Recovery After Stroke

AVM Burst in the Brain: A Recovery Story of Patience, Aphasia, and Finding Your Way Back

Jennifer Tomscha was 39, driving her three-and-a-half-year-old daughter home from preschool, when an AVM burst in her brain. She felt a wash of dizziness first. Then her vision started collapsing on the right side. She pulled onto a narrow verge on the highway between Greytown and Carterton in New Zealand, tried to reach her husband, got no answer, and dialled 111 instead. When the dispatcher asked what was wrong, she said something she still can’t fully explain: “I think I’m having a 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.

What happens when an AVM bursts in the brain

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.”

The six weeks she can’t remember

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.

The myth of the one-year recovery window

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.

What Jennifer wants other survivors to know

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.

Bill’s book and community

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.

Support on Patreon

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.

Jennifer Tomscha: An AVM Burst in Her Brain at 39, and the Four-Year Climb Back to Herself

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

10:00 Reflections on the Experience

18:00 Long-term Effects and Adaptations

26:45 Identity and Self-Perception Post-Stroke

38:48 The Long Game of Recovery

51:07 The Journey of Recovery

01:03:42 The Evolution of the Podcast

Transcript:

Introduction and Background: AVM Burst in the Brain

Jennifer Tomscha (00:00)

Dr. Woon was my neurosurgeon. And he just said,

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)

Welcome back everybody. I am Bill Gassiomas and my guest today is Jennifer Tomche. In March, 2022, Jennifer was 39 years old living in New Zealand, finishing the first year of a PhD program when something happened to her brain that changed everything.

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 welcome to the podcast.

Jennifer Tomscha (02:14)

Thank you. I’m glad to be here.

Bill Gasiamis (02:17)

It’s lovely to have a local with me. Usually all my guests are from the United States or Canada or the United Kingdom. You’re just a hop, skip and a jump away in New Zealand.

Jennifer Tomscha (02:20)

Yeah.

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)

Where are we from in America?

Jennifer Tomscha (02:54)

they told us to leave the country because it was where it started. So, and we had two kids, so my husband didn’t want to go back to the United States. And so my sister lives in New Zealand. So we moved here and then we just stayed here. mm-hmm. So, yeah.

Bill Gasiamis (03:11)

So

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

Jennifer Tomscha (03:18)

From New York University, they said if you weren’t a Chinese national citizen, they strongly urged us to leave because they just didn’t know how they were gonna manage it. everyone, mean, in China, they had had SARS in the early 2000s, so they had already had it. And so right away, everyone had their masks on. They were ready to…

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)

Wow.

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)

When I saw my stroke happened in March of 2022 and at that time I had been in my PhD program for about a year. And I was just finishing up my research proposal. And so I was doing that during the day and my kids were both at, I have an older son who was in second grade year two. And then I have a daughter who was in preschool. And so my days were I dropped them off at their schools and then I would work for a little while. And then I would.

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)

39 years old at the time as well.

Jennifer Tomscha (05:16)

Yes, was 39.

Bill Gasiamis (05:18)

any signs, any kind of inkling that something was not right.

Jennifer Tomscha (05:23)

I didn’t, weirdly, so I’m trying to think about, my whole life I’ve had this thing where if, especially at just certain points if I hit my, this is maybe nothing to do with anything, but if I hit my elbow or my wrist, then I would pass out. And sometimes I would have like a little seizure while I was passing out. So wasn’t just like a regular fainting, it was like a seizure. And I had some of those in high school and I actually went to the,

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)

I got it. And we’re to have to go back and talk about how it was that when you got hit on your, on your wrist and your elbow, how hard was the hit?

Jennifer Tomscha (07:05)

I don’t know.

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)

Laze, but

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)

Mm.

Bill Gasiamis (09:55)

the AVM when I went and actually had an MRI. So yeah, I went to the hospital, gave them my, rundown of what was happening to me and they were so switched on and they got me in and they did all the tests, but they didn’t find anything because they didn’t know what they were looking for. And there was no obvious sign of bleeding. So they didn’t dig deeper. And I have a friend of mine who is a radiographer who actually did my MRIs

Jennifer Tomscha (09:58)

⁓ really?

Mm.

Reflections on the Experience

Bill Gasiamis (10:22)

when I was in hospital being treated after my AVM burst in 2012. And he said to me, the preventative stuff is very difficult because if you don’t specifically know what you’re testing for, you don’t know how to set up the machine and how many slices that it needs to take and at what resolution. So that when you deliver that to the radiologist and they’re looking at it, can they see an AVM and then pass that on?

Jennifer Tomscha (10:37)

Mmm

Bill Gasiamis (10:49)

that information onto the neurologist. They might even miss it, even though they’re doing MRI. But what Jena is doing, it sounds like they’re specifically going after aneurysms, AVMs, other malformations, and therefore they have kind of this better opportunity to find it. So if somebody is considering getting a preventative scan of their brain, you have to be very specific.

Jennifer Tomscha (10:53)

Bye.

Bill Gasiamis (11:14)

with the team of doctors, radiographers, neurologists, as to what you want them to look for and make sure that they adjust the scan so that it’s fit for purpose.

Jennifer Tomscha (11:25)

That’s interesting. That’s really interesting.

Bill Gasiamis (11:26)

Yeah.

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

Jennifer Tomscha (11:34)

Mm-hmm. I had a good day. I have like lots of notes from my research proposal and I went to pick up. I don’t know why I did it this way actually. I went, my daughter’s preschool is in our town, Greytown, and I went and picked up her first and then I went to get my son. His school is a Montessori school. It’s in one town north. And so I went and got her and we were driving in the car and when I turned onto the highway that connects Greytown and Carterton,

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)

How did you feel about it? I know you did the right things. You nailed it. But how did you feel? What were you thinking? I was completely oblivious to the risk I was at or in.

Jennifer Tomscha (13:14)

Yeah.

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)

you

Jennifer Tomscha (14:22)

It was actually really lucky that I was in the car with my daughter because it made me, I mean, I couldn’t keep driving very well. And so it made me pull over and it made me, I’d have to do something because I wasn’t in town. So I had to like figure out how I was going to manage the situation. And so I was really lucky actually that I was in the car and that I was in a public space where I was easy to find and like I could, so I felt like really lucky that all that happened.

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)

It’s such a

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)

Mm-hmm. Mm-hmm.

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)

Yeah,

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)

Mm.

Bill Gasiamis (16:18)

And that saves time as well. That saves a ton of time.

Jennifer Tomscha (16:21)

Right. Mm-hmm.

Mm-hmm.

Bill Gasiamis (16:23)

and gets them, even though you may have been wrong, right? Gets them looking in the direction because they’re already got that in their mind. And then, well, let’s look at that first and then let’s suss it out. She might be completely wrong. But I walked into the hospital after my, while I was having the third blade and said, I’m having a brain hemorrhage or something like that. And I was in the hospital upright, standing, looking normal and

Jennifer Tomscha (16:27)

Yeah. Yeah, yeah, yeah, that’s true. That’s ⁓

Mm-hmm.

Bill Gasiamis (16:51)

They were looking at me like, okay, what are you on? This guy, this guy must be on something because it doesn’t look like he’s having a stroke. And then I had to try and convince them, but I wasn’t giving them my contact details. So they weren’t able to bring up my record. And all they were saying was just give us your name, give us your name. We’ll put it in the system. We’ll have a look. And eventually they got it out of me and, ⁓ and I was right. But yeah, such a good thing.

Jennifer Tomscha (16:54)

Oh, yeah, yeah, yeah, uh-huh.

no.

Hmm.

you

Bill Gasiamis (17:21)

I love those little bits and pieces that go well together because you often hear I often hear the bits and pieces that didn’t go well and and it turned out differently and how old was your daughter at the time? Yeah, wow.

Jennifer Tomscha (17:30)

Mm-hmm. She was three and a half. And so she was still

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.

Long-term Effects and Adaptations

Bill Gasiamis (18:04)

So was quite a large blade after all of that.

Jennifer Tomscha (18:06)

Yeah, it was

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)

Craniotomy,

Jennifer Tomscha (18:26)

Yeah, they did an emergency cradionomy and they saw that I was bleeding. And then they saw that I had this large left frontal or frontal lobe AVM. So, and then they said that at that moment they couldn’t tackle that AVM. So they, controlled the bleeding and then they, and they left my skull out and then, yeah. And then, then they, they talked to the neurosurgeon and

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)

And

then that surgery happened.

Jennifer Tomscha (19:07)

That happened

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)

Dr. Woon needs to give himself way more credit.

Jennifer Tomscha (21:27)

I know, I know, I also

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)

Wow. 30 hours.

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)

I hope not. mean, I hope, you know, yeah, I don’t think, yeah.

Right.

Mm-hmm.

Bill Gasiamis (22:15)

because I had another MRI, because I had another bout of headaches and all that kind of stuff. still, you know, it hasn’t ended. I still go through all these things. And I mean, I mean kind of, I get emotional when I’m around her and when I’m in the room with her. If she told me to jump off a cliff because there is something positive down there and I would do it. If she said, if she said punch a hole through that wall, I would do it. Like I would do whatever she said because

Jennifer Tomscha (22:20)

no.

Yes.

Yeah.

Bill Gasiamis (22:44)

I just cannot get over the, know, when, you know, when you make a decision, some people, my phone is weird. I’ve never done this before, but you have a piece of fabric and it’s got some lines on it. And you know, if you cut it wrong, that you can’t use that piece of fabric for that pair of trousers anymore. You’ve got to use it for something else. Like that’s a pretty mild problem to happen. Like you cut wrong, you go in the wrong place. You pop that aside and.

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)

Yeah, yeah, yeah.

Bill Gasiamis (23:40)

Do you know, like it’s so

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

Jennifer Tomscha (23:49)

Yes.

Bill Gasiamis (23:50)

with humans and helping people stay alive and be here with their family, be a mom, be a wife, be a daughter, be a member of the community.

Jennifer Tomscha (23:51)

Mm-hmm.

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)

Wow. Yeah, I’ve never thought about that. Why not?

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

Jennifer Tomscha (25:18)

My mom’s like, your brain is so adaptable and flexible and it can do different things. You just have to try doing things, you know, and failing.

Bill Gasiamis (25:26)

And the blood flow

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)

Yes, exactly. Exactly. I just I feel like that makes sense to me. And that’s why if you’re the neurosurgeon, I mean, you really don’t know. Like Dr. Woon didn’t know what was there. But I just feel like maybe my brain when it was developing was like, well, this isn’t a good spot and this other spot isn’t a good spot. So we’ll just do everything in a different place. And the brain is really you can really do that. I think your brains are really plastic in the way that they can order themselves. And so I

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)

Imagine

doing a 30 hour shift on any day for anything.

Jennifer Tomscha (26:34)

No. And the thing about neurosurgery is like you’re in, I mean you’re doing like, you’re in a microscope or whatever doing that little and you’re tying off a little blood vein and I don’t know, it’s nuts, it’s so nuts. mm-hmm.

Bill Gasiamis (26:39)

them.

Identity and Self-Perception Post-Stroke

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)

I didn’t talk to him until June, so that was at the end of March. And then I was in the ICU for a while. then they moved me to Masterton and I did rehab.

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)

It

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)

I think so. I think, or maybe, I always think like maybe you can only manage so much. like at that time I had my front part of my skull was gone because it had been taken out when they did both my surgeries. And so I had to wear like a rugby helmet or whatever when I walked. But otherwise I would sit in my room and it looked terrible. It’s just so terrible.

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)

allow yourself to kind of observe your state, your brain condition.

Jennifer Tomscha (30:02)

Yes.

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)

100%, they can make doctors and neurosurgeons do a 30 hour surgery, find that part, fix it, ta-da-da-da-da, do all those things, but they can’t make a helmet for God’s sake look half decent after they’ve taken your skull out. Like as if it’s bad enough, have skull missing and then they put this terrible looking thing over your head.

Jennifer Tomscha (31:11)

No.

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

Bill Gasiamis (31:22)

And I know for women

like hair is a big deal and become.

Jennifer Tomscha (31:27)

It was really,

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)

I never would have told you that your hair didn’t look good, but my favorite hair is brunette curly hair. Yeah. My wife is a brunette naturally and she has curls in her hair and she straightens it all the time. I haven’t seen her brunette curly hair for 30 years.

Jennifer Tomscha (31:57)

Thank you.

⁓ yeah.

no.

Bill Gasiamis (32:13)

I’m like, woman, that’s what I like. Like that’s my thing. you stop straightening your hair, but I can’t get it to stop. ⁓

Jennifer Tomscha (32:20)

Yeah, that’s fine. Everyone has

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)

I’m trying. am. know exactly what you mean. One of the biggest things is identity is a big, big thing. And I don’t talk about me so much. I’ll talk about what happened to me, my stroke journey, but I don’t really give people a look behind the curtain. You know, sort of really understand what’s going on. This is just all a facade. And one of the challenges that I have is this painting company that I started 20 years ago was the main source of income. And it stopped abruptly seven years in when I became.

Jennifer Tomscha (33:02)

Hmm.

Mm-hmm.

Great.

Bill Gasiamis (33:17)

and it sort of still kept bubbling along. And then I got back to it in 2019 because my clients were still calling me and I was well enough after seven years of going through stroke and all the stuff of surgery, learning to walk again and all that. I was good enough to sort of get back into it. And of course in 2019, I only had six months and then we were in lockdown.

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)

Yeah.

Mmm.

Hmm.

Bill Gasiamis (34:36)

is not it’s not going to be a sharp dip and then it’s going to be a big spike of work and demand and all that kind of stuff. this podcast has been my saving grace every time I’ve needed to occupy myself with a project and make it so that I’m not thinking about me. The podcast was there. I did. I did an interview. It got me over the line. But now the biggest void that’s going to occur is not that I’m going to

Jennifer Tomscha (34:47)

Mm-hmm.

Bill Gasiamis (35:05)

potentially not have work in this field and after shut it down, which is gonna be fine if I do that, I’m okay with that. I’ll kind of pass it on to my younger son who’s looking to do some work in a similar space. I’ll give him the phone number and he’ll be able to take those types of inquiries and then he’ll do it on his own, like very small, the way I started at the beginning. And is that I’m gonna have all the time in the world.

Jennifer Tomscha (35:23)

Mm.

Bill Gasiamis (35:29)

on my hands to do the thing that I’ve been avoiding doing because I had this business that relied on me and the thing was to do public speaking. Right. And to actually do it the way that I’ve wanted to do it for more than a decade, which was to talk about the topics that I want to talk about, which no one’s talking about post-traumatic growth, overcoming trauma, how that’s applicable in organizations.

Jennifer Tomscha (35:38)

yeah, yeah,

Mmm.

Bill Gasiamis (35:56)

how to

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)

Mm.

Bill Gasiamis (36:39)

Don’t let that be your title. It’s bizarre, it’s weird, like it’s strange, it’s too long and all these things. So I did it. And of course, the first time I spoke about it on YouTube, one of the first comments was a negative comment on my YouTube channel. It’s like, ⁓ okay. My God, that’s a kick in the guts.

Jennifer Tomscha (36:44)

really?

⁓ yeah.

Bill Gasiamis (37:03)

So those little kicks in the guts that I’ve had along the way have been few and far between, but they’re the ones that seem to persist the most. And they stay in that part of your head, which says, you know, that public speaking gig, you’re probably going to do the first one and they’re going to say you were terrible. And then you’re to feel all sad at 52 about, you know, yourself and all these things.

Jennifer Tomscha (37:15)

Yeah.

you

Bill Gasiamis (37:29)

how you’re going to overcome that emotionally and mentally and all this kind of stuff. It’s like, Bill, relax. You’re gonna have time to build your new career at 52. You’re gonna have time to do it. So that’s like, all right. I find myself getting pushed into a corner and only then responding with, all right, all right, I better step up again. I better do this again.

Jennifer Tomscha (37:33)

Mm-hmm.

Yeah.

Mm-hmm.

Mm-hmm. Mm-hmm. Yeah.

Bill Gasiamis (37:58)

Very

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)

You

The Long Game of Recovery

Bill Gasiamis (38:27)

a podcast, a book.

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)

Bye!

Bill Gasiamis (39:20)

after stroke, you know, I don’t tell people I’m an author. Still, this book has been out for three years. I’ve had amazing reviews. I’ve had a couple of, you know, negative reviews and that’s okay. I’m not, I’m not an intellectual. I haven’t, I’ve never studied how to write literature, any of that stuff. And it’s sold about seven or 800 copies just through the podcast.

Jennifer Tomscha (39:21)

Mm-hmm.

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)

I feel like to like I don’t promote it. I don’t tell anyone about it just in the podcast.

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

Jennifer Tomscha (39:56)

You

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)

articulating

Jennifer Tomscha (42:28)

Yeah, articulating what I mean and yeah, I feel like I can’t, I can’t say things as artfully or as proficiently as I used to. So I don’t know, this woman who is getting her PhD at Vic too, she’s like, she studies how people learn to read. And she was like, if you’re having problems with academic writing,

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)

Yeah,

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)

Mm-hmm.

Yeah.

Bill Gasiamis (43:51)

to get something out of it. Like, okay, what is this academic saying about this topic? But that’s not paying attention to the structure of how it’s written. That’s a different filter.

Jennifer Tomscha (43:55)

Mm-hmm.

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.

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)

Mm-hmm.

Bill Gasiamis (44:49)

turn the corner again, you’ll see that there’s more and more improvement. It’s really important for people to hear this, who are three, two, one, five, six years in, there’s still heaps of healing and recovery to come. So it’ll happen.

Jennifer Tomscha (45:07)

Yeah, that was something that my husband and I, in my first year after my stroke, he would be like, go to the gym. And he did. He, I went to the gym and I, had me lift weights and he wanted me to like exercise. And he was like, what are you doing to improve your mind and your body over this first year? And I was like, I’m, I’m again, I was like, I’m fine. I’m really fine. And, and, ⁓ he thought I wasn’t doing enough.

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)

He wanted it to be more

masculine.

Jennifer Tomscha (46:01)

Yeah, I guess. And he’s not very masculine guy. I mean, he’s a masculine guy, but he’s like, he was just he just wanted to see me sweating it out or doing the really see my focus. And I just yeah. And that has been an issue because he’s like, yeah, he’s just like, are you going to work again? I was like, yes, I’ll work. I just don’t know what I’ll do. And I don’t know if I could do a full eight hour day right now. I still take a nap every day in the afternoon. So

But yeah, it’s just, don’t, yeah, so.

Bill Gasiamis (46:34)

It’s

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

Jennifer Tomscha (46:40)

No, I know. Thank goodness. Yeah, yeah, yeah. Actually,

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)

I and you, and if you’ve got an imagination, a wild imagination, you could turn it into something completely way worse than what it is. And if you’re ignorant, which most family members and caregivers are, let’s face it. And that’s okay. Then you do the other thing. You play it down and you assume she should be going harder than that or

Jennifer Tomscha (47:11)

Yeah.

Mm-hmm.

Bill Gasiamis (47:19)

If I was, if it was me, I’d be doing that. But your brain has actually been injured and in that space, perhaps where motivation is for some people. And there is no way that you can make that person more motivated by willing them on or telling them to go to the gym or whatever. That could actually be missing the motivation part. So there’s a whole bunch of things that caregivers and family members miss. And it’s for me, it’s when I’m surrounded, when, when the people that are around me are

Jennifer Tomscha (47:33)

Mm-hmm.

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)

Mmm, yeah, yeah.

Bill Gasiamis (48:14)

And we can talk about things that are not important and everything’s fine. And it’s kind of like head in the sand. It’s a, you know, one step, one emotional step removed from the actual goings on. And it kind of also helps me strangely enough, because then I don’t have to deal with their inability to handle actual life and the real things that are going on.

Jennifer Tomscha (48:39)

Mm. Yeah.

Bill Gasiamis (48:43)

that can just be living in La La Land and I don’t have to deal with that level of complexity. So it’s kind of, they’re both situations are helping me in a way. Whereas at the beginning I was taking that negatively. The thing I do, the thing I would like to do is challenge caregivers to listen to the podcast, especially of the spouse who I’ve interviewed.

Jennifer Tomscha (48:50)

Yeah.

Yeah, that’s true.

Bill Gasiamis (49:09)

You know, and then

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)

Hmm.

Right, right.

Bill Gasiamis (49:36)

be curious about where that person’s coming from, not how you’re feeling about where they’re coming from. And that’s what family members and caregivers do. They make it about them. And I had to say a few times to people in my circles, like, it’s not about you.

Jennifer Tomscha (49:43)

Right.

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

Bill Gasiamis (49:56)

It’s actually really about me. cannot walk and I can’t use my left hand. It’s not about you. Like I know you woke up with a numb leg one day because you slept on it wrong, but it’s not the same.

Jennifer Tomscha (50:05)

Yeah, yeah, yeah.

Yeah, yeah, yeah. That’s funny. Yeah.

Bill Gasiamis (50:14)

My

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)

higher.

Bill Gasiamis (50:40)

My foot was stuck underneath the rest and we had a laugh. that kind of like, that’s one of those, if those people were there and they saw that, they would realize like, it’s not about your numb leg when you slept on it weird one night. take your stuff and just, you know, park it for now. So it’s interesting. That’s kind of why I think I do this podcast. I think it’s for those

Jennifer Tomscha (50:44)

Yeah, yeah,

Mm-hmm.

Mm-hmm.

The Journey of Recovery

Bill Gasiamis (51:08)

people if they, I’ve never told them that they should jump on, but if they, for example, get curious one day and they want to know what it’s like to be in Bill’s head, pick one of the 400 episodes. Just have a listen.

Jennifer Tomscha (51:09)

Mmm.

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)

One of the things I learned from my wife and my brother, my brother is my biggest nemesis. You he’s older and he’s the most loving guy. He’s the most supportive guy, but he has a weird way of doing it. Just, you know, we’re different characters, right? So he just is a bit different in the way. one, one of the things my brother said was that I picked up, I reckon it was five, six years ago is he’s in it for the long game.

Jennifer Tomscha (52:03)

Hmm.

Bill Gasiamis (52:04)

When I was young, I had 20 jobs in 10 years. He said two jobs in 40 years or 30 in 30 years. So he just chips away, works away, works away, works away. This is an analogy, right? But also a true story. My wife started her, her, her master’s in psychology. She only started that a few years ago, but the whole.

Jennifer Tomscha (52:08)

Hmm.

Hmm.

Bill Gasiamis (52:28)

journey to get to the Masters of Psych started in I think late 2011 or early 2011, about a year before I ended up in hospital. She is just now finishing the last part of her Masters degree and she found a job literally a week ago in her field two days a week.

