Recovery After Stroke

Crying After Stroke: What Bobby Chaggar’s Recovery Taught Him About Grief and Strength

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

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

Growing Up Believing a Stroke Meant You Were Gone

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

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

Why His Arm Seemed to Move Then Stopped

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

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

The Physio Who Promised Him He’d Walk Again

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

Learning to Cry Again

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

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

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

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

A New Normal, On His Own Terms

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

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

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

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

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

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

Bobby Chaggar: Learning to Cry After Stroke (Interview)

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

Highlights:

00:00 Introduction

02:00 Life Before the Stroke

09:28 Rehabilitation Journey

12:00 Crying After Stroke

14:52 Reflections on Recovery and Growth

26:33 The Promise of Recovery