences I was writing weren’t as good. They probably still aren’t as good.

You know, like when I look at what I was writing before I had my stroke, which is part of my thesis, and then the stuff I wrote after my stroke, I feel like I can tell a little bit of a difference in the fluency of my writing, for sure. So, yeah. And I just, so… Yeah, I don’t know. It’s tricky. It’s tricky to figure out. But I was really lucky, actually. I think the PhD was helpful because…

I could just go at it on my own time and I could just take however much time I needed. And I, I had a deadline. but it was good to just, it was actually like a really good place to start to work my brain again, to be like, okay, I have to, I’m going to write on this author and what she thinks about character. And I’m just going to, and I have these other texts that I’m interested in and I have to figure out how I’m going to.

Represent them in my own work. And so it was really good to do all that. It was a good stepping stone for me I think actually to get back into it and to see What I could and couldn’t do very well, like I feel like I’m a really good reader. I’m a really good Critic and I’m not so good at ⁓ writing down what I think anymore as well So I’m just I really have to work on and I don’t know how you get it back like

Bill Gasiamis (42:26)

Jennifer Tomscha (42:28)

you should get a, and I still haven’t done this, you should get an academic book and you should listen to it because a lot of learning to read is listening to how sentences sound. She was like, so you should listen to an academic book and that will help you think about how those sentences work and how they’re maybe different from like, I write fiction. So fiction is one thing and then this is a different way of writing. So she said that was one thing that she thought I should do to help.

develop my proficiency in academic writing, which was really interesting. So.

Bill Gasiamis (43:25)

it’s a different approach. You know, it’s coming from the auditory, you know, system and therefore the auditory digital system. Therefore you go in and you you, you pick up nuances that you wouldn’t have known were there if you’ve never heard an academic speak or if you’ve never read an academic document in that way. So you might read it.

Jennifer Tomscha (43:28)

Yeah.

Bill Gasiamis (43:51)

Jennifer Tomscha (43:55)

No, exactly.

Mm-hmm. Mm-hmm. Exactly. So I thought that was an interesting way to think about, like, how I could get better at that thing. That was, like, a really important thing for me. That, for some reason, it did just get a little bit, I don’t know, stunted? Or I don’t know what happened, you know? Or I just haven’t been in academia as much. So you know what I mean? So, yeah.

Bill Gasiamis (44:17)

Yeah,

100%. The skill is not as refined or, or practiced as your other skills. So it’s not the thing that you’re the best at. and you’re getting better at it. The thing about it is also, may I add you’re only four years out from all the drama that you had with your brain. So there’s a lot of healing to happen that is going to improve. That’s going to get better and better. And in four or five years from now, you will have

Jennifer Tomscha (44:29)

Bill Gasiamis (44:49)

Jennifer Tomscha (45:07)

Like he wanted me to just go at it with this intensity. I don’t know. was an, cause I was like, I am going at it with my own sort of intensity, but he wanted me to be more aggressive than I wanted to or something. You know what I mean? He wanted me to be like, he wanted to see me really working at it and like sweating or doing, you know what I mean? And I was like, I don’t wanna, I don’t know.

Bill Gasiamis (45:59)

masculine.

Jennifer Tomscha (46:01)

But yeah, it’s just, don’t, yeah, so.

Bill Gasiamis (46:34)

easy for a caregiver to say that because they haven’t had a stroke. Thank God. Thank God. ⁓

Jennifer Tomscha (46:40)

I mean, I feel really bad for Dan and my mom and my sister. Like, it’s actually worse to be the caregiver in some ways because you just, you don’t go through it. So you, you don’t really know what it’s like.

Bill Gasiamis (46:55)

Jennifer Tomscha (47:11)

Mm-hmm.

Bill Gasiamis (47:19)

Jennifer Tomscha (47:33)

Bill Gasiamis (47:46)

people who don’t want to engage deeply in those types of troubles, life and all that kind of stuff. they’re great people. They’re just like, emotionally they don’t go deep, right? They love it that there’s ambiguity around like what’s wrong with me. Cause they look at me, I look right. And then they just go, everything’s fine. He looks amazing. I feel better now. And when I’m around him, I can just talk about dumb stuff.

Jennifer Tomscha (48:07)

Bill Gasiamis (48:14)

Jennifer Tomscha (48:39)

Bill Gasiamis (48:43)

Jennifer Tomscha (48:50)

Yeah, that’s true.

Bill Gasiamis (49:09)

a couple more after that to get an insight so that they’re not guessing or second guessing or think they know better, et cetera. No doubt about it. they, know, they know some things about us that they can see that we’re not doing a pattern in behavior that we’re avoiding. Perhaps they know that part and all that type of thing. But we’ll say, we’re also dealing with a messed up brain. So have a bit of a kind of a Q

Jennifer Tomscha (49:13)

Right, right.

Bill Gasiamis (49:36)

Jennifer Tomscha (49:43)

Ha Tomscha Tomscha! Yeah, yeah, yeah, yeah, yeah.

Bill Gasiamis (49:56)

Jennifer Tomscha (50:05)

Yeah, yeah, yeah. That’s funny. Yeah.

Bill Gasiamis (50:14)

wife was dragging my foot in the wheelchair. It had fallen off the, you know, the rest where your leg, your feet sit. It had fallen off and I hadn’t noticed. This is like day three or day four after brain surgery. And it was dragging underneath the footrest. And she noticed that the wheelchair wasn’t moving and she was shoving it until we realized.

Jennifer Tomscha (50:22)

Bill Gasiamis (50:40)

Jennifer Tomscha (50:44)

Mm-hmm.

Mm-hmm.

Bill Gasiamis (51:08)

Jennifer Tomscha (51:09)

I have a question for you. you, this is something that, so you think you could just, you can keep improving from your stroke. There’s not like a deadline. There’s not like a couple of years or any.

Bill Gasiamis (51:36)

Jennifer Tomscha (52:03)

Bill Gasiamis (52:04)

Jennifer Tomscha (52:08)

Hmm.

Bill Gasiamis (52:28)

Jennifer Tomscha (52:35)

Mmm.

⁓

Bill Gasiamis (52:56)

Jennifer Tomscha (53:08)

That’s amazing.

Mmm. Mm-hmm.

Bill Gasiamis (53:27)

Jennifer Tomscha (53:28)

Mm-hmm. Mm-hmm.

Bill Gasiamis (53:58)

Jennifer Tomscha (54:05)

Bill Gasiamis (54:25)

Jennifer Tomscha (54:31)

Mm, that’s interesting. Yeah, yeah. Mm-hmm.

Bill Gasiamis (54:49)

Jennifer Tomscha (54:57)

Mm-hmm.

Bill Gasiamis (55:17)

Jennifer Tomscha (55:19)

Mm-hmm.

really?

That’s amazing. Yeah, because I feel like when when you read about stroke recovery, they’re like, the first year is really important. Next couple years are important. And then after that, it’s slow going and maybe nothing, you know, they’re like, you got to get going right away. And that’s interesting. Yeah. I mean, that’s I still feel like. Like,

my brain’s still coming back to me. I maybe can’t describe the way like I feel that a little bit. Like, yeah, I can definitely feel like I’m getting better at a little better at talking about the stroke and not wanting to push it away. Or, you know, like, I was at a party a couple months ago, and there was a 16 year old girl there and she was, she had had a she had been homeschooled for something and I was like, what happened and she had had a traumatic brain injury.

And I was like, okay, so should I talk about it? And I finally, I was like, I had a stroke and I had this brain injury and it allowed us to, and I had never really told that to somebody before. And so I was like, it’s good, it’s good to share. You know what I mean? So.

Bill Gasiamis (56:46)

interview last week.

with Maggie Widom. It’s 11 years since her stroke. I had the first time I interviewed Maggie was in 2019. And experiencing Maggie in 2019 was a completely different Maggie than the one I was chatting to this time. And I say that in that by 2019, she had only been three or four years into her stroke recovery journey. But she was dealing with so many deficits because she had a brainstem stroke.

Jennifer Tomscha (57:02)

Bill Gasiamis (57:16)

Jennifer Tomscha (57:29)

yeah,

Bill Gasiamis (57:46)

Jennifer Tomscha (58:04)

Bill Gasiamis (58:14)

Jennifer Tomscha (58:29)

Mm.

Bill Gasiamis (58:44)

because of funding, because of her health, because of COVID, all those things got in the way and yet the perseverance, the persistence, the fact that she started it and it hasn’t finished yet. The last episode that we did was to bring awareness to the project so that if anyone wanted to go, who listened to the podcast, wanted to go and support the crowdfunding part of the, I think the editing or the audio or the last part of putting that

Jennifer Tomscha (58:59)

Hmm.

Bill Gasiamis (59:27)

Jennifer Tomscha (59:42)

Bill Gasiamis (59:51)

Jennifer Tomscha (1:00:06)

Yeah, yeah, yeah.

Bill Gasiamis (1:00:10)

Jennifer Tomscha (1:00:18)

Mm.

Bill Gasiamis (1:00:29)

Jennifer Tomscha (1:00:47)

Mm-hmm. That’s great. I think that’s just so powerful and important for people to hear about. Because I know sometimes, especially at the beginning, I was just stressed out and frustrated. And I had a lot of aphasia, so I had a lot of words that I

I just did say weird words that weren’t even English words, but you know what mean? I didn’t, couldn’t think of the word for the moment and it would be so frustrating and it’s just good to.

to have the long game in mind, I think would have been really helpful for me in those times to be like, I’ll get through this, it’ll be okay. And even if it’s not okay, even if I have aphasia for forever, which I still do, especially at night when I’m tired, that’s okay too. You know what I mean? Like it’s okay. It just is what it is and you can manage it. And yeah, I think that’s a really helpful way to frame it for people.

And their caregivers both, yeah.

Bill Gasiamis (1:01:45)

What’s really cool. Someone asked me on YouTube. I think that they have accessibility issues to, therapists for aphasia, that kind of stuff. Accessibility being they may not have either the funding or there might be not, might be near somebody or whatever. It just a couple of days ago and they were like, what do I do? Like, how do I start this aphasia recovery journey? Jump on YouTube.

Jennifer Tomscha (1:01:55)

Mmm.

Bill Gasiamis (1:02:08)

Jennifer Tomscha (1:02:13)

Yeah, yeah, yeah, yeah. Uh-huh. And yeah, that’s interesting. Yeah, I hadn’t thought about that. You’re totally right. Yeah. Mm-hmm. Mm-hmm.

Bill Gasiamis (1:02:21)

there are resources that now most people can access that don’t cost any extra that you can jump on and that you can do rehabilitation at home even if it’s just 20 minutes a day or one hour a week or whatever it is. if you feel like it’s gonna be okay even if it’s not okay, then that’s gonna be okay like it will.

Jennifer Tomscha (1:02:35)

Yeah, I think I I understood what you meant. Yeah.

Bill Gasiamis (1:02:47)

but it makes sense in my mind. And and you know, my book, the first one from idea to publication, took four years.

Jennifer Tomscha (1:02:51)

that’s interesting. Mm-hmm. Mm-hmm. Mm-hmm.

Bill Gasiamis (1:03:02)

know how to start a book. I got somebody to help me. had to pay them to help me to write this book. They guided me to a certain point and then we got it published. And it says it at the beginning of the book. This is not a scientific book. It’s not an academic book. This is not being written by somebody who’s studied writing or knows how to write a book. I made sure that people understand it’s just a stroke survivor.

Jennifer Tomscha (1:03:18)

You

Bill Gasiamis (1:03:29)

Jennifer Tomscha (1:03:54)

Bill Gasiamis (1:03:56)

Jennifer Tomscha (1:04:01)

Bill Gasiamis (1:04:02)

Jennifer Tomscha (1:04:13)

Mm-hmm.

Right.

Right.

Bill Gasiamis (1:04:28)

Jennifer Tomscha (1:04:29)

Mm-hmm.

Bill Gasiamis (1:04:55)

Jennifer Tomscha (1:05:03)

Bill Gasiamis (1:05:23)

Jennifer Tomscha (1:05:29)

I don’t think I can, you know, it’s just so, and I’ve been just looking at all different kinds of jobs, trying to figure out like what type of work I can do and full-time or part-time and all that stuff. yeah, it’s, I like that idea about the opportunity cost and like,

what am I doing now that maybe I should do something different or, you know, yeah, like what is it preventing me from doing something? So that’s really good. ⁓

Bill Gasiamis (1:06:17)

just, what ended up happening, why I kind of stumbled in this, I just took on the challenge when somebody said to me, um, the guy who wrote my forward is an amazing mate of mine. I met him in 20, in 2013, and he knew how unwell I was and he would just keep in touch and he just turned up at really bizarre times and would just keep in touch and

Jennifer Tomscha (1:06:39)

Bill Gasiamis (1:06:46)

Jennifer Tomscha (1:06:53)

Bill Gasiamis (1:07:11)

And I said, I don’t know. Like, why do you mean he goes, you know, YouTube and there’s podcasts and people are sharing all the information that they know, but it’s going to a global audience. And that was it. He just put the seed in my head.

And then the podcast happened. That is all he did. And I’ve just taken those kind of little bits of beautiful advice and thought, I’m not going to do it. I didn’t think I was going to do it for 10 years. I just thought, I’m going to give it a go. Let’s see what’s cool about it and what hard things I have to overcome and learn about myself to do this.

Jennifer Tomscha (1:07:57)

What did you, did you have like, did you have five people lined up to interview or how did you, no, okay.

Bill Gasiamis (1:08:13)

Jennifer Tomscha (1:08:20)

Right.

Bill Gasiamis (1:08:40)

Jennifer Tomscha (1:08:50)

How long after your, because you had three different stroke. How long after did you start the podcast?

Bill Gasiamis (1:08:55)

The podcast started in 2015 and by 2019 there wasn’t a lot of episodes, but in 2019.

Jennifer Tomscha (1:09:02)

Okay.

Bill Gasiamis (1:09:07)

Jennifer Tomscha (1:09:12)

Mm. Mm, that’s interesting. Yeah. Mm-hmm.

Bill Gasiamis (1:09:35)

Jennifer Tomscha (1:09:41)

And then after I have that number, then I can be like, is this good or what do need to change about it? And that’s what it seems like you did with this podcast. You’re like, I’m just going to try it. And then after I have like 15 or 20, then I can look at it see how can I reshape it or that’s really interesting actually. Yeah.

Bill Gasiamis (1:10:15)

got to do it wrong or not make it feel a bit weird or whatever, but just persevere through it. And then you kind of have the, actually I know what the angle should be now. You don’t get to learn what the angle is until you’ve done the other ones that you weren’t really pleased about or happy about.

Jennifer Tomscha (1:10:28)

Yeah, that’s really interesting. Yeah, that’s I mean, that’s amazing. I just remember because Dan was the one who told me about your podcast, my husband, and he was like, there’s a guy he just interviewed stroke survivors. And I was like, that’s interesting. It was after I had my stroke, obviously. But and I was like, wow, that’s a it’s like a there are tons of people who have strokes. That’s not but but I had never heard of anybody doing that. And it was it’s I mean, it’s been amazing. I listened to your podcast.

Bill Gasiamis (1:10:40)

Yeah.

Jennifer Tomscha (1:11:02)

Bill Gasiamis (1:11:11)

I, I, it’s a selfish pursuit. It’s for me. Everyone else gets the benefit because I, I do it, but, um, yeah, it’s honestly, I don’t know why I’m still doing it. Like I, I don’t know why. Like it just, cannot not do it. Like it’s so weird. I don’t have an intellectual answer. I just have it. I wake up in the morning. There’s a booking. I sit at the chair, people come on. I press record. We talk. I upload it.

Jennifer Tomscha (1:11:15)

Hmm.

Mm-hmm.

Bill Gasiamis (1:11:38)

understand it. I don’t get it. think cause it’s so automated now and people reach out to me, it’s a lot less effort. Initially I was doing Instagram outreach, just following hashtag stroke, stroke recovery, stroke awareness, that kind of thing. And then I was just reaching out to those people going any chance you want to come on the podcast. And my gosh, people wanted to come on the podcast and I just couldn’t believe that they did. But my suspicion was that there was more of us out there.

Jennifer Tomscha (1:11:48)

Bill Gasiamis (1:12:07)

Jennifer Tomscha (1:12:09)

Yeah. Mm-hmm. Mm-hmm.

you

I know, no. Because stroke is kind of, it’s not random, but it feels random or it’s like, what I think is interesting about like the hospital care that I had here in New Zealand was amazing. But it’s actually funny that we have a system in place where people will go help me because it was my brain fighting against itself. And the people were like,

we can help you. I’m just amazed that we have that system in place where I could call 111 and they would come and they would fly me to Wellington. I mean, that’s incredible. It’s just amazing. And I feel like, but I think the stroke itself is not, nah, it’s not sexy. No.

Bill Gasiamis (1:13:03)

And ⁓ I’m not, I’m not the guy to make it sexy, but if somebody out there knows how to make it sexy, please come forward. Let’s do something because we need to bring way more awareness. Cause we can feel in Melbourne, we’re sports mad. This is the sports capital of the Southern hemisphere. Almost now I’m overdoing it. At least of Australia, we can fill a stadium with a hundred thousand people.

Jennifer Tomscha (1:13:19)

Bill Gasiamis (1:13:33)

Jennifer Tomscha (1:13:37)

⁓ yeah, yeah,

Right, right.