Jennifer Tomscha (52:35)

Mm.

Mmm.

⁓

Bill Gasiamis (52:56)

to work as a provisional psychologist so that she can get the 1500 hours of work in the field before she actually gets her actual full psychology license. And I’m like, dude, I get it. So what you’re telling me is that if you just start and never stop, you’re gonna see some kind of progress. And I apply that to…

Jennifer Tomscha (53:08)

Right.

That’s amazing.

Mmm. Mm-hmm.

Bill Gasiamis (53:27)

stroke recovery. I know that people are dealing with far more deficits that perhaps you and I show visibly and that their hand may not specifically work the way that it always that they wanted it to work or that the way that it worked before. But that doesn’t mean the brain’s not continuously continuously healing that part of the brain might be gone. But as far as healing the parts around the brain that are still there, that’s continuing.

Jennifer Tomscha (53:28)

Uh-huh.

Mm-hmm. Mm-hmm.

Bill Gasiamis (53:58)

And if, and, and one of the questions that I have for people is like, is what I’m doing supporting my recovery or is it hindering my recovery? Because I’ve met stroke survivors who have gone back to the smokes, who have gone back to alcohol. And if you’re doing things that are getting in the way of recovery, then you’re not allowing the brain to continuously do what it does best, which is overcome challenges, rewire.

Jennifer Tomscha (54:05)

Mmm.

Bill Gasiamis (54:25)

find new ways around, know, develop new neural pathways and adapt. And that’s kind of where I think it’s at adaption, right? And the great thing about understanding these days about neurodiversity and understanding what somebody with ADHD goes through is the one skill they’re really, really good at is adaption.

Jennifer Tomscha (54:31)

Mm-hmm.

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

Bill Gasiamis (54:49)

because and people with dyslexia. my God, like some of the biggest, most wealthy billionaires on the planet had dyslexia. Richard Branson is a classic example of that. Yeah. And they adapt. They find a way to somehow overcome the normal world and be weird in the way that they see letters and what letters do and how they move on a page and all that kind of stuff because their brain adapts and they can just continuously improve their adaption strategy.

Jennifer Tomscha (54:57)

really? didn’t know that.

Mm-hmm.

Bill Gasiamis (55:17)

to get to a point where no one knows that they have this condition. So that’s what I’m really passionate about. That’s why the podcast exists. I’ve interviewed in my 400 episodes, I’ve certainly interviewed stroke survivors who I’ve had improvement 10, 11, 12, 13 years post stroke, got a finger movement back. Yeah, got sensation back, something rewired. So yeah.

Jennifer Tomscha (55:19)

Right.

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)

Absolutely. I had an

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)

Really.

Bill Gasiamis (57:16)

So it took off so much of her. impacted her, the way she feels on one side of her body, how she feels on the other side of her body, her eyes, her balance, a whole bunch of things. And she was doing it hard. Like recovery was really hard. And she had been an actress amongst other things. And she was 33. Again, she had an AVM.

Jennifer Tomscha (57:29)

Wow.

yeah,

Bill Gasiamis (57:46)

burst or some other malformation and the and the challenge back then for me, I was early on in the podcast journey as well. And in the stroke recovery as well was me kind of understanding what happens after like, long does it take? What happens that are and Maggie is the classic. I started a project. It was called the great now what?

Jennifer Tomscha (58:04)

Mmm.

Bill Gasiamis (58:14)

in 20, I think she started in 2017, 2018. This is only a short number of years after her very serious stroke where you would have forgiven her if she didn’t. You would have thought, yeah, makes sense. You were dealing with all these deficits. And the project was to tell the story of stroke from a stroke survivor’s perspective, because there wasn’t a real story where somebody was giving that.

Jennifer Tomscha (58:29)

Right.

Mm.

Bill Gasiamis (58:44)

that version of it and she wanted to make sure that it was an accurate retelling of what stroke is like for somebody to go through what she went through. That project hasn’t completed yet.

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

Hmm.

Bill Gasiamis (59:27)

documentary together and that’s the thing. And Maggie talks differently than before, like more, better than before. Her sentences come out differently, her voice sounds differently, her eyes focus better. ⁓ Her head doesn’t move as much because it used to involuntary move. And she spoke about some of the other deficits that have resolved, that have.

Jennifer Tomscha (59:42)

Wow.

Bill Gasiamis (59:51)

kind of got less worse than what they were. And also she spoke about how she’s adapted and overcome and changed. That’s 11 years since stroke. Like it never ever stops. I’ve been doing this. I’ve been going through my journey since February, 2012. I’m still talking about it.

Jennifer Tomscha (1:00:06)

⁓ Okay.

Yeah, yeah, yeah.

Bill Gasiamis (1:00:10)

And it’s so bizarre. Like I’ve never done a project that’s lasted this long other than the painting company. And then I did that out of necessity, work, money, you know, all that kind of stuff. This is a completely different experience. So I want to encourage people to play the long game like my brother does.

Jennifer Tomscha (1:00:18)

Right, right.

Mm.

Bill Gasiamis (1:00:29)

and my wife and Maggie. And if you play that game, you’ll get through the dips, the troughs in this journey. You’ll get through them a lot more calmly and easier. And when you do that, you recover and you rest better and your brain heals better. And it’s just a different way to go about it.

Jennifer Tomscha (1:00:47)

Mm-hmm.

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)

Yeah.

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)

type in aphasia for your condition, there’s somebody doing therapy, 100%.

Jennifer Tomscha (1:02:13)

Interesting.

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)

So

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)

Mm-hmm.

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

Bill Gasiamis (1:02:47)

Yeah, convoluted,

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)

huh.

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

Bill Gasiamis (1:03:02)

I had no idea what I was doing. I didn’t even

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)

Right.

You

The Evolution of the Podcast

Bill Gasiamis (1:03:29)

who came across this weird story that other people were saying that they thought that stroke was the best thing that happened to them. And I thought we’ve got to tell this story. There’s a 10 people I’ve got to tell that story because why the hell are they saying that? And they had these 10 things in common. And if I could bring those 10 things to you and you did that, then maybe, not the experience of stroke because I totally don’t think that was the best thing that happened to me, but the lessons that come.

Jennifer Tomscha (1:03:54)

You

Bill Gasiamis (1:03:56)

and the growth that’s possible and the new opportunities that could open.

Jennifer Tomscha (1:04:01)

Mm-hmm. Mm-hmm.

Bill Gasiamis (1:04:02)

That’s been the best thing that happened to me. Cause the trading life, the painting life has proven to be the same the next 13 years as it was the first seven years. Somebody either wanted a house painted or a wall painted, or they didn’t want one painted. They either wanted me to pay that much money for it, to pay me that much money for it, or they didn’t want me to pay that, be paid that much money.

Jennifer Tomscha (1:04:13)

Right, right, right, right.

Mm-hmm.

Right.

Right.

Bill Gasiamis (1:04:28)

Nothing’s changed there. Everything has changed and all the opportunities came outside of that. And there’s this thing in business, the opportunity cost. If you’re focused on a particular task and you’ll think you’re kicking goals and you’re loving that, and you’re doing that for something that’s substandard to you, the return is substandard to you, then not only are you doing something that you don’t love, that you don’t enjoy,

Jennifer Tomscha (1:04:29)

Mm-hmm.

Mm-hmm.

Bill Gasiamis (1:04:55)

that you’re not making enough money for all that kind of stuff. But you’re also taking your resources away from the other thing that you could be doing that could be bringing you more money, more joy, more meaning, more purpose, more whatever. The opportunity is lost as well as I’m not getting satisfaction over here. And kind of that’s like another way to think about how you’re doing your current life and what recovery

Jennifer Tomscha (1:05:03)

Mm-hmm.

Bill Gasiamis (1:05:23)

or when you get to the fork in the road, like why you might take the other path.

Jennifer Tomscha (1:05:29)

Mm-hmm. Mm-hmm. Yeah, that makes sense. Yeah, definitely. Yeah, I have my ⁓ oral exam for my PhD is next Thursday. So I’m like, I was just thinking about like, hopefully I pass it and then I’ll have my PhD or I’ll have to probably do some revisions on my thesis, but then I’ll have my PhD. And then I don’t know what we’ll do. You know, it’s just like, don’t, I don’t know what I’ll do.

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)

Yeah. For me,

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)

He would just keep in touch and then it came to my rehab hospital after surgery. And I was just amazed by this guy. Just, we really didn’t have much of a connection. Anyhow, I call him Mike the marketing guy, cause he’s in marketing. And he said to me, so, know, with all this stuff that you’re telling me about how you’re going to go about your recovery and how you’re going to heal your brain and all that kind of stuff.

Jennifer Tomscha (1:06:53)

Mm.

Bill Gasiamis (1:07:11)

Because what do you want to do with that information? So I’d love to tell other people about it, you And he goes to me, how, do you want to share that? I said, I could go to my local community here where I live and I could talk to people, you know, at the, at the town hall and I can meet people locally. He said to me, have you ever heard about this thing called the internet?

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)

Yeah, yeah, yeah, yeah.

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)

The first 10, maybe more, certainly the first kind of 15 people were not stroke survivors. And I was just building stories of people had overcome difficulties in life. And they may have been, cancer, the death of a loved one, all kinds of different things, but it wasn’t really resonating with me. And it wasn’t resonating with people who I was telling about this podcast.

Jennifer Tomscha (1:08:20)

⁓ okay.

Right.

Bill Gasiamis (1:08:40)

It was so early that I didn’t really think I wasn’t doing well. And I was really unwell also. My head was still messed up and I was still recovering.

Jennifer Tomscha (1:08:50)

Yeah, I know.

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

Bill Gasiamis (1:08:55)

Yeah.

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

Jennifer Tomscha (1:09:02)

Okay.

Okay.

Bill Gasiamis (1:09:07)

When was it that I decided to start doing an episode a week? I think around 2018, 2019, I started, I decided I’m going to do episode a week. But, but what changed was at around episode 20, I had the aha moment that my podcast is not about all those other people. It’s about stroke survivors. Yeah. And then when that happened, I started to get really good momentum and then people started to listen and actually continue at least.

Jennifer Tomscha (1:09:12)

Okay.

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

Bill Gasiamis (1:09:35)

listen and reach out and tell me that they loved it and all that kind of stuff. Like that’s when it turned and then it

Jennifer Tomscha (1:09:41)

Because my husband and were just talking about this. He’s also figuring out what he wants to do for work. And he was like, he’s just trying all these different things. So he’s doing some Instagram reels. And he was like, I’m just going to do 10 of them or 15. And then we’ll see. He was like, but I’m going to let myself do a certain number.

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)

Yeah, you kind of

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)

Mm-hmm. Mm-hmm.

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)

Thank

Yeah.

Jennifer Tomscha (1:11:02)

Not every week, but once a month, I’ll just see who’s on. I really love it. And it’s so wonderful that you’re doing this for people. ⁓

Bill Gasiamis (1:11:11)

Yeah. I,

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)

you

Hmm.

Mm-hmm.

Bill Gasiamis (1:11:38)

I don’t

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)

that were willing to talk about it. And we didn’t have, when I started this whole journey in 2012, my gosh, there was nothing out there for stroke survivors, nothing. It’s not sexy. It’s not sexy like all these cancer awareness things and multiple sclerosis and MND.

Jennifer Tomscha (1:12:09)

I

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)

No, not at all.

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)

Mm.

Bill Gasiamis (1:13:33)

who all will donate money to you name the cause that the particular footballer is promoting. And as if there haven’t been footballers and people of that kind of level of influence who have had a stroke, like as if they haven’t been those people. But there is this lack of ability to kind of bring those people into that awareness space where they’re doing a great job.

Jennifer Tomscha (1:13:37)

Mm.

⁓ yeah, yeah,

Right, right.

Bill Gasiamis (1:14:00)

of raising awareness. There’s a lack of people who are able to do that, but we can somehow do it for all these other conditions, which I love. I’m, which is amazing. I just feel like something has to change. So anyway, that’s why I kind of do this in a way. It’s like to just fill that gap

Jennifer Tomscha (1:14:00)

Mm. Mm-hmm.

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)

No, what’s the

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)

yeah.

Hmm.

Bill Gasiamis (1:15:06)

They’re doing it tough right now.

Jennifer Tomscha (1:15:07)

Yeah, I think I would say you can rest you can take a nap, you know, that’s really helpful. Like you can be as slow as you want it to be and that’s also okay, but don’t give up. just keep going I think is the main thing, but go as slower, as fast as you want to and it’s okay.

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)

On that note, thank you so much for joining me on the podcast.

Bill Gasiamis (1:15:51)

That was Jennifer Tomche speaking with me from New Zealand four years after an AVM burst in her brain and changed the course of her life. I wanna thank Jennifer for her generosity, for her patience and for her honesty in this conversation. There are very few people who can articulate what it feels like to lose access to their own brain it. And Jennifer is one of them.

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.

Brainstem Stroke Long-Term Effects: What 11 Years of Recovery Really Looks Like

Maggie Whittum — 2025
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.

What a Brainstem Stroke Actually Does to the Body

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:

Hemiplegia on the left side — weak and uncoordinated movement, no sensation

Hypertrophic olivary degeneration — constant, involuntary eye movement

Gaze palsy to the right and nystagmus to the left

Right-side facial palsy from cranial nerve damage

Chronic neuropathic pain — burning, freezing, crushing, and severe pins and needles on the left side of the body

Significant fatigue, which shapes how she works and creates

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.

When Words Are Not Enough: The Barbie Art Project

“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.

The Five-Year Mark — and Why It Matters

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.

The Great Now What: A Documentary Built in Stroke Time

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.

Identity After Brainstem Stroke: Becoming Someone New

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.

What This Episode Is Really About

Brainstem stroke long-term effects are not just physical. They are relational, psychological, vocational, and existential. Maggie Whittum’s story, eleven years of it, makes that clear without sentimentality and without false resolution.

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.

Life After Right MCA Stroke: Why You May Not Feel Like Yourself After Stroke

Introduction

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.

What Is a Right MCA Stroke?

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

Spatial awareness

Attention and perception

Emotional processing

Awareness of the left side of the body

Because of this, many stroke survivors experience:

Left-side weakness or coordination issues

Changes in emotional regulation

Difficulty with awareness or attention

Fatigue and cognitive overload

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.

The Part Nobody Talks About: Emotional Recovery After Stroke

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:

“I survived, so I should feel grateful”

“I’m improving physically, so I should feel better”

But instead, they feel:

Flat

Overwhelmed

Disconnected

Not like themselves

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

Why You May Not Feel Like Yourself After Stroke

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:

Your emotional responses change

Your energy levels fluctuate

Your tolerance for stress is different

Your interests and behaviours shift

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.”

Physical Recovery Doesn’t Mean Full Recovery

From the outside, Heidi is doing well.

She can:

Walk independently

Ride an electric bike

Cook again (after initially losing the desire)

Participate in social activities

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:

Strength

Mobility

Independence

It’s also about:

Emotional stability

Sense of identity

Feeling like yourself again

And those things often take longer.

What Helps During Life After Right MCA Stroke

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

1. Movement and Routine

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

2. Community and Connection

After her stroke, Heidi actively sought connection:

Joining a women’s circle

Returning to church

Talking to strangers

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

3. Accepting That Recovery Is Ongoing

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

Recovery doesn’t follow a fixed timeline.

It continues.

4. Allowing Complexity

You can feel:

Grateful to be alive

Frustrated with your progress

Hopeful and discouraged — at the same time

All of these can exist together.

The Search for Happiness After Stroke

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:

Create space for it

Support the brain as it heals

Build small moments that gradually reconnect you to yourself

Sometimes that looks like:

Trying new therapies

Talking to someone who understands

Rebuilding routines slowly

And sometimes it simply means giving yourself time.

A Different Kind of Strength

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:

Get her learner’s permit at 44

Step into new social situations

Push beyond the limits she once accepted

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

Conclusion

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.

Heidi’s Stroke Story: Surviving Physically, Struggling Emotionally

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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Highlights:

00:00 Life Before Stroke: A Journey of Transformation

04:45 The Day of the Stroke: A Life-Changing Event

09:39 Hospitalization and Recovery: Facing New Realities

15:17 Driving and Independence Post-Stroke

19:04 Emotional Changes and Mental Health

23:52 Finding Meaningful Connections

28:13 Life After Right MCA Stroke

36:12 Overcoming Limitations and Embracing Change

39:30 Travelling Beyond Borders

40:23 Transforming Personal Identity

44:15 Innovations in Stroke Treatment

45:17 The Journey to Happiness

47:33 Exploring Alternative Therapies

51:14 Lessons Learned and Moving Forward

Transcript:

Life Before Stroke: A Journey of Transformation

Bill Gasiamis (00:00)

You’re not happy.

Do know what you’re not happy about?

Heidi Loveridge (00:03)

No, it doesn’t feel like it’s anything specific. Like, I know I can do everything I need to do or want to do. So actually at Christmas time, I did try cross-country skiing. It was really hard.

Bill Gasiamis (00:09)

Mm-hmm.

Was it fun?

Heidi Loveridge (00:14)

Not as fun as it should have been. It was more hard than fun.

Bill Gasiamis (00:18)

Hello everyone, welcome back to the podcast. If you’ve ever felt like you’ve survived your stroke, but something still isn’t right, like you don’t quite feel like yourself anymore, then this episode is going to resonate with you. Today I’m speaking with Heidi Lovridge who experienced a right MCA stroke at 43. Physically she’s made incredible progress, but emotionally things have been a lot more complicated. And what’s really powerful about this conversation is how honest she is about that. Before we dive in.

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 Leveridge, welcome to the podcast.

Heidi Loveridge (01:13)

Thank

you.

Bill Gasiamis (01:14)

you tell me a little bit about before stroke? What was life like? What were you up to? What kind of things did you enjoy doing?

Heidi Loveridge (01:23)

Yeah, so I like, I love being outside. And I used to before my stroke, I was a total introvert. And my biggest hobby is knitting. And so like, I used to always knit, I used to bring knitting to meetings and stuff because I could, or parties so I could avoid chatting. But now I love talking to strangers. So I used to be a total introvert before my stroke too. But now a stranger is just somebody I don’t, it’s not my friend yet. Who I haven’t met, a friend I haven’t, a stranger is a friend I haven’t met yet.

Bill Gasiamis (01:50)

Is that a, ⁓ a mindset shift? that a life’s short thing? Like, is it?

Heidi Loveridge (01:59)

I know. I just suddenly don’t care what people think about me anymore. I can do hard things now, I know. Yes, so hiding before, I…

Bill Gasiamis (02:05)

and before you cared deeply

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

Heidi Loveridge (02:09)

Yeah,

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.

Okay, were you working back then?

Heidi Loveridge (02:55)

Yes, I was working, so I do procurement. So I buy stuff for the local transit agency.

Bill Gasiamis (03:03)

Okay. And you, how many?

Heidi Loveridge (03:04)

And I have lots of dogs in my life.

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)

Okay, and I’m curious, can I hear one of them painting right now?

Heidi Loveridge (03:20)

there’s a fan, there’s a filter beside me. I’ll turn it off. An air filter. my husband is in the garage in the other room and he sounds like he’s like sanding something.

Bill Gasiamis (03:31)

It’s all happening. It is what I’m hearing. I’m going to be rude and I’m going to wonder whether or not, we ask him to stop doing that for a little bit?

Heidi Loveridge (03:32)

That must be what you’re hearing.

Yeah. Dave!

Bill Gasiamis (03:44)

Yeah, is too. It’s not going to make for a good video.

Heidi Loveridge (03:48)

hearing me. Here I’ll send them a text message.

Bill Gasiamis (03:51)

Okay. Okay.

apologize profusely for me.

Heidi Loveridge (03:54)

Yes,

I will.

Bill Gasiamis (03:57)

I hate to get in the way of a man and his garage or shed.

Heidi Loveridge (04:00)

All right.

in the garage.

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

Bill Gasiamis (04:07)

What’s he making?

Heidi Loveridge (04:09)

I don’t know.

Bill Gasiamis (04:10)

Hahaha

Heidi Loveridge (04:12)

He tends to collect bits of and just makes things depending on what he’s feeling like.

Bill Gasiamis (04:18)

Yeah.

Heidi Loveridge (04:19)

Yes. So I think that yeah, yes, he’s read it now. He says sorry. Thanks Dave. ⁓

Bill Gasiamis (04:21)

I wonder if he might have got the message.

Yeah.

⁓ So you’re a dog mama.

Heidi Loveridge (04:31)

Yes. Yes.

Bill Gasiamis (04:33)

or

a caregiver, dog caregiver.

Heidi Loveridge (04:36)

Yes. Yes, I have the joy of participating in the lives of dogs.

The Day of the Stroke: A Life-Changing Event

Bill Gasiamis (04:41)

Yeah. Okay. So the work was a busy kind of work life. Was there a lot happening?

Heidi Loveridge (04:47)

Yeah,

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)

Do you have it? Okay.

You experienced a little bit of depression.

Heidi Loveridge (05:09)

Yeah. Yes, I’ve cried a lot since my stroke. And I’ve actually seen the love of so many strangers. It’s surprising how many people are willing to give you a hug when you’re crying in public.

Bill Gasiamis (05:10)

Do you have a sense?

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)

So I think it’s related to my brain injury.

Bill Gasiamis (05:33)

Okay, and how are you working with it?

Heidi Loveridge (05:33)

And apparently it’s common

with the right MCA stroke.

Bill Gasiamis (05:37)

⁓ okay. And how do you kind of work with it or deal with it or manage it?

Heidi Loveridge (05:45)

Well, I walk a lot. Yes, going for walks is how I help myself.

Bill Gasiamis (05:52)

Okay. Is it just getting out fresh air? Is it just getting the body moving? it?

Heidi Loveridge (05:55)

Yeah, it’s

moving and fresh air, I’m sure.

Bill Gasiamis (06:00)

Okay. And then does knitting have a role to play in that? Because even though we’re chatting on a podcast, you’re still knitting. So I imagine knitting is kind of something that you always do everywhere all the time.

Heidi Loveridge (06:08)

now.

Yeah,

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

Bill Gasiamis (06:17)

And it was, was it just

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)

All my yarn over there.

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)

Okay, okay. So are you somebody that doesn’t like spare time? Can you not sit quietly somewhere in a room and contemplate life or read a book or?

Heidi Loveridge (07:04)

⁓ I used to. Now I can

read books now still.

Bill Gasiamis (07:10)

huh. Okay. So a very interesting person. You’ve gone from being an introvert in the house, ⁓ to having had a stroke and things have shifted. You like connecting with people. You don’t mind getting a hug from strangers and you’re out and about as much as you can.

Heidi Loveridge (07:17)

Yeah.

Yes, no.

Yes, exactly.

Bill Gasiamis (07:30)

Tell me about the day of the stroke. What was that like?

Heidi Loveridge (07:33)

Well, I was falling. My balance was off that day and Dave kept on, I kept on having to come in to save me, pick me up off the ground. There’s actually a big dent in the garbage can in my bathroom that was from my head doing it.

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)

Uh-huh.

Heidi Loveridge (08:04)

But then he called the nurse’s health line and they said, I think she’s having a stroke. And then, so we called the ambulance and then the ambulance then knew that I was suspected for a stroke. So they took me to the proper hospital where the stroke unit is.

Bill Gasiamis (08:18)

Did you have any sense in those days leading up to it that something was off, things weren’t right?

Heidi Loveridge (08:25)

No, nothing big, no. Though apparently I thought I had a migraine headache in the days before.

Bill Gasiamis (08:33)

Was a migraine headache common?

Heidi Loveridge (08:35)

Yes, yeah, that’s because when I got my stack of files from the hospital through freedom of information and that apparently is one of my risk factors, migraines with aura.

Bill Gasiamis (08:47)

is a risk factor for stroke down the line.

Heidi Loveridge (08:49)

Yes,

yeah.

Bill Gasiamis (08:51)

Wow. Okay. And you used to, migraines with aura are pretty big deal.

Heidi Loveridge (08:52)

Yeah, that and oral contraceptives.

Yeah.

Bill Gasiamis (08:57)

migraines with aura are pretty intense experiences, they?

Heidi Loveridge (08:59)

Yeah.

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)

What was it like to experience a migraine like that?

Heidi Loveridge (09:12)

So I don’t know, that was my first sign that I was gonna have a stroke one day.

Bill Gasiamis (09:12)

Mm-hmm.

Maybe not.

Heidi Loveridge (09:17)

Maybe not though, yeah. Yes.

Bill Gasiamis (09:19)

And

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

Heidi Loveridge (09:23)

Yeah. Yes,

I was. And no longer. Never again.

Bill Gasiamis (09:28)

Okay.

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

Hospitalization and Recovery: Facing New Realities

Heidi Loveridge (09:34)

No.

No, I was just having hypercoagulability of my blood.

Like I actually had blood clots in my lungs too.

Bill Gasiamis (09:43)

Right. There wasn’t any, any physical collision altercation with a piece of furniture or anything like that.

Heidi Loveridge (09:49)

⁓ nothing.

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

Bill Gasiamis (09:56)

Yeah. But that contraceptive pill comes up so many times with people who’ve had a stroke.

Heidi Loveridge (10:01)

Yeah.

Yeah, but they can’t test for that.

Bill Gasiamis (10:07)

No, no, and they wouldn’t want to be.

Heidi Loveridge (10:08)

They tested me for

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

Bill Gasiamis (10:14)

Yeah, that’s good. That is very good. ⁓ And there was no hole in the heart or anything like that. No high blood pressure. Yeah.

Heidi Loveridge (10:15)

Yeah. No, no PFO. Yeah. Yeah, they tested for that. I

did the bubble study. Nope, none of that.

Bill Gasiamis (10:24)

Yeah. Did you do a blood test that kind of determined whether or not you have one of the blood clotting disorders?

Heidi Loveridge (10:32)

Yeah, they did that too. Nope, I don’t have one those. Or else I suspect I would have clotted a lot sooner.

Bill Gasiamis (10:35)

Yeah, wow. Okay.

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)

No,

I was 43.

Bill Gasiamis (10:51)

Okay. Yeah. How long had you been on the pill for?

Heidi Loveridge (10:56)

Like since I was a teenager. I was actually born with two uteruses, so I had issues as a kid with like my periods and stuff. Yes. Yeah.

Bill Gasiamis (11:05)

Uh-huh, so they help manage that whole situation.

Heidi Loveridge (11:08)

I was born two uteruses, one kidney.

Bill Gasiamis (11:12)

We’ll continue with Heidi in just a moment. Turn2.ai is an AI health sidekick that searches over 500,000 sources related to stroke. New research, expert discussions, patient stories and resources and keeps you updated on what is most relevant to you each week. Try it for free and get 10 % off by scanning the QR code on the screen or by clicking the link in the description.

Now let’s get back to Heidi.

Bill Gasiamis (11:38)

something got mixed up in the booking.

Heidi Loveridge (11:40)

Yeah,

yeah exactly.

Bill Gasiamis (11:43)

So that’s a very rare thing. imagine probably not many people are born with well, firstly, one kidney and then two uteruses at the same time.

Heidi Loveridge (11:51)

Yes.

Yeah, exactly. I get to be special.

Bill Gasiamis (11:57)

Do

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)

No, I didn’t feel popular at the hospital.

Bill Gasiamis (12:10)

Do you know what I mean? Because sometimes you see doctors, they, um, they get excited when there’s a rare case or something they’ve never seen before. The person’s having the worst day of their life or they’re really unwell, but they’re really excited to see them. You know, they want to see them. They want to bring everyone in, come and have a look.

Heidi Loveridge (12:16)

Yeah.

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)

huh.

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

Heidi Loveridge (12:42)

I know what you see. Yeah, that’s exactly what they were doing saying.

Bill Gasiamis (12:43)

Yeah, that’s what…

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)

No. No,

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

Bill Gasiamis (13:01)

huh. When you woke up from the initial hospitalization, what did you, how was it? What was that like? How did you kind of experience that moment in your life?

Heidi Loveridge (13:06)

Mm.

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)

Why?

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

Heidi Loveridge (13:30)

Yeah, exactly.

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)

And it was easy.

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)

Yeah, I guess.

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)

We’re going doing a deep dive into all of your habits ⁓ and no cavities for 20 years. That’s an awesome experience, especially if you haven’t been to the dentist.

Heidi Loveridge (13:59)

Yeah.

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)

⁓ did, mom and dad must’ve loved you. Like you’re, you’re the kind of kid that, you know, didn’t cost your parents anything.

Heidi Loveridge (14:27)

No, though they did get me braces though when I was a kid.

Bill Gasiamis (14:30)

They did, they stranded up your teeth and they thought, now we’ve spent some money on your teeth, look after them and never get a cavity. And you did.

Heidi Loveridge (14:31)

Yep.

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)

Ha ha ha!

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)

Yes, and stroke, yeah.

Yeah.

Yeah. Yeah.

Yeah.

Driving and Independence Post-Stroke

Bill Gasiamis (15:19)

It’s perfectly okay. But ⁓ it’s important to have good dental health care because it helps you avoid other medical conditions, which is so weird.

Heidi Loveridge (15:19)

Yes.

Yeah. Yes. Yeah.

Is dental care covered in Australia?

Bill Gasiamis (15:33)

No, not particularly.

Heidi Loveridge (15:35)

No,

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

Bill Gasiamis (15:39)

Mm-hmm. You didn’t need to. Yeah. Yeah, that’s good. So on the day of the stroke, you remember basically the whole thing. You ended up in hospital and everyone. Uh-huh. What were you thinking? Were you thinking what’s happening here? Am I going to die? Did you have any of those types of experiences?

Heidi Loveridge (15:40)

like employer pay benefits.

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)

You just kind of left yourself in the hands of the experts.

Heidi Loveridge (16:15)

Yeah, exactly. Please fix me.

Bill Gasiamis (16:17)

Is that because you’re normally mild-mannered or you just realized that you were in a situation where you couldn’t do anything about?

Heidi Loveridge (16:22)

No, I’m always, I’m very mild-mannered. Yeah, I don’t argue with anybody.

Bill Gasiamis (16:28)

Even if they’re wrong.

Heidi Loveridge (16:29)

And maybe I guess it might depend on what they’re wrong about, but I generally let people have their own opinions. People are allowed to think what they want. That’s not my problem.

Bill Gasiamis (16:32)

Yeah.

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

Heidi Loveridge (16:38)

I can’t change everybody’s mind.

Mm-hmm.

Yeah, exactly.

Bill Gasiamis (16:48)

Yeah. Decreases probably conflict and all that kind of stuff. Are you conflict diverse? Is that why you do it?

Heidi Loveridge (16:52)

Yeah.

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)

And would you approach a person like that and say to them, stop speaking to my animals like that?

Heidi Loveridge (17:18)

No.

No, I’d be scared.

Bill Gasiamis (17:23)

Okay, so you’re conflict-averse and also you don’t want to cause a situation that might escalate.

Heidi Loveridge (17:28)

Yeah.

Yeah, so I just want everybody to like me.

Bill Gasiamis (17:32)

⁓ okay. I get it. And this kind of stems back. All this is kind of stuff from when you were a kid, when you were younger and being an introvert is introverted. ⁓ introverted people, similar to people who you hear, ⁓ described as being shy.

Heidi Loveridge (17:40)

Yeah, my whole life,

Yes, I was called shy my whole childhood.

Bill Gasiamis (17:54)

but it’s actually introversion.

Heidi Loveridge (17:56)

Yeah, exactly. It’s like I don’t need like after when the COVID pandemic happened, I was actually so excited to be able to work from home. Like I changed my life, not having to go to work every day.

Bill Gasiamis (17:58)

Huh.

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)

Yes. ⁓ so.

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)

okay.

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

Heidi Loveridge (18:49)

Thank

Yeah. Yes.

Emotional Changes and Mental Health

Yes, some people, yes. But actually, I was quite popular. I am quite popular at work. Like, everybody really likes me. So like, people might not even know I’m an introvert at work. Sometimes I can fake it so well.

Bill Gasiamis (19:08)

⁓ you’re one of those sneaky introverts that pretends they’re an extrovert.

Heidi Loveridge (19:12)

Yeah,

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

Bill Gasiamis (19:17)

Aha. So then you come home and you don’t want to talk to anybody.

Heidi Loveridge (19:21)

No, I need, yeah, like Fridays, if people want to invite me over for dinner, was like, Fridays is hard for me. Like, I just had a whole long week and I wanted, like, do nothing for a night.

Bill Gasiamis (19:30)

Many spouses would love to hear that their partner didn’t want to speak to them after a long week for a little while.

Heidi Loveridge (19:36)

Yeah, well, I think Dave is also a quiet guy too, so he was happy. Yeah. But actually now I feel like I pushed him out of his comfort zone. Because right after this, when I got home from the stroke, I was constantly like going to people’s houses. And like

Bill Gasiamis (19:42)

You guys get each other.

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

Heidi Loveridge (19:56)

Yeah,

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)

and Judy said yes.

Heidi Loveridge (20:09)

Yeah, she did. And it was a, we had a lovely time together.

Bill Gasiamis (20:13)

And then you went to Judy and Judy didn’t realize that you are now no longer an introvert. You’re an extrovert because she always saw the extrovert.

Heidi Loveridge (20:19)

Yeah.

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

Bill Gasiamis (20:27)

And she just thinks everything’s normal. is normal.

Heidi Loveridge (20:29)

Yeah,

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

Bill Gasiamis (20:33)

Wow.

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)

Mm.

Yeah.

Mm.

Yeah.

you

Bill Gasiamis (21:05)

introvert person at all, the one that you keep telling me about. And he insisted that he was, and I even went to his house and hung out with them, um, slept there a couple of nights because they were quite away, uh, away from our place. Never ever saw the introverted side of him, but he insisted that it was, but I never had that experience.

Heidi Loveridge (21:06)

Yeah.

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)

Wow, you never got your license.

Were you afraid of getting a license?

Heidi Loveridge (21:44)

A little bit, Mostly like, I just associate driving with people just getting mad at you. Like people road raging and stuff. But now I don’t care what people think. Yeah.

Bill Gasiamis (21:45)

huh.

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)

Yeah.

Bill Gasiamis (22:00)

So for that rare potential, you would rather have opted out of that than opted in.

Heidi Loveridge (22:04)

Mm.

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

Bill Gasiamis (22:10)

Yeah. So.

Heidi Loveridge (22:11)

You know?

Bill Gasiamis (22:14)

So did it interfere with your, it doesn’t sound like it did, but I was going to say with your ability to get around and, you know, go to places you wanted to see and do all of that. did just Dave pick up the slack.

Heidi Loveridge (22:25)

Yeah,

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)

Okay.

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)

Mm-hmm. Yeah.

like maybe since November.

Bill Gasiamis (22:53)

Was it exciting?

Heidi Loveridge (22:54)

I actually, I need to like bring in my inner teenager, like who’s really excited about driving, so that I like practice more.

Bill Gasiamis (23:00)

Okay. But the decision to go and train and try and get your permit was just like, yeah, I have to do this. I’ve been missing out. What was it?

Heidi Loveridge (23:02)

Yes, I also.

Yeah.

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

Bill Gasiamis (23:16)

And if Dave’s not available, you need to be able to get out.

Heidi Loveridge (23:18)

Yeah. I’d like to go, I’d like

to take my dogs with me when I go places.

Bill Gasiamis (23:23)

Wow. And that wasn’t an issue beforehand. You never had that issue before. And in your mind, in your mind.

Heidi Loveridge (23:28)

Oh. Yes.

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)

Wow. When you came out of hospital, were there deficits that you had to deal with and recover from?

Finding Meaningful Connections

Heidi Loveridge (23:45)

Mm-hmm.

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)

So you had to use the wheelchair and the walker for what reason? What was the deficit that you were dealing with?

Heidi Loveridge (24:06)

because I had

left side weakness.

Bill Gasiamis (24:09)

Okay. And was it, your leg didn’t know where it was in the world? Was it kind of getting retrained to help you ⁓ stay up or is it still weak and still challenging?

Heidi Loveridge (24:18)

Yeah.

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

Bill Gasiamis (24:25)

huh. Okay. And what about your hand, your left hand?

Heidi Loveridge (24:29)

Yes, I think I used it almost like normal except I can’t write very good anymore. Like my fine motor skills. Yeah, I’m a left handed too.

Bill Gasiamis (24:34)

and where you left him.

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

Heidi Loveridge (24:41)

Yeah, it’s a disaster. Oh, there was one point I had to go to the Service Canada, the government, to get my social insurance number updated to my married name because the system was like, it wasn’t adding up when I was trying to apply for benefits. And then I was like, he asked me to write something down. And then he said, you need to write it down so I can read it. And I said, I had to get Dave to write it for me because I couldn’t. That was the best I could do at that time. Yes. Yes, it’s legible now, I think.

Bill Gasiamis (25:07)

And has that improved since?

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

Heidi Loveridge (25:17)

That was, when I was in the hospital still, was one of my goals. I need to start knitting again.

Bill Gasiamis (25:22)

Aha. And that wasn’t an issue? Did you get the knitting skill?

Heidi Loveridge (25:26)

⁓ it was an issue.

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.

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

Heidi Loveridge (25:45)

But,

yeah.

Bill Gasiamis (25:49)

So I’m right-handed and then I bat. So if I was swinging a baseball bat or a cricket bat, I bat left-handed.

Heidi Loveridge (25:51)

Yes. Yeah.

Interesting. I also got left-handed. Yeah.

Bill Gasiamis (25:58)

to be weird. don’t know why. And very rare to find a left handed batsman.

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)

Thank

Thanks.

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

Bill Gasiamis (26:15)

No, my whole life. Yeah. And post stroke, it’s my left hand that’s affected. So holding a bat now feels a bit weird, but yeah, I can still do it.

Heidi Loveridge (26:19)

Huh. Yeah.

Bill Gasiamis (26:24)

So six weeks in hospital, came home with a wheelchair and a walker. And what about work? Like what happened with work? How did you manage that?

Heidi Loveridge (26:27)

Yeah. Yeah. Yeah.

I was off work for a long time.

Bill Gasiamis (26:39)

Hello.

Heidi Loveridge (26:40)

Like, eight months.

Bill Gasiamis (26:44)

eight months. Wow. As well as the left side of weakness, what other deficits were you dealing with?

Heidi Loveridge (26:50)

It’s my emotions that were terrible. I used to cry all the time. I can still cry at the drop of a dime. I cried today, actually.

Bill Gasiamis (26:55)

Mm-hmm.

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

Heidi Loveridge (27:02)

Yes, that might be something that I have, I don’t know.

Bill Gasiamis (27:07)

Yeah, nobody really diagnoses it, but it’s very common and it is a thing. And I was very, very teary for the first few years after all of my brain hemorrhages and still can get very teary ⁓ at the top of a hat. Yesterday in Australia, ⁓ well, at the moment it’s Orthodox Easter. So I went to church yesterday and I barely go to church, but every couple of, you know, there’s an event.

Heidi Loveridge (27:10)

Yeah.

Yeah.

Yes. Yes.

Bill Gasiamis (27:36)

we go, but I’m not a church goer. And I found myself getting teary at the service. And it was, that’s not what I’ve ever done before. That was a little bit strange. ⁓ I didn’t allow it to escalate two tears and crying. I hit it quite well, but it happened just out of nowhere.

Heidi Loveridge (27:37)

Yeah. No.

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)

Mm.

Uh-huh.

Heidi Loveridge (28:07)

but it was the church I grew up going to as a child.

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

Bill Gasiamis (28:10)

was that

⁓ 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.

Yeah.

I go to everything right now.

Bill Gasiamis (28:32)

Mm-hmm. You’re either all in or all out, Heidi, by the sound of things.

Heidi Loveridge (28:35)

Yeah.

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)

huh.

⁓ did you guys grow out of it perhaps?

Heidi Loveridge (28:49)

Yeah. But now, I just need, I feel like I need hope in my life. That I’m not gonna feel terrible forever.

Bill Gasiamis (28:55)

hope.

Heidi Loveridge (28:57)

and I’m recognizing how lucky I am that it’s just like my emotions that are struggling still.

Bill Gasiamis (28:58)

Yeah.

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)

Like physically I can do almost everything, anything I want.

Yeah. Yeah.

Yeah.

Yeah, exactly.

Bill Gasiamis (29:21)

Well, community in a church is awesome. Always communities are usually brilliant. You go to a church, there’s amazing, helpful people, supportive. You know that you can even in the worst time lean on the people in that community. They’ll rally around you. They’ll support you. They’ll support your husband, your family. So it can be an amazing place to hang out, even if you’re not really churchy or religious or anything like that.

Heidi Loveridge (29:24)

Yeah. Yes.

Yeah.

Yeah. Yeah, exactly.

Yeah.

Bill Gasiamis (29:50)

And it’s no different to that would, that would, you know, like-minded people. It’d be no different to being part of a sports club or some other knitting club or any other kind of club.

Heidi Loveridge (29:54)

Yeah.

Yes, I’m also part of a woman circle.

Bill Gasiamis (30:06)

That doesn’t surprise me. Tell me about the woman circle. What do they do there?

Heidi Loveridge (30:08)

Yes.

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)

That’s brilliant. And how many women get together and how often?

Heidi Loveridge (30:21)

There’s eight of us and we get together about one every week, Tuesday evenings. In person, yeah.

Bill Gasiamis (30:25)

In person.

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

Heidi Loveridge (30:31)

I’d rather not. I like people in real life better. Yeah. Yes. Old Heidi. Once a week was a big commitment.

Bill Gasiamis (30:33)

Yeah, the old Heidi would, but this Heidi, no.

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)

Yeah.

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)

⁓ Okay. Like your own circle of people where you can just go and be you and you don’t have to worry about anything else getting out.

Heidi Loveridge (31:04)

Exactly. Yeah.

Bill Gasiamis (31:09)

I like that. That’s why I used to go to counseling. So I could just have my counselor there who had my back, but was willing also to test me and also willing to, what’s the word? ⁓ mostly test my, my thinking, you know, like you push back on the things that I would say, but whatever I said there, yeah, there was no, there was no judgment. was no interaction. was anything other than about me. And I was able to express how I wanted to express it.

Heidi Loveridge (31:15)

Yeah.

Yeah.

So, yes.

Bill Gasiamis (31:38)

but get some, get some guided support and counseling and feedback that was not based on me being right or wrong. It was just feedback.

Heidi Loveridge (31:39)

Yeah, exactly.

Yes.

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

Bill Gasiamis (31:56)

Yeah, yeah, it was how helpful is that to you to think like that about your brother Bill? And I’d be like, hmm, maybe it’s not so helpful to think about my brother in that way. Okay. And then the next question might be, well, how, how might you think about your brother? That is helpful, even though he did something that bugged you or annoyed you or frustrated you as, as your, ⁓ your, your childhood relationship has

Heidi Loveridge (32:05)

Yeah.

Mm-hmm.

So, thank

Bill Gasiamis (32:24)

moved into your adult life, you know, because sometimes we don’t realize that we’re still pretending as adults that we’re 13 year old kids. And I used to react like a 13 year old kid when my brother would do something or say something that was never mentored, never meant in a way for me to, you know, to get offended or upset about, because I was a 13 year old kid responding. And it was like, okay, here’s some feedback for you about how you respond and whether or not it’s helpful at all. And whether or not

Heidi Loveridge (32:26)

Yeah.

Yeah.

So.

Exactly.

Yeah.

Bill Gasiamis (32:54)

actually you can park that behavior, your response to the 13 year old, just park it there and find a new way to respond, evolve.

Heidi Loveridge (33:02)

Yeah, exactly. And your brother will mind if you respond in a nicer way.

Bill Gasiamis (33:04)

I like your approach.

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)

or believe.

Yeah.

Yeah, exactly.

Bill Gasiamis (33:25)

But I do like your ⁓ mild mannered nature. I do like that kind of approach as well and avoiding conflict and finding ways to get around conflict. That’s pretty cool. I think that’s a good skill to have because conflict usually doesn’t achieve anything in most scenarios. It just makes things worse. Yeah. Yeah. So that’s kind of my where I went to get that kind of support. But there are men’s groups and ⁓

Heidi Loveridge (33:29)

Yeah.

Yeah.

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

Mm. Yeah.

Mm. Mm-hmm.

Bill Gasiamis (33:54)

glad to hear there are women’s groups that

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)

Yeah.

Mm-hmm.

Yeah.

Bill Gasiamis (34:15)

Does it also help that the other women share their challenges and their things that they’re going through?

Heidi Loveridge (34:19)

Yeah.

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)

Mm-hmm.

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)

It’s not necessarily worse than anybody else’s.

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.

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)

Yeah. Yeah,

something that matters you want to talk about.

Bill Gasiamis (35:13)

Yeah. Yeah. Because usually people talking about the daily happenings, they’re not, just talking at a surface level. They’re just expressing very narrow views about things that they don’t know much about at all. And they’re not really going, they’re not taking a deep dive. And all I feel like they’re doing is exacerbating their pain and suffering by reiterating what they think they’ve heard or they think is happening that and how it impacts them and makes

Heidi Loveridge (35:19)

Yeah.