Bill Gasiamis (1:14:00)

Jennifer Tomscha (1:14:00)

Yeah.

That’s one thing. I mean, you’re a great interviewer, but I always feel like I don’t ever leave when I listen to your podcast. I never feel discouraged, like ever. And that’s amazing because that it just because you could definitely have talks with people who had strokes where you’re complaining the whole time and you can’t get but you don’t you don’t you don’t elicit that from the people who are coming to your show, which is great.

Bill Gasiamis (1:14:42)

I want to thank you for reaching out to be on the podcast. really appreciate that. hopefully our conversation has been helpful, but I’ll, I do ask most of the people who listen is like one piece of advice, one thing that you can impart on stroke survivors that might be earlier on in the journey than you or I, like, what would you say to somebody who’s just come across this podcast and you know, they’re

Jennifer Tomscha (1:14:45)

Hmm.

Bill Gasiamis (1:15:06)

Jennifer Tomscha (1:15:07)

Like I felt like my recovery was a little bit slower than other people’s. Like it took me a little bit longer to do some of the,

be able to talk and think about my own brain just took me a little bit longer than they say it does. But that’s not, it doesn’t really matter because I got there anyway.

Yeah, thank you. was great. Thank you so much. was wonderful to talk to you.

Bill Gasiamis (1:15:43)

Bill Gasiamis (1:15:51)

essential message that recovery takes as long as it takes, that rest is legitimate and that you don’t have to give up even if the progress is one that every stroke survivor and caregiver needs to hear. If you’d like to go deeper into some of the themes in today’s episode,

I want to point out to you two earlier conversations. The first is episode 262 with Gina Keely, whose work with the Paige Keely Foundation focuses on preventative brain scans to catch AVMs before they burst. Her story is devastating and important, and it directly connects to the questions

Jennifer and I raised today about what might have been.

The second is episode 399 with long-term recovery from a brain stem stroke reflects exactly what Jennifer spoke about, that recovery continues well beyond the first year, the people who say otherwise are simply

If Jennifer’s story moved you, please share this episode with someone who needs to hear it, a survivor in year two, year four, year 10, who’s been told they’re done improving.

They’re not done improving.

If you haven’t yet picked up my book, you can find the unexpected way that a stroke became the best thing that happened at recoveryafterstroke.com/book. And to everyone who supports this podcast, thank you.

This podcast exists because you believe it should. I’m Bill Gosialmus. This has been the Recovery After Stroke Podcast. Take care of yourselves. Look after the people you love And I’ll see you next week.

The post AVM Burst in the Brain: A Recovery Story of Patience, Aphasia, and Finding Your Way Back appeared first on Recovery After Stroke.

When Maggie Whittum first appeared on the Recovery After Stroke podcast in 2019 — Episode 47 — she was a few years out from a devastating brainstem stroke, still in the thick of the hardest part of recovery. She had survived paralysis, a ventilator, brain surgery, and a complete dismantling of the life she had known. At just 33 years old, a cavernous angioma — a vascular malformation affecting approximately one in 500 people — had caused a massive hemorrhagic stroke in her brainstem on Christmas Day 2014.

Now, more than eleven years on, Maggie returns to share what brainstem stroke long-term effects actually look like. Not the version you find in a clinical brochure. The real one — chronic neuropathic pain, persistent visual disturbances, deep fatigue, and the slow, non-linear process of building a new identity when the old one is no longer available to you.

Her story is also one of unexpected creativity. Maggie is now a filmmaker, artist, and disability advocate. She is the creator of The Great Now What, a documentary film exploring stroke, disability, chronic pain, and what it means to rebuild a life after everything changes. The film is in post-production and set to premiere at film festivals in 2026.

The brainstem controls some of the most fundamental functions the body performs — breathing, swallowing, eye movement, facial sensation, and the coordination of signals between the brain and the rest of the nervous system. A stroke in this region, even a survivable one, can produce a uniquely complex set of deficits.

For Maggie, the immediate aftermath included complete left-side paralysis, inability to breathe or speak independently (requiring ventilation), and kaleidoscopic double vision with nystagmus — eyes bouncing constantly in the sockets. She underwent brain surgery and intensive rehabilitation.

Eleven years later, some of those deficits have partially resolved. Others have not. The brainstem stroke long-term effects Maggie continues to live with include:

She walks with a cane. She manages these realities every day. And she has found ways to not just cope with them, but to make them the subject of her art.

“I needed to communicate to these people better — and also my own friends and family. So I took a Barbie doll and tried to make it look like I feel.”

— Maggie Whittum

One of the most striking things Maggie has done in her recovery is find a visual language for pain that spoken language alone cannot carry. Frustrated by the difficulty of explaining neuropathic sensation to doctors, therapists, and loved ones, she created a series of modified Barbie dolls — each one representing a different aspect of how her left side feels.

Concrete Barbie has the left side encased in grey clay — the crushing heaviness. Rubber band Barbie has bands wrapped down the left side — the tightness. Vice grip Barbie has clamps all the way down — the pressure. Others are painted with fire and black — the heat and darkness of nerve pain that language cannot quite reach.

It is an act of translation. And it is also a form of advocacy — making the invisible visible for people who have never experienced it. You can find the full series on the The Great Now What Instagram page.

One of the most important things Maggie shares in this conversation is a framework that will resonate with many stroke survivors: the idea that it takes approximately five years to truly understand what a brainstem stroke has done to you.

This is not a clinical timeframe — it is an experiential one. The first two years, Maggie describes, were consumed by grief and the visceral shock of comparison: the life she had, and the life she now had. By five years, something begins to shift. A clearer picture emerges. A person begins to understand not just the deficits, but the new shape of their life.

For Maggie, that process was interrupted by her father’s death and the onset of COVID. But she describes herself now, at eleven years, as having genuine comprehension of what happened — and of what she has chosen to do with it.

“You’re gonna do like 10,000 things. And now that this has happened to you, you’re just gonna do a different 10,000 things — but it’s still your life.”

— Maggie Whittum

This reframe — borrowed from advice given to another wheelchair user early in his recovery — cuts through the grief of what was lost and opens a door to what is still possible. Not as consolation. As truth.

Maggie is the creator and producer of The Great Now What, a feature documentary about her stroke, her recovery, and what it means to rebuild a life with disability and chronic pain. The film has been in development for several years — slowed by COVID, by fatigue, by the realities of disabled filmmaking — and is now in post-production.

The film does not shy away from the difficult middle of recovery. Maggie is deliberate about this. She describes the typical narrative arc of recovery stories as “saccharine” — the fall, the rise, the triumphant ending, with the messy, decade-long middle compressed or erased. The Great Now What refuses to do that.

A crowdfunding campaign launches on May 1st, 2026 — Stroke Awareness Month in the United States — to fund post-production costs including editing, colour grading, sound mixing, and accessibility features (captions and audio description for visually impaired viewers). To follow the film’s journey and be notified when it becomes available, visit thegreatnowwhat.com.

Before her stroke, Maggie was an actor, freelance director, and producer. She had performed at the Edinburgh Fringe, produced improv and theatre internationally, and was mid-way through a Master of Fine Arts in classical acting in Washington DC when the stroke occurred.

That version of her professional life is no longer accessible in the same way. But rather than treating this as only a loss, Maggie has constructed a new creative identity — one that includes visual art, filmmaking, disability advocacy, and public storytelling about stroke and chronic illness.

“I feel like I can call myself a filmmaker now,” she says. “I really couldn’t when I started this project.” That sentence is worth sitting with. Identity after brainstem stroke does not arrive fully formed. It is built, slowly, out of what you choose to do with the time and capacity you have.

If you are navigating that process — or supporting someone who is — Bill’s book, The Unexpected Way That a Stroke Became the Best Thing That Happened, offers a framework for understanding the deeper transformation that stroke can catalyze. And if you want to be part of a community that understands what long-term recovery actually looks like, consider supporting the Recovery After Stroke Patreon.

She is not fixed. She is not the person she was before Christmas 2014. But she is someone, a filmmaker, an artist, a survivor who has chosen to make meaning out of what happened. And that, as this conversation makes clear, is its own kind of triumph.

Listen to the full episode on the Recovery After Stroke podcast, and find Maggie’s film project at thegreatnowwhat.com.

Medical Disclaimer

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 Brainstem Stroke Long-Term Effects: What 11 Years of Recovery Really Looks Like appeared first on Recovery After Stroke.

Heidi Loveridge survived a right MCA stroke at 43.

Physically, her recovery has gone well. She regained strength, learned to walk again, and is even working toward getting her driver’s license for the first time.

But emotionally, something feels off.

“I used to be so happy… and now I’m not.”

If you’ve had a stroke and feel like you’re not yourself anymore — even when everything looks “fine” on the outside — you’re not alone. This is one of the most confusing and least talked about parts of life after stroke.

In this article, you’ll learn what life after a right MCA stroke can really feel like — physically, emotionally, and mentally — and why recovery is about more than just getting your body back.

A right middle cerebral artery (MCA) stroke affects the right side of the brain, which plays a key role in:

Because of this, many stroke survivors experience:

Heidi left the hospital with left-side weakness and needed a walker and wheelchair initially. Over time, she regained much of her physical ability — but her emotional recovery has been more complex.

Physical recovery is visible.

Emotional recovery is not.

Heidi describes crying frequently, sometimes without a clear reason. She also experienced depression — something her doctors explained can be common after a right MCA stroke.

But what makes it harder is this:

She doesn’t fully know why she feels the way she does.

That uncertainty can be one of the most distressing parts of recovery.

Many stroke survivors expect:

But instead, they feel:

This is not a personal failure — it’s part of how the brain heals.

A stroke doesn’t just affect movement.

It affects identity.

Heidi describes a major personality shift. Before her stroke, she was an introvert who avoided conversations and social situations. Now, she talks to strangers easily and seeks connection.

At first, that might sound like a positive change — but it also comes with confusion.

Who am I now?

This question is common after stroke, especially when:

The brain is literally rewiring itself — and that includes the parts responsible for personality, mood, and emotional regulation.

“I used to be so happy… and now I’m not.”

From the outside, Heidi is doing well.

She can:

But internally, she still feels like something is missing.

This is where many stroke survivors feel misunderstood.

People see progress and assume everything is okay.

But recovery is not just about:

It’s also about:

And those things often take longer.

There is no single solution — but there are patterns that help.

Heidi walks regularly to manage her mood. Movement helps regulate the brain and can improve emotional well-being over time.

After her stroke, Heidi actively sought connection:

This is a major shift from her previous life — and a powerful part of her recovery.

At just 10 months post-stroke, Heidi is still early in her journey.

Recovery doesn’t follow a fixed timeline.

It continues.

You can feel:

All of these can exist together.

One of the most honest moments in Heidi’s story is this:

“I wish I knew how to make myself happy again.”

That’s something many stroke survivors quietly experience.

The goal isn’t to force happiness.

It’s to:

Sometimes that looks like:

And sometimes it simply means giving yourself time.

Heidi didn’t just survive a stroke.

She changed.

She now says something she didn’t believe before:

“I can do hard things.”

That belief led her to:

This is a different kind of recovery, one that isn’t measured in physical milestones, but in personal growth.

Life after a right MCA stroke is not just about recovery.

It’s about rebuilding a life that feels meaningful again.

If you don’t feel like yourself right now, it doesn’t mean you’re failing.

It means your brain and your identity are still healing.

And that takes time.

If you’re navigating life after stroke, you don’t have to do it alone:

https://recoveryafterstroke.com/book

Support more stories like Heidi’s and join the community:

https://patreon.com/recoveryafterstroke

Disclaimer

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.

She survived a stroke but doesn’t feel like herself. Discover why emotional recovery after stroke can be the hardest part.

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TurnTo.ai — my favourite tool for stroke recovery in 2026.

It’s an AI health sidekick that finds the latest stroke research, patient discussions, and expert insights — personalised to you, every week. Just $2 a week.

Use code Bill10 for 10% off. 

When you sign up through my link, you support the podcast at no extra cost to you.

Stroke-specific link

Patreon:

https://www.patreon.com/recoveryafterstroke

Highlights:

00:00 Life Before Stroke: A Journey of Transformation

Transcript:

Do know what you’re not happy about?

Heidi Loveridge (00:03)

Bill Gasiamis (00:09)

Was it fun?

Heidi Loveridge (00:14)

Bill Gasiamis (00:18)

I just want to say big thank you to everyone who continues to support the podcast. If you have picked up a copy of my book at recoveryafterstroke.com/book. Thank you. That support helps keep these conversations going and to the Patreon supporters. Thank you for being a part of this program and helping me create content that reaches stroke survivors all around the world. All right, let’s get into this episode with Heidi.

Bill Gasiamis (01:11)

Heidi Loveridge (01:13)

you.

Bill Gasiamis (01:14)

Heidi Loveridge (01:23)

Bill Gasiamis (01:50)

Heidi Loveridge (01:59)

Bill Gasiamis (02:05)

about what other people who you didn’t know thought about you.

Heidi Loveridge (02:09)

yes. So my stroke happened on my 20th wedding anniversary. We were actually planning on going on a big camping trip to like, actually we had a little small cabin booked at Vancouver Island’s most like in the middle of nowhere pub. So I was going to do, I was planning on doing camping and we’re going to bring, we have a little tin boat and a motor so we were going to go around the inlet up where we so.

Vancouver Island is on the west coast of Canada. It’s actually quite mild here. So it’s kind of a temperate rainforest here. And I used to love spending time outside, camping, hiking, but not like hiking where I have to carry too much heavy stuff. That’s too much for me. I’m actually getting to the point that I can imagine that I might be able to do that something again soon.

Bill Gasiamis (02:48)

Okay, were you working back then?

Heidi Loveridge (02:55)

Bill Gasiamis (03:03)

Heidi Loveridge (03:04)

Well, there’s currently three dogs in my house right now. So I have a friend that breeds Shelties, and so she lets me take care of her puppies.

Bill Gasiamis (03:15)

Heidi Loveridge (03:20)

Bill Gasiamis (03:31)

Heidi Loveridge (03:32)

Yeah. Dave!

Bill Gasiamis (03:44)

Heidi Loveridge (03:48)

Bill Gasiamis (03:51)

apologize profusely for me.

Heidi Loveridge (03:54)

I will.

Bill Gasiamis (03:57)

Heidi Loveridge (04:00)

in the garage.

Okay, I him my subject. He hasn’t read it yet, but we’ll see.

Bill Gasiamis (04:07)

Heidi Loveridge (04:09)

Bill Gasiamis (04:10)

Heidi Loveridge (04:12)

Bill Gasiamis (04:18)

Heidi Loveridge (04:19)

Bill Gasiamis (04:21)

Yeah.

⁓ So you’re a dog mama.

Heidi Loveridge (04:31)

Bill Gasiamis (04:33)

a caregiver, dog caregiver.

Heidi Loveridge (04:36)

Bill Gasiamis (04:41)

Heidi Loveridge (04:47)

yeah, I was pretty busy. Except being in total introvert, I used to love spending time at home. But now after my stroke, I do I suffered a little bit from anxiety before my stroke. But now I’m I think I’m pretty I’m pretty sure I can be called that I’m depressed now too. Which I’m working on with my doctor. But yeah.

Bill Gasiamis (05:05)

You experienced a little bit of depression.

Heidi Loveridge (05:09)

Bill Gasiamis (05:10)

Yeah, that’s cool. Do you have a sense of kind of what is behind the depression or does it just come on and you’re not really aware of why it comes on?

Heidi Loveridge (05:30)

Bill Gasiamis (05:33)

Heidi Loveridge (05:33)

with the right MCA stroke.

Bill Gasiamis (05:37)

Heidi Loveridge (05:45)

Bill Gasiamis (05:52)

Heidi Loveridge (05:55)

moving and fresh air, I’m sure.

Bill Gasiamis (06:00)

Heidi Loveridge (06:08)

Yeah,

yeah, not so much now, but I used to be like, totally obsessed.

Bill Gasiamis (06:17)

a distraction tool? was obviously, okay. I see what you mean. It’s obviously, it’s obviously also a creative pursuit. You, you end up making something and that’s useful. can wear. There you go. Right. But was it really a tool? Did it start off as a tool to be in public, but without really connecting with people?

Heidi Loveridge (06:20)

Yes, yes, yes I’ve actually made the sweater that I’m wearing right now.

⁓ a little bit, yeah. But it started because at one point I used to work so many jobs. I used to work a full-time job and then used to do bookkeeping on the side. And then I stopped bookkeeping and suddenly I had all this time so I needed to find a hobby.

Bill Gasiamis (06:55)

Heidi Loveridge (07:04)

read books now still.

Bill Gasiamis (07:10)

Heidi Loveridge (07:17)

Yes, no.

Yes, exactly.

Bill Gasiamis (07:30)

Heidi Loveridge (07:33)

But apparently, which I don’t remember this personally, but according to my medical records, apparently I was having symptoms for four days. I was having my balances off for a while before I actually, and then Dave asked me if he thought I needed to go, if I thought I needed to go to the hospital, I did not.

Bill Gasiamis (07:58)

Heidi Loveridge (08:04)

Bill Gasiamis (08:18)

Heidi Loveridge (08:25)

Bill Gasiamis (08:33)

Heidi Loveridge (08:35)

Bill Gasiamis (08:47)

Heidi Loveridge (08:49)

yeah.