Hmm.

Yeah, exactly.

Bill Gasiamis (35:43)

then feel bad. If you tune out from the news and you don’t watch the news for a week or two, then the, haven’t missed anything. you can, it’s like days of our lives. You could just pick up six months later. What you do is tune into the one episode every six months and you just pick up where you left off.

Heidi Loveridge (35:48)

No.

Exactly.

Spirit true.

Overcoming Limitations and Embracing Change

Bill Gasiamis (36:04)

So tell me a little bit about ⁓ what it was like coming home for the first time after your six weeks. it daunting? Did you feel things you’d never felt before? What was it like?

Heidi Loveridge (36:15)

Yes, yes, felt daunting.

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)

because you moved less, sorry, you ate less, even though you moved less initially.

Heidi Loveridge (36:41)

Yeah.

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)

Yeah. But

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

Heidi Loveridge (36:59)

Yes,

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)

And then when you came home.

yeah, but you made it.

Heidi Loveridge (37:12)

Yeah.

Bill Gasiamis (37:13)

And then when you came home, you didn’t have the desire to do.

Heidi Loveridge (37:18)

No.

Bill Gasiamis (37:20)

And was, is that a role that you kind of played in your relationship with Dave at the house? huh. And has that had to flip over? Is Dave taken over that task now?

Heidi Loveridge (37:24)

Yeah, yeah, I used to always plan the food and stuff,

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)

Okay, so you found your way back. You’ve been able to kind of find your way back.

Heidi Loveridge (37:42)

Yes, I’m sort

of my way back a little bit. Yeah.

Bill Gasiamis (37:46)

Do you feel like that’s part of the recovery kind of continuing and evolving and you’re kind of getting back to your old self?

Heidi Loveridge (37:51)

Yeah.

Yeah, I hope so.

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

Bill Gasiamis (37:56)

Hmm, sounds like it.

You’re not happy.

Do know what you’re not happy about?

Heidi Loveridge (38:04)

No, it doesn’t feel like it’s anything specific. Like, I know I can do everything I need to do or want to do. So actually at Christmas time, I did try cross-country skiing. It was really hard.

Bill Gasiamis (38:10)

Mm-hmm.

Was it fun?

Heidi Loveridge (38:15)

Not as fun as it should have been. It was more hard than fun.

And actually, it’s what.

Bill Gasiamis (38:19)

Did that make you happy?

Unhappy.

Heidi Loveridge (38:21)

The idea of doing it made me happy, but the fact that I was sucked at it was not as happy.

Bill Gasiamis (38:27)

Are you also a

high achiever?

Heidi Loveridge (38:30)

Maybe.

Bill Gasiamis (38:31)

Do you also like, are you really hard on yourself when you can’t do something perfect?

Heidi Loveridge (38:37)

Yes, I like things to do, you guys have done well.

Bill Gasiamis (38:40)

Are you a perfectionist?

Heidi Loveridge (38:43)

I don’t know if I’m a perfectionist. I actually have, when I do mistakes in my knitting, sometimes I’m just like, I don’t want go back and fix that and I just let it go.

Bill Gasiamis (38:50)

Okay, but that’s very wabi-sabi. Do you know wabi-sabi? That’s Japanese term for like, okay to have imperfection in something, right? The imperfection is necessary.

Heidi Loveridge (38:52)

Mm-hmm.

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)

I love

Heidi Loveridge (39:19)

And so I totally embraced that. Mistakes mean you made it by hand.

Bill Gasiamis (39:19)

Yeah.

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

Traveling Beyond Borders

Heidi Loveridge (39:27)

Yeah,

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)

Were

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)

Yeah, very far for you though.

Bill Gasiamis (39:59)

Yeah, for me, it’s not that far. It’s about four hours away. I can get to snow in winter about four hours away from here.

Heidi Loveridge (40:06)

I didn’t realize there was any snow in winter in Australia.

Bill Gasiamis (40:10)

there’s heaps. Yeah. There’s, there’s at least three, three or four snowfields I can go to one in the state. ⁓ more than one in the state here. It’s there’s one Mount Buller is in Victoria where I can go skiing, proper skiing. Like it’s got the whole stuff resorts and everything up there. And then there’s a lot of lower little mountains that you can go and just make snowballs and throw them at your kids. Those ones are the fun ones. We’ve been to those ones, Lake Mountain.

Heidi Loveridge (40:18)

Mm.

Transforming Personal Identity

Yeah. Yeah. Thanks.

Nice. Yeah.

Bill Gasiamis (40:39)

And then in New South

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)

Hmm.

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.

Okay.

So are you a good skier?

Heidi Loveridge (41:23)

No.

Bill Gasiamis (41:25)

Okay, so you’re not a good skier. You did cross country skiing. You it was hard because you’re just generally not a good skier and you still got you still felt bad about it.

Heidi Loveridge (41:28)

Yeah.

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

Bill Gasiamis (41:41)

⁓ Okay, so what you did is you associated your inability to be great at it or for it to be a little bit easier to your deficit still.

Heidi Loveridge (41:46)

Yeah.

Yes, exactly.

Bill Gasiamis (41:53)

And how does that make you feel knowing that you still have a deficit where your left side is a little weaker?

Heidi Loveridge (41:58)

Yeah, I feel like it makes me feel like I need to work on it.

Bill Gasiamis (42:02)

Okay, would it be better? Would you be happier if that was perfect?

Heidi Loveridge (42:08)

problem maybe. But it doesn’t really affect my day to day life though.

Bill Gasiamis (42:10)

Maybe, probably.

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

Heidi Loveridge (42:15)

Yes, so

yeah.

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

Bill Gasiamis (42:23)

Uh-huh. know what you mean because the left side feels completely different to the right side. And you always have the reference. You have one always making you appreciate the way that they’re different and therefore, quote unquote, not normal.

Heidi Loveridge (42:26)

Yeah. Yeah.

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)

Yeah.

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)

Hmm

Mm.

Yes.

Yeah.

Bill Gasiamis (43:26)

got the e-bike and then realized I could just keep riding all day, but then would come home literally after maybe a 20 kilometer ride and be spent for the rest of the day and just completely gone. But then with time and as the years passed, I noticed that my bike rides wouldn’t do that to me anymore. And I’d have to come home and have a good rest for an hour, an hour and a half too. But then I was back to my tasks.

Heidi Loveridge (43:37)

Yeah.

Thanks.

Yeah.

Bill Gasiamis (43:53)

for the rest

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.

Yeah.

Innovations in Stroke Treatment

Bill Gasiamis (44:10)

So yeah, it’s a very interesting conversation. It’s interesting to hear your perspective as somebody who described herself as a introvert back then, an extrovert now, somebody who has overcome some amazing things and gone and got your license at 44. It’s such an interesting thing to hear.

Heidi Loveridge (44:15)

Yeah, sure.

Yeah. Yeah.

Yeah.

Bill Gasiamis (44:40)

Do you see the blessings of stroke? Is there such a thing? I, like, I, can you say that about it? Would you say it that way? I know it’s a bit weird to hear that sentence, but.

Heidi Loveridge (44:52)

Yes, I can’t wait to be able to feel that way fully.

Bill Gasiamis (44:56)

Okay, so you have a glimmer of it. you like to have a little glimmer of it because of the changes that you’ve made that you appreciate?

Heidi Loveridge (44:59)

Yeah.

Yeah.

Bill Gasiamis (45:05)

but you can’t fully feel that yet. I get it. It’s early days, right?

Heidi Loveridge (45:09)

Yeah, I’m about 10 months post-stroke now.

Bill Gasiamis (45:12)

Yeah, so early and so many big. Yeah, and so many big changes so rapidly.

Heidi Loveridge (45:15)

That’s what everybody keeps telling me.

The Journey to Happiness

Mmm

Bill Gasiamis (45:22)

That’s a lot to, it is a lot to deal with. A, you had a stroke. B, you had to overcome all the deficits. And now you have these personality traits that are different from your previous personality traits. It’s a lot of change, a lot of adjustment.

Heidi Loveridge (45:27)

Yeah.

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)

Hmm.

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

Heidi Loveridge (45:52)

Yeah, exactly.

Bill Gasiamis (45:54)

Are you on blood thinness or anything like that?

Heidi Loveridge (45:56)

Yes, I’m on blood thinners now.

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

Bill Gasiamis (46:02)

Okay. Do not get pregnant. Why is that a risk?

Heidi Loveridge (46:06)

Well, because your blood starts clotting more when you’re pregnant, so you don’t bleed out when you have a baby. Your blood does get thicker during pregnancy.

Bill Gasiamis (46:14)

⁓

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

Heidi Loveridge (46:20)

Yes,

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

Bill Gasiamis (46:26)

I see. Okay. So blood thinners, is that a permanent thing or are they talking about perhaps, ⁓ something getting you off that at some point?

Heidi Loveridge (46:35)

No, think it’s permanent.

Bill Gasiamis (46:37)

And what are the things that you would like to kind of achieve or do in the future now that you’ve had this?

Heidi Loveridge (46:48)

Life changing event. I want to travel more.

Bill Gasiamis (46:49)

thing occurred to you.

Have you ever traveled the outside of Canada?

Heidi Loveridge (46:53)

Okay.

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)

Mm-hmm.

Yeah, apparently you could get that the tube.

Heidi Loveridge (47:09)

Can you tell that I work

for transit? Like I love transit.

Bill Gasiamis (47:12)

Okay.

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

Heidi Loveridge (47:18)

Yeah,

yeah, exactly.

Bill Gasiamis (47:21)

Okay, so you had to embrace it, you embraced it fully. And one of the highlights of traveling to the United Kingdom was seeing the public transport system.

Exploring Alternative Therapies

Heidi Loveridge (47:25)

Mm-hmm, yeah.

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)

Mm-hmm.

So it’s a very livable city.

Heidi Loveridge (47:39)

Yes.

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

Bill Gasiamis (47:46)

Yeah. Okay. ⁓ did you have a, I’m a mortal moment as well. It sounds like you might’ve had a, I realized that I became a mortal all of a sudden.

Heidi Loveridge (47:55)

Yeah. Yes.

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

Bill Gasiamis (48:02)

Did the introversion stop you from living your life fully? Is that what it did? And now that you’re not that, you’re having these experiences that you perhaps missed out on or you weren’t able to embrace.

Heidi Loveridge (48:15)

No, I was living the life I wanted to live at the time.

Bill Gasiamis (48:19)

huh. So it’s just, you want to live a different life now. It’s just changed.

Heidi Loveridge (48:23)

Yeah,

exactly. I definitely want to travel more now.

Bill Gasiamis (48:28)

Do you have an explanation for it though? Do you know one of those deeper underlying explanations, not because, just because.

Does it sound like you do?

Heidi Loveridge (48:39)

No, I don’t. don’t have a good reason for it.

Bill Gasiamis (48:43)

But it’s good enough.

Heidi Loveridge (48:44)

Yeah.

Bill Gasiamis (48:45)

I love it. Why not?

Heidi Loveridge (48:47)

Yeah, exactly.

Bill Gasiamis (48:49)

So, but Dave is also dealing with all of the stroke and all of the things that happen to you. You know, nearly lost his wife to a stroke and all that kind of stuff. How old is Dave?

Heidi Loveridge (48:54)

Yeah. Yes. Yeah.

He’s 48.

Bill Gasiamis (49:03)

Yeah, right. So he’s kind of amongst other things and I don’t want to talk for him because I’ve never met him, met the man. But I imagine as a spouse is thinking what’s going on here.

Heidi Loveridge (49:07)

Yeah.

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)

Mm-mm.

Heidi Loveridge (49:24)

Actually, my neurologist told me, oh, I couldn’t have picked a better spot to have a stroke in my brain.

Bill Gasiamis (49:29)

Uh-huh.

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)

Yeah, he must have been in a good spot, I guess because I was physically doing so well.

Bill Gasiamis (49:44)

Well, that’s good. It sounds like it didn’t have a major, there wasn’t a major kind of clotted that impacted a lot of the brain in that space as well. It sounds like it was like isolated, quite isolated.

Heidi Loveridge (49:55)

Yes,

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)

⁓ in the same location.

Heidi Loveridge (50:09)

Yeah.

Bill Gasiamis (50:11)

The blood clot also caused a little bit of bleeding.

Heidi Loveridge (50:14)

Yes.

Bill Gasiamis (50:15)

I didn’t know that that was a thing.

Heidi Loveridge (50:17)

Yes, it’s called a hemorrhagic component.

Bill Gasiamis (50:20)

I imagine that’s uncommon.

Heidi Loveridge (50:23)

I don’t know. It meant that they couldn’t put me on blood thinners right away. So I actually had to get a filter installed in my main vein coming out from my leg on my neck.

Bill Gasiamis (50:31)

Uh-huh.

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

Heidi Loveridge (50:34)

Yes.

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

Bill Gasiamis (50:40)

huh. Any blood clots that may still be in the circulatory system.

Heidi Loveridge (50:44)

Yeah, exactly. And because of the bleed, they couldn’t put me on thinners, blood thinners right away, so they had to, like that was kind of the interim measure to help protect me.

Bill Gasiamis (50:47)

Wow.

How long was that in for?

Heidi Loveridge (50:57)

maybe a week or something.

Bill Gasiamis (50:59)

Okay, and it’s just inserted into your artery in your thigh.

Heidi Loveridge (51:03)

Yeah, actually it went in through my neck but they took it out through my other thigh.

Bill Gasiamis (51:07)

Okay.

Heidi Loveridge (51:08)

and it was full of clots when they took it out.

Bill Gasiamis (51:10)

It was, was it?

Heidi Loveridge (51:11)

Yeah.

Bill Gasiamis (51:12)

unbelievable that this thing I’ve never heard of that thing either that it just goes in there and it sits there and collects cloths and then they just take it out.

Lessons Learned and Moving Forward

Heidi Loveridge (51:13)

Yes, I think they call it an

IVF filter.

Bill Gasiamis (51:22)

Wow.

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)

Yes. Yeah,

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

Bill Gasiamis (51:34)

Yeah, fabulous.

Heidi Loveridge (51:35)

Mm-hmm.

Bill Gasiamis (51:36)

That’s just, every time I speak to somebody who’s had a stroke on my podcast, I learned something new every time. I’ve been doing this for 10 years and I was talking about it a little while ago, but it never seems to get old. It still doesn’t feel like for me that it’s getting old to learn all these different things that are possible now that I don’t think were possible 10 years ago. ⁓ Filters, ⁓ you there’s different methods of helping people overcome a secondary.

Heidi Loveridge (51:40)

Mm-hmm.

Yeah. Yeah.

⁓

Thank

Yeah.

Bill Gasiamis (52:05)

lot, how people ⁓ avoid deficits by improving how quickly hospitals respond and how they respond and with what technology they respond. It’s just amazing that things are improving so much. And there are so many people that are good on the podcast who had a stroke who are doing very, very well after what I consider to be a short amount of time, because people often sort of say, you know, how long the stroke recovery take? it’s like,

Heidi Loveridge (52:10)

Mm-hmm. Yeah.

Yeah.

Bill Gasiamis (52:33)

It doesn’t take, it doesn’t have a timeline. just continues.

Heidi Loveridge (52:36)

Yes,

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

Bill Gasiamis (52:39)

Yeah, it just continues. ⁓

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)

Yeah.

Mm-hmm. Yeah, I hope so.

Yeah.

Yes. ⁓

Bill Gasiamis (53:13)

dialing it up, turning it up a little and increasing that ⁓ level of happiness and then kind of staying there and then being the thing that is more common.

Heidi Loveridge (53:15)

Wow.

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)

Yeah.

Tell me about that, yeah.

Heidi Loveridge (53:35)

So you probably heard seen people with like the funny face masks like to improve your skin with red light. But there’s also, I got a helmet on my head and like is to put like red light into your brain. And there’s actually been studies on it.

Bill Gasiamis (53:40)

Yep. Yep.

Yes.

Yes. How long does it?

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

Heidi Loveridge (53:53)

So maybe it was 20 minutes.

Bill Gasiamis (53:55)

And do know the spectrum or the strength or any of that stuff? Did you get any of that detail?

Heidi Loveridge (54:00)

I don’t know what offed off my head, unfortunately.

Bill Gasiamis (54:03)

Yeah, it just goes on your head and then I switch it on and then you sit there. I imagine you probably took your knitting.

Heidi Loveridge (54:06)

Mm-hmm. Yep.

I didn’t actually.

Bill Gasiamis (54:14)

Fair enough. So you sit there for… Yeah, that’s right. So you took about 20 minutes and then you’re going back for more. And did you notice anything?

Heidi Loveridge (54:16)

I can handle people now.

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)

Wow.

Heidi Loveridge (54:32)

And so I’m not covered with benefits. However, they did talk me into doing some laser acupuncture tomorrow.

Bill Gasiamis (54:40)

Laser acupuncture. I’m learning a lot. I’ve never heard of that either.

Heidi Loveridge (54:46)

Yeah, me neither. Apparently, so does the same thing to me, needle.

Bill Gasiamis (54:48)

It’s not with needles.

There’s no needle.

Heidi Loveridge (54:53)

No. So for anybody that squeamish, it’s a way to get acupuncture.

Bill Gasiamis (54:56)

my gosh.

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

Heidi Loveridge (55:01)

Yes, I heard that in China. It’s normal protocol after strokes to get lots of acupuncture.

Bill Gasiamis (55:07)

It is. I actually had acupuncture after the stroke and what I find is that it is a very temporary support measure. does help and it helps for a short amount of time. So ⁓ that doesn’t mean I’m not encouraging people to try it out or have a look at it. I consider it just as temporary as massage.

Heidi Loveridge (55:10)

Mm.

Yeah.

Mm-hmm.

Hmm

Bill Gasiamis (55:32)

because I go and get massages all the time because my left side just gets tight and everything gets out of whack. And I can go and get a massage and get relief for three days, three or four days. But then, you know, it’s back and I can’t afford to go and pay for a one hour massage session, which costs $100. I can’t afford to do that on a weekly basis. So I go once a month. And by the time I get to the next appointment,

Heidi Loveridge (55:32)

Yes. ⁓

Yeah.

Bill Gasiamis (56:01)

You know, week four is usually the hardest week and I can stretch and I can do all sorts of things, but the knots end up in places where, you know, you need somebody’s hands to go in and just deal with them. And I can’t get.

So it’s acupuncture feels like that.

Heidi Loveridge (56:19)

I actually so there’s a Yeah, there’s a co-worker that used to work via bus driver. However after she retired she got acu- no not she got chiropractor and then she got a stroke from the chiropractor Busting a vein in her neck. Yeah

Bill Gasiamis (56:35)

Manipulation. Yeah,

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)

Yeah. ⁓ I’m not sure what the, what the situation is with that. Like what happens when that happens, like how somebody gets compensated or whatever. imagine the chiropractor has medical, some kind of insurance or something. Yeah. But, ⁓ that would be horrific for a chiropractor to find out that a manipulation of the neck caused damage to their patient.

Heidi Loveridge (56:57)

Yeah.

Yeah, hey boss.

Yeah.

Bill Gasiamis (57:17)

And if there’s anything, I have a friend of mine who’s a great chiropractor who I see very, very often. And he’s the one that picked up my ⁓ brain hemorrhages in that I went and saw him for what I thought was a pinched nerve. And he said, well, there’s something wrong other than a pinched nerve. It’s not your back. It’s not your spine. You need to go to the hospital.

Heidi Loveridge (57:24)

⁓

Hmm. Hmm. Yeah.

Bill Gasiamis (57:43)

And when

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)

No.

Yeah.

Bill Gasiamis (57:58)

And he’s the one who sort of said to me, go and see a doctor about this. And since then, that was 14 years ago. Since then, he’s had another patient that came to him with stroke symptoms, who he said, you need to go to a hospital ⁓ as well. So they’d be horrified to find out that a manipulation of the neck while on their table caused one of their patients stroke.

Heidi Loveridge (58:08)

Yes.

Yeah,

yes because everybody knows that stroke is a big deal.

Bill Gasiamis (58:29)

Yeah, it can be deadly.

Heidi Loveridge (58:31)

Yep. Yes, we’re the lucky ones.

Bill Gasiamis (58:35)

Absolutely, we are. And this seems to be more and more people that are managing to stay alive because of the amazing technology that we have access to these days that we haven’t had previously. ⁓ So

Heidi Loveridge (58:46)

Yeah.

Exactly.

Bill Gasiamis (58:52)

How it, what was the other than coming and connecting and chatting to me and being able to be extroverted, what else were you happy to achieve by coming on the podcast?

Heidi Loveridge (58:57)

Yeah. Yeah.

Well, I wanted to give other people hope.

that maybe they can be okay too.

Bill Gasiamis (59:09)

Yeah. Okay. It looks different for people as well. Right. So sometimes, okay. It mean that your deficits all go away. It means that you might, you might be able to achieve emotional okayness or mental okayness well with the stuff that you’re dealing with, even though you’re not going to be perfect at it, even though you can have bad days, even though it’s going to ugly and shitty and dark, like still we’re going to

Heidi Loveridge (59:11)

Yeah, exactly.

Yeah, exactly.

Yeah.

Mm. Yeah.

I’m going to to

Bill Gasiamis (59:38)

maybe perhaps be okay navigating all of that and get to the other side where we’ll be able to.

Heidi Loveridge (59:40)

Yes, exactly.

Bill Gasiamis (59:44)

beef feel feel like yeah, feel like we’re okay, you know, even though we know it’s hard and there’s tough times.

Heidi Loveridge (59:44)

Live a life that’s worth living.

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)

Well, yeah, do you feel like you’re…

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

Heidi Loveridge (1:00:04)

Yes, yeah.

And I was just easily happy before too.

Bill Gasiamis (1:00:09)

Hmm. And now the things that you desire, the things that come with a lot more effort seems like they’re a lot harder to attain.

Heidi Loveridge (1:00:20)

Yeah.

Bill Gasiamis (1:00:23)

Does that make you feel like ⁓ you need to step up and do more? Is that what it makes you feel like? What do you feel like? Say again.

Heidi Loveridge (1:00:30)

I wish I knew what to do.

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

Bill Gasiamis (1:00:36)

Hmm. You know, sometimes they say, I don’t know if this is me just minimalizing it and like being completely ignorant about the situation because I am ⁓ act as if you are happy. You know, those laughing classes.

Heidi Loveridge (1:00:40)

Mmm.

Yes, yeah,

like fake it till I make it.

Bill Gasiamis (1:00:55)

Yeah, like you did with extraversion.

Heidi Loveridge (1:00:58)

Yeah, exactly. I did fake it now I made it. Now I can be extra real.

Bill Gasiamis (1:01:04)

Yeah.

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)

Thanks.

Yeah, I know.

Yeah, feel actual happiness. ⁓

Bill Gasiamis (1:01:32)

illuminate those neuronal pathways where happiness

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)

Exactly.

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)

Indeed, yeah.

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)

Yeah.

Bill Gasiamis (1:02:26)

or speaking about yourself. So you’re to have people speak negatively about themselves. And there’s been lots of studies to sort of show that just thinking negatively about yourself is the same as saying it. What they’ve shown is the next stage of that, which is just thinking negatively about yourself or positively about yourself actually fires off fibers, muscle fibers in the jaw, in the mouth, where people usually where it goes to next when you start speaking. So

Heidi Loveridge (1:02:27)

Mm-hmm. Yeah.

Yeah.

Thank you.

you

Bill Gasiamis (1:02:56)

It feels like the circuit they’re talking about the circuit is much larger than just I thought about it, that it doesn’t have any more impact on the body. Yeah, but it definitely does. It ends in the way that your ⁓ dopamine activates your serotonin, you all those kinds of things. And then it also ⁓ fires off muscle fibers before

Heidi Loveridge (1:02:58)

Yeah.

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

Thank you.

Yeah.

Bill Gasiamis (1:03:25)

that stage before the jaw moves and speech happens. So it’s really important to, if you can fake it so that you’re practicing what it’s like to be happy, perhaps that might be the thing. But then also I want to make sure people are very aware and comfortable in understanding that if you feel unwell and then if you feel unhappy and if it is a problem that you don’t gloss over it and pretend that you’re okay.

Heidi Loveridge (1:03:27)

Yeah. ⁓

Mm-hmm.

Yeah.

⁓

yes.

Bill Gasiamis (1:03:54)

You definitely seek support in any way that you can to work through

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

Heidi Loveridge (1:04:00)

Yeah. I do, I am on medication as well for my doctor. Yes.

Bill Gasiamis (1:04:05)

antidepressants.

and have they been helpful for you?

Heidi Loveridge (1:04:11)

I don’t think so. Because if they were helpful, I’d be happy by now when I…

Bill Gasiamis (1:04:12)

Okay.

huh,

Heidi Loveridge (1:04:20)

Yes, I actually just offed my dose

this week.

Bill Gasiamis (1:04:23)

You’re off them.

Heidi Loveridge (1:04:24)

I upped it.

Bill Gasiamis (1:04:26)

you upped it. Okay.

Heidi Loveridge (1:04:27)

Yeah.

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)

And what’s the thing?

It does.

Heidi Loveridge (1:04:36)

Yes, actually my therapist told me that people who are neurodivergent also are more neuroplastic.

Bill Gasiamis (1:04:42)

I like.

Heidi Loveridge (1:04:43)

Mm-hmm.

Bill Gasiamis (1:04:44)

Okay. Did you get any more information on that? How are they more neuroplastic? Why?

Heidi Loveridge (1:04:49)

I should do some research on that because I just took her word for it.

Bill Gasiamis (1:04:52)

Yeah.

Yeah. And do you, are you neurodivergent?

Heidi Loveridge (1:04:57)

A little bit, There’s actually, there’s one comment, a doctor said, put a comment in my file that I said something that made him think that I might be slightly neurodivergent. I wonder what I said.

Bill Gasiamis (1:05:06)

huh.

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)

No. No. Nothing, yeah.

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

Yeah.

Thanks.

Bill Gasiamis (1:05:35)

to in a few months

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. Yeah.

Yeah, like troublemaker and stuff. Yeah.

Bye.

Bill Gasiamis (1:06:05)

Yeah,

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.

Yeah.

Bill Gasiamis (1:06:32)

I live a really relatively normal life. was able to overcome challenges. I work, I paid a mortgage off, I raised kids, but I think kind of getting there without a diagnosis kind of made it. What’s the word? I don’t know. I’m speaking for myself. Okay. Once again, for those people, sounds like it.

Heidi Loveridge (1:06:37)

Yeah.

You had to go the long way.

Bill Gasiamis (1:06:51)

It feels like that. Yeah. You kind of become resilient in finding solutions. Like you have to manage all of these things that you find solutions and you kind of get somewhere anyway. And while I like people having more information, I love it that people get diagnosis now you can, and you can go get tested, et cetera. I think while I think that’s great, I think the part that’s lacking is that now that you have this diagnosis, all it means is

Heidi Loveridge (1:07:02)

Yeah.

Mm-hmm.

Yeah.

Bill Gasiamis (1:07:19)

You just have to find a different pathway to get to your outcome because your additional pathway going to school, sitting down in the chair for eight hours a day, that’s not the pathway for you.

Heidi Loveridge (1:07:22)

Exactly. Yeah.

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.

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)

Yeah.

Mm.

Mm-hmm. Yeah, exactly.

Bill Gasiamis (1:08:06)

But it’s

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)

Mmm.

Yeah.

Mm-hmm.

Bill Gasiamis (1:08:34)

a real challenge, he had to overcome it. And now in his 50s, he’s starting to find really a

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)

Yeah.

Yes. Yeah.

Bill Gasiamis (1:08:55)

⁓ thing that, that he grew up with that his parents were from Greece. They came

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)

Yes.

Yeah.

Yeah.

Bill Gasiamis (1:09:19)

They were very mild, mannered and calm about his behavior.

Heidi Loveridge (1:09:22)

Yes, this probably helped.

Bill Gasiamis (1:09:24)

Yeah. And they never not loved him. They always, always still loved him and always, you know, did the best they could, but they just didn’t have the type of information that we have these days.

Heidi Loveridge (1:09:36)

Yes,

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

Bill Gasiamis (1:09:41)

That’s such a wise saying. Indeed. I agree with that. It’s a good thing, especially to remember when you’re being hard on your parents has given them bit of a break and allow them the grace to be imperfect.

Heidi Loveridge (1:09:52)

Mm-hmm.

Exactly.

Bill Gasiamis (1:10:03)

I wonder Heidi, as we wrap up, if you could share one lesson from your journey with someone that was recently diagnosed, what might it be?

Heidi Loveridge (1:10:05)

Yeah.

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.

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)

So far, this is great. Thank you.

Bill Gasiamis (1:10:41)

Well, thanks so much for listening to this episode. If Heidi’s story resonated with you, I’d really appreciate your support in helping this podcast reach more people who need purchasing the book.

by going to recoveryafterstroke.com/book.

Leaving a five-star review on iTunes or Spotify, supporting the podcast on Patreon, or simply commenting on the YouTube channel and sharing your thoughts.

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.

Long-Term Effects of Brainstem Stroke: The Hidden Deficits No One Talks About

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.

What the Brainstem Controls — And Why Its Damage Lingers

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.

Gastroparesis After Stroke: The Deficit Nobody Mentions

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.

CRPS and Ataxia: When the Nervous System Won’t Stand Down

“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.

The Athletic Mindset as Recovery Infrastructure

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.

The Emotional Cost of Looking Fine

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.

Recovery Has No Expiry Date

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.

Ty Hawkins: Six Years After a Brainstem Stroke, Still Fighting the Battles You Can’t See

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

05:54 The Day of the Stroke

11:35 Hospital Experience and Diagnosis

15:44 Mindset and Recovery

21:46 Therapy and Rehabilitation

24:25 Long-Term Effects of Brainstem Stroke

32:58 The Importance of Exercise in Recovery

38:21 Living with CRPS: A Daily Challenge

50:29 Emotional Resilience and Mental Health

01:01:28 Lessons Learned: Recovery Insights for Stroke Survivors

Transcript:

Introduction: Long-Term Effects of Brainstem Stroke

Ty Hawkins (00:00)

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

for a CAT scan and chest x-rays.

Bill Gasiamis (00:30)

Before we get into today’s conversation, I wanna take a moment to acknowledge something that I think a lot of people in this community quietly live with. The feeling that your

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, welcome to the podcast.

Ty Hawkins (02:15)

Thank you for having me.

Bill Gasiamis (02:17)

Thank you for being here. This is the second time we’ve tried to connect and have you on the show. Last time, if I recall correctly, you won an award or you graduated from somewhere.

Ty Hawkins (02:30)

I believe I had one either had a speaking engagement or I won an award where I wasn’t able to attend our our interview

Bill Gasiamis (02:42)

Yeah, what was the award? Do you recall?

Ty Hawkins (02:47)

That was a few years back. I don’t really recall offhand. I know there was a lot going on with me mentally at that time too. So I don’t really recall what it was. drawing a blank right now on that one.

Bill Gasiamis (03:01)

Yeah, fair enough. I do remember it was at least 12, maybe 18 months ago that we tried to connect. But that’s cool that you’re here now, man. Thanks for reaching out again. I was just going to ask like, what was your life like before the stroke? What were you up to? What was your regular day like?

Ty Hawkins (03:21)

So for me what I was up to both prior to my stroke I was really locked in and focused on my career. So I graduated college or university in 2015 and I was well into my career with Verizon here in the States and So my my day-to-day look pretty much like work and I was spending a lot of time just

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)

What kind of work did you do for Verizon?

Ty Hawkins (04:05)

So his Verizon, was at that time while I’m still in sales currently, but at that time I had just started my sales role and immediate like right prior to I was a sales manager, prior immediately prior to my stroke.

Bill Gasiamis (04:21)

huh. What was it like the day of the stroke? Or actually just before you answer that question, was there any signs that you were unwell, that there was potentially something looming, you know, anything give it away before the stroke that now you think that was probably a sign?

Ty Hawkins (04:40)

Absolutely. So looking back and now having the education and the awareness of stroke, know I remember just having numbness in my left foot ⁓ that started and felt like a little pebble in my left shoe. And I would take my shoe off and shake it out and nothing came out. And I had no idea that it was actually like the feeling in my foot.

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)

to the, what you just explained about your foot. That’s exactly what happened to me. My left, my big left toe went numb and then my entire left leg went numb, but it took me a week to get to the hospital. By then my entire left side had gone numb. So how long was it before you decided to do something about your numb foot and shin?

The Day of the Stroke



Ty Hawkins (05:54)

Mm-hmm.

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)

Wow, man. You had a brainstem stroke from a cavernous malformation. I had a stroke caused by a arteriovenous malformation, which is very similar kind of issue with the way that the blood vessels have formed. My one popped and then started to bleed like really, really slowly. It sounds like yours did something similar. So

Ty Hawkins (08:17)

AVM, correct?

Bill Gasiamis (08:33)

you’re going through this for a couple of weeks, you go and see the neurologist and the next day you’re in hospital, how dramatically did it escalate between the neurologist appointment and the next day?

Ty Hawkins (08:44)

⁓ So it escalated very very fast so the next day I woke up and it was that my engagement photo shoot so what a day right and

Bill Gasiamis (08:57)

Wow.

Ty Hawkins (08:58)

I’ll go to the bank I take a five-minute drive from my house to the bank and what happened on my way back is just off I couldn’t explain what was going on I just had an all feeling so I told my wife I wasn’t able to drive to any of the other appointments that I had that day prior to our shoot and on the way to our photo shoot so things progress

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.

Hospital Experience and Diagnosis

It’s going because in my dream or

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)

Wow, man, that is a crazy story. ⁓ Firstly, how did the photos turn out?

Ty Hawkins (12:39)

photos they turned out good I would say in spite of the circumstances but if you look at the photos in as you know as well as we understand stroke you can look at my face and see the the facial droop in my top lip so as I’m trying to smile you my smile wasn’t wasn’t aligned it was it droops slightly so the right side of my face was impacted so I had a juke going to the right

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

Bill Gasiamis (13:17)

All things considered. Yeah. That is unbelievable. This dream like who now this is going to get trippy. I know like who was that in your dream that gave you that information.

Ty Hawkins (13:30)

So for me, at that time, I mean even now, I say it was God for me, speaking to me and letting me know that I needed to get to the hospital. And then at the hospital, when the doctor came in to give the news that they found what they thought was a mass on my brain, I remember

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)

I love it that that was God with you, man. Why not? That is amazing. And that the person or that spirit or the being was in the room with you as well. Reassuring you. Wow.

Ty Hawkins (14:22)

Yes.

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)

Wow, man. So I had some moments when they gave me the news. I was at the hospital alone. It was probably 11 p.m. at night. It was a Saturday night. No, it was a Friday night. I’d sent my wife and the kids home because I didn’t want them to wait for hours and hours to find out the news, go home and rest and look after the kids. They were young teenagers, both of them at the time. And I was…

Mindset and Recovery

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)

Yes, I think that definitely set the tone. Having that experience and not… I never felt in danger. I knew that the journey, this process, wasn’t going to be easy. But I never felt that I was in danger. That my life was in jeopardy.

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.

Therapy and Rehabilitation

Bill Gasiamis (21:40)

I love that athletic mindset, right? Your coach probably drilled you for years, know, like get up, get going, keep going, keep moving, push through, overcome, ⁓ try harder, you know, be more strategic, whatever, like the whole athletic mindset applied to stroke recovery. I reckon it’s such a massive, ⁓ like it’s such a massive benefit to have that going into a diversity, like recovering from a significant health.

⁓ 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)

you

Bill Gasiamis (23:00)

Appearing to be kind of naturally gifted because of his body shape because of his athleticism because of his height But it meant nothing if he didn’t do the work every single day

Ty Hawkins (23:12)

Yes, yes, and even you know from a spiritual perspective There’s the saying that faith without works is is dead And so for me I had the faith and I knew that I needed that there was work work required of me I think even after ⁓ my experience of so as I mentioned I spent three weeks in the inpatient facility once I understood the magnitude and how much my

Long-Term Effects of Brainstem Stroke

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)

Hmm.

Ty Hawkins (25:06)

with recovery, it’s every day. Once I understood what therapies that I would have to do. ⁓ So I remember in the inpatient facility, my first week there, the nurses would come clip my schedule to my wheelchair and they would come get me for therapy. After the first week, they would come clip my schedule to the wheelchair and they’d never, they wouldn’t come to get me because they knew that

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 to ask for permission to walk back to the therapy room ⁓ on my own because they were afraid I was going to fall and it was fair enough because my left side wasn’t really working well after about two and a half, three weeks I was on my feet but I still was quite unstable and they said, look, we’re not gonna let you walk alone. We’ll come, but we won’t help you like we have been helping you. We’ll just watch you walk. I was like, yes, do that.

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)

Thanks, Ted.

physical, yes.

Bill Gasiamis (27:49)

imagined myself exercising, I imagined myself walking, I imagined what it would look like when I was on my feet, etc. Because it rewires the same part of your brain as if you’re actually doing it. So I thought, right, if you’re not going to be with me, ⁓ taking me for the actual therapy, I’m going to imagine myself doing the therapy.

Ty Hawkins (28:11)

No, I was the same so For me, I didn’t so I couldn’t really Walk in the big the first the first week I spent a lot of a lot of the duration of my three weeks I spent in the in a wheelchair there, but I was able to in The first week I needed a lot of help moving from the bed to the wheelchair But after a while I could get myself out of bed

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)

Yeah, same.

Ty Hawkins (29:37)

But just, you would help, RMOF would help as much as they could for me to get extra, ⁓ some extra time and extra movement in outside of just the hour and a half that I was in the therapy session.

Bill Gasiamis (29:52)

Yeah, I love that. My parents came along as well. said to my wife and everyone came past and I spent time outside with them, you know, having some time in the sun, a meal, a coffee, something like that. That was really helpful. I think you and I also both benefited from the fact that the bleeds, although really serious, were not catastrophic bleeds and we had a lot of time to react.

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)

Please hit.

Yes.

Bill Gasiamis (30:47)

also still though like me living with deficits right and you’ve got a few of them let me just read out the list you’ve got left-sided numbness and tingling which i have and weakness which i have but you’ve also got ⁓ a taxia which you’ll tell me about in a minute double vision ⁓ you’re going to also tell me about gastroparesis and crps so for someone that is so upbeat

Ty Hawkins (30:51)

Yes.

Bill Gasiamis (31:16)

looks like you do ⁓ like you haven’t had a strike, etc. You are experiencing some ongoing deficits years out. So first, tell me a little bit about a taxia. What’s that?

Ty Hawkins (31:24)

Yes.

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

The Importance of Exercise in Recovery

Bill Gasiamis (32:52)

Okay, cool. Interesting. So I have a very minor version of that. My left side, probably not as coordinated as my right side anyway, because I’m right side dominant. But now my left side is just a little bit out, you know, and when I get tired, my balance goes off. And ⁓ I find myself leaning in one direction. I lean into the doorway, you know, when I’m really tired, getting out of bed in the morning, I need to make sure that my foot is on the ground so I don’t lose my balance.

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

Ty Hawkins (33:27)

So, ⁓ just from having the brain stem is in control ⁓ of a lot of your, not basic functions, but your essential functions. So breathing, heart rate, digestion. So what gastroparesis is, is there’s ⁓ a lack of communication between my brain and the vagus nerve.

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)

I hear you. Unexpected, ⁓ unexpected side effect of a stroke, right? People hear stroke, they, they know it’s associated to the head, but gastrointestinal issues become a massive problem for some people after stroke because the two are linked. And, you know, you can heal your brain by healing your gut. And when I say heal your brain, you can improve how it functions by healing your gut. ⁓

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)

Yes.

Bill Gasiamis (35:31)

you have a meal and it takes longer to digest or and therefore it causes discomfort therefore you are you avoiding food because of that?

Ty Hawkins (35:41)

Some days some days ⁓ You know and that it this one really my wife it’s you need to have you need to eat you need to have your meals and Like I’m not really hungry. It’s ⁓ is a lot of times I’m confused because I have such a discomfort in my stomach that I don’t know if I’m full or if is discomfort from you know, just just everything neurologically

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)

Hmm. Yeah, it makes sense that you would. And I met a guy many years ago, we’re talking about maybe 10 years ago, who had a similar thing to you, but a little more dramatic in that he didn’t get hunger messages at all.

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)

I’ll get you know I think that sometimes that that may happen where I’m just not getting the signal and but I’m aware that hey I know I need to eat I’m aware that maybe it’s been a day or I have a workout coming up that I know I need to eat for and sometimes it can just be I can have a banana and It feels like I had a full a steak

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

Living with CRPS: A Daily Challenge

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)

I hear you. Exercise is so important. Like doesn’t matter what condition you’re in after stroke, you got to find a way to move your body as much as possible. And it causes so many positive cascades in your body that you, the bang for buck by exercising that your brain and body gets, it’s just unmeasurable. You cannot measure it. It’s so, so important. ⁓ And I love that you experienced direct benefits that you’re aware of.

when you exercise.

Ty Hawkins (39:27)

Yes, and that’s that’s the physical benefits and it’s also been very Beneficial mentally to mentally emotionally because a lot of people don’t Really when you hear a stroke and you think a recovery is just hey the physical recovery and hey you look great tie and like I Do look great, but internally some days I don’t and mentally some days I don’t but I know that

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)

Yeah, we are meant to be moving. We’re moving creatures, you we’re meant to be moving, not sitting down too much, you know, driving desk work, all that kind of stuff is not normal. And we’re to be doing the, the physical version of getting somewhere like walking somewhere or, you know, running or, riding a bike. And if you can’t get on a bike, get a

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)

Yes, yes, I just I made a video about that and I posted it Maybe two days ago about the gym and I woke up I was a little tired and I still got up and I went to the gym and after I said that same thing that Though I got the hard work done. The work was hard, but not moving is hard too. It may not

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)

I love that. That’s a beautiful way to wrap that up is by saying the repercussions of not moving your body. It’s exactly what it is. They occur. Your hips get tight, your joints change in their ability to handle stress. Your bones get ⁓ thinner. You know, like so many things change in a negative way. You got to move even if you’re doing a real, you know, if you have a real challenging stroke experience and stroke.

⁓ 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)

⁓ So it was misdiagnosed for some years as just neuropathy Which is the numbness and tingling on my left side? So if I if you were to look at me and draw a straight line down My right side feels What do you know the ⁓ normal person would feel you know? ⁓ It’s just freely flowing it feels normal right and my left side is just

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)

What about the big shades? What about big shades?

Yeah.

Ty Hawkins (45:44)

I don’t know. just I don’t complain about it and it’s like hey, you know, this is what I have to deal with So it’s constant like times. I feel it deep within my abdomen. I’ll feel it in my shoulder ⁓ You know, but CRPS it attacks ⁓ It’s essentially your brain just signaling that it is your brain stuck in a fight-or-flight cycle and it’s constantly Signaling that there’s some it’s a threat or some kind of pain is happening. So

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)

my wife gets in trouble when she touches my left hand and she’s being gentle. If she’s being gentle, it’s like, dude, do not do that. She’s like, what do you mean? I’m being gentle. being rough. Don’t just be gentle with it. It hurts too much. It’s hurting now. And I’m in an enclosed room with no wind, no anything, but my left arm feels like it’s cold.

Ty Hawkins (48:16)

Mm-hmm.

Yeah.

Yeah.

Bill Gasiamis (48:38)

freezing while my right side is perfectly fine. You know, it’s a very mild, beautiful day outside. ⁓ the wind, when I go outside, if I’m wearing shorts and a t-shirt, the wind makes it hurt. And if I go to the beach, I have to wear, ⁓ what we call runners, trainers, joggers in the water because the little pebbles of sand, they feel like they’re, I just stepped on like a thousand pins.

Ty Hawkins (49:01)

Mm-hmm.

Bill Gasiamis (49:07)

or something, it’s just ridiculous. And then I sleep on my left side so that I can, like you do with your hand, you just squeeze it to just let it know like it’s okay. I sleep on my left side so the sheets don’t rub on my left side and I don’t get woken up by my sheets in the middle of the night. That’s how I kind of get around it. And I would say that my pain is around a three to a four, mostly.

Ty Hawkins (49:08)

you

Go.

Emotional Resilience and Mental Health

Bill Gasiamis (49:37)

kind of closer to a three. And when we go for a long walk, sometimes I’ll go for a long walk with my wife. If we’re visiting a city that we’ve never been to before, we love to see the city on foot the whole time. And we might be walking for four, five, six hours through the whole day after, you know, stopping for a coffee or something to eat or whatever. And my left side will be going, we are not doing this anymore. We’re completely done.

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)

Yes, yes, so the two things my wife, ⁓ so she likes to pick at my skin sometimes whether she sees a little pimple or something and I’m like, please not today. It’s days that I can tolerate it, but it’s days where, and in the beginning she didn’t understand. I didn’t either and I’m like, am I just overreacting? I’m like, no, this really hurts. And so as I started to understand my diagnosis, I explained it to her and she’s been.