Bill Gasiamis (08:51)

Heidi Loveridge (08:52)

Yeah.

Bill Gasiamis (08:57)

Heidi Loveridge (08:59)

Yeah. Yes, I do remember a time. Yeah, I remember a time when I was a kid, I was having a microdora and I like remember my arm was flinging out of nowhere by itself.

Bill Gasiamis (09:03)

Heidi Loveridge (09:12)

Bill Gasiamis (09:12)

Maybe not.

Heidi Loveridge (09:17)

Bill Gasiamis (09:19)

then contraceptive pill you mentioned, were you taking the contraceptive pill?

Heidi Loveridge (09:23)

I was. And no longer. Never again.

Bill Gasiamis (09:28)

Yeah. So did they find the underlying cause of the stroke? Did they give you a diagnosis for that?

Heidi Loveridge (09:34)

No, I was just having hypercoagulability of my blood.

Like I actually had blood clots in my lungs too.

Bill Gasiamis (09:43)

Heidi Loveridge (09:49)

Yeah, there’s no, no good, there’s no reason, just a fluke it seems like.

Bill Gasiamis (09:56)

Heidi Loveridge (10:01)

Yeah, but they can’t test for that.

Bill Gasiamis (10:07)

Heidi Loveridge (10:08)

everything. All the cancers. I definitely know that I’m cancer-free for a while.

Bill Gasiamis (10:14)

Heidi Loveridge (10:15)

did the bubble study. Nope, none of that.

Bill Gasiamis (10:24)

Heidi Loveridge (10:32)

Bill Gasiamis (10:35)

Yeah, okay, understood. So it was one of those unknown things and we’re never gonna know whether it was a contraceptive pill or not. How old were you at the time?

Heidi Loveridge (10:47)

I was 43.

Bill Gasiamis (10:51)

Heidi Loveridge (10:56)

Bill Gasiamis (11:05)

Heidi Loveridge (11:08)

Bill Gasiamis (11:12)

Now let’s get back to Heidi.

Bill Gasiamis (11:38)

Heidi Loveridge (11:40)

yeah exactly.

Bill Gasiamis (11:43)

Heidi Loveridge (11:51)

Yeah, exactly. I get to be special.

Bill Gasiamis (11:57)

they love you at the hospital? Were you one of those people that everyone got around, they wanted to see, they wanted to be a part of the consultations?

Heidi Loveridge (12:06)

Bill Gasiamis (12:10)

Heidi Loveridge (12:16)

Yeah. Yes. Yeah. Yes.

Yes, that’s what it felt like the day they found out I found out that I had two uteruses. There was one person doing the ultrasound on me and then they called in another person and I was like, something’s up.

Bill Gasiamis (12:30)

Right. Do you see what I see or is it just my double vision?

Heidi Loveridge (12:42)

Bill Gasiamis (12:43)

That’s what I was doing. ⁓

Wow. So.

Did you manage to get to the cabin or to the particular place, the destination that you guys were heading to on that day?

Heidi Loveridge (12:54)

we did not. I was in the hospital for like six weeks.

Bill Gasiamis (13:01)

Heidi Loveridge (13:06)

Like I feel like I remember the first day of the hospital. So like I don’t, I didn’t have any time that I passed out or became unconscious, I don’t think.

Which is surprising, because I used to pass out all the time. I’d knock my toenail or something and I’d pass out. I used to pass out at the dentist. But now I’m good. I don’t know, I used to panic.

Bill Gasiamis (13:25)

huh. It was an autonomic nervous system kind of response. You would just shut down.

Heidi Loveridge (13:30)

Yeah, exactly. But now I can do hard things. I actually went to the dentist for the first time in 20 years last week. No cavities in 20 years of not going to dentist.

Bill Gasiamis (13:40)

Okay, or I share your no cavities technique. Is it just brushing every day? It’s gotta be more than that.

Heidi Loveridge (13:48)

I don’t know. I just- I just must- I don’t floss, really, but I’ve just been really lucky with my teeth.

Bill Gasiamis (13:56)

Heidi Loveridge (13:59)

Yeah.

Yeah,

no cavities in my childhood either. I have one filling which was like a preventative measure, like, there’s a bit of a divot in your tooth, we should put something in there so you can’t get a cavity.

Bill Gasiamis (14:17)

Heidi Loveridge (14:27)

Bill Gasiamis (14:30)

Heidi Loveridge (14:31)

fast. Yeah, yes. So I’m

actually quite, I quite, like I told them right away, like I didn’t get a cavity in 20 years. Though I was ashamed to say that I didn’t go to the dentist though, because like, they’re very up on dental care. It’s very important for them.

Bill Gasiamis (14:42)

Yeah, it is very important for many things, dental care, believe it or not. Apparently, some dental gum diseases are a risk factor for heart conditions. yeah, gingivitis, I think it is a risk. Now, I didn’t go to the dentist regularly either. I kind of tried to avoid the dentist by floss and a brush, but I tried to avoid the dentist. They’re just uncomfortable, right? Having your mouth open and people probing in there. I get it. And some people have a lot of issues around that. So

Heidi Loveridge (14:59)

Yeah.

Yeah. Yeah.

Yeah.

Bill Gasiamis (15:19)

Heidi Loveridge (15:19)

Yeah. Yes. Yeah.

Is dental care covered in Australia?

Bill Gasiamis (15:33)

Heidi Loveridge (15:35)

here neither. But I’ve had benefits for so many years, and I just didn’t use them.

Bill Gasiamis (15:39)

Heidi Loveridge (15:40)

Mm-hmm.

Yeah, I can remember the ambulance ride.

Yeah.

No, yeah, looking through my file, they say lots of stuff like, I’m patient is calm. I was just, I just let myself get taken care of.

Bill Gasiamis (16:09)

Heidi Loveridge (16:15)

Bill Gasiamis (16:17)

Heidi Loveridge (16:22)

Bill Gasiamis (16:28)

Heidi Loveridge (16:29)

Bill Gasiamis (16:32)

I love it. love it. ⁓ yeah, that makes for a more, ⁓ at ease interaction with people.

Heidi Loveridge (16:38)

Mm-hmm.

Yeah, exactly.

Bill Gasiamis (16:48)

Heidi Loveridge (16:52)

Yes, I do not like conflict. Though, actually, I’ve changed in that way too. Because I have a neighbour who tells my dogs to shut up in his backyard. Before my stroke, used to just go straight to my heart. I would like, ugh. I’d feel so bad about that. Now, I don’t care when he says that. He can tell them to shut up as much as he wants. That’s his problem.

Bill Gasiamis (17:12)

Heidi Loveridge (17:18)

No, I’d be scared.

Bill Gasiamis (17:23)

Heidi Loveridge (17:28)

Yeah, so I just want everybody to like me.

Bill Gasiamis (17:32)

Heidi Loveridge (17:40)

Yes, I was called shy my whole childhood.

Bill Gasiamis (17:54)

Heidi Loveridge (17:56)

Bill Gasiamis (17:58)

Wow. Is that because that meant less interactions with people in the public transport system or on the way to work or wherever? ⁓ huh. Is it debilitating or is it kind of just you? It seems like it could be debilitating for some people if they’d really trying to avoid interactions with people all the time, especially in public places where you’ve got to go shopping or you’ve got to pick up supplies.

Heidi Loveridge (18:08)

Yeah, yeah, exactly. Yeah.

Yes.

Yeah.

Yes, I was okay being in public. It’s just like, because there’s no assumption that I need to talk to people when I’m in public. So now I talk to people all the time. I’m willing to tell anybody that I’ve had a stroke, because I’m looking for people like me.

Bill Gasiamis (18:39)

Yeah. Were you, did people mistake your behavior, your introvertedness or your shyness for being rude?

Heidi Loveridge (18:49)

Yeah. Yes.

Bill Gasiamis (19:08)

Heidi Loveridge (19:12)

yes, but then totally wiped after a day at work when you have to talk to everybody.

Bill Gasiamis (19:17)

Heidi Loveridge (19:21)

Bill Gasiamis (19:30)

Heidi Loveridge (19:36)

Bill Gasiamis (19:42)

And Dave’s like, who is this person always wanting to go out all the time?

Heidi Loveridge (19:56)

exactly. I put him in uncomfortable situations, like visiting people that he’d never met before. I’d be like, ⁓ my old coworker, Judy, she lives out here. Let’s see if she’ll have us over.

Bill Gasiamis (20:08)

Heidi Loveridge (20:09)

Bill Gasiamis (20:13)

Heidi Loveridge (20:19)

Yeah, exactly. And she was definitely an extrovert and she still is. And she’s always been.

Bill Gasiamis (20:27)

Heidi Loveridge (20:29)

exactly. Yeah, not everybody knows that I was faking it the whole time. Yeah.

Bill Gasiamis (20:33)

So I had a friend who passed away a few years ago who used to insist that he was an introvert. I never saw it. All I ever saw was the extroverted side of him. He would be in front of a stage, in front of audiences, speaking, talking. He’d be on podcasts. He would be at your house. He would chew your ear off in a conversation. And it was like, Grant, I don’t know. think I don’t see the…

Heidi Loveridge (20:39)

Yeah.

Mm.

Yeah.

you

Bill Gasiamis (21:05)

Heidi Loveridge (21:06)

Hmm.

So I think my biggest success since having my stroke is that now I never used to drive before my stroke. I’ve never been a driver, but now I know I can do hard stuff. So I have my learners now. Yeah, so not until I was 44.

Bill Gasiamis (21:38)

Were you afraid of getting a license?

Heidi Loveridge (21:44)

Bill Gasiamis (21:45)

Uh-huh.

which happens,

which happens, but it’s very, very rare that you would get into that type of interaction.

Heidi Loveridge (21:59)

Bill Gasiamis (22:00)

Heidi Loveridge (22:04)

Yeah, exactly. Nobody gets mad at you on the bus.

Bill Gasiamis (22:10)

Heidi Loveridge (22:11)

Bill Gasiamis (22:14)

Heidi Loveridge (22:25)

he had to pick up the slack a little bit. But I also grew up very comfortable with transit. I actually grew up in Toronto, which has like subways and like it’s a way more than transit system here in Victoria.

Bill Gasiamis (22:30)

Uh-huh.

and your

And now at 44, you have a learner’s permit and you’ve been driving for how long?

Heidi Loveridge (22:45)

like maybe since November.

Bill Gasiamis (22:53)

Heidi Loveridge (22:54)

Bill Gasiamis (23:00)

Heidi Loveridge (23:02)

Yeah.

Well, I just don’t like staying home anymore alone.

Bill Gasiamis (23:16)

Heidi Loveridge (23:18)

to take my dogs with me when I go places.

Bill Gasiamis (23:23)

Heidi Loveridge (23:28)

Yes. Actually, I have an electric bicycle that I use, but I can’t take my dog on the bike. Though we do have a dog backpack, but she’s a little bit heavy. I mean, she’s only a 20 pound sheltie, the backpack isn’t very good for that weight.

Bill Gasiamis (23:43)

Yes, I left the hospital with a slip to go pick up a wheelchair and a walker from the Red Cross.

But I think I got past the walker and the wheelchair pretty quickly.

Bill Gasiamis (24:00)

Heidi Loveridge (24:06)

left side weakness.

Bill Gasiamis (24:09)

Heidi Loveridge (24:18)

It’s not weak anymore, but it was weak when I left the hospital still.

Bill Gasiamis (24:25)

Heidi Loveridge (24:29)

Bill Gasiamis (24:34)

⁓ okay. So is it just like chicken scratchings now?

Heidi Loveridge (24:41)

Bill Gasiamis (25:07)

Yeah, does the knitting what about the knitting that that get interfered with with the hand challenge?

Heidi Loveridge (25:17)

Bill Gasiamis (25:22)

Heidi Loveridge (25:26)

I could not knit at the beginning. My hand could not do the fine motor skill at all. But I actually think I knit right handed apparently, because I can follow any pattern. So that probably helps. Like the left hand just kind of holds the needle doesn’t really do too much, you know.

Bill Gasiamis (25:30)

Okay, so you need right-handed, but you’re left-handed.

Heidi Loveridge (25:45)

yeah.

Bill Gasiamis (25:49)

Heidi Loveridge (25:51)

Interesting. I also got left-handed. Yeah.

Bill Gasiamis (25:58)

Apparently it’s very rare. And anyhow, that’s one of the things that I picked up in my time, that I was a left handed batsman, but a right handed at everything else.

Heidi Loveridge (26:05)

Thanks.

That’s not post stroke though, that was your whole life.

Bill Gasiamis (26:15)

Heidi Loveridge (26:19)

Bill Gasiamis (26:24)

Heidi Loveridge (26:27)

I was off work for a long time.

Bill Gasiamis (26:39)

Heidi Loveridge (26:40)

Bill Gasiamis (26:44)

Heidi Loveridge (26:50)

Bill Gasiamis (26:55)

Yeah. ⁓ have you heard of the pseudo bulb affect?

Heidi Loveridge (27:02)

Bill Gasiamis (27:07)

Heidi Loveridge (27:10)

Yeah.

Yes. Yes.

Bill Gasiamis (27:36)

Heidi Loveridge (27:37)

Yeah.

Yes.

Yeah.

Yes, yeah. I actually started going back to church since my stroke. It started as like, just want to spend time with people.

Bill Gasiamis (28:01)

Uh-huh.

Heidi Loveridge (28:07)

So like, sure, my family’s very excited that I’ve gone back to church. The black sheep has returned.

Bill Gasiamis (28:10)

⁓ Of course they have. She’s gone back

eventually. Yeah, that’s great. And do you go regularly or is it literally services and everything or is it just for the catch ups with people?

Heidi Loveridge (28:20)

Yeah.

I go to everything right now.

Bill Gasiamis (28:32)

Heidi Loveridge (28:35)

Yes, it’s caused a little bit of trouble with my husband because he says we stopped going together. And we did. That’s how I met him. I met him in church. And then we both stopped going at the same time.

Bill Gasiamis (28:44)

⁓ did you guys grow out of it perhaps?

Heidi Loveridge (28:49)

Bill Gasiamis (28:55)

Heidi Loveridge (28:57)

Bill Gasiamis (28:58)

Yeah. And your mental health a little. Yeah. And there was some mental health there a little bit with the, with the depression and church kind of feels that, that, that void a little bit. Sounds like church feels that space and helps you overcome that.

Heidi Loveridge (29:03)

Yeah. Yeah.

Yeah.

Yeah, exactly.

Bill Gasiamis (29:21)

Heidi Loveridge (29:24)

Yeah.

Yeah. Yeah, exactly.

Yeah.

Bill Gasiamis (29:50)

Heidi Loveridge (29:54)

Yes, I’m also part of a woman circle.

Bill Gasiamis (30:06)

Heidi Loveridge (30:08)

So we get there and you talk about things in your life that are bothering you. So right now it’s my stroke. It’s so stroke related.

Bill Gasiamis (30:17)

Heidi Loveridge (30:21)

Bill Gasiamis (30:25)

You wouldn’t probably do a zoom one now, would you?

Heidi Loveridge (30:31)

Bill Gasiamis (30:33)

So the woman’s circle, that’s brilliant. So women from the community that you didn’t know when you to the circle.

Heidi Loveridge (30:45)

No, I didn’t, we didn’t, I didn’t, there were no friends. So like there’s no baggage. Like there’s no like, can’t tell this, they know my sister. Like they don’t know my sister.

Bill Gasiamis (30:56)

Heidi Loveridge (31:04)

Bill Gasiamis (31:09)

Heidi Loveridge (31:15)

Yeah.

So, yes.

Bill Gasiamis (31:38)

Heidi Loveridge (31:39)

Yes.

It wasn’t judgmental feedback like, you’re an idiot for feeling that way.

Bill Gasiamis (31:56)

Heidi Loveridge (32:05)

Mm-hmm.

So, thank

Bill Gasiamis (32:24)

Heidi Loveridge (32:26)

Yeah.

So.

Exactly.

Yeah.

Bill Gasiamis (32:54)

Heidi Loveridge (33:02)

Bill Gasiamis (33:04)

My brother would definitely not mind if I responded in a nicer way. He definitely appreciated that. And I could find a different way to tackle my problem with what he said by just being a normal human being and communicating instead of reacting like a 13 year old younger brother.

Heidi Loveridge (33:11)

Yeah.

Yeah, exactly.

Bill Gasiamis (33:25)

Heidi Loveridge (33:29)

Yeah.

Yeah, most of time it doesn’t. No, yeah it really does.

Mm. Yeah.

Mm. Mm-hmm.

Bill Gasiamis (33:54)

the other stroke survivors listening perhaps might get here’s the idea I could do a little bit of a search and find one and if you can’t get out and about perhaps there is an online one and you are happy to do an online one that’d be a great place to start.

Heidi Loveridge (34:01)

Mm-hmm.

Yeah.

Bill Gasiamis (34:15)

Heidi Loveridge (34:19)

Yeah, it’s like, it makes you realize you’re not the only one struggling. We just all have a different kind of struggling that we’re doing.

Bill Gasiamis (34:24)

Hmm. As an introvert previously, did that exacerbate how you felt about things not connecting with a lot of other people in a deep and meaningful way like that? Perhaps did that make your feelings of I’m the only one going through this more or worse?