Bill Gasiamis (50:49)

you

Ty Hawkins (51:07)

you know more aware and I’ll let her know if it’s like hey I’m fine today it’s good so you’re good to go and two I remember ⁓ she loves Disney so we went to Disney World for her birthday and that’s a lot of walking a lot of people so ⁓ and when I get overstimulated then sometimes I get a little irritable

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)

I relate to that so much, man. I get stuck. You know that feeling that you get in your hand? I get it in the ball of my left foot. It just becomes really, really tight. Like it feels, it doesn’t close up or anything, but it becomes really, really tight. And I can’t do anything to…

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)

Mm-hmm.

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)

Hmm.

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)

Yes.

Bill Gasiamis (54:28)

four days, 10 days, whatever it is, you whatever I get out of it. ⁓ And some days I feel like, man, need to see that. I need to see somebody right now. And I can’t get an appointment, but then by the time I get to the next day, it’s settled.

Ty Hawkins (54:38)

Mm-hmm.

Yes.

Bill Gasiamis (54:45)

So sometimes the cycle

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

Ty Hawkins (54:54)

No, yeah, I definitely think that allowing some days for the body to just rest and you know kind of catch up and recover does does the brain and body very well? ⁓ You know, I think I know for myself I was so Engulfed in I have to do something every day every day and keep my body moving that I wasn’t allowing it to rest in

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)

Yeah, it’s so important to you. You need time out, man. I hear you. ⁓ So you’re you’re being a few through a few tests and you’ve had some challenges to overcome. You’ve made it through your generally very positive, upbeat, glass half full kind of guy. But there probably was some dark times and difficult moments. How did you?

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)

Before I used to just try to keep myself busy at first not realizing that that was almost making it worse in a sense because I was never dealing with the emotion of What I experienced I never allowed myself allowed myself to fully understand and feel it until recently and so recently I started Started talk therapy psychotherapy. ⁓ that’s been tremendous. And then also just really

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)

Yeah, there is always a, what’s it like a reward on the other side of the hard time. Like you might not know when you’re going through the hard time, but it always leads to a positive outcome on the other side. You just got to give a time to get there. You know, got to just go through the ride and I’m similar to you talk therapy, man. Well, what a difference that’s made in my life. It just is so tremendous that you find somebody by the way, who you like to go and talk to.

⁓ 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)

Yes, yes, it’s been, it’s made a tremendous difference for me and I see, you know, this is, moving into year seven and early on I refused to go to therapy and, ⁓ you know, I think it wasn’t, it wasn’t until year three or four that I really decided to see, really dig in and understand therapy and realize that, it’s not just, I talk about the stroke less and less now.

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

Bill Gasiamis (1:01:03)

Man amazing start to your week. Well done. I love it that it’s every Monday Your where are you doing this recording from now, where are you?

Lessons Learned: Recovery Insights for Stroke Survivors

Ty Hawkins (1:01:14)

Actually, I’m actually at work. ⁓ so I was able to return to work. ⁓ Fortunately, so I’m back with with Verizon ⁓ You know Emma in my sales role, so I was able to return to my career and In addition to my career being able to speak and do things like that. But currently I’m at work We’re getting ready to close up shop soon But they gave me the time because they they are very accommodating and understanding how important this is to me

and they support me here on my journey.

Bill Gasiamis (1:01:48)

Wow. This episode is not sponsored by Verizon, but thank you Verizon for allowing this to happen, man. Yeah. We love it. All right. I really appreciate that. ⁓ sounds like the stroke incident has shaped your life in a meaningful way.

Ty Hawkins (1:02:08)

Yes, yes it has. would say I was a very selfish person before and I don’t mean that like ⁓ in a bad context. was I just thought about myself and my goals and not how my life could impact others. And after the stroke, just being, you know, given this story and seeing how I had no idea that me sharing that I had a stroke and

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)

Yeah, I’m with you, man. I love what you said about like, how you you’re impacting, you know, you’re aware of how you can impact people, we impact people all the time, negative, positive, whatever it is all the time, you may as well focus the needle towards positive. If you become aware of it, you know, it’s way better. You get much more reward than just being about yourself. I mean, what a

Ty Hawkins (1:03:54)

Yes.

Bill Gasiamis (1:04:03)

And I was the same, like we all kind of start there. You know, it’s about how do I succeed? How do I make the next dollar? How do I do this? How do I do that? And then at some point you shift. And for me, the catalyst was the strokes for you. It seems like it was the same thing. And the reward that I never thought I would get from shifting the needle towards helping other people has been way, way greater than anything I ever ⁓ focused on before.

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,

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)

I love it. Cross culture, ⁓ cross country, cross religion. Like it’s just human, right? Like it’s got nothing to do with any of that other stuff. It’s literally just got to do with human. ⁓ I know that you need to get back because I’ve seen you looking at your watch right now. So.

Ty Hawkins (1:06:48)

Right.

I

was just saying what time it is 8 15 here

Bill Gasiamis (1:06:57)

Yeah, we’ve been going for about an hour and a bit. we’ll wrap up. I’m near the end anyway, but I do want you to get back to work. I love the Verizon have done this by the way. So I really appreciate that. So I suppose the last question is about like, there are people listening right now, some of them will have just gone through stroke, literally the last week, weeks, months might be into their first year. What would be one lesson from your journey ⁓ that

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)

Early on, ⁓ I think that it’s really, it might be cliche, but it’s don’t compare your recovery to anyone else’s recovery. Your journey is your journey, especially in the stroke community. No one stroke, no two strokes are the same. So no two recoveries are the same. So, you know, and the biggest thing, the biggest misconception that I hear is that

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)

Mm hmm. I completely agree with that. I like to describe it using this analogy. In the first 12 months, you’ve just walked past the table and banged your knee on the coffee table. That’s how early the first year is you just banged it like, my God, you got so much time to heal and recover after that. And if you hear about plateaus, it’s all rubbish. If you hear about ⁓ recovery doesn’t happen.

⁓ 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)

Exactly.

Yep, I agree.

Bill Gasiamis (1:09:07)

Ty, on that note, thank you so much for joining me on the podcast, reaching out a second time to join me. I really appreciate connecting with you and learning about your story and all the best with the rest of your recovery.

Ty Hawkins (1:09:20)

Thank you for having me. ⁓ Thank you for ⁓ allowing me to reschedule and to be here. And I look forward to staying in communication and helping out in any way that I can for our community.

Bill Gasiamis (1:09:35)

Well, a big thank you to Ty for sharing his story. just love his mindset and a huge thank you to you for tuning in every week, supporting the podcast via Patreon, leaving comments on the YouTube channel and sharing this episodes with the people who need them the most. My book is at recoveryafterstroke.com/book. I will see you in the next episode.

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

Emotional Anger After Stroke: Trisha Winski’s Story of a Carotid Web, Aphasia, and Learning to Slow Down

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.

What Is a Carotid Web — and Why Does It Matter?

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.

 

Why Am I So Angry After My Stroke?

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.

 

Aphasia: The Deficit That Hurts the Most

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.

 

The Trauma Ripple: It’s Not Just About You

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.

 

Neuroplasticity Is Real — Give It Time

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 

DisclaimerThis 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.

Why Me? Navigating Emotional Anger After Stroke When You Did Nothing Wrong

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.

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Highlights:

00:00 Introduction – Emotional anger after stroke

01:36 The Day of the Stroke

07:05 Post-Stroke Challenges and Rehabilitation

13:06 Ongoing Health Concerns and Medical Appointments

22:40 Navigating Health Challenges and Medical Support

30:20 Acceptance and Coping with Mortality

38:36 Communication Challenges and Aphasia

42:09 The Journey of Recovery and Self-Discovery

51:51 Facing the Aftermath of Stroke

59:22 Emotional Impact on Loved Ones

01:04:57 Navigating Life Changes

01:13:25 Finding Joy in New Passions

01:25:12 Trisha’s Journey: Emotional Anger After Stroke

Transcript:

Introduction – Emotional anger after stroke

Trisha Lyn Winski (00:00)

I don’t have anything that could cause it. I have nothing that, no blood pressure, no diabetes, It’s hard. 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 (00:07)

Yeah.

Trisha Lyn Winski (00:21)

or every dozen. I’m like, why me? Why did I have to have it? It’s frustrating. It’s so frustrating.

Bill Gasiamis (00:28)

Yeah, mad at who?

Trisha Lyn Winski (00:30)

I don’t know. I’m just mad. Like, I don’t know who I’m mad at.

Bill Gasiamis (00:35)

Before we get into Trisha’s story, and this is a raw, honest, and really important one, I wanna share a tool I’ve been using that I think can genuinely help stroke survivors get better answers faster. It’s called Turn2.ai. It’s an AI health sidekick that helps you deep dive into any burning question you have about your recovery. It searches across over 500,000 sources related to stroke, new research, expert discussions,

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 Winski, welcome to the podcast.

Trisha Lyn Winski (02:09)

Thank you.

Bill Gasiamis (02:10)

Also thank you for joining me so late. I really appreciate people hanging around till the late hours of the evening to join me on the podcast. I know it’s difficult for us to make the hours that suit us both. I’m in the daytime here in Australia and you’re in the nighttime there.

Trisha Lyn Winski (02:27)

Yeah. Yeah. It’s okay. I can come to you later. Yeah, it’s late.

Bill Gasiamis (02:34)

As a stroke survivor, is it too late?

Trisha Lyn Winski (02:36)

No, no, not at all.

Bill Gasiamis (02:38)

Okay, cool. Tell me a little bit about what you used to get up to. What was life like before the stroke?

Trisha Lyn Winski (02:45)

I just get up and get to work.

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)

How old were you in the district?

Trisha Lyn Winski (03:02)

I was 46.

Bill Gasiamis (03:04)

And before that, were you in a family, married, do you have kids, any of that stuff?

Trisha Lyn Winski (03:08)

I

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)

Dramatic,

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

Trisha Lyn Winski (03:37)

⁓ It’s three years and three months.

Bill Gasiamis (03:41)

Yeah. What were you focused on back then? What were the main goals in your life? Was it just working hard? Was it getting to a certain time in your career? What was the main goal?

Trisha Lyn Winski (03:50)

I think

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)

What kind of work did you do?

Trisha Lyn Winski (04:18)

I was the corporate finance director for an auto group.

Bill Gasiamis (04:22)

A lot of hours was it like crazy hours or was just regular hours.

Trisha Lyn Winski (04:26)

No, I worked a lot of hours, but in the end he wanted me work like 40, 50 hours a week. I couldn’t do that. 50 hours a week was killing me, but 40 was enough. Yeah.

Bill Gasiamis (04:37)

Yeah.

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)

No, nothing, The day before this, had, my eye was like, I want to say it’s twitching, but it wasn’t twitching. It was doing something like odd. And I didn’t realize that until I had a TIA recently, but I realized it then. It’s, how can I explain it? It’s like a clear, a blonde shape in my eye. it, when I move, it goes with me. And I try to see around it, I can’t see around it. And I said to Gary, I worked with him, was like,

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)

Hello?

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)

Yeah, it went away in like, honestly, like five minutes. So I didn’t see anybody, but I thought it was okay. I mean, I guess now that I’m looking back at it, it’s kind of odd. It’s one eye, but I felt like it was gone. I don’t know. yeah. No, you don’t.

Bill Gasiamis (05:55)

Yeah. How could you know? mean, no one knows these things. And,

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)

No, so I get up like every other day to go to work. I went in the bathroom and the night before that Jason said Jason’s ex-ad he stayed at my house because he needed need a place to stay because he couldn’t go out Zach again. I was like okay we’ll sleep in my couch I’m gonna go to work tomorrow but you can sleep here. So he was there and I think if he wasn’t there I would have died.

Post-Stroke Challenges and Rehabilitation

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)

but you can hear him say that.

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)

It does.

Bill Gasiamis (08:09)

There’s small blessings there with you, okay? All happened when for whatever reason your ex was in the house and was able to attend you. It’s an amazing thing that that is even possible ⁓ considering how some breakups go and how possible. Yeah. Yeah. And so he called 911 and got you to hospital. Is that how you ended up in hospital?

Trisha Lyn Winski (08:15)

I know.

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)

Yeah. And do you get a sense of what happened when you were in the hospital? Do you have any kind of recollection of what was going on?

Trisha Lyn Winski (09:11)

I honestly, in the first week, no. I remember seeing, in the first day, I saw Zach, my son, and Zach, his brother Connor was in there too, and Jason, they all were there with me when I woke up. But I saw them, and I saw my friend Matt, and then that’s all I remember seeing. I remember seeing my mom on the third day.

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

Bill Gasiamis (09:41)

Yeah. And then did you have deficits? couldn’t feel one of your sides? Did that come back, whole problem, that whole challenge?

Trisha Lyn Winski (09:50)

So the right side, it came back, but it came back like sporadically. So I just kind of want to come back. So the first day I saw Matt and I put up my arm to talk to him and I couldn’t like put my arm out. So I just like tap my arm. ⁓ Now I can move my arm fully, but I can’t, I don’t have the dexterity in my arm. So I can’t like.

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)

Okay, next.

Trisha Lyn Winski (10:37)

and I did botox

for it, nothing helps.

Bill Gasiamis (10:40)

huh. Okay. Have you heard of cryo-neuralysis?

Trisha Lyn Winski (10:42)

yeah, yeah, I got that back.

Bill Gasiamis (10:45)

You got cryo-neuralysis?

Trisha Lyn Winski (10:47)

No, what are you saying?

Bill Gasiamis (10:49)

That’s spasticity treatment. Cryo-neurolosis, it’s a real weird long word. There’s a dude in Canada that ⁓ started a procedure to help freeze a nerve and it expands the ⁓ tendons or something around that and it decreases spasticity and it lasts longer than Botox.

Trisha Lyn Winski (10:50)

⁓ no.

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)

Okay.

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)

Yeah. Yeah. Awesome. I love it.

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)

for weeks.

Ongoing Health Concerns and Medical Appointments

Trisha Lyn Winski (13:05)

It went from the aneurysm to the, not the aneurysm, the.

Bill Gasiamis (13:09)

The carotid artery. The clot, ⁓

Trisha Lyn Winski (13:11)

⁓ yes. Yeah,

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)

Okay. And then did you go straight home? Did you go to rehab? What was that like?

Trisha Lyn Winski (13:29)

I went to rehab for three weeks. And I sobbed my eyes out. So at that point I was like, I was good, but I wasn’t at all good, but I thought I was good. I said, I wanna go home, I wanna go home. My son can, he teach me all, do all this stuff, I gotta go home. Now that I’m past it, there’s no way he could tell me, no way. I couldn’t tie my shoes.

Bill Gasiamis (13:34)

three weeks.

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

Trisha Lyn Winski (13:56)

So he’s.

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

Bill Gasiamis (14:06)

Yeah, your son, yeah. What was that like?

Trisha Lyn Winski (14:07)

Yeah. Here’s my proxid.

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)

Yeah.

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)

⁓ So I had a karate web. means that… ⁓

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)

Yep, congenital.

Trisha Lyn Winski (15:13)

congenital, but they don’t know. I said that that would make it so much sense that they did a scan of your whole body at some point. I would have known that I had that years ago, but I didn’t know it.

Bill Gasiamis (15:26)

I don’t know

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)

I know.

Yeah.

Bill Gasiamis (15:53)

What are we looking for? I said, I don’t know anything. He said, well, we could, we could find a heap of things or we could find nothing. And if we don’t know what we’re looking for, we can’t set our scanners to the particular, settings to find the thing that you’re looking for. Because one scanner looks for hundreds of different things and the settings for to look for that thing has to be set into the scanner. And that’s only when people have a suspicion that you might have X thing.

Trisha Lyn Winski (16:09)

Yeah.

Bill Gasiamis (16:23)

then they set the scanner to find X thing and then they’ll look for it then they find it. He said, well, if we go in and do whole body scan, but we don’t even know what resolution to set it, how long to do the scan for. We don’t know what we’re looking for. So we don’t know what to do. And you have to be able to guide me and say, I want you to look for, in my case, a congenital arteriovenous malformation. In your case, carotid web. And in anyone else’s case is an aneurysm or whatever, but a general scan.

Trisha Lyn Winski (16:38)

Yeah.

Bill Gasiamis (16:53)

Like it’s such a hard thing to do for people. then, and then sometimes you said you find things that people do have unexpectedly because they go in for a different scan and then you discover something else. But now they’ve got more information about something that’s quite unquote wrong with them. And it’s like, what do you do with that information? Do I do a procedure to get rid of it? Do I, do I leave it there? Do I monitor it? Like, do I worry about it? Do I not worry about it?

Trisha Lyn Winski (16:56)

Yeah.

Bill Gasiamis (17:21)

is that it throws a big kind of curve ball out there and then no one knows how to react to it, how to respond. So it’s a big deal for somebody to say, can we have a whole body scan so we can work out what are all the things wrong with me?

Trisha Lyn Winski (17:38)

I it’s true, but I think that for me, most people have a carotid web. It’s obvious. know how old you are, it’s obvious. So then in that regard, like a carotid web, it looks a little indentured in the bloodstream. looks a little indentured in your artery. So I think that they would have seen it, but… ⁓

Bill Gasiamis (18:02)

I love her.

Trisha Lyn Winski (18:06)

But then again, I don’t know. The hospital I went to, he said, you’re lucky you came here because most hospitals would have missed us.

and I’m like,

Bill Gasiamis (18:15)

because they

probably didn’t have the technology to find it.

Trisha Lyn Winski (18:17)

I don’t know.

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)

I just did a Google search for it and it says a carotid web is a rare shelf like membrane type narrowing in the internal carotid artery, specifically arising from the posterior wall of the carotid bulb. It is a form of intimal fibromuscular dysplasia that causes blood to stagnate forming clots that can lead to recurrent often severe ischemic strokes. Okay. So

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)

Yeah.

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)

thing.

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)

Thank you.

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)

You know

that that’s kind of mental.

Trisha Lyn Winski (21:08)

It is actually, but I know that like my son is actually really smart and I think that they, but I didn’t listen him. I just listened to Chad Judy.

Bill Gasiamis (21:18)

Yeah. Anyhow, I love that you went in the end because, ⁓ and why don’t you want to go like, you just hate doctors and hospitals and that kind of thing? They saved you, didn’t they? Didn’t they save you? Didn’t they help you?

Trisha Lyn Winski (21:29)

There was? Yeah,

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.

Navigating Health Challenges and Medical Support

Bill Gasiamis (22:46)

Yeah.

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)

Yeah.

Bill Gasiamis (23:15)

when the blood flow has stopped to your head for a lot of hours. Like it could kill you, it make you more disabled and it could do all sorts of things. it’s like, but I get the whole, what is it like? It’s kind of like an anxiety about medical people and hospitals and stuff like that.

Trisha Lyn Winski (23:20)

Yeah.

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)

Yeah, you’re done with them.

Trisha Lyn Winski (23:56)

I’m totally done.

Bill Gasiamis (23:58)

Yeah, I get it. I got, I got to that stage. My dramas were like three or four years worth of, you know, medical appointments, scans, surgery, rehab.

Trisha Lyn Winski (24:07)

Oh my god. Medical appointments.

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)

Yeah.

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)

Yeah.

I know.

Yeah.

Bill Gasiamis (25:14)

You know, a lot of people don’t get to have, it’s like, whatever, you know, I’ll cop it. I’ll cop it. I’ll go. And hopefully they can get ahead of it. So now they’re just changing my medication. I want to get to the bottom of it. Why have I got high blood pressure? The challenge with the medical system that I have is, is they just tell you, you have it and here’s something to stop it from being high. But I, they never say to you, we’re going to investigate why, like we’re going to try to get to the bottom of it.

Trisha Lyn Winski (25:16)

Yeah.

Yeah.

Bill Gasiamis (25:40)

and I’ve been pushing them to investigate why do I have high blood pressure.

Trisha Lyn Winski (25:44)

sure. So I

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)

Yeah.

Trisha Lyn Winski (26:13)

Afib or something like that in there. And this time was the same thing. had heart bars over there right now. I had to send it back and they’re gonna send me new one. every time I’ve taken my heart test, and by the went for EKG just the other day. It was fine. But they found like something near my heart rate, it’s not like I need to be concerned about these. It’s nothing I need to be concerned about. So I was like, okay.

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

Bill Gasiamis (26:46)

Yeah, just to go through things, just to check things, just to work some stuff out.

Trisha Lyn Winski (26:47)

Yeah.

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

Bill Gasiamis (26:56)

Yeah, I used to forget my appointments all the time, even though I had him in my calendar, even though I had reminders, I just, even though I got reminded on the day, an hour before, two hours before, he meant nothing to me. I would just completely forget about him.

Trisha Lyn Winski (26:59)

me too.

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)

Yeah.

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

Trisha Lyn Winski (27:28)

I at least I went back to work. I went back to work before I was told I could go back to work. And I wrote them an email like, listen, I can’t sit at home and run one fucking freeze. I need to do something. So I went back to work. ⁓ And at first I went back to work part time. And honestly, like I cried. I left there crying every day. And not because I think that I.

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)

Yeah. Do you kind of like a nervous energy type of person? Do you can’t sit still or is it like, can’t spend a lot of time on your own with yourself? Like, is it?

Trisha Lyn Winski (28:34)

I can spend a lot of time by myself. don’t like to ⁓ here by myself. I can be by myself. I don’t like to be… I can’t think of… What did you say before?

Bill Gasiamis (28:48)

Is it just

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

Trisha Lyn Winski (28:52)

Yes, definitely too much downtime. But I couldn’t see I was sitting at home and Zach was there, whatever he was doing. was like, I can’t, I need to do something. So I went to work and in all reality, I should have walked around. should have, I didn’t do that.

Bill Gasiamis (29:04)

Yeah.

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)

Yeah, so I oversaw all the finances department. ⁓ They were actually like, honestly like rock stars. They were like really, really good to me. ⁓ That was helpful. because I love them anyway. it made me feel good to say that that’s what I’m doing. ⁓ But I still left there and cried. Not because like I think that I just couldn’t understand it.

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

Bill Gasiamis (29:56)

you had trouble with the work, with doing your job because of your cognitive function.

Trisha Lyn Winski (29:59)

Yeah, yeah,

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)

Yeah. Tiring. Like I mentioned, it’s really mentally draining and tiring. remember sitting in front of a computer trying to work out what was going on on the screen and it being completely just blank.

Acceptance and Coping with Mortality

Trisha Lyn Winski (30:22)

And so that’s actually what probably got me the most was that what you’re saying. I’d be sitting there and look at my screen. I couldn’t remember what I was doing, but I remember like weird things. I remember how to do like Excel. I don’t know how I remember Excel, but I did. I was really good with numbers. And they said that I was going to have a problem with numbers and everything. So I have aphasia too. I don’t have a choice with that, but

Bill Gasiamis (30:31)

Yeah.

Trisha Lyn Winski (30:49)

That’s why I talk so weird.

Bill Gasiamis (30:52)

Okay, I didn’t notice.

Trisha Lyn Winski (30:54)

Oh, oh, I feel good. But

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)

I understand. So you went back to work. It was kind of helpful, probably too early to go back, but good to be out of the house. Good to be connecting with people again. And has that improved? Did you find that you’ve been able to kind of get better in front of a screen, better with the things that you struggled with, or is it still still a bit of a challenge?

Trisha Lyn Winski (31:19)

Yeah.

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)

Understand.

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. Yeah.

Yeah.

Bill Gasiamis (32:23)

When some, well, something goes through something serious, something difficult, you know, there has to be kind of this acceptance of where they’re at. And that’s kind of the first stage of healing recovery, overcoming. Where are you with all of this? you like, totally get that at 46. It’s a shock to have a stroke. You look perfectly fine, perfectly healthy. This thing that you didn’t know about that you’ve had for 46 years suddenly causes an issue. How do you deal with your mortality and knowing that

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)

I drank occasionally, I wasn’t a drunk, I don’t smoke.

Bill Gasiamis (33:11)

yeah

social smoke social drinker but not smoker

Trisha Lyn Winski (33:15)

Yeah, I don’t smoke.

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)

Yeah.

Trisha Lyn Winski (33:41)

or every dozen. I’m like, why me? Why did I have to have it? It’s frustrating. It’s so frustrating.

Bill Gasiamis (33:48)

Yeah, mad at who?

Trisha Lyn Winski (33:50)

I don’t know. I’m just mad. Like, I don’t know who I’m mad at.

Bill Gasiamis (33:56)

Yeah. The thing about the why me question, it’s a fair question. asked it too. I even ask it now sometimes, especially when, um, I’ve got to go back for more tests, more, uh, now I’ve got high blood pressure. Like, like I needed another thing to have, you know, like, and it’s like, the only thing that I come back with after why me is why not me? Like, who are you to go through life completely unscathed and get to 99 and then die from natural

Bill Gasiamis (34:25)

wanted to stop there for a second because that question, why me, is something I wrote about in my book. It’s one of the most common and most painful places stroke survivors get stuck. If you want to read about it and how I worked through it and what I found on the other side, the book is called The Unexpected Way That a Stroke Became the Best Thing That Happened and it’s available at

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

Bill Gasiamis (34:54)

like

Trisha Lyn Winski (34:54)

Yeah.

Bill Gasiamis (34:55)

You’re normal. being normal, ⁓ normal things happen to people. Some of those things that are shit are strokes and heart attacks and stuff that you didn’t know that you were born with. ⁓ what’s really interesting though, is to live the life after stroke and to kind of wrap my head around what that looks like. My left side feels numb all the time. ⁓ tighter, ⁓ has spasticity, but nothing is curled. Like my fingers on my toes are not curled, but it’s tighter. ⁓ it hurts.

⁓ 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)

Yeah.

or yeah.

Bill Gasiamis (35:46)

makes the reality happen again every day. Like it’s a new, I wake up in the morning, I get out of bed, my left side still sleepy. I have to be careful. If I’m not careful, I’ll lose my balance. I don’t want to fall over. And it’s like, I get to experience a different version of myself. And sometimes I want to be grateful for that. want to say, wow, what a cool, different thing to experience in a body. But then I’m trying to work out like, what’s the benefit of it? don’t know if there’s a benefit. ⁓

Trisha Lyn Winski (36:14)

I don’t know either.

Bill Gasiamis (36:15)

to me, but,

Trisha Lyn Winski (36:15)

I don’t either.

Bill Gasiamis (36:18)

but here I am talking to you and, and, and 390 people before you, ⁓ about strike all over the world and we’re putting something out and it’s making a difference. And maybe that’s the benefit. I don’t know, but do know what I mean? Like, why not us? I hate asking that question too.

Trisha Lyn Winski (36:34)

I don’t know.

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)

Was it helpful? Was it helpful?

Trisha Lyn Winski (37:13)

Yeah, it is helpful. But it doesn’t change the fact that I had a stroke. All the people that had it, I feel bad for them. Honestly, like, so when I was at the hospital, they had me join a bunch of groups on Facebook and Instagram that are like, they’re people who’ve gone through a stroke. most, I don’t comment on them. I don’t say, because most of the time it’s people bitching.

Bill Gasiamis (37:19)

Yeah.

Yeah.

Trisha Lyn Winski (37:43)

But I really like, times I, trust me, I’m like ready to kill somebody. But I don’t like say it there. I only ask them questions that are really serious. But sometimes I read what they say. And there was a guy the other day, I don’t know what he wrote, but he had like all kinds of words that they were way jumbled. was like, his message just didn’t make sense. I thought to myself, God, if I was like that, I’d be so sad.

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

Bill Gasiamis (38:19)

Yeah.

Communication Challenges and Aphasia

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)

So I did it once and actually like I think she was okay. I felt like I was always having to talk. I know that I’m so stocked but she wasn’t asking me a lot of questions and I felt like she needs to me more questions. I’ll have more answers but like but she didn’t. She just wanted me to talk so I just talked. But I stopped seeing her because I… So two reasons. I stopped seeing her because they when they fire me I…

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)

It was a bit early.

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)

It is. Yeah.

Yeah.

Yeah. Yeah.

Bill Gasiamis (40:11)

they get you and you’re not just, it’s not a one way conversation. That’s really important in choosing a counselor. I know my counselor, we, I didn’t do all the talking. was like you and me chatting now about stuff. had a conversation about things regularly. And therefore, ⁓ one of the good things that she was able to do was just ease my mind when I would go off on real negative tangents, you know, she would try to bring me back down just to calm and.

Trisha Lyn Winski (40:35)

Yeah.

Bill Gasiamis (40:39)

settle me down and offer me hope.

Trisha Lyn Winski (40:42)

I think my, honestly my biggest problem with this whole stroke and having it at all, I have aphasia and that 100 % kills me. Because I can’t like, I can talk like normal but I can’t talk like…

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)

Okay.

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)

It is.

The Journey of Recovery and Self-Discovery

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

Bill Gasiamis (42:13)

And it’s going like, well, you know, you’re trying your best. It’s all good. You know, don’t get frustrated with yourself. Don’t hate yourself. Don’t give yourself a hard time about it. ⁓ and try and decrease the frustration. Then the aphasia gets less impactful, but, ⁓ and then maybe, you know, this part of learning the new you is bring the old Trisha with you, but maybe the nutrition needs to be a little bit more slow, a little more measured, a little more calm. And it’s a skill because for 46 years, you were the regular.

Trisha Lyn Winski (42:36)

Yeah.

Bill Gasiamis (42:42)

Tricia, the one that you always knew, but now you’ve got to adjust things a little bit. It’s like people going into midlife, right? Like us, you know, in our fifties and then, um, or, know, sort of approaching 50 on and beyond and then go, I’m going to keep eating, uh, fast food that I ate when I was 21 and 20, know, McDonald’s or sodas or whatever. You can’t do it anymore. You have to make adjustments, even though that’s been your habit for the longest time, your body’s going, I can’t deal with this stuff anymore.

Trisha Lyn Winski (43:03)

Yeah.

Bill Gasiamis (43:12)

Take it out, you know, let’s simplify things. And it’s kind of like how to approach. I stroke recoveries things need to kind of get paid back and simplified. And it has to start with self love. And you have to acknowledge how much effort you’ve already put in for the last three years to get you to the position that you are now, which is far better than you were three years ago when the stroke happened. And you have to celebrate.

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)

It does.

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)

You think they’re thinking about things that you’re not they’re not really

Trisha Lyn Winski (44:13)

Yeah, but then who knows what they’re thinking of. that’s just how I get, whenever I get like, I went to a concert like a couple of years ago and I was like, I believe I couldn’t, I could hear that the music is so loud in my brain. Like I gotta get out of here. So I left. I’ve gotten better since then, but there’s something about, I have to do things slower.

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)

Yeah, there’s an adjustment. Yeah, adjustment. Yeah.

Trisha Lyn Winski (45:09)

because again, it’s isophagia, it’s gonna be hair mess, if I go slower, much slower, I can get it all out. But, ugh.

Bill Gasiamis (45:22)

It’s a lot of work, man. It doesn’t end here. You know, the work just as just beginning, you know, this getting to understand yourself, to know yourself, to support yourself, to be your biggest advocate. ⁓ and then to fail and then to try and be the person that, ⁓ picks themselves up and goes again and tries again without getting frustrated. I know exactly what you mean. Like so many people listening will know what you mean.

Trisha Lyn Winski (45:22)

It’s a pain. It’s a pain!

Bill Gasiamis (45:51)

And with time, you’ll get better and better because I know that three years seems like a long time, but it’s early in the recovery phase. The recovery is still going to continue. Year four, five, six, seven will be better and better and better. I’m, I’m 12 years post brain surgery and 14 years post first incident. So it’s like, things are still improving and getting better for me.

Trisha Lyn Winski (46:17)

Yeah.

Bill Gasiamis (46:18)

And one of the things is the way that my body responds to physical exercise. went for a bike ride a little while ago, a couple of weeks ago. And when I used to go for a bike ride at the beginning, um, man, I would be wiped out for the entire day. Uh, and I used to do a morning bike ride about like 10, 30, 11 o’clock and I’d be wiped out for the rest of the day.

Trisha Lyn Winski (46:32)

Yeah.

Bill Gasiamis (46:39)

Whereas now I can go for a bike ride and just be wiped out like a regular person, you know, about an hour or two, and then I’m back on board with doing other tasks. So it takes so much time for the brain to heal. Nobody can give you a timeline and you’ve got heaps more healing to go.

Trisha Lyn Winski (46:57)

So I looked at my stuff on YouTube, how long it takes to recover from a stroke. I’ve looked at that everywhere. Everywhere I can find. I’ve looked at that. It’s so funny. Like everybody says that it’s, everybody’s story is different. Everybody. It doesn’t matter how long you were in hospital for, doesn’t how long. But that like, it’s crazy. have no like timetable of when I’m going to get better. None. I have to deal with it.

Bill Gasiamis (47:27)

Yeah. It’s such a hard thing. It’s not a broken bone, know, like six weeks, stay off it, do a little bit of rehab and then you’re back to normal.

Trisha Lyn Winski (47:28)

It sucks, but.

I had two years before this or maybe a year before that, had a rotator cuff surgery.

I look back at that and I’m like, that was so bad. And that was like night and day. The stroke definitely like, the stroke killed me. Not the stroke. I don’t want to say the stroke. I think having aphasia killed me. I do, the stroke is, get me wrong. I don’t like it either, but ⁓ the aphasia kills me. If I didn’t have that, I wouldn’t be normal, but I can be normal. But the aphasia.

Bill Gasiamis (48:00)

Okay.

Yeah.

But,

but what, but that word killed me is a real heavy word, right? maybe you should consider changing that word, but also like, didn’t pick that you had aphasia and I, and I speak to stroke survivors all the time. Like I didn’t pick it. I, I just assumed that was the way you process your words and that’s how you get things out. Like it didn’t, I didn’t notice it at all.

Trisha Lyn Winski (48:26)

I know, I know, it’s funny that said

Yeah, that’s actually good. That’s really good. But I know it’s it. I definitely know it’s it. I could talk like a mile a minute and now like.

Bill Gasiamis (48:47)

Yeah.

Trisha Lyn Winski (48:52)

I mean…

Bill Gasiamis (48:52)

Maybe it was maybe maybe now it’s more about ⁓ quality rather than quantity, Trisha.

Trisha Lyn Winski (49:00)

Apparently it is.

Bill Gasiamis (49:01)

I’m not saying that you didn’t have quality in that I didn’t know you so I’m not kind of yeah but you know what I mean like

Trisha Lyn Winski (49:03)

Yeah.

No, it’s okay.

Trust me, it’s okay. But yeah, it just frustrates me. I can’t get out what I want to get out. And so at that time, just give me a little time, I’ll get it out. But I can’t say that to people when I’m out. I can’t say this to So I just, I don’t say it at all.

Bill Gasiamis (49:22)

Yeah.

so you stop yourself from communicating because you think you’re taking too long and it’s interrupting the flow of the conversation. Yeah. I think you’re doing that to yourself. I don’t think that’s true. We’ve had a fantastic conversation here and I’ve never picked it.

Trisha Lyn Winski (49:34)

Yeah.

all day.

But so

you’re somebody who’s had a stroke before. It’s kind of different for me because you had. But if you didn’t have a stroke, will be… Well, I don’t know. Maybe not. Maybe one-on-one I’m okay. No, think I… No, it’s because you had a stroke. I think of all the people I’ve talked to and they’re one-on-one. I don’t do well with them. But I think that you’ve had a stroke so I just… I know how to communicate with you.

Bill Gasiamis (49:54)

I understand.

And maybe you’re more at ease about it. Less feeling, judged. I understand. Yeah.

Trisha Lyn Winski (50:20)

Yes, all day.

Even

that guy I told you about that that said that on Facebook God like I Really like my heart goes out to him But then that there’s the people that are fishing a plane I’m like

I want to say my heart goes out to them, it really, it goes to certain people. I think that.

He’s like going through it.

Bill Gasiamis (50:45)

Yeah. One of the problems with going to Facebook to bitch and moan about it, especially when you’re going through it is that you get an abundance of people who also are there to bitch and moan about it. And, and that makes it worse. think you should do bitching and moaning on your own. Like when there’s no one watching or listening. Cause then that way there’s not a loop of bitching and moaning that happens. That makes it dramatically worse for everybody.

Trisha Lyn Winski (51:01)

Yeah, I do it myself.

Bill Gasiamis (51:09)

⁓ and that’s why I don’t hang around on Facebook, Instagram, social media, or anything like that for those types of conversations. If I’m not sharing a little bit of wisdom or somebody’s story or, ⁓ asking a question, like a genuine question, one of the questions might be, did you struggle driving and did you have to pull over and go to sleep in the middle of the road? If you had a big trip ahead of you in the car, I’ve done that. Like if, if I’m not asking a question like that, I don’t want to be, ⁓ on social media saying.

life sucks, this sucks, that sucks. Like forget about it. What’s the point of that? That’s why I started the podcast so I can have my own conversations about it that were positive based on what we’re overcoming rather than all the shit we’re dealing with. And that way ⁓ we take off that spiral, the negative downward spiral. trying to make it an upward spiral. You know, where things are.

Trisha Lyn Winski (51:41)

Yeah.

Facing the Aftermath of Stroke

Bill Gasiamis (52:05)

I don’t know, we’re seeing the glass half full perhaps, or we’re seeing the positive that came out of it. If something like, I know there’s some positive stuff that came out of stroke for you. Day one, you definitely didn’t think that maybe three years down the track. Maybe if it wasn’t for this, well, then that wouldn’t have happened for me. Like I’ve been on TV. I’ve been at the stroke foundation. I’ve been on radio. I’ve been, I’ve presented. I’ve got a podcast. wrote a book.

Like it’s taken years and years for all those good things to come, but they never would have happened if I didn’t have a stroke. So I wanted to have those types of conversations, you know, what are the positive things we can turn this into? Because dude, then there’s just enough shit to deal with that. We don’t have to deal with every other version of it, you know? ⁓ and I think it’s better to have your me personally, my negative moments alone, cause I don’t want to get into a competition with somebody.

Trisha Lyn Winski (52:42)

That’s good. Yeah.

Bill Gasiamis (53:05)

who I say, I didn’t sleep well, my left side hurts, it feels like pins and needles. And then they say to me, ⁓ you think that’s bad? Well, you know, forget about it. I don’t want to be that that guy on the other end of a conversation like that, you know.

Trisha Lyn Winski (53:13)

Yeah.

⁓ So you said your left side, ⁓ you see you have pin the needles, is always like that? So I’m sorry, had hemorrhagic stroke? Okay. I know the difference between two, ⁓ why did you have hemorrhagic stroke?

Bill Gasiamis (53:27)

Always, yeah, never goes away.

Yeah, Brain blade.

I was born with a blood vessel that was malformed. So it was like really weak one. I was really like, uh, was kind of like, uh, uh, it wasn’t created properly in my brain when I was born and it’s called an arteriovenous malformation. then they sit idle, they sit idle and they do nothing for a lot of people. And then sometimes they burst.

Trisha Lyn Winski (53:58)

Mm-hmm.

⁓ I heard it.

Bill Gasiamis (54:08)

And people sometimes have them all over their body. They don’t have to have them in their head. They can have them on the skin, ⁓ in, in an arm on a leg, wherever. And on an arm and a leg, they, they decrease the blood flow and they create real big lesions of skin damage on the surface in a brain. They leak into the brain and they cause a stroke. ⁓ so the challenge with it is like you, there was no signs and symptoms.

for any of my life until it started bleeding. And when I took action, eventually, I was like, yo, I didn’t want to go to the doctor. I didn’t want to go to the hospital. I want to do any of that. It took seven days for me to go to the hospital. When I finally got there, they found the scan, found the blood in my head. And then they thought it would stop bleeding and it didn’t. And then it bled again and they wanted to monitor it to see if it stops bleeding. They wanted to try to avoid surgery.

And then a bled a third time. And then after they bled the third time, they said, we have to have surgery. We’ve got to take it out because it’s too dangerous. And when it bled the second time, I didn’t know who my wife was. I blanked out. ⁓ I couldn’t speak afterwards. I couldn’t type an email. ⁓ I couldn’t work. I couldn’t drive. ⁓ I couldn’t remember who came to visit me. I couldn’t start and finish sentences. Yeah. So much drama. And then.

Trisha Lyn Winski (55:30)

And yeah, same thing.

Bill Gasiamis (55:36)

The numbness wasn’t there until after the brain surgery. So when they removed the blood vessel, I solved the problem in my head, but then the complication from the surgery was when I woke up, I couldn’t walk. So I had to learn how to walk again. And, ⁓ the numbness has never gone away. It’s there all the time.

Trisha Lyn Winski (55:41)

⁓

My numbness has gone away. But even when I first had it, I remember I was at the spawning, the rehab center here. And I had to to the bathroom. I had pee really bad. So I called the nurse. She didn’t answer. like, the bathroom’s right there. I’ll go. I got out of the bed. All the alarms sounded off. I’m like, look around. And she comes running. And she’s like, you can’t get out of bed.

I just have to go to the bathroom. She’s like, you can’t get out that way. Why? Right at that moment I almost fell. I’m like, mmm. So I was like, okay, can you take me to the restroom? But I didn’t know I couldn’t walk there. I didn’t know.

Bill Gasiamis (56:38)

Yeah.

I woke up from brain surgery and they said, have you gone to the toilet? And I said, no. Okay. Well, let me help you go to the toilet. That’s one thing they want you to do as soon as you can. I went out, I got out of the bed on my left side, went to put my leg on the ground. There was this little nurse, Asian lady, really ⁓ small framed. I’m probably about two foot taller than her. And she goes, just put your arm around me and I’ll hold you and you’ll be fine. Well.

I put my arm around her, I held her and I just fell to the ground. We’re talking hours after brain surgery. And that’s the first time I realized that I couldn’t walk. And then I needed to go to the toilet a couple of days later and I pressed the buzzer and the nurses wouldn’t come because they were busy. And I tried to get myself out of bed into the wheelchair and they caught me while I was in the wheelchair, dragging myself to the toilet.

Trisha Lyn Winski (57:10)

Ugh.

my God.

Bill Gasiamis (57:36)

And they said, you can’t do that. I said, ⁓ well, if, if I, if I don’t do this, I’m going to shit myself. I need, I need to do this. And then they said, ⁓ and then they said, well, we have to help you. And I said, cool. Help me. They put me on the toilet and then they wouldn’t leave the room. And I was like, you have to leave the room. I’m not doing this with you in here. You’ve got to leave the room. And I said, we’re not allowed to leave the room. And I know how I made them stand outside the toilet door.

Trisha Lyn Winski (57:42)

Yeah.

me too.

⁓ that’s so funny.

Peace out.

Bill Gasiamis (58:06)

And I swear to God, I’m not going to move and do anything else other than what I have to do in privacy. When I’m done, I’ll let you know. But right now you’ve got to be outside. And they stayed outside. It was chaos.

Trisha Lyn Winski (58:17)

Yeah, the same

thing. So I had a wheelchair. At first it was right beside my bed so I could put my hand on it and climb down there. But they were smart. They put it on the other of the room. I’m like, I can get over there to get that wheelchair. So I’m like, I can walk. I can walk there. Yeah, so I didn’t walk after that. Yeah. But they were smart.

Bill Gasiamis (58:45)

And I wasn’t blaming them. didn’t want to blame them. I just said to them, sorry guys, like, I know you’re busy. couldn’t wait though. I had just had to go, you know, so that’s what I did. I went and you know, it wasn’t the smartest move, but my self preservation from the embarrassment of, know, swelling my pants was going to be the, my biggest issue apparently, you that was going to be the biggest problem in my life. So you’ve,

Trisha Lyn Winski (58:47)

Yeah.

Yeah.

Bill Gasiamis (59:11)

Have you had some friends that have rallied around you and kind of helped you get through this? Or have you trying to be, have you been independent and done it all yourself? It seems like you’re a little kind of independent.

Emotional Impact on Loved Ones

Trisha Lyn Winski (59:22)

Yeah, I’m definitely independent, I I have. So when I had the stroke, um, I had like 12 people at the hospital before I was even in for surgery. Um, so I had some really good friends. Um, but even still, like, I just, I’m so used to doing things by myself. I am so used to it. I just, I, I got, I got mad when I, when I can’t do it myself and they help me. like, don’t.

don’t push my sentences, let me talk myself. Eventually I got past it. ⁓ But sometimes it gets frustrating. My friends were like, big support system. Yeah, they were.

Bill Gasiamis (1:00:07)

Yeah, did that help you get?

Trisha Lyn Winski (1:00:07)

My

son and Jason are like, I think they’re kind of traumatized by it.

Bill Gasiamis (1:00:17)

Yeah, 100%.

Trisha Lyn Winski (1:00:18)

And

that’s why I’m like, I had the stroke. Why are you traumatized? I forget that. I just don’t look at from their perspective. ⁓

They watched me have a stroke.

Bill Gasiamis (1:00:31)

Yeah. That’s tough for a son to watch ⁓ anyone they love have a stroke, right? But also your ex, even coming across a stranger that’s having a bad health situation, like even that’s tough, right? And

Trisha Lyn Winski (1:00:50)

It’s tough.