Heidi Loveridge (34:28)

Mmm.

Yeah.

Yes, I think I just preferred meaningful conversation as opposed to like, how’s the weather? Which I found was hard to get in large groups.

Bill Gasiamis (34:56)

Yeah.

I have a similar kind of need. I need to not be talking about the previous day’s football scores or ⁓ what the prime minister did or…

Heidi Loveridge (35:07)

something that matters you want to talk about.

Bill Gasiamis (35:13)

Heidi Loveridge (35:19)

Hmm.

Yeah, exactly.

Bill Gasiamis (35:43)

Heidi Loveridge (35:48)

Exactly.

Spirit true.

Bill Gasiamis (36:04)

Heidi Loveridge (36:15)

Like, I’d lost my desire to cook. So fortunately, a friend from my woman’s circle, knew a guy that made frozen meals. And that was amazing. And I filled up my freezer.

But like, people feeding me with them made me so happy. Like, thank you. I actually lost 20 pounds since that stroke.

Bill Gasiamis (36:37)

Heidi Loveridge (36:41)

Yeah,

yeah exactly. I mean I guess hospital food is notoriously not that good. So I don’t know if that’s what started it.

Bill Gasiamis (36:52)

you couldn’t even find a… Were you able to cook for yourself or?

Heidi Loveridge (36:59)

yeah. In occupational therapy at the hospital, that was one my things. said, I need to cook something. So I made spaghetti sauce and pasta in the hospital.

But of course I wasn’t hungry at the time, so I didn’t eat it.

Bill Gasiamis (37:09)

yeah, but you made it.

Heidi Loveridge (37:12)

Bill Gasiamis (37:13)

Heidi Loveridge (37:18)

Bill Gasiamis (37:20)

Heidi Loveridge (37:24)

Yeah, he

had to step up a little bit more. But actually I’m a little bit transitioning back to the Heidi that makes dinner.

Bill Gasiamis (37:40)

Heidi Loveridge (37:42)

of my way back a little bit. Yeah.

Bill Gasiamis (37:46)

Heidi Loveridge (37:51)

Yeah, I hope so.

I used to be so happy though with my stroke and I’m not happy anymore.

Bill Gasiamis (37:56)

You’re not happy.

Do know what you’re not happy about?

Heidi Loveridge (38:04)

Bill Gasiamis (38:10)

Was it fun?

Heidi Loveridge (38:15)

And actually, it’s what.

Bill Gasiamis (38:19)

Unhappy.

Heidi Loveridge (38:21)

Bill Gasiamis (38:27)

high achiever?

Heidi Loveridge (38:30)

Bill Gasiamis (38:31)

Heidi Loveridge (38:37)

Bill Gasiamis (38:40)

Heidi Loveridge (38:43)

Bill Gasiamis (38:50)

Heidi Loveridge (38:52)

Yeah. Yeah.

Yes, actually, listen, there’s a lady that does fat like those fashion podcasts. Can’t remember her name is anyways, but that was how like she said, if something is claiming to be handmade, you need to able to find a mistake in it. Or else they’re pulling you pulling one over your eyes.

Bill Gasiamis (39:18)

Heidi Loveridge (39:19)

Bill Gasiamis (39:19)

but not being able to be a good cross-country skier, that sucks.

yeah, because in where I live in Victoria, we have very moderate weather, so like we don’t really get snow. So at Christmas time, I was visiting some family in the middle of the province, like in a place called Vernon, and there’s a ski hill there called Silver Star Mountain. And so there was snow and I was like, I wanted to be able to enjoy the snow.

but I don’t want it to snow here.

Bill Gasiamis (39:49)

you… No, I get it. I don’t enjoy snow either. I’d rather it was up in the mountains far, far away from me too.

Heidi Loveridge (39:56)

Bill Gasiamis (39:59)

Heidi Loveridge (40:06)

Bill Gasiamis (40:10)

Heidi Loveridge (40:18)

Yeah. Yeah. Thanks.

Nice. Yeah.

Bill Gasiamis (40:39)

Wales, which is a few thousand kilometers away, it’s about a thousand kilometers away, that ⁓ they’ve got some amazing snow fields up there and people do go there, but they’re not, it’s not Canada, it’s not Japan. They’re not like that level, but they’ll do for a good local ⁓ snow trip. They do get full, people do go, they quite enjoy it, but I wouldn’t.

Heidi Loveridge (40:50)

No. Yeah.

Yes, there’s one kind of big ski hill on Vancouver Island. It’s called Mount Washington. It’s about three hours away. But I’ve never been a big skier. I grew up in the city where skiing wasn’t… Ontario’s not known for having skis. I mean there are some, but they’re not big.

Bill Gasiamis (41:12)

Okay.

So are you a good skier?

Heidi Loveridge (41:23)

Bill Gasiamis (41:25)

Heidi Loveridge (41:28)

Yeah, because I still must be a little bit weak still on my left side obviously.

Bill Gasiamis (41:41)

Heidi Loveridge (41:46)

Yes, exactly.

Bill Gasiamis (41:53)

Heidi Loveridge (41:58)

Bill Gasiamis (42:02)

Heidi Loveridge (42:08)

Bill Gasiamis (42:10)

Yeah, interesting. Is that an acceptance thing, perhaps?

Heidi Loveridge (42:15)

yeah.

I just want to be able to live my life like a, like feel normal again.

Bill Gasiamis (42:23)

Heidi Loveridge (42:26)

Yeah.

Yes, I actually went for a quite a large bike ride last weekend and I was so, I was really tired by the end. I was like hunching over like even just like, I mean it was electric bike, right? So I didn’t have to like power it myself, but just like the strength required to like keep going straight. Totally tired me out.

Bill Gasiamis (42:54)

I

haven’t, I have an air bike. remember when I first got it was for exactly that reason. So I can keep riding my bike and not get tired riding it and then being able to get home. Cause what I used to do was on the old bike, I would go to my destination, which might be 10 kilometers away into the city. And then getting back was a real challenge. So, ⁓ had had the

Heidi Loveridge (43:04)

Mm.

Yes.

Yeah.

Bill Gasiamis (43:26)

Heidi Loveridge (43:37)

Thanks.

Yeah.

Bill Gasiamis (43:53)

of the day, it wouldn’t be an issue. So it does take a bit of time, similar to how you’re getting back to cooking. It does take a little bit of time. Even though my weakness is still there, I still have that ability to go and do those things that were physically more challenging.

Heidi Loveridge (43:59)

Yeah.

Bill Gasiamis (44:10)

Heidi Loveridge (44:15)

Yeah. Yeah.

Yeah.

Bill Gasiamis (44:40)

Heidi Loveridge (44:52)

Bill Gasiamis (44:56)

Heidi Loveridge (44:59)

Yeah.

Bill Gasiamis (45:05)

Heidi Loveridge (45:09)

Bill Gasiamis (45:12)

Heidi Loveridge (45:15)

Mmm

Bill Gasiamis (45:22)

Heidi Loveridge (45:27)

Yeah.

Yeah, and like when I left the hospital, nobody would tell me that I was going to be okay. Because like, you can always have another stroke. I mean I always could have had a stroke before I even had one. I just said no, I needed to be nervous.

Bill Gasiamis (45:45)

But now you know you’ve had one so it might happen again

Heidi Loveridge (45:52)

Bill Gasiamis (45:54)

Heidi Loveridge (45:56)

My neurologist said do not get pregnant and do not go off your blood thinners.

Bill Gasiamis (46:02)

Heidi Loveridge (46:06)

Bill Gasiamis (46:14)

Okay, so now he would like you to avoid that if you can.

Heidi Loveridge (46:20)

yeah we don’t want to add anything to the weird reason why my blood clots started clotting anyway.

Bill Gasiamis (46:26)

Heidi Loveridge (46:35)

Bill Gasiamis (46:37)

Heidi Loveridge (46:48)

Bill Gasiamis (46:49)

Have you ever traveled the outside of Canada?

Heidi Loveridge (46:53)

Yes, I went to England to visit my sister once. And I loved it in England. There was so much history and so much old stuff. I thought it was so marvelous. And public transportation is amazing in England.

Bill Gasiamis (47:04)

Yeah, apparently you could get that the tube.

Heidi Loveridge (47:09)

for transit? Like I love transit.

Bill Gasiamis (47:12)

So not only did you not drive, you worked for the organization that was the alternative to driving.

Heidi Loveridge (47:18)

yeah, exactly.

Bill Gasiamis (47:21)

Heidi Loveridge (47:25)

Yeah. And also, there’s so many, like walking there is amazing. There’s so many places to walk. Like there’s paths everywhere.

Bill Gasiamis (47:38)

So it’s a very livable city.

Heidi Loveridge (47:39)

Yes. The country is livable, I find, for that reason.

Bill Gasiamis (47:46)

Heidi Loveridge (47:55)

Yes. I just realized, like, you know, could die at any moment.

Bill Gasiamis (48:02)

Heidi Loveridge (48:15)

Bill Gasiamis (48:19)

Heidi Loveridge (48:23)

exactly. I definitely want to travel more now.

Bill Gasiamis (48:28)

Does it sound like you do?

Heidi Loveridge (48:39)

Bill Gasiamis (48:43)

Heidi Loveridge (48:44)

Bill Gasiamis (48:45)

Heidi Loveridge (48:47)

Bill Gasiamis (48:49)

Heidi Loveridge (48:54)

He’s 48.

Bill Gasiamis (49:03)

Heidi Loveridge (49:07)

Yeah, with the changes, but he had to live with the, like, embrace the fact that I might be disabled for rest of my life.

Bill Gasiamis (49:22)

Heidi Loveridge (49:24)

Bill Gasiamis (49:29)

Good on you. You are a high achiever.

And why did he say that? It’s just simply because of the lack of damage that occurs there or

Heidi Loveridge (49:38)

Bill Gasiamis (49:44)

Heidi Loveridge (49:55)

yeah, but it was considered a major stroke when I was at the hospital. I actually had it actually had a little bit of hemorrhagic components so I did have bleeding in my brain too.

Bill Gasiamis (50:06)

Heidi Loveridge (50:09)

Bill Gasiamis (50:11)

Heidi Loveridge (50:14)

Bill Gasiamis (50:15)

Heidi Loveridge (50:17)

Bill Gasiamis (50:20)

Heidi Loveridge (50:23)

Bill Gasiamis (50:31)

a filter. What did the filter do? What was its role?

Heidi Loveridge (50:34)

It was to collect any blood clots to prevent them from entering my brain.

Bill Gasiamis (50:40)

Heidi Loveridge (50:44)

Bill Gasiamis (50:47)

How long was that in for?

Heidi Loveridge (50:57)

Bill Gasiamis (50:59)

Heidi Loveridge (51:03)

Bill Gasiamis (51:07)

Heidi Loveridge (51:08)

Bill Gasiamis (51:10)

Heidi Loveridge (51:11)

Bill Gasiamis (51:12)

Heidi Loveridge (51:13)

IVF filter.

Bill Gasiamis (51:22)

That’s fascinating. And it came out in a week and then you were able to then go on blood thinners.

Heidi Loveridge (51:28)

exactly. Once the bleeds are to stabilize in my brain.

Bill Gasiamis (51:34)

Heidi Loveridge (51:35)

Bill Gasiamis (51:36)

Heidi Loveridge (51:40)

Yeah. Yeah.

⁓

Thank

Yeah.

Bill Gasiamis (52:05)

Heidi Loveridge (52:10)

Yeah.

Bill Gasiamis (52:33)

Heidi Loveridge (52:36)

continue forever. That gives me hope that one day I can be happier again.

Bill Gasiamis (52:39)

I absolutely believe you could be happier again. And I feel like ⁓ with incremental improvements, one thing that might continue to incrementally also improve is your happiness level. And the depression will perhaps start to find a way to abating now and then decreasing in how it impacts your life. And then the happiness sort of moving into that space and increasing.

Heidi Loveridge (52:52)

Mm-hmm. Yeah, I hope so.

Yeah.

Yes. ⁓

Bill Gasiamis (53:13)

Heidi Loveridge (53:15)

Yes, I can’t wait till happiness is more common.

I actually went to something called red light therapy the other day.

Bill Gasiamis (53:29)

Tell me about that, yeah.

Heidi Loveridge (53:35)

Bill Gasiamis (53:40)

Yes.

Yes. How long does it?

Absolutely, there’s been studies and how long does it last the session?

Heidi Loveridge (53:53)

Bill Gasiamis (53:55)

Heidi Loveridge (54:00)

Bill Gasiamis (54:03)

Heidi Loveridge (54:06)

I didn’t actually.

Bill Gasiamis (54:14)

Heidi Loveridge (54:16)

Yep.

I didn’t notice anything, but it’s actually not cheap. So like they wanted to sell me $800 for 12 sessions.

Bill Gasiamis (54:31)

Heidi Loveridge (54:32)

Bill Gasiamis (54:40)

Heidi Loveridge (54:46)

Bill Gasiamis (54:48)

There’s no needle.

Heidi Loveridge (54:53)

Bill Gasiamis (54:56)

Okay, I’m gonna have to look into that as well.

Heidi Loveridge (55:01)

Bill Gasiamis (55:07)

Heidi Loveridge (55:10)

Yeah.

Mm-hmm.

Hmm

Bill Gasiamis (55:32)

Heidi Loveridge (55:32)

Yeah.

Bill Gasiamis (56:01)

So it’s acupuncture feels like that.

Heidi Loveridge (56:19)

Bill Gasiamis (56:35)

that’s not rare. Unfortunately, that happens.

Heidi Loveridge (56:41)

Yes, of course she was so disappointed. She’s like I took care of my health my whole life and then this guy does this to me

Bill Gasiamis (56:49)

Heidi Loveridge (56:57)

Yeah, hey boss.

Yeah.

Bill Gasiamis (57:17)

Heidi Loveridge (57:24)

Hmm. Hmm. Yeah.

Bill Gasiamis (57:43)

I eventually went to the hospital, they found the bleeding in my brain. Now he didn’t cause that, but he was the one that was the first sort of port of call for me. Cause I thought I had done something bending over.

Heidi Loveridge (57:48)

Yeah.

Bill Gasiamis (57:58)

Heidi Loveridge (58:08)

Yeah,

yes because everybody knows that stroke is a big deal.

Bill Gasiamis (58:29)

Heidi Loveridge (58:31)

Bill Gasiamis (58:35)

Heidi Loveridge (58:46)

Exactly.

Bill Gasiamis (58:52)

Heidi Loveridge (58:57)

Well, I wanted to give other people hope.

that maybe they can be okay too.

Bill Gasiamis (59:09)

Heidi Loveridge (59:11)

Yeah, exactly.

Yeah.

Mm. Yeah.

I’m going to to

Bill Gasiamis (59:38)

Heidi Loveridge (59:40)

Bill Gasiamis (59:44)

Heidi Loveridge (59:44)

Yeah.

Yeah.

I guess life, people say life isn’t supposed to be easy, but… If I say well wasn’t supposed to be this hard, yeah.

Bill Gasiamis (59:58)

Yeah, did you feel like it was easy beforehand compared to now?

Heidi Loveridge (1:00:04)

And I was just easily happy before too.

Bill Gasiamis (1:00:09)

Heidi Loveridge (1:00:20)

Bill Gasiamis (1:00:23)

Heidi Loveridge (1:00:30)

I wish I knew how to get neuroplasticity to make me happy.

Bill Gasiamis (1:00:36)

Heidi Loveridge (1:00:40)

Yes, yeah,

like fake it till I make it.

Bill Gasiamis (1:00:55)

Heidi Loveridge (1:00:58)

Bill Gasiamis (1:01:04)

Yeah, maybe. I don’t know. It could be the hack, your hack, you know, you just pretend that you’re happy. Not. I don’t want to say that in the most. I don’t want to be insensitive when I say that. And I’m not saying to do that as a way to make other people think you’re happy. I’m saying to act as if you are happy so that you can potentially maybe perhaps. ⁓ Yeah.

Heidi Loveridge (1:01:20)

Yeah, I know.

Yeah, feel actual happiness. ⁓

Bill Gasiamis (1:01:32)

occurs so that they stick right but also maybe you can imagine yourself being happy in a meditation because imagining yourself also lights up those neural pathways.

Heidi Loveridge (1:01:39)

And, yeah.

Yeah.

Yes, exactly like you said you were imagining yourself walking before you could walk. And it lights up the same areas. Thinking is the same as actually doing.

Bill Gasiamis (1:01:54)

It does. And I felt like I was.

It is, yeah. And there was a study recently that, ⁓ my gosh, I wish I now I just remembered, I don’t know if I’ve saved that information. There was a study recently ⁓ that revealed that even thinking a particular way about yourself. Activates ⁓ muscles.

Heidi Loveridge (1:02:20)

Bill Gasiamis (1:02:26)

Heidi Loveridge (1:02:27)

Yeah.

Thank you.

you

Bill Gasiamis (1:02:56)

Heidi Loveridge (1:02:58)

Yeah. Yeah, it doesn’t end there. Yeah.

Thank you.

Yeah.

Bill Gasiamis (1:03:25)

Heidi Loveridge (1:03:27)

Mm-hmm.

Yeah.

⁓

yes.

Bill Gasiamis (1:03:54)

it and overcome it because a lot of people can overcome it.

Heidi Loveridge (1:04:00)

Bill Gasiamis (1:04:05)

and have they been helpful for you?

Heidi Loveridge (1:04:11)

Bill Gasiamis (1:04:12)

huh,

Heidi Loveridge (1:04:20)

this week.

Bill Gasiamis (1:04:23)

Heidi Loveridge (1:04:24)

Bill Gasiamis (1:04:26)

Heidi Loveridge (1:04:27)

But actually, I did hear somewhere that sertraline, which is what I’m on, it actually increases neuroplasticity in our brain.

Bill Gasiamis (1:04:28)

It does.

Heidi Loveridge (1:04:36)

Bill Gasiamis (1:04:42)

Heidi Loveridge (1:04:43)

Bill Gasiamis (1:04:44)

Heidi Loveridge (1:04:49)

Bill Gasiamis (1:04:52)

Yeah. And do you, are you neurodivergent?

Heidi Loveridge (1:04:57)

Bill Gasiamis (1:05:06)

Yeah. And other than neurodivergent, there was no diagnosis. They didn’t say on the spectrum of autism or anything like that. Yeah. Okay. One comment, one comment made you stand out. my gosh. Heidi might be neurodivergent as well. Well, I know a lot of people who in later life, like I’m in my fifties, I’ll be 50.

Heidi Loveridge (1:05:11)

But I’m interested, I wonder what I said.

Yeah.

Thanks.

Bill Gasiamis (1:05:35)

who have kind of said to me, know that all the information out about ADHD now or all these things I’ve been reading in a cheese that sounds like me or gosh, that sounds like me. My whole generation went through teenage years and all that kind of stuff being labeled as cheeky as this as that as whatever. ⁓ We didn’t have diagnosis. Yeah, we didn’t have diagnosis. We just had labels. ⁓

Heidi Loveridge (1:05:44)

Yeah, like troublemaker and stuff. Yeah.

Bye.

Bill Gasiamis (1:06:05)

he’s a good kid, but card he could be crazy or, you know, he’s a good kid, but he’ll never see, he never settles down. He’s always off with the fairies, you know, like you hear all these things. And now in our fifties, everyone’s going, ⁓ yeah, that sounds like me. It’s kind of normalized how they feel about themselves that this is not a label. It’s just the way my brain is different. It works in a different way. And, ⁓ I got to my fifties. I was able to find a way to manage.

Heidi Loveridge (1:06:11)

Yeah.

Yeah.

Bill Gasiamis (1:06:32)

Heidi Loveridge (1:06:37)

You had to go the long way.

Bill Gasiamis (1:06:51)

Heidi Loveridge (1:07:02)

Mm-hmm.

Yeah.

Bill Gasiamis (1:07:19)

Heidi Loveridge (1:07:22)

That doesn’t work for you anymore, Or it never worked for you, and it was never going to work. You weren’t doing it wrong. It just wasn’t going to work for you.

Bill Gasiamis (1:07:34)

Yeah, it was just that you were put into the wrong place and things, ⁓ and nobody knew, nobody knew any better. But now that they know, and now that you know, you know, you can manage, you can find the way around it. And that’s what a lot of, ⁓ 50 year olds kind of seem to be telling me these days. They all seem to be going, ⁓ my gosh, this fits, this fits, this fits. I’m like that. And I was like, dude, I knew you were like that because I’ve always known you to be this way. ⁓

Heidi Loveridge (1:07:41)

Mm.

Mm-hmm. Yeah, exactly.

Bill Gasiamis (1:08:06)

what made me love you. Like it’s why I hung out with you. I have a friend of mine who was, who was so ADHD that he was only fun to be around because we were always doing something fun and wild and crazy that I wouldn’t do on my own that I wasn’t allowed to do as a kid. But when I was with this particular person, boy, life was interesting, but it did interfere with his life later. It became

Heidi Loveridge (1:08:10)

Yeah.

Mm-hmm.

Bill Gasiamis (1:08:34)

way around all of the challenges and kind of finding good solutions that he’s implemented on his own to not be impacted by this particular.

Heidi Loveridge (1:08:45)

Yes. Yeah.

Bill Gasiamis (1:08:55)

to Australia in the sixties. They weren’t educated. So they couldn’t help him other than try and rein him in when he was on his, ⁓ when he was, you know, just doing what he was doing though. They couldn’t do anything else, but they did their best. And I think they did a great job personally.

Heidi Loveridge (1:09:03)

Yeah.

Yeah.

Bill Gasiamis (1:09:19)

Heidi Loveridge (1:09:22)

Bill Gasiamis (1:09:24)

Heidi Loveridge (1:09:36)

all we can do is the best that we can with the knowledge we have at the time.

Bill Gasiamis (1:09:41)

Heidi Loveridge (1:09:52)

Exactly.

Bill Gasiamis (1:10:03)

Heidi Loveridge (1:10:05)

I want to say time. But I hated hearing that.

Yeah, you need to hone in your patience. And be willing to put in some effort. It’s going to be hard, but you can do it. You can do hard things. I have a sticker on the mirror and my bedroom now that says, you can do hard things. Hard shit, it says actually.

Bill Gasiamis (1:10:28)

That’s beautiful. And on that note, thank you so much for reaching out and joining me on the podcast.

Heidi Loveridge (1:10:38)

Bill Gasiamis (1:10:41)

by going to recoveryafterstroke.com/book.

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Every one of those actions helps more stroke survivors find these conversations and feel less alone. And as always, remember you can do hard things.

The post Life After Right MCA Stroke: Why You May Not Feel Like Yourself After Stroke appeared first on Recovery After Stroke.

Ty Hawkins was taking engagement photos with his wife the same day he was admitted to the ICU.

That sentence alone captures something essential about brainstem stroke, and about the particular cruelty of its long-term effects. On the outside, Ty looked like a young man in love, celebrating a milestone. On the inside, his vision was blurring, his balance was failing, and one side of his face had begun to droop. By nightfall, he was in the hospital being told they had found a mass on his brain.

That was June 2019. Ty was in his mid-twenties, working in sales at Verizon, playing competitive basketball, and building a life with the woman he was about to marry. The stroke caused by a bleed from a cavernous malformation in his brainstem carried a 25% survival rate. Of those who survived, only 10% made a significant recovery.

Ty is now approaching year seven. He returned to work. He speaks publicly. He shares his story with a global audience that finds him through social media and reaches out to tell him he helped them keep going.

And every single day, he still wakes up managing deficits that most people around him cannot see.

The brainstem is not a dramatic structure in the way the cortex is. It doesn’t govern language, memory, or personality in ways that are immediately visible to an observer. What it governs is more fundamental: breathing, heart rate, digestion, balance, coordination, and the relay of sensory signals between the brain and the body.

When a bleed occurs in the brainstem, as it did for Ty through a cavernous malformation, a cluster of abnormally formed blood vessels, the damage disrupts those foundational systems. The effects can be wide-ranging, deeply personal, and stubbornly persistent. They can also be almost entirely invisible to anyone who isn’t living inside that body.

For Ty, the long-term effects of his brainstem stroke include ataxia, double vision, gastroparesis, CRPS, and left-sided numbness and weakness. None of these are visible when he walks into a room. All of them shape his daily experience in ways that most people, including many in the medical system, never fully appreciate.

Of all the long-term effects Ty lives with, gastroparesis is perhaps the least discussed in stroke recovery conversations and one of the most disruptive to daily life.

Gastroparesis is a condition in which the stomach empties too slowly or incompletely, caused by disrupted communication between the brain and the vagus nerve. For Ty, this means the digestive signals that most people take for granted, hunger, fullness, and discomfort, are unreliable. He can eat three bites and feel as though he has finished a six-course meal. He can go hours without a hunger signal and needs to eat by clock rather than by sensation. When his nervous system is overwhelmed, his digestive system slows or stalls entirely.

Gastroparesis after stroke is not a fringe experience. The brainstem governs the vagus nerve, which in turn governs gut motility. A brainstem stroke can interrupt that pathway in ways that create persistent digestive dysfunction, yet it rarely features in the standard conversations about stroke recovery. Survivors can spend years not understanding why their digestion is erratic, not connecting it back to the stroke, and not receiving targeted support.

Ty found that movement and routine helped regulate his system. A morning sauna, regular exercise, and starting the day with warm tea and light fruit rather than a heavy meal gave his digestive system conditions in which it could function more predictably. These are not medical solutions, they are adaptive strategies built through seven years of learning his own body.

“My daily pain level is a four or five. Someone not used to chronic pain would call it an eight or a nine.” — Ty Hawkins

Complex Regional Pain Syndrome (CRPS) was misdiagnosed in Ty for several years as neuropathy. It presents as the brain becoming stuck in a fight-or-flight pain loop, sending persistent, amplified pain signals in response to stimuli that should not be painful at all. For Ty, this means clothing fabric can register as pain. Cold bed sheets can spike his discomfort through the roof. Water on his skin can hurt.

Ataxia compounds this by disrupting muscle coordination when his nervous system becomes overwhelmed. His gait changes. His shoulder shakes when lifting overhead. Coordination that was once automatic, honed through years of competitive basketball, becomes unreliable when fatigue, overstimulation, or stress tips his nervous system past a threshold.

Both conditions are neurological in origin. Both are invisible to the outside observer. Both require constant, conscious management.

What gave Ty the internal architecture to manage all of this? He credits his coaches.

Years of athletic training being pushed past comfort, being held to a standard of effort regardless of natural talent, learning that showing up and doing the work was non-negotiable, built in Ty a psychological framework that translated directly into rehabilitation. In the inpatient facility, he was wheeling himself to therapy sessions before the nurses came to collect him. After the first week, they stopped coming. They knew he would already be there.

As the doctors noted during his rehabilitation: he was recovering faster than expected, and they attributed it directly to his athletic background. Not his talent. His work ethic.

Perhaps the most underappreciated long-term effect of Ty’s brainstem stroke is the one least visible of all: the emotional toll of presenting as healthy while carrying a daily invisible burden.

For years, Ty’s type-A, athletic identity kept him moving forward, but it also kept him from fully acknowledging what he was carrying. It took until years three or four before he genuinely engaged with psychotherapy. Once he did, the progress he experienced was significant. He now starts every Monday with a therapy session.

The shift that mattered most was learning to honour how he actually felt rather than how he wanted to feel. For male survivors in particular, the cultural conditioning to tough it out is deeply ingrained and actively harmful in the context of long-term stroke recovery. Emotional suppression does not make the load lighter. It makes it invisible to everyone, including the person carrying it.

Ty’s most direct message to survivors is straightforward: don’t limit your recovery to the first year. The brain does not set a deadline on neuroplasticity. He is approaching year seven and still noticing improvements.

The triumph of this story is not that Ty is symptom-free. The triumph is that he has built a life of genuine meaning and contribution around an ongoing physical reality without pretending that reality doesn’t exist. He’s reached people on every continent with a message that is simple, honest, and badly needed:

You can survive the statistics. You can carry the hidden weight. And you can keep getting better years after everyone else assumes the story is over.

If you are navigating your own stroke recovery early or years in, Bill’s book is a practical and honest companion for the journey: recoveryafterstroke.com/book

And if the Recovery After Stroke community has been part of your path, consider supporting the show on Patreon: 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 survived a 25% chance brainstem stroke. Nearly 7 years on, Ty Hawkins reveals the hidden deficits that never made the headlines until now.

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Highlights:

00:00 Introduction: Long-Term Effects of Brainstem Stroke

Transcript:

immediately taken to the

for a CAT scan and chest x-rays.

Bill Gasiamis (00:30)

looks finished to everyone else, but you know the real story. You’re still managing things every single day that nobody around you can see. If that’s you, this episode is going to hit home. My guest today is Ty Hawkins. Ty had a brainstem stroke in June, 2019.

caused by a cavernous malformation, a bleed that carries a 25 % survival rate. He made it, he went back to work, he plays basketball, he looks great, and he is still nearly seven years later managing gastroparesis, CRPS, ataxia, and daily chronic pain that he rates at four or five, which he says most people would call an eight or nine. This is a triumphant story, not because every deficit is gone,

but because Ty built a life of purpose and meaning around the ones that stayed. We’ll get into all of that in just a moment. Now turn2.ai is your AI health sidekick that keeps you up to date with personalized stroke recovery information each week. There are literally over 800 new things published every week on stroke. Turn2 searches everything new from the past week and sends you what’s most relevant, research, patient discussions.

expert comments, trials and events.

You can try for free and get 10 % off by scanning the QR code on the screen or clicking the link in the description below. And if you haven’t picked up a copy of my book yet, it’s available now at recoveryafterstroke.com/book.

And now let’s get into the conversation Ty.

Bill Gasiamis (02:13)

Ty Hawkins (02:15)

Bill Gasiamis (02:17)

Ty Hawkins (02:30)

Bill Gasiamis (02:42)

Ty Hawkins (02:47)

Bill Gasiamis (03:01)

Ty Hawkins (03:21)

playing basketball because I played in college. So I was trying to, you know, ⁓ still keep up with the athletic side of me while getting my career off the ground.

Bill Gasiamis (04:01)

Ty Hawkins (04:05)

Bill Gasiamis (04:21)

Ty Hawkins (04:40)

and it started to move up my leg and eventually ⁓ from my foot up to my shin, actually I felt pins and needles ⁓ and my foot was actually numb and I experienced a lot of headaches ⁓ immediately prior to the stroke. So for weeks I was having, I would have little headaches that I just thought was stress related from work.

Bill Gasiamis (05:38)

Ty Hawkins (05:54)

So ⁓ it may have been a few weeks, honestly. So I just pushed through and thought it was because of work and just stress related to work. it took about a week or so till it actually moved, till actually my leg went numb. And I remember one day vividly my wife tickled my foot, my feet, I was ticklish. And she went to tickle my, she tickled,

tickle my feet and I jumped when she tickled the right foot but I didn’t budge at all when she tickled the left foot and so that was a sign I still pushed through and I went to play basketball and I took a shot that it was routine for me and I missed very bad and there were guys at the gym I thought I had vertigo maybe some something in her ear and the guys at the gym like hey man

Something seems off with you. I want you to get checked out before we play again in a few weeks. And so I decided to make an appointment to see my neurologist or not neurologist, my primary care physician. And I went through a routine checkup and everything kind of cleared. And so I had a decision to make that I want to tell her what was going on with my body though my vitals were good.

And so I told her and she ran some tests like poked poked my foot and just was touching my leg with different ⁓ textures and eyes open eyes closed and I can only I only knew that she was touching me if I could see her. So when I closed my eyes and she touched me, I didn’t I had no idea. And so she sent me to for MRI and before or not for MRI, she sent me to a neurologist.

And the neurologist scheduled me for MRI for the next week and I was in the hospital the very next day.

Bill Gasiamis (08:04)

Ty Hawkins (08:17)

Bill Gasiamis (08:33)

Ty Hawkins (08:44)

Bill Gasiamis (08:57)

Ty Hawkins (08:58)

by minute by minute hour by hour So I started the day she noticed a facial droop and we had no ideas of the sign She looked at me. She said are you okay? Cuz your face and I looked in the mirror and it was it was slight but So didn’t really think much of it and I was excited for our shoot So I just pushed through and on our way the photo shoot location was at our University where we met and that’s about

40 minute drive from our house so as we’re progressing through the drive my vision starts to get blurry and I can’t I can barely make out the vehicles that are around us I can only make out the color and the color of the license plate so I know that something’s there but it’s so blurry that I can’t even couldn’t tell you what kind of what kind of vehicle it was we actually get to the location for the shoot

I get out the car and I can barely stand upright so ⁓ I Remembered trying to move and I was just so all balance and and dizzy and We did the shoot somehow some some way I made it through the shoot and I remember changing my clothes and ⁓ As I look back now I went into the bathroom to change my clothes and I was alone and I could I kept

Tilted to the right while was trying to put my clothes on and my shoes and as I think back I’m so lucky I’ll say I’m so blessed to have made it out of that bathroom you know I’m back to the group and We finished the shoot and I go we drop home So my wife says do you want to go to the hospital or I said no, I won’t go home and I just want to rest ⁓ so

She goes and picks us up some food. I’m at home. I remember taking maybe two, three bites of the food and just feeling so nauseous. Like, man, I can’t even, I’m not even hungry anymore. And so I say, I’m gonna go and take a nap. If I wake up and I feel the same as I do now, we can go to the hospital. And this is where the story really gets.

as I’m sleep. have a dream and It’s just I’m in a dark place and I just hear a voice and it says do you trust me and? I said well Absolutely, it said okay. Well, we have to go and I immediately wake up and I tap my wife and I say hey we should go to the hospital now and Then I go to the hospital so by day I’m taking engagement photos and by night. I’m in ICU

immediately taken to the back with them saying whatever the stroke they felt that the stroke code was or what they call it in the hospital. And I was immediately taken back for a CAT scan and chest x-rays.