Bill Gasiamis (1:00:51)

And you guys were married at one point, you guys have a son together, like you’re, you know, your friends, you’re close. And it’s like, what does that mean for this person that even though you guys aren’t in a relationship like you were, like there’s a level of respect and love there still. It’s like, what does this mean for that person? What does it mean for my son? Who’s mom’s unwell? Like there’s a whole bunch of things that, you know,

Trisha Lyn Winski (1:01:18)

Yeah.

Bill Gasiamis (1:01:19)

come into it, they do get traumatized.

Trisha Lyn Winski (1:01:21)

And

the first day, I remember I told you, I remember seeing like a few people, but Jason and Zach and his brother Connor, who I love too, but they can, I couldn’t really talk to them, but.

They were all crying and Zach was really crying. Actually Zach and Jason both were. It makes me feel bad because I couldn’t like… I put my arm out to… I was trying to tap him. I was saying, it’s okay, it’s okay. But I couldn’t say that. So I just like put my arm out. It makes me feel bad now that I think about that. I know that they were traumatized. I know they were.

I just didn’t realize until right now.

Bill Gasiamis (1:02:10)

Yeah, you didn’t do it to them. It just happens. That’s what happens when somebody says someone who they love be unwell. You know, if you think about what you went through with your parents, you know, when things go wrong with your parents, you know, it’s, it hurts you too. It’s not just the person who you love that’s going through it. You go through it together. ⁓ it’s such a

Trisha Lyn Winski (1:02:13)

I know.

No.

Yeah.

Bill Gasiamis (1:02:33)

It’s such a difficult thing. And I’m like you. I was trying to make everyone else around me feel calm and okay. And yeah, not freak out. Yeah, that’s what I was doing most of the time.

Trisha Lyn Winski (1:02:40)

All day here.

all day.

Yeah, that’s actually what I was doing too. Most times that I was at Spodding, I honestly like, I had a million people coming in there to see me. It was really humbling now. But at the time I was like, I just want to be alone. And I was, was, I’ve met myself the first day. I never forget it. I cried and cried and didn’t want to go there when I told you I wanted Zach to take me home.

Um, and she gave me this like this iPad and she said, this is an English assignment. See how much you can do this. I’m like, I can do it. I couldn’t do it all. I couldn’t. It was, it was, I know I can do it, but it was like such easy English. I, I threw the iPad. I’m like, just get out, get out. And that was the first day I was there. Like, she wants to kill me. But in the end, like she came back in the next day. She’s like, it’s you’re fine.

just so you know you’re fine like I just threw your iPad by the way I broke the iPad but yeah but but she said I was I was fine but in all reality that was like that was the worst for me I couldn’t like tie my shoes I couldn’t like I couldn’t do anything I I thought I could do

Bill Gasiamis (1:04:05)

You know what’s weird is most, a lot of stroke survivors, right? Not just you, don’t know how you tie your shoes, but you know how to be upset and frustrated at yourself. how, how is that a thing man? Like if we can, if a stroke causes something, you know, why can’t it just stop you from knowing how to be frustrated with yourself? Like.

Trisha Lyn Winski (1:04:13)

All day. All day! That’s so true. ⁓

That’s so true. the first week, I had room with a view, but I would count how many cars it took to get to the place on the ridge. like, this is fucking crazy. This is what I’m doing. This is what my life has become. I’m just counting how long it takes to to the bridge. like, now every time I go past it on the highway, I look at it and I’m like, I don’t even want to see it.

It’s funny, it’s not funny, but…

Navigating Life Changes

Bill Gasiamis (1:04:57)

I know what you mean, like little things become ways to occupy your mind and ways to through whatever you’re going through to distract you from all the stuff that’s going on, all the drama. Yeah.

Trisha Lyn Winski (1:05:02)

Yeah.

Yeah, all that

the stuff you do there was like crazy, but in the in reality, that’s what I had to do. So I know that they were I know they’re doing our thing. ⁓ But the time like, you do physical therapy, you have to do occupational and really like, can I just go sleep? I want to sleep all day. So that at times people come to see me with busy hours from I think from four to eight. And

I was in one of the therapies always until like five or six. So when they came in room, I was ready for bed. One day I said, I yawned. I said, night night. This is I could say. said, night night, night night, night night. I said like that, my mom was like, are you tired? I’m like, yes. I was so tired. And she laughed. like, it’s funny now I laugh, like.

I said, night night, night night. Yeah, I was totally wiped out. I think that was the first week.

Bill Gasiamis (1:06:09)

You’re on your wiped out. Yeah. Yeah.

Yeah. I understand what that’s like. I remember being wiped out, just doing a few steps in rehab. ⁓ when I was doing occupational therapy in that, and then being wiped out for the whole day. it’s like, guys, I don’t want to do anything else, but, ⁓ yeah, rehab is hard, but not rehabbing is potentially making life harder anyway. So you have to do.

Trisha Lyn Winski (1:06:27)

yeah.

Bill Gasiamis (1:06:39)

the rehab and it took me a month to sort of start getting comfortable with the three, four sessions of rehab. ⁓ Yeah. Every day. Whereas at the beginning it was one was enough like guys half an hour I’m ⁓ and thinking about walking and thinking about where your leg is going to go and thinking about your arm and everything too much thinking.

Trisha Lyn Winski (1:06:46)

Every day. Every day.

Yep.

Yeah, so it, I think the first week I was at the hospital, I don’t know why, but I did find out later. I sang like two different songs. Mind you, I didn’t sing them. I said it out loud. And the one song that I hate this song, I hate this song now. I hate this song back then. In general, I hate song. And I said, my milkshake brings all the boys to yard. That’s it. And my friend, Roderick, was like, what?

I was like, my milkshake word is all boys yard. I was like, it didn’t dawn on me that that was a song. And I was saying a part of it. And it turned out that the spot my brain is, is well, then it was, it was dead to the, I think the verse of the songs, but it knew the words. So it said out loud, did that song. did, um, no diggity, no doubt. I say no diggity, no doubt.

over and over and over again. They got me started, so no digging it out.

Bill Gasiamis (1:08:02)

That’s crazy. Of all the things to remember, my milkshake brings all the boys to the yard.

Trisha Lyn Winski (1:08:03)

I know. Yeah,

that’s all I said.

That’s embarrassing,

Bill Gasiamis (1:08:09)

That’s so embarrassing and funny at the same time. It’s a really good story. love it. ⁓ Looking back, right? You’ve definitely changed in many different ways. Like how have you changed? Not just physically, not just, ⁓ you know.

Trisha Lyn Winski (1:08:13)

Yeah.

order.

Bill Gasiamis (1:08:28)

Not just sort of noticing what you can and can’t do anymore, but also emotionally and mentally. Where are you at with the, I know you get emotional, but I still get emotional when I talk about my stroke in the right place. So what’s the emotional and mental kind of recovery like for you?

Trisha Lyn Winski (1:08:43)

The emotion like, so the part of my brain that has a problem dealing with emotions. So I get emotional whenever I’m not upset. I’ll be crying. I don’t even really I’m crying. And somebody says that you’re crying like, huh? ⁓ I feel that’s when I know I’m crying. But it totally like, it changed my life. Like some good, some bad, but it changed my life. I just have to

goes a lot slower. I told you that earlier. I do have to go a lot lot slower. But it changed my leg. I don’t know. I don’t know. It just changed. It changed it. don’t know how. Yeah, I can’t like put that down. But I know this weird thing. But now I can cook. I couldn’t cook to save my life. And mind you, my mom died in November and she was a really good cook.

Bill Gasiamis (1:09:23)

It just changed.

Trisha Lyn Winski (1:09:40)

So I think after she died, just picked it up. I made stuffed lasagna and bread with it. I don’t even know how I made that, but I did it. It was really good. I don’t know. I know.

Bill Gasiamis (1:09:56)

All right.

That’s a win. Why not? We’ll just take it. I love it. ⁓

Trisha Lyn Winski (1:10:02)

Yeah. Yeah, I do love those

moments, but yeah, I just don’t like, I don’t want to. So sometimes I go out, I get tired or, or about, yeah, I go out have like, most I have is two drinks ever. This is, I don’t know why this happened to me, but like, before I could drink a lot, not a lot, but a lot for me. Um, but now like I have like two drinks. like, I’m done. Like,

I don’t think I’m drunk, but I just think that I just can’t have anymore.

Bill Gasiamis (1:10:34)

Yeah. You know, I’ve stopped drinking. I haven’t had more than about 20 drinks in 10 years. It makes me feel like I’m having another stroke. That’s why I don’t do it.

Trisha Lyn Winski (1:10:39)

Wow, that’s good. I need to do that, but I don’t do that yet.

I wouldn’t do it in that case either. Yeah. I think that’s a way I cope with it actually. I go all by myself all the time.

Bill Gasiamis (1:11:03)

Okay, so you reckon the drinking kind of helps take the edge off every so often if you’re feeling down on something.

Trisha Lyn Winski (1:11:06)

Yeah.

Yeah. And I think that somebody, if I can talk to somebody and they want to hear my stroke, ⁓ I’d gladly tell them that. But Zach and Jason and every I know, I can’t like talk to them about it because like, yeah, it’s frustrating.

Bill Gasiamis (1:11:25)

Great.

Yeah. Because also you have a conversation with them. That’s different. Like it’s not a you and me talking about stroke. I don’t have to come in and step in and go, worry about you. I don’t have to say, you know, but mom, this or Patricia, that like, I don’t have to do any of that stuff. You know, we just have a talk. We share our conversation. You get it off your chest. I’ll get mine off my chest. But then you’re talking to the family and the family then they’re not as

disconnected from it. And therefore it goes the way family conversations go when somebody has been unwell. And I’m the same like with my wife. think that’s why the podcast exists because I’m here. I am 14 years later, still talking about the stroke every week on the podcast. My wife doesn’t need to have that many conversations about what happened to me. It’s just.

Trisha Lyn Winski (1:12:14)

was crazy.

Yeah. Yeah. ⁓

Bill Gasiamis (1:12:22)

She doesn’t need it. She physically,

emotionally, mentally does it every so often. I say to her, no, I’m screwed. And she’ll say, you know, what’s wrong with you again today? And I’ll say, you remember I had a stroke 14 years ago, every so often I say it just because I need to say it. And then she goes, Oh yeah. Okay. I get it. Um, and then, and then they can get off my case when they’re being, um, when they’re giving me a hard time for being, um, moody or

Trisha Lyn Winski (1:12:51)

Yeah.

Bill Gasiamis (1:12:51)

nasty

or whatever and then and then we’re okay but we don’t have deep and meaningful conversations about it anymore there’s no point because she can’t change anything she’s not the right person for that a therapist is for me if I need to if I need to and if I and if I can’t see a therapist another podcast guest is my therapy like it’s

Finding Joy in New Passions

Trisha Lyn Winski (1:13:12)

It totally is. when I first had a stroke, whenever I go out with whoever I out with, I told them I had a stroke. Mind you, I didn’t want to tell them I had a stroke, but I couldn’t tell them I had aphasia. I think they’re not going to understand, what that is. So I have a stroke that way I can say I have aphasia, blah, I tell them that because they give me time to let it out, get what I’m trying say out.

That’s a big deal for me. And so I think that when I did that at first, it kind of bothered some people. like, listen, I’m going to do it whether you’re with or not. I do it because I need to do it. I have to do it. It’s not because I give two shits what anybody thinks about me having a stroke, but it’s about aphasia. I can talk if they let me get it out. So I think that now everyone’s OK with it. But at first, they’re like, what the fuck? I’m like, yeah.

Bill Gasiamis (1:14:08)

The learning how to interact with somebody who’s had a stroke and has aphasia is a big task as well. My wife, even a few times said, spit it out. I’m like, dude, spit it out. Be careful what you’re saying. You know, like, and I know she wasn’t being nasty or mean. She just thought I was, ⁓ delaying the conversation or whatever, you know, I’m all being distracted or whatever. And I’m like,

Trisha Lyn Winski (1:14:15)

Yes.

Yeah.

Yeah.

Bill Gasiamis (1:14:37)

just bloody wait, shut up, be patient and wait, know, like, you know, and we, we, we’re there now and we understand each other. But early on, was her learning that like you, my brain, my brain doesn’t work. ⁓ and my mouth unconnected like they were before.

Trisha Lyn Winski (1:14:59)

Yeah.

Bill Gasiamis (1:15:01)

I don’t know if it’ll come better or not, but right now it’s not. So just wait, just don’t say anything for three seconds. It’s your problem. If you can’t handle, ⁓ three seconds of, ⁓ dead air time, it’s not my problem. Just stop.

Trisha Lyn Winski (1:15:17)

So when I first had it and I got out, I went to this Chinese restaurant with a bunch of my girlfriends. And I didn’t know I said to my friend Jill, I said, when you come back up here, can you give me the shirt that you wore mind to homecoming?

Two things I’ve been home kind since I was in high school. So is it 23 up in some years and I looked at my I said that and she’s like, yeah, It it it just like makes me laugh and that’s I was then now like like I said it but I said it I Did

Bill Gasiamis (1:15:54)

Yeah.

The brain, the brain is anyhow, people after stroke, ⁓ the same, but different, you know, things work differently. Things are rewiring things. Things are all over the place. You know, it takes a lot of time and a lot of healing. think I kind of hit my

Trisha Lyn Winski (1:16:05)

Yep.

Bill Gasiamis (1:16:12)

my best sort of recovery phase after the first seven or eight years, six, seven or eight years is kind of what I felt best about myself. It took a long time for me to get there. And I went back to work. know, 2012 was the first incident. didn’t go back to work until after 2019 in my own business, which is what I was doing before. And so it took seven years for me to get back into the swing of the routine and all that.

Trisha Lyn Winski (1:16:31)

Yeah.

Yeah.

Bill Gasiamis (1:16:38)

harder than it was then because I was dealing with the physical challenges, but it took a long time. So, ⁓ I think you’ll get there and I want to offer hope to people that, ⁓ early on in the recovery that things will continue to change and improve. ⁓ what, what do you like doing now? Like what’s your little, you know, what’s the, what are the things about your life that you kind of love to do that are making you feel good?

Trisha Lyn Winski (1:17:08)

So I’m really big into football. I’ve always, but it’s funny. Like, so when I was in spawning, so I’m a big stealer, Pittsburgh, Seattle, Fran. Yeah. So, they had to, do you go to the play, the, the play house? Well, to go to the play house, they had to be, they had to win and we had other, three other teams like win and lose. So.

Bill Gasiamis (1:17:18)

Deal with it. Okay.

Super Bowl.

Trisha Lyn Winski (1:17:34)

In Spoding, I was watching on my phone, she had the TV on, she had an iPad that she had it on, and I was watching all three of them and she looked at me and she’s like, you have not changed at all. I’m like, what do mean? It’s because I was doing that and she kind of laughed at me, but it’s kind of true. I still like the same thing. I still like, I love the way they play pool. I was really good at pool. I was really good. I can’t.

shoot as good as I used to shoot before, but I can still shoot. I went out with Zap one time and I beat him and he’s like, how the hell did you beat me? like, I don’t know. I like a game, but it’s not that I was so good at a pool. don’t, again, I don’t shoot as good I did, but yeah.

Bill Gasiamis (1:18:24)

You like doing activities like that?

Trisha Lyn Winski (1:18:27)

Yeah, I do.

Bill Gasiamis (1:18:28)

That’s cool. Why not? love it. you know, with the way that the, the grid iron works in the United States, if your team doesn’t get to the super bowl, like, it really depressing? Because I know you guys have separate, like there’s a, there’s a, there’s two different divisions and then.

Trisha Lyn Winski (1:18:44)

Yes.

There’s two divisions. Yep. And there’s four divisions.

There’s two divisions and there’s four, I can’t remember the call, but in each division.

Bill Gasiamis (1:19:04)

Okay, so each division is split up into four. Okay, so to get to the top of your division, do you have to have playoffs against the other four?

Trisha Lyn Winski (1:19:14)

Yeah, you have to play have playoff against only so my my conference conference that was insane. There’s two conferences, AFC and NFC. So AFC the Steelers are in. So they have to be not all a team. They have a playoff that they have to go through. But then once they get through that, then they play the NFC in the Super Bowl.

Bill Gasiamis (1:19:34)

Wow. Okay. So they’ve got to get through their own division. They’ve got to then be the top of the NFC and then they’ve got to play off in the Superbowl to potentially win the Superbowl. So it is a massive big deal to make it and win a Superbowl. Massive.

Trisha Lyn Winski (1:19:51)

Yeah,

so Pittsburgh has, we’re tied right now with the paths and it makes me effing mad because I live in Boston and like, so we’re tied with them now, but ⁓ I like to say we have more than they do, but it doesn’t matter. So we’re tied.

Bill Gasiamis (1:20:10)

Yeah, okay. I hear more Super Bowls. So you, I just Googled it the last time the Steelers won the Super Bowl was in 2009.

Trisha Lyn Winski (1:20:19)

And I was at that game. It was so much fun. ⁓ God, it was so much fun. San Antonio Homes caught the ball in the end zone. It’s the most amazing catch. Watch it. Watch it. He’s amazing.

Bill Gasiamis (1:20:32)

Yeah. Okay.

I’ll check it out. I love ⁓ big games, you know, where two really good teams go against each other and your team just gets over the line. Like, I love that you never ever forget it for the positive, but then the other team never forget it because of the negative.

Trisha Lyn Winski (1:20:43)

Yeah.

We played

against, that’s not the last time we were in a secret role. played in a secret role. 2009, we won. think we played in 2011 or 12 and we lost to Green Bay. I went to that game too and I was, yeah, I was mad. But we lost.

Bill Gasiamis (1:21:06)

My team

in Australia in Australian football has been equaled 16 championships since they’ve been around, which is like for 110 years or something. And they’ve lost the most championships though. Yeah. So they’ve been in the most they’ve won almost the most, but they’ve lost more than any other team.

Trisha Lyn Winski (1:21:21)

Really?

I don’t

know how many we lost. bet we’re up there. No, no, I don’t think we’re up there, but…

Bill Gasiamis (1:21:34)

Yeah. So we’ve seen a lot of heartache in those years where so many losses I’ve probably seen about, I reckon I’ve seen maybe seven or eight losses in a, yeah. And, in the gridiron when I was a kid, probably my twenties and my teens, I used to follow, you’re going to know exactly what, what, what I’m getting at now.

Trisha Lyn Winski (1:21:37)

Yeah.

Bill Gasiamis (1:21:59)

I used to follow Buffalo Bills because my name’s Bill. I used to follow the Buffalo Bills. But how many did they lose in a row in the nineties?

Trisha Lyn Winski (1:22:04)

I do like buffalo meals.

They’ve never been to the sea,

Bill Gasiamis (1:22:12)

Yeah, they’ve been to the super bowl. They’ve lost. Yeah. I’ll Google now. I’ll tell you how many, how many they lost. How many, Oh man. In a row to super bowls did Buffalo lose.

Trisha Lyn Winski (1:22:20)

It could be that many.

I don’t

think they did it to their super elf. Maybe I’m wrong.

Bill Gasiamis (1:22:32)

Okay.

In 1991, they lost to the Giants 20 to 19. In 1992, they lost to Washington 37 to 24. In 1993, they lost to the Dallas Cowboys 52 to 17. And in 1992, they lost to Dallas Cowboys 30 to 13.

Trisha Lyn Winski (1:22:38)

So.

Okay.

So they haven’t been there since then, right?

Bill Gasiamis (1:23:00)

Uh, I believe so. And they’ve lost four in a row, 91, 92, 93, 94. I still have a hat and everything.

Trisha Lyn Winski (1:23:06)

my god.

So I think that’s what I’m thinking of. I don’t think they’ve ever won a Super Bowl. But they haven’t been there in last couple of years, and it really should have been. And I was rooting for them to win. I root for a seal all day. I don’t care, all day. But when they were out, I was hoping that they won, but they didn’t.

Bill Gasiamis (1:23:30)

Yeah.

The zero from zero from four attempts and it was all in zero wins from four attempts at the super bowl and they’ve lost the four in a row. Yeah. It was devastating to be a Buffalo Bills fan then, but it is what it is. So as we wrap up, I’d love to ask you one last question, especially about somebody who might be listening to this interview. Who’s just going through it really early on. Like what would you say to them about

Trisha Lyn Winski (1:23:35)

What?

⁓

Yeah.

Bill Gasiamis (1:24:00)

the journey about what you’ve learned about stroke in general or life. Like do you have some words of wisdom?

Trisha Lyn Winski (1:24:08)

I think that like you just have to be patient with yourself and be patient in general because in the end like so I went neuroplasticity it really does exist. I’m telling you like my brain like I find places to find the words I never had before. It takes longer for them to get there but it gets there. So I was speaking really bad when I first had it. I speak a lot better now. Just give yourself time.

I know my back to work, I shouldn’t have, but I really like to work. All these little things I did, I shouldn’t have, but I did. It taught me that if I ever had again, I won’t do that. I have to just take my time and do it myself. I feel like, well, I get young too, so it’s hard to say what I would do, but yeah, I just gotta take my time. I have to.

Bill Gasiamis (1:25:04)

I love it, Trisha. Thank you so much for reaching out, staying up so late to be with me on the podcast. really appreciate it. was great to chat to you.

Trisha’s Journey: Emotional Anger After Stroke

Bill Gasiamis (1:25:12)

Well, what a wonderful conversation. Trisha was 46 years old, no risk factors, a carotid web she never knew she had and a stroke that changed everything in an instant. What stayed with me most was her honesty about the anger, not knowing who she’s mad at, just being mad. The aphasia that frustrates her more than any physical deficit. The moment she realized her son and ex-husband were traumatized.

and that she’d forgotten to look at it from their perspective. And her reminder that at the end, the neural plasticity is real. The brain is still finding new pathways. Give it time. If this episode resonated with you, please share it with someone who needs to hear it and subscribe so you never miss a story like Trisha’s. A huge thank you to my Patreon supporters. You are the reason that helps this podcast keep going.

and stays free for every stroke survivor who needs it. A special welcome to those who have joined us recently. Thank you so much. It genuinely means the world to me

you’re in recovery and feeling that anger, that confusion and that sense of why me, I wrote about all of it. It’s called The Unexpected Way That a Stroke Became the Best Thing That Happened. It is available at recoveryafterstroke.com/book. I’m Bill Gassiamas. Thank you for listening to the Recovery After Stroke podcast. I will see you in the next episode.

The post Emotional Anger After Stroke: Trisha Winski’s Story of a Carotid Web, Aphasia, and Learning to Slow Down appeared first on Recovery After Stroke.