Bill Gasiamis (12:31)

Ty Hawkins (12:39)

But I would say they turned out well despite the circumstances for what the circumstances were

Bill Gasiamis (13:17)

Ty Hawkins (13:30)

hearing seeing a figure in the corner of my room and hearing that same voice say remember that I’m going to protect you and so from there you know I just tied it that that was God with me through through the stroke

Bill Gasiamis (14:12)

Ty Hawkins (14:22)

Yeah, it was was crazy. remember so it’s time almost simultaneous the the doctor was coming in to give the news and he was The door was off-center to my left. So I see he he came in and The figure was in the corner to the right So as he comes in my wife is looking like he has bad he looks like he has a face of bad news so he mentions that there’s

They found a mess and Simultaneously, heard me remember I’m going to protect you so as the doctor leaves I look at my wife and I say I don’t know how to explain this but I’m going to be okay and You know as destroyed as she was You know, that’s what I could say to her I couldn’t really explain it in that moment But I told her and ⁓ I knew that I was going to be fine

Bill Gasiamis (15:25)

I got the news it was there’s a mass on your brain or a shadow on your brain that appeared in the scan. It could be a brain bleed. It could be a tumor and that tumor could be benign. It could be cancerous. That’s the way they broke the news. And I remember being kind of like, ⁓ okay, whatever. And I was so.

I was so nonchalant about it. He says to me, do you have any questions? And I said, no, not at this stage. And I left it at that. And I basically just took the news, went to bed, had a bit of a sleep because the next morning I was going to wake my wife, her to come to hospital. I had to tell her the news and I did that. She came. And after I told her the look on her face was the first time that I kind of got a little bit scared. And then I had to ring.

my client and tell my client I’m not coming into work today ⁓ because I’m in hospital and there’s something wrong with my brain I don’t know what it is and I start crying.

But even through all of the drama, the three brain bleeds over two and a half years, brain surgery, walking, even through all of that and all the problems that it caused us, me, my family, my work, it never crossed my mind that I wouldn’t get through this or wouldn’t get over it or beyond it. Now I am still dealing with it. I still have a podcast that I have to do.

because if I don’t do, I don’t get my therapy every week. But do you know, I’m moving through it, beyond it, overcoming it. I never believed for one moment that it would be the thing that stops me, defines me, even though I’ve had dark days, dark weeks, dark months, I always expected that it would shift and something would come out from the other side. I don’t know whether…

⁓ I would ⁓ allocate that to God or something else, but I truly deeply believe that like it was within me and maybe it was kind of God like type of experience, but I love how you’re in technically like the worst day of your life health wise, it could go one way or another and you’re just thinking I’m going to tell my wife everything is going to be fine and ⁓

We’ll just get through this. I think that is something that sort of set the foundation for how you were going to approach the whole entire recovery after that, this experience that you had.

Ty Hawkins (18:40)

the diagnosis and the statistics that show if you have a bleed in your brain stem that the percentage of survival is 25. So that’s one in four people that based on statistics that experience what I do one in four people survive. And then of those that do survive, they say that 10 % just make a significant recovery. And I never felt.

that I was battling against those statistics each day that from the moment I got the news it was a cool calm collected call my mom, my brother and that’s what my wife did and you know I just tried to stay as composed as possible ⁓ because I never felt in danger and I didn’t want them to worry too much ⁓ you know I knew it was going to be be difficult because I went from

One day running up and down the basketball court to being bedridden and barely could function. I couldn’t write. I lost the perception on size of writing. I couldn’t walk. ⁓ I forgot how to walk, though my body forgot how to walk. I could mentally think, hey, I want to take these steps and get up out of bed, but I needed help. So I spent a week in the hospital.

I spent three weeks in an inpatient rehab facility. So as I mentioned It was the day of our engagement shoot so our wedding was set for three months later And that’s all I could really think about was I have to get ready for this wedding I have to get ready for our wedding. I have to get ready for our wedding. So every day I woke up ⁓ You know my athletic mind is up for the challenge ⁓

You know, God told me that I was going to be okay. And I knew that I had to show up and do the work when I was taught on the basketball court and just in life, you just have you show up and you, you, you battle back against adversity. And I decided that yes, like you, didn’t want this to define me. I didn’t feel that this was going to be the end of, of my life. ⁓ I knew that it was going to be a chapter that I would never forget, but

I knew that I was up for the challenge.

Bill Gasiamis (21:40)

⁓ situation because I know that there are players on the field who are not the best players but they are the most impactful because they do the most work and they get given labels like he’s a natural or ⁓ he’s gifted or stuff like that and it’s like dude I couldn’t

I couldn’t walk straight when I was a young kid. The only reason why I appear gifted or natural is because I work all day every day. You classic Michael Jordan ⁓ kind of approach where Jordan talks about being ⁓ always training, always shooting hoops, always ⁓ on the basketball court more than anybody, even though he was

Ty Hawkins (22:52)

Bill Gasiamis (23:00)

Ty Hawkins (23:12)

mindset really helped me through. I reached out to a lot of my coaches and you don’t understand when you’re young how they’re, man they’re pushing me so hard, they’re pushing me so hard and I’m like well I’m glad that they pushed me this hard because because of that I felt prepared for the adversity that I faced in June of 2019 so you know I remember reaching out and just saying thank you for being

as hard on me as you were because it helped me through this. Who would have known that years later that discipline that you were, that I thought as a young adult would, you know, thinking that you’re just being tough on me and it’s really building characters, building a mindset. And I grew to appreciate that as I started to reflect back on, you know, on my journey because a lot of the doctors said,

You’re I feel that you’re recovering so fast because you were an athlete in I wasn’t just an athlete I worked hard my I took pride in like you said that Michael being in the gym and Just really working hard. It was one thing I said hey You might be better than me, but it’s one thing that you’re not gonna you might have more talent than me But you’re not going to outwork me and you know, that was my mindset

Bill Gasiamis (25:03)

Ty Hawkins (25:06)

I was going to be wheeling myself down the hallway to get to whatever session, OT, occupational therapy, physical therapy, or speech therapy that I knew what time I needed to be there and I was going to be there because I was determined to get better.

Bill Gasiamis (25:52)

I felt safe, but also I had the ability to just get myself there. They had handrails down the hallway and everything that I could hold onto. But of course I went near them, tried not to hold on, held on when I needed to. I did everything I could to be on my feet on my own so I can get the brain getting used to being on this weird left side of my body, which is numb, tingly.

and not receiving information that the foot was on the ground. Like the brain wasn’t being told your foot’s on the ground, man, you know, like step or tension muscle or do the stride or whatever. So I remember going through that and I remember complaining because I was spending too much time in my bed. And I was like, guys, like, what am I doing here? This is boring. And I need to get into a session. I need to do something. And they were, well,

You know, we have to have lunch and we have to have other things that we attend to after I write reports on you and all that kind of stuff. You can’t be eight hours a day just in the gym or in the therapy room or whatever. And I’m like, ⁓ okay. I didn’t realize there was other technical things that happened in the background that wasn’t that was related to me, but not the as part of the physical stuff. So in, so instead what I did is I

Ty Hawkins (27:38)

physical, yes.

Bill Gasiamis (27:49)

Ty Hawkins (28:11)

into the wheelchair, will to therapy. That’s why they didn’t come because I wasn’t necessarily walking. But when I did walk, I would have a walker and they would use, somebody would be with me. And I was the same way. I’m like, man, I’m in bed a lot. I’m only in therapy for an hour and a half each session. neural fatigue really,

could appreciate my breaks because I was so, that hour took a lot out of me. But as my body reacclimated to the workload that it was receiving, ⁓ I was able to stay awake a lot better and my mom would then take me outside to do extra things. We would play toss for my hand. ⁓ She would toss the tennis ball. It would help me walk outside a little bit.

Bill Gasiamis (29:11)

Ty Hawkins (29:37)

Bill Gasiamis (29:52)

to our situation that we found ourselves in. I took seven days, you took weeks. And I think that was just pure, utter luck that the bleed was a little small enough to start impacting us in a very small way that we thought was not significant and not at risk of our health. And also we both benefit from looking like we haven’t had a stroke. No one can tell that you would have or I’ve had a stroke, but you are.

Ty Hawkins (30:23)

Yes.

Bill Gasiamis (30:47)

Ty Hawkins (30:51)

Bill Gasiamis (31:16)

Ty Hawkins (31:24)

So ataxia is, impacts the muscle coordination. So when my nervous system gets overwhelmed, it almost scrambles my coordination. So sometimes it’ll impact my gait specifically. It really like impacts.

Again my left side so I was impacted in the brain stem right side of face left side of body So it impacts a lot of and I’m left side dominant. So as I’m trying to lift weights or play basketball ⁓ I’ll have a I’ll feel what someone miscoordinated and so my coordination isn’t ⁓ Isn’t smooth once I get overwhelmed or

My nervous system isn’t sending the signals properly then it impacts my running so then ⁓ doesn’t send the signals for all the muscles to fire in the proper chain and then it impacts Yeah, like my shoulder so we’re trying to like lift things overhead ⁓ then it’ll get shaky ⁓ But yeah, it’s pretty much just a lack of coordination for like to simplify things

Bill Gasiamis (32:52)

that kind of stuff. So tell me about gastroparesis. That’s one I haven’t come across a lot.

Ty Hawkins (33:27)

which will then lead to my digestive system either pausing or moving slow, moving a lot more slowly. And so what that can lead to is a lot of stomach discomfort where I can have three bites of food and feel like I had a six or six course meal. ⁓ you know, and then when that system isn’t functioning properly, it leads to issues with like my skin and things like that. But

Gastroparesis from my understanding is just either like a slowdown or paralysis of your digestive system.

Bill Gasiamis (34:33)

And like if you stop eating the standard American diet, standard Australian diet, same thing. If you stop eating that, you improve the gut conditions and that improves your brain, but also your other organs. But here you’ve got like a neurological disconnect sometimes when you’re overwhelmed by the vagus nerve that stops the standard basic functioning of your gut digestion. Like I imagine

Ty Hawkins (35:29)

Bill Gasiamis (35:31)

Ty Hawkins (35:41)

So I’ll have to try and guess like hey ⁓ Am I am I fool what did I eat yesterday? What did I have today already? So some days I found myself avoiding food Just because I think that if I do I’ll give my system time to either catch up or slow down ⁓ So simply put I do as I’m thinking about it. I do avoid foods at times

Bill Gasiamis (36:35)

So he had to eat only when other people were eating as a reminder that it’s time to eat. if he didn’t do that, he wouldn’t ever get the message that you have to eat. You haven’t eaten for four days or five days.

Ty Hawkins (37:15)

dinner with potatoes and a vegetable and like wow just from a banana and a glass of water and then some days my appetite is normal where I think once I find you know my routine I found a routine of sitting in a sauna and working out and ⁓ eating regimen so in the morning I would have I’ll have a cup of warm tea

And if I’m not overly hungry or have a gym session, I’ll just have some fruit like a fruit salad and I’ll feel light and my digestive system appreciates that. And then ⁓ my body responds well to the heat. So I’ll try to sit in the sauna or exercise to get myself to sweat. And that seems to help my systems kind of stay in syncing and rhythm.

So when I do that, my appetite is pretty normal, but when I find myself either overwhelmed, just neurologically or from the stresses of the day, then systems just start to go out of whack.

Bill Gasiamis (38:55)

when you exercise.

Ty Hawkins (39:27)

When I get, when I go to the gym and I work out, my mood is, it’s night and day when I don’t and when I do. And so I committed to, ⁓ working out as much, even if it’s just going outside for a in the neighborhood, getting outside, fresh air, it’s, have to move my body because if I don’t, that’s when things, you know, physically, mentally, and emotionally just start to break down.

Bill Gasiamis (40:23)

one of those sit down three wheeler bikes. If you need a walker, walk with a walker. you know, whatever the situation is, find a way around it because exercising is hard, not exercising is hard, but like far harder.

Ty Hawkins (41:11)

be immediately hard but it’s hard on your body not moving it adds up over time and ⁓ it’s what kept me I think not I think I know it’s what kept me the movement that I did early on paid off you know the doctors every session it was a lot of movement ⁓ and even now I’m just conscious of I may reach in the cabinet to get a cup but I’m

You know extending my arm more more than the one time to get the cup because that’s that’s therapy You know a lot of people have this ⁓ Miss conception that therapy is just that one hour in the therapy environment I try to find everything to be therapy Reaching for a cup reaching for a plate eating ⁓ You know the steps that I take around the house ⁓ even just dancing you know I’m not

I don’t have the, I have a little rhythm, but I’m not the best dancer, but music and moving my body just as I feel was something that was very, you know, beneficial for me. And it took me back to think when we were children and we’re kids, we just have these, what we think as adults is random movements. We’re folding ourselves like pretzels and spinning in circles. And it’s like, hey, this is what,

body is meant to be freely moving and we kind of lose track of that once we get to work or school sit at a desk for eight hours sit in a vehicle for long long drives and you know so on and so forth then we forget that we take for granted you know moving the ability to move our bodies until you know our bodies show us like hey you know this is the repercussions sometimes of you not moving your body.

Bill Gasiamis (43:34)

⁓ deficits, you just got to move as much as you can. I love I love that ⁓ that approach. So you also are now dealing with CRPS. Now I’ve heard of that before, but describe that and what it’s like for you.

Ty Hawkins (44:18)

You know, constant daily pain. You know, I feel something, ⁓ whether it’s in, you know, my leg, my arm, ⁓ you know, ⁓ it can be even having clothes on like this jacket right now is sending signals to my brain that ⁓ my arm is in pain and I’m not in pain clearly, but my brain is sending signals that me having this jacket on this material brushing up against my arm.

⁓ It’s painful water hitting my skin painful and my paint but That you know depending on the temperature you know if they’re cool at the bed sheets are cold of Pain level rises through the roof. ⁓ Yeah, it hurts But you know a lot of you know my mindset

Bill Gasiamis (45:23)

Yeah.

Ty Hawkins (45:44)

From putting the sneaker on, it’s really been attacking, as of lately, my left ankle and my left foot. certain shoes, I can feel the pain deep in the bones in my foot. And then sometimes I’ll just feel like ⁓ a very deep ache in my shoulder. Or if the temperature gets cold enough, it’ll feel like somebody’s just grabbing, know, just has a hold on my rib cage.

and ⁓ you know so that’s Lightly to put CRPS what I think for me because I’m so used to the pain now is that my I always say daily I have a pain level of ⁓ four four to five where somebody that’s not used to chronic pain would say it’s eight or a nine and ⁓ Some days it’s frustrating

Some days it’s tiring, know, the sensation varies. It’s a numbness and tingling to a deep bone-jarring ache to almost a burning sensation at times, like depending on how much I’m moving. Like, so if I were to move with this jacket right now, as I move my arm, then there’s a deep pain in my tricep and then a very deep pain from the wrist to my fingertips.

And sometimes it’ll make me, like people, I’ll stand and I’ll just be squeezing my hands and people may think that I’m just, you know, just holding my hands, but I’m trying to let my body know that it’s okay. So I’m, you know, massaging or rubbing and ⁓ sometimes that helps or sometimes I just have to, you know, take a nap or close off other sensors to calm the brain down.

Bill Gasiamis (48:11)

Ty Hawkins (48:16)

Yeah.

Yeah.

Bill Gasiamis (48:38)

Ty Hawkins (49:01)

Bill Gasiamis (49:07)

Ty Hawkins (49:08)

Go.

And I will have to have a conversation in my head with my left side and say, you’re coming along for the ride because you are overreacting. The right side is perfectly fine, which means that I haven’t done anything to hurt my body. haven’t over exerted ourselves. So you’re just overreacting. Be quiet and let’s get on with it. And believe it or not, man, that works. That quietens things down.

and then we just get on with the job of walking and seeing what we need to see.

Ty Hawkins (50:38)

Bill Gasiamis (50:49)

Ty Hawkins (51:07)

So we’re walking and then, you know, I’m like, have to control my emotions. And then like you have a conversation with myself, like, Hey, my right side is not tired at all. My right side, we can go, we can go. And I’m like, Hey, we are, ⁓ we are okay. We’re, we are totally fine. This is a walk in the park. It’s a lot of people. Yes, but we are okay. We are safe and I wouldn’t do, I let my body know it’s nothing that I’m not putting you in any harm’s way. We’re just walking.

And we may have to slow the pace down a little bit. But then as I get back in rhythm, then I found myself, okay, we’re back. We’re back to speed. And I really think that, like you say, it’s you having that mindset and then telling yourself. So day two in Disney, day one, I didn’t know what to expect. But day two is like, hey, we’re having this pep talk before we even go outside. We’re not, we’re cooperating today. We’re going for a walk and it’s going to be a long day. So.

let’s go and as long as I have comfortable shoes and I think you know and I walk take breaks and able to sit down at times and you know my body then it’s like starts to trust in a lot that he’s going to take care of me so you know I have those conversations too in those same experiences.

Bill Gasiamis (52:58)

undo it, you know, so I’ve got to like sit there, massage it, massage it, just try and get the tendons and all of that stuff to move into work. That’s kind of like the only way that I can, that I can get through it, but I have to get regular massages. get a massage every once every about 10 days on my left side to loosen everything up. Otherwise it just puts my right side out as well, because then it starts impacting the other side of my body.

Ty Hawkins (53:35)

Yeah,

because you start to overcompensate. Yeah, I do the same while I start going for those kind of weird here’s movement, movement recovery. So I do a lot of things to move my body stretch recovery and things like that. I actually have an appointment tomorrow afternoon to do that.

Bill Gasiamis (53:45)

Yeah, it’s so important. ⁓ Little, little things that kind of help you get through the next 10 days or two weeks or whatever it is, make such a difference if you can make it to a massage or if you can get your body look at that. It really helps. I find it helps me mentally more than anything because it eases all of those ⁓ discomforts and then my brain can just feel a little bit relaxed, you know, for a few days.

Ty Hawkins (54:20)

Bill Gasiamis (54:28)

Ty Hawkins (54:38)

Yes.

Bill Gasiamis (54:45)

requires me to just sort of stop, rest and not push through and just allow it to settle down.

Ty Hawkins (54:54)

I remember even on the basketball court, had a day off from practice. it’s, I have to allow my body time to rest and also my brain. you know, when we’re constantly thinking how can I improve, that’s actually putting, you know, some stress on our brain. ⁓ You know, that I started to learn to try to limit and just say, hey, I’m taking a day off. I don’t even want to.

think about what I may have to do. I just want to be here in the moment. I just want to enjoy a movie today or just spend time with the family and not think about anything recovery related.

Bill Gasiamis (56:00)

Like how did you deal with them? How do you kind of navigate when it gets really tough and challenging emotionally and mentally?

Ty Hawkins (56:34)

taking time to reflect, I’ll do yoga, I’ll meditate, and you know, I’ll just get more vulnerable about my story I share with people, and I think that allows me to make it through just being honest with myself. I think that the type A athletic mind that I have, it was like, hey, you’re fine, you’re fine, you’re fine, you’re okay, and I never allowed myself to say, you’re not okay.

Once I did I think that was when I started to see more progress because I was honoring how I truly felt versus how I wanted to feel And it was hey some days I told my just recently maybe maybe two days ago. So my mom, know was it was a rough day and I was like hey this sucks mom and She was like, know, yes you you have to honor and it’s okay to say that that it

It does suck, but

know it’s you show gratitude that you’re still alive to experience have the experience of life But understand you know you have to honor how you feel in the moment, and it’s for me. I’m able to Shift quicker out of those moments now because it’s like hey I honor it this sucks may have a little cry then immediately after it better then have a little laugh and like hey, okay, you know so I just

Understand that there’s the range of emotions in its waves. So instead of going against the tide I just roll with the waves these days and you know is if I’m sad I just sit with it in the moment I talk to whoever I need to talk to and you know, let them know hey today is a bit harder of a day rather than you’re okay. You’re okay. You’re strong and I eliminated that ego and just honored how I feel because I think

especially as men, we’re we’re taught to, you know, just tough it out, get up and dust it off. And it’s like, hey, we’re human at the end of the day and we all have

So I think it’s better to honor your emotions. You know, we all have them for a reason, ⁓ you know, so it’s okay to cry. It’s okay to feel sad, you know, and work through that and you’ll eventually, hopefully we’ll see happiness, enjoy on the other side.

Bill Gasiamis (59:30)

⁓ So you might have to try a couple of different therapists, but like it is next level. You go there, you could talk about anything you want. Nobody’s judging you. You know, don’t have to share that with your loved ones. You can just be yourself and a different version of yourself in that room. that again, it just takes more weight off your shoulders. It creates more lightness. So I’m fully behind that.

Ty Hawkins (1:00:26)

and just about life. It helps me every Monday. It’s a great start to my week.

Bill Gasiamis (1:01:03)

Ty Hawkins (1:01:14)

and they support me here on my journey.

Bill Gasiamis (1:01:48)

Ty Hawkins (1:02:08)

My recovery would lead to a social media following and people looking to me for, you know, hope and inspiration that it was like, wow, you know, I’m actually am somebody that can impact. now it’s, you know, I live to help others. That’s why I continue to share almost seven years later and stay in touch with, with people and help try to provide resources that, you know,

You know, just be a resource for people that go through this or loved ones, you know, to anybody who goes through this or any adversity, just to show, my story is a testament that, you know, adversity does hit, but you can make it through. You know, it starts with a mindset and a great community. And, you know, I’m very proud of my story and, know, where I am now and the person that I have become despite, you know, that unfortunate circumstance and event.

Bill Gasiamis (1:03:37)

Ty Hawkins (1:03:54)

Bill Gasiamis (1:04:03)

because it’s more of a global reward. It’s less of a focused, narrow reward, which is, know, money, car, house, you know, vacation. It’s now.

a feedback loop from other people and I get messages on the podcast every single day on YouTube, emails, people going this episode really has made a difference to my life or I loved hearing that story from that person, know, the comments make it so worth doing. It is amazing.

Ty Hawkins (1:05:03)

yes, yeah, for me the message is hey, you know, your story helped me make it through or it helps me you serve as the inspiration and I don’t do it for that but it just helps. You know, it’s just good, a good feeling knowing that, you know, this isn’t in vain and that I’m able to impact people, especially in places that I’ve never been. I’ve received messages from places in the world that I haven’t traveled to yet and hope to one day.

And it’s like, know, my ⁓ story is helping people across the world. And I never imagined that I could have that impact, you know, before it was basketball and I need to, you know, attain this and career that. you know, now it’s, I hope to open, you know, an app or get an email like, hey, this has been so helpful.

You know, or hey, what advice can you offer? And it’s like, man, you know, I don’t, can offer you this advice. ⁓ you know, this is what helped me. ⁓ and it’s just a good feeling knowing that, you know, what the fight that I put up is, you know, then helping somebody, you know, pay it forward. ⁓ you know, whether it’s a stroke survivor directly, or it’s a caregiver, ⁓ or just someone who’s having, you know, a tough time, a tough goal at life in the moment to know that.

They draw some sort of inspiration to keep going. And that’s what it’s really about for me.

Bill Gasiamis (1:06:35)

Ty Hawkins (1:06:48)

I

was just saying what time it is 8 15 here

Bill Gasiamis (1:06:57)

you’d like to just share with the people who are listening who are a little bit earlier on in their recovery.

Ty Hawkins (1:07:31)

only happens in the first year and I want to say that I’m approaching year seven and I still see improvements and strides in year seven so those are you know two of the biggest things focus on your journey and your mindset and don’t believe or limit yourself to think that recovery happens in just one year it’s the brain I think the healing just starts in the first year

Bill Gasiamis (1:08:28)

⁓ later on, or that’s the best you can expect to get. That’s all not true. Just put it behind you. These people don’t know what they’re talking about. Keep going after that recovery.

Ty Hawkins (1:09:03)

Yep, I agree.

Bill Gasiamis (1:09:07)

Ty Hawkins (1:09:20)

Bill Gasiamis (1:09:35)

The post Long-Term Effects of Brainstem Stroke: The Hidden Deficits No One Talks About appeared first on Recovery After Stroke.

Trisha Winski was 46 years old, working as a corporate finance director, with no high blood pressure, no diabetes, and no smoking history. By every conventional measure, she was not a stroke candidate. Then one morning, she stood up from the bathroom, collapsed, and couldn’t speak. Her ex-husband, sleeping on her couch by chance the night before, found her and called 911.

The cause was a carotid web, a rare congenital condition she never knew she had. Three years and three months later, she’s living with aphasia, rebuilding her sense of self, and navigating something that doesn’t get nearly enough airtime in stroke conversations: emotional anger after stroke.

A carotid web is a rare shelf-like membrane in the internal carotid artery that disrupts blood flow, causing stagnation and clot formation. It is a form of intimal fibromuscular dysplasia and affects approximately 1.2% of the population. Most people never know they have it.

Unlike the more commonly cited stroke risk factors, such as hypertension, diabetes, smoking, and obesity, a carotid web is congenital. You are born with it. There is no lifestyle adjustment that would have prevented Trisha’s stroke. That distinction matters enormously when you are trying to make sense of what happened to you.

“I have nothing that could cause it,” Trisha says. “No blood pressure, no diabetes. It’s hard.”

The treating hospital, MGH in Boston, caught the carotid web, something Trisha was later told many hospitals would have missed. It is a reminder of how much diagnosis still depends on the right clinician, the right technology, and a degree of luck.

One of the most underexplored dimensions of stroke recovery is emotional anger, not just grief, not just fear, but a specific kind of rage that has no clean target.

“Why me? Why did I have to have it? It’s frustrating. It’s so frustrating,” Trisha says. “I’m just mad. I don’t know who I’m mad at.”

This is a clinically recognized phenomenon. Emotional dysregulation after stroke can have both neurological and psychological origins. The brain regions that govern emotional control may be directly affected by the injury. At the same time, the psychological weight of sudden, unearned loss of function, of identity, of a future you thought you understood is enough to generate profound anger in anyone.

For people like Trisha, who had no risk factors and no warning, the anger is compounded. There is no behaviour to regret, no choice to unwind. The stroke simply happened. That can make the anger feel even more directionless and, paradoxically, even more consuming.

“Why me? Why did I have to have it? It’s frustrating. It’s so frustrating.”

Bill’s gentle reframe in the conversation is worth noting here: “Why not me? Who are you to go through life completely unscathed?” It’s not a dismissal, it’s an invitation to move from the question that has no answer to the one that might.

Trisha’s stroke affected her left hemisphere, producing aphasia, a language processing difficulty that affects word retrieval, word substitution, and speaking speed. Her numbers remained largely intact, which helped her return to her finance role. But the aphasia has been, in her own words, the hardest part.

“If I didn’t have that, I wouldn’t be normal, but I could be normal,” she says. “The aphasia kills me.”

One of the quieter consequences of aphasia that Trisha describes is self-censoring, stopping herself from communicating in public because she fears taking too long, disrupting the flow of conversation, or being misunderstood. She has developed a workaround: telling people upfront she has had a stroke, so they give her the time she needs to get her words out.

The frustration-aphasia loop is well documented: the more stressed or frustrated a person becomes, the worse the aphasia tends to get. The therapeutic implication is significant. Managing emotional anger after a stroke is not just a well-being issue for someone with aphasia; it is directly tied to their ability to communicate.

“Whenever I’m not stressed, I can get it out. When I get nervous, I can’t,” Trisha explains.

One of the most striking moments in this episode is when Trisha reflects on her son Zach and ex-husband Jason, both of whom were visibly distraught in the days after her stroke.

“I had a stroke. Why are they traumatized?” she says and then catches herself. “I forgot to look at it from their perspective. They watched me have a stroke.”

This is something stroke survivors frequently underestimate. The people around them, partners, children, friends, even ex-partners like Jason, carry their own version of the trauma. They watched helplessly. They made decisions under panic. They grieved a version of the person they knew, even as that person survived.

Acknowledging this doesn’t diminish the stroke survivor’s experience. It widens the frame of recovery to include the whole system and opens the door to conversations about collective healing.

Three years and three months after her stroke, Trisha’s message to people in the early stages of recovery is grounded and honest.

“Neuroplasticity really does exist. My brain finds places to find the words I never had before. It takes longer, but it gets there. Just give yourself time.”

She also reflects candidly on going back to work too early, returning before she was medically cleared, crying every day, and unable to follow her own cognitive processes. “I should have waited,” she says. “But I did it. It taught me that if I ever had it again, I won’t do that.”

Recovery after stroke is non-linear, unglamorous, and deeply personal. But the brain is adapting, always. Trisha’s story is evidence of that and a reminder that emotional anger after a stroke, however consuming it feels, is not the end of the story.

 Read Bill’s book on stroke recovery: recoveryafterstroke.com/book | Support the show: patreon.com/recoveryafterstroke 

No risk factors. No warning. Just a carotid web she never knew about — and three years of emotional anger, aphasia, and finding her way back.

Tiktok

Highlights:

00:00 Introduction – Emotional anger after stroke

Transcript:

Trisha Lyn Winski (00:00)

Bill Gasiamis (00:07)

Trisha Lyn Winski (00:21)

Bill Gasiamis (00:28)

Trisha Lyn Winski (00:30)

Bill Gasiamis (00:35)

patient stories and resources, and then keeps you updated on what matters each week. I use it myself and it’s my favorite tool of 2026 for staying current with what’s happening in stroke recovery. It’s low cost and completely patient first. Try it free and when you’re ready to subscribe, use my code, Bill10 at

slash sidekick slash stroke to get a discount. I earn a small commission if you use that link at no extra cost to you. And that helps keep this podcast going. Also my book, The Unexpected Way That a Stroke Became the Best Thing That Happened is available at recoveryafterstroke.com/book.

And if you’d like to support the show on Patreon and my goal of reaching a thousand episodes, you can do that by going to patreon.com/recoveryafterstroke. Links are in the show notes.

Right, Trisha Winsky was 46 years old, healthy, had no risk factors and then a carotid web. She never knew she had changed everything. Let’s get into it.

Bill Gasiamis (02:06)

Trisha Lyn Winski (02:09)

Bill Gasiamis (02:10)

Trisha Lyn Winski (02:27)

Bill Gasiamis (02:34)

Trisha Lyn Winski (02:36)

Bill Gasiamis (02:38)

Trisha Lyn Winski (02:45)

deal with it all day, come home, I’d go to the restaurant, the bars, my friends, and then like I had a stroke and everything changed. Everything changed in an instant.

Bill Gasiamis (03:00)

Trisha Lyn Winski (03:02)

Bill Gasiamis (03:04)

Trisha Lyn Winski (03:08)

have a kid. Now he’s 28. He was 25 when I had it. I was married before, but like a long time ago. Actually, my ex found me when I had a serve. So he’s the one who found me. But so yeah, that’s all I have here. My mom passed away in November. So it’s been challenging. Yeah.

Bill Gasiamis (03:30)

⁓ Sorry to hear that. how many years ago was a stroke?

Trisha Lyn Winski (03:37)

Bill Gasiamis (03:41)

Trisha Lyn Winski (03:50)

I working hard, but I just wanted to get to a good place in my career. And I think I was in a good place. Now I second guess at all time because I’ve had strokes now, it doesn’t matter what happens. I’m always second guessing it. But I was in a good place. I just felt like I needed to make them better. And the stroke happened and I so didn’t.

Bill Gasiamis (04:17)

Trisha Lyn Winski (04:18)

Bill Gasiamis (04:22)

Trisha Lyn Winski (04:26)

Bill Gasiamis (04:37)

Were, did you consider yourself healthy? Was there any signs that you were unwell, that there was a stroke kind of on the horizon?

Trisha Lyn Winski (04:46)

I’m gonna have to go to hospital. This continues. can’t see.” And then it went away. And that’s the only symptom I had. Only symptom. And he said, no, I should told you that you might be having a stroke. like, even if you told me that, I never believed him. Never.

Bill Gasiamis (05:23)

Yeah. When you’re, and it went away and you didn’t have a chance to go see anyone about it.

Trisha Lyn Winski (05:37)

Bill Gasiamis (05:55)

and then on the day of the stroke, what happened? Was there any kind of lead up? Did you notice not feeling well during that day? And then the stroke, what was it like?

Trisha Lyn Winski (06:09)

Makes me sad. Um, anyway, so when I woke up I went to bathroom and I stood up from the toilet and I like I fell over and I I didn’t even realize it. So I fresh my face in like five places when I fell and I didn’t even I didn’t even know it my whole side was numb. So I didn’t feel it. And Jason, you know, helped me to bed. I thought he helped me to bed. He didn’t he like drug me to bed.

He got in the bed and then I… He came back in like five minutes later, are you okay? Like he knew something was wrong. And I couldn’t articulate to him. So I said, I’m fine, I’m fine. I’m gonna go to work. So he put the phone in my hand to call my boss. And he came back in like five minutes later and I… He put it in my right hand so I didn’t call anybody. And he said, my God, I’ll never forget this. He said, my God, you’re having a stroke.

And I couldn’t talk. I couldn’t talk. I just… Yeah, I could hear him say that, but I couldn’t talk to him. It’s… It’s really scary. Like, even talking right now, like… It upsets me.

Bill Gasiamis (07:37)

This is really raw for you, isn’t it?

Yeah, understand. went through very similar things like trying to speak about it and getting it out of my self and trying to, you know, bring it into the world and get it off my shoulders. Like often brought me to tears and made it really difficult for me to have a meaningful conversation with anyone about it.

Trisha Lyn Winski (08:07)

Bill Gasiamis (08:09)

Trisha Lyn Winski (08:15)

We’re good friends, it was a challenge.

Yes.

So they ended up taking me to MGH, it’s a hospital right down the street from me. ⁓ But he’s not from here, he’s from Pennsylvania. he didn’t know where to me, like, just has to go to the hospital. So they knew when they came up. So MGH is like known for their strokes, they’re like really good at strokes. ⁓ And so that’s where they plan on taking me.

Bill Gasiamis (09:01)

Trisha Lyn Winski (09:11)

I’m in jail on this third day, but that’s about it.

Bill Gasiamis (09:41)

Trisha Lyn Winski (09:50)

I can’t flip an egg with this hand. it’s like this and then this is like that. I can’t do this. ⁓ And my right foot has spasticity in it. then the three toes on the side, I could curl them up all the time.

Bill Gasiamis (10:36)

Trisha Lyn Winski (10:37)

for it, nothing helps.

Bill Gasiamis (10:40)

Trisha Lyn Winski (10:42)

Bill Gasiamis (10:45)

Trisha Lyn Winski (10:47)

Bill Gasiamis (10:49)

Trisha Lyn Winski (10:50)

Okay.

⁓ yeah, you need to give me his name. We’re gonna talk. That’s I went twice to have it done. ⁓ it didn’t help at all. And I met, I met the guy, ⁓ the diarist, diarist ⁓ at the hospital. And he said, I didn’t think it was, it was going to work. I’m like, it’s the first I saw you. And he was like, I saw you and you had the shirt. I’m like, okay. I saw a million people that we can’t, I don’t remember who they are.

Bill Gasiamis (11:20)

Yeah.

All right. So I’m going to put a link to the details for cryo-neuralysis in the show notes. ⁓ you and I will communicate after the podcast episode is done. And I’ll send you the details because there’s this amazing new procedure that people are raving about that seems to provide more relief than Botox in a lot of cases, and it lasts longer. And it’s basically done by freezing the nerve or doing something like that to the nerve.

in an injection kind of format and then it releases the spasticity makes it improve. ⁓ well worth you looking into it, especially if you’re in the United States and it’s in Canada. ⁓ I know that doctor is training people in the United States and around the world. So there might be some people closer to you than Canada that you can go and chat about. Yeah. And how long did you spend in hospital in the end?

Trisha Lyn Winski (12:28)

four weeks. Yeah. So the first, the first week I was at MGH, ⁓ they kept me for longer in the ICU because I had hemorrhagic conversion, transformation, whatever it’s called. I, you know what that is? Well, that went from the, I can’t think of what I was trying to say.

Bill Gasiamis (12:40)

Trisha Lyn Winski (13:05)

Bill Gasiamis (13:09)

Trisha Lyn Winski (13:11)

carotid artery and went to my brain. So I my brain bleed for a couple of days, but not like bleed, bleed, but it showed blood. So they kept me in it for longer.

Bill Gasiamis (13:23)

Trisha Lyn Winski (13:29)

Bill Gasiamis (13:34)

And when you came home, were people living with you?

Trisha Lyn Winski (13:56)

No, nobody was living with but he had to come move in with me for three months.

Bill Gasiamis (14:06)

Trisha Lyn Winski (14:07)

I mean, honestly, at the time it was fine because I slept all the time. I slept like, God, I would go to bed like seven, 730 at night. And I was sleeping until like, at least, some sort of next day. I’d get up for a few hours, do what I had to do, and then fall back asleep. But just, I slept for a lot. So it was okay then. But come to the end of it, I’m like, okay, it’s time for you at your place.

I need my space again, but yeah, he’s yeah, I need to have my own space. But at the time I know I need to rest. Yeah, I do. Yeah. ⁓

Bill Gasiamis (14:36)

and you need somebody around anyway. It’s important to have

something near you if you’re unwell. Do they know what caused the stroke?

Trisha Lyn Winski (14:53)

It’s really, it’s really rare. Only like 1.2 % of the whole population has it and I had it. It’s co-indentinob… co-ind… it’s… so I got it I was born.

Bill Gasiamis (15:11)

Trisha Lyn Winski (15:13)

Bill Gasiamis (15:26)

what to look like, what to look for. The thing about scans, the whole body, my good friend of mine, the guy who helped me out when I was in hospital, he’s a radiographer and he does MRIs and all that kind of stuff. And he used to do my MRIs happened to be my friend happened to be working at the hospital that I was at. And he used to come and see me all the time. And I said to him, can we do a scan, you know, a preventative scan and check out, you know, my whole body? And he said, well, we can, but

Trisha Lyn Winski (15:28)

Yeah.

Bill Gasiamis (15:53)

Trisha Lyn Winski (16:09)

Bill Gasiamis (16:23)

Trisha Lyn Winski (16:38)

Bill Gasiamis (16:53)

Trisha Lyn Winski (16:56)

Bill Gasiamis (17:21)

Trisha Lyn Winski (17:38)

Bill Gasiamis (18:02)

Trisha Lyn Winski (18:06)

and I’m like,

Bill Gasiamis (18:15)

probably didn’t have the technology to find it.

Trisha Lyn Winski (18:17)

when I came to, it wasn’t months later, but I saw it on the scan. like, ⁓ it’s right there. ⁓ He said, yeah, but I thought it would be obvious, but it’s not so obvious.

Bill Gasiamis (18:33)

it causes blood to stay stagnant in that particular location causing clots. And you in the time we’ve been communicating, which is only in the last three or four weeks, you even sent me a message saying you just had an S you just had a TIA. ⁓ how come you’re still having clots? they not treating you or

Trisha Lyn Winski (19:20)

No,

I think they so they gave me um a scent in my re to kind of write that I don’t know why I had it cuz um, but my eye was like acting crazy again Just one eye and I I didn’t want to go to the hospital. I I don’t want the hospital at all for anything if I have if I don’t have to go I’m not going to hospital I Text Jason and Zach and they’re like no you have to go like I’ll wait a little while so

Meanwhile, I was waiting a little while because I didn’t want to go and then I listened to ⁓ a red chat chat GBT He said no you have to go right now. Here’s why I’m like Now it’s like five hours later. I’m Sorry, so I went but and they said that I have ⁓ It’s likely I had a clot They don’t know where it came from though. So that’s that’s the thing is it’s confusing and by the way I think there’s something to be said about ⁓ I think if you have a stroke

You can have one again easier than somebody who didn’t. I didn’t know that, but I learned it quickly. ⁓ So they said I had it, maybe went up in my eye, but it broke apart before it became an actual stroke. But I don’t know.

Bill Gasiamis (20:41)

I love that you didn’t want to go and you ignored the male influences in your life, but you listen to chat.

Trisha Lyn Winski (20:50)

I did, I did.

They’re so smart. they say, I find on Google anyway. So that I listened to ChatGVT, it was like, I don’t know. And I know that like…

Bill Gasiamis (21:05)

that that’s kind of mental.

Trisha Lyn Winski (21:08)

Bill Gasiamis (21:18)

Trisha Lyn Winski (21:29)

but I don’t know. I think I spent so much time in there. ⁓ I don’t know. It’s in my head. I don’t like to sit in hospitals because of that. So after having the stroke, I stayed in hospital for month. I got out. I went back in like two weeks. I fell over twice. They thought that’s why. So when I was in hospital,

something like they go Vegas something is pretty common. And I was like, okay, I did want to go then. I did want to go and then Zach made me. And then two months later, I went in to get the stint. And at that time I got a period. So it’s a long story. But I said to the doctor, I’m like, well, I’ll be okay. Does it do anything else because of this? He’s like, no, you should be fine. But if it gets bad, you have to go the hospital.

he got bad. I almost died. I almost died from that. And that made me traumatized because I was awake and alive for all of it. I saw it all and passed out like six times in like three, I don’t know how many days, like five days. Yeah, but.

Bill Gasiamis (22:46)

The challenge with something going wrong in hospital is that it’s less likely to be as dramatic as something going wrong at home. And that’s the thing, right? If you haven’t got help, then the chances that your stroke cause you way more deficits. That’s like so much worse. The best place for you to be is somewhere other than at home because you don’t want to risk being at home alone when something goes wrong and then you’re home alone.

Trisha Lyn Winski (23:04)

Bill Gasiamis (23:15)

Trisha Lyn Winski (23:20)

Yeah. I

think that it’s mostly like I don’t like to stay there. I got a weird thing about this. I don’t like to stay there. I can stay anywhere I go, but the hospital really bothered me. I think that they were actually pretty good to me. So I’m not mad at them for that. ⁓ But I don’t want to see them now if I can possibly help it.

Bill Gasiamis (23:54)

Trisha Lyn Winski (23:56)

Bill Gasiamis (23:58)

Trisha Lyn Winski (24:07)

Medical appointments, forget it. They’re like, oh my god. I have so many of them, I can’t even say it.

Bill Gasiamis (24:11)

I hear you. hear you. went through the same thing and then I got over it. now lately I’ve been going back to the hospital and seeing medical doctors for, um, not how I haven’t got heart issues, my, I’ve got high blood pressure and they don’t know what’s causing it. And, know, I’ve had my heart checked. I’ve had my arteries checked. I’ve had all these tests, blood tests, MRIs, the whole lot, and it’s getting a little bit old, you know, like I’m over it. But the truth is without them, I don’t.

I don’t have a hope. Like if my blood pressure goes through the roof, you know, which had been, had been sitting at 170 over 120, 130. And I have a brain hemorrhage because of uh, high blood pressure. know what a brain hemorrhage is like, you know, I don’t want to have another one. So I’m like, I am going to, uh, I’m going to shut up, go through it and be grateful that I have medical support. Um, which, which

Trisha Lyn Winski (24:55)

I know.

Yeah.

Bill Gasiamis (25:14)

Trisha Lyn Winski (25:16)

Yeah.

Bill Gasiamis (25:40)

Trisha Lyn Winski (25:44)

don’t have, I never had high blood pressure but speaking of I’ve, I don’t have a problem with my heart but they, so that when I had this for the first time they made me get out and have to, I had to wear a heart monitor for a month and I said like why am I wearing a heart monitor? There was something, they, I don’t know what it is.

Bill Gasiamis (25:51)

Trisha Lyn Winski (26:13)

They’re making you wear that for a month. Anyway.

Bill Gasiamis (26:46)

Trisha Lyn Winski (26:47)

Yeah, yeah, this month I have ton, I have like seven appointments.

Bill Gasiamis (26:56)

Trisha Lyn Winski (26:59)

Me too.

Same thing. I forgot all of it. And I had to share it with Zach and he could tell me, have an appointment. Like, okay. I forgot. He’s like, have an appointment. I’m like, fuck, I have to go.

Bill Gasiamis (27:13)

How long did it take you to get back to work?

Trisha Lyn Winski (27:28)

Not because of people. don’t think it was the people. I couldn’t understand. My head was like… I couldn’t focus and put all that work into my… I couldn’t put it into me. So I couldn’t understand what I was doing. And then you give them a month. Eventually I got it, but it was a struggle. I should have waited until October. And they said I should go back in October. Maybe I could go back in October. I should have waited until then.

Bill Gasiamis (28:22)

Trisha Lyn Winski (28:34)

Bill Gasiamis (28:48)

downtime? Is it the downtime? it too much? Did you have too much downtime?

Trisha Lyn Winski (28:52)

Bill Gasiamis (29:04)

Yeah. How did your colleagues find you when you went back? Did they kind of appreciate what you had been through? Was that easy to have those conversations? What was it like?

Trisha Lyn Winski (29:21)

They were good to me. Everyone was good to me in theory, I couldn’t understand.

Bill Gasiamis (29:56)

Trisha Lyn Winski (29:59)

yeah, there’s a other little things with that, it’s more or less the cognitive function is a problem to do the work.

Bill Gasiamis (30:12)

Trisha Lyn Winski (30:22)

Bill Gasiamis (30:31)

Trisha Lyn Winski (30:49)

Bill Gasiamis (30:52)

Trisha Lyn Winski (30:54)

yeah, I have aphasia. But I can do certain things. And the numbers was going to be, they said it going to, I couldn’t, that’s going to be a problem. And the numbers, I can do all day. But I can’t do other little things.

Bill Gasiamis (31:11)

Trisha Lyn Winski (31:19)

Yeah.

So two things, ⁓ I got fired eventually, and that’s another whole issue.

Yeah, yeah, we’ll talk about that another time. but ⁓ so, but now that I’m here, I could look my computer and it’s fine. I can do it all day. But I really, it’s a long story. think that Warren, my boss, ⁓ Deb, but they definitely like hinder me. ⁓

Bill Gasiamis (31:39)

another time.

Yeah.

Okay. I understand. Well, maybe we won’t talk about it, like, because of the complications with that, but that’s all good. I understand. So, ⁓ do you know, a lot of the times you hear about acceptance and you hear about, ⁓ like,

Trisha Lyn Winski (32:07)

Yeah.

Bill Gasiamis (32:23)

things can go wrong, even though you’re not aware of, you you’re not doing anything to really make your situation worse. You look fit and healthy. Were you drinking, smoking, doing any of that kind of stuff?

Trisha Lyn Winski (33:06)

Bill Gasiamis (33:11)

social smoke social drinker but not smoker

Trisha Lyn Winski (33:15)

I don’t have anything that could cause it. I have nothing that, no blood pressure, no diabetes, It’s hard. Jason talks about it all the time. It’s hard. don’t… It makes me mad. Really mad. Really, really mad that I to stroke. And like, everyone that has it…

Bill Gasiamis (33:24)

Trisha Lyn Winski (33:41)

Bill Gasiamis (33:48)

Trisha Lyn Winski (33:50)

Bill Gasiamis (33:56)

Bill Gasiamis (34:25)

You’ll find the link in the show notes. And now let’s get back to Tricia.

Bill Gasiamis (34:54)

Trisha Lyn Winski (34:54)

Bill Gasiamis (34:55)

⁓ It’s colder, it’s ⁓ sensitive, I’ve got a, and I always have a comparison of the quote unquote normal side, the other side, it’s always. And the comparison I think is worse because it makes me notice my affected side and that noticing it.

Trisha Lyn Winski (35:31)

or yeah.

Bill Gasiamis (35:46)

Trisha Lyn Winski (36:14)

Bill Gasiamis (36:15)

Trisha Lyn Winski (36:15)

Bill Gasiamis (36:18)

Trisha Lyn Winski (36:34)

You had ⁓ the podcast on YouTube and I stumbled upon it on the wise. I watched YouTube and then you came out there and I’m like, so before that I was looking at different, I watched every video, every video on strokes, every video I could possibly type but I watched. I did. ⁓ And then I stumbled upon your stuff and I watched that stuff too.

And that’s why I wouldn’t have thought to call you or reach out to you.

Bill Gasiamis (37:11)

Trisha Lyn Winski (37:13)

Bill Gasiamis (37:19)

Yeah.

Trisha Lyn Winski (37:43)

Somebody, I do think that he’s worse than I could be, but you don’t know.

Bill Gasiamis (38:19)

Yeah. He, his words are more jumbled than yours. And you, if you, you, you’re thinking, if you were like that, you would be probably feeling more sad than you currently are. And you’re assuming that maybe that person is feeling sad, but maybe they’re not, maybe they just got the challenge and they’re taking on the challenge and they’re trying to heal and recover. don’t know. And maybe, maybe they’re getting help and support through that therapy and also maybe psychological help and all that kind of stuff.

Have you ever had any counseling or anything like that to sort of try and wrap your head around what the hell’s going on in your life?

Trisha Lyn Winski (38:54)

I didn’t know what I had to do. I knew I insured that I didn’t know how long it was going to be for me to have that. So I talked to her for a little bit and then I stopped talking to her because I just couldn’t deal with it. I think now I’m getting to the point where I’m going to do it.

Bill Gasiamis (39:37)

I like that. I like what you said there. Cause sometimes it’s early. It’s too early to go through that and unwrap it. Right. And now a little bit of times past, you probably have more conscious awareness of, do need to talk about this and I need to go through and see a certain person. And now I’m going to take that action. It’s been three years and now I can take that action. like it. ⁓ and I like what you said about, you have to feel like you’re connected to that person or you have rapport or

Trisha Lyn Winski (39:46)

Yeah.

Yeah. Yeah.

Bill Gasiamis (40:11)

Trisha Lyn Winski (40:35)

Bill Gasiamis (40:39)

Trisha Lyn Winski (40:42)

I forget what I’m saying. So it’s in my brain, but I can’t spit it out. I get really frustrated at that point. people, I had a stroke, my left hemisphere and my right side went numb. My left hemisphere is all kinds of different, different things that I can’t do. The good news is my left means I can’t like, I can talk to people like this. But the other person and that guy I was talking about, he probably had the right side, his aphasia was.

really bad, really bad. But I was a person who talked like really fast all the time, all the time. And now like, I think part of my brain goes so fast and I can’t spit it out. I get really, I get, it’s, yeah.

Bill Gasiamis (41:38)

as quickly as you can.

Okay, so you know, I’ve spoken to a ton of people who have aphasia. And one of the things they say to me is when they have frustration, their aphasia is worse. So the skill is to learn to be less frustrated with oneself, which means that’s like a personal love thing. That’s self love, that’s supporting yourself, you know, and going.

Trisha Lyn Winski (42:00)

Yeah, that’s a point. That’s a good point.

Bill Gasiamis (42:13)

Trisha Lyn Winski (42:36)

Bill Gasiamis (42:42)

Trisha Lyn Winski (43:03)

Bill Gasiamis (43:12)

how much your body is trying to support you heal your brain. Your body’s trying to get you over the line and your mindset is getting frustrated with itself, which is making things worse. Tweak that and things will get a bit better maybe. I don’t know.

Trisha Lyn Winski (43:55)

You’re 100 % right. ⁓ So whenever I’m not stressed, so two things. I think when I talk to people I don’t know, I always get like nervous about that. ⁓

Bill Gasiamis (44:10)

Trisha Lyn Winski (44:13)

I have to do things over. I’ve realized that like recently, like in the last like maybe month, I have to do things very slow. I have to. And maybe this is God’s way of like, tell me like slow the f down, you’re going too fast. But that’s how I live my whole life. And then all of a sudden, now you’re not going to get up. Yeah, it’s a huge testament. So I can do it right. Not always right.

Bill Gasiamis (45:01)

Trisha Lyn Winski (45:09)

Bill Gasiamis (45:22)

Trisha Lyn Winski (45:22)

Bill Gasiamis (45:51)

Trisha Lyn Winski (46:17)

Bill Gasiamis (46:18)

Trisha Lyn Winski (46:32)

Bill Gasiamis (46:39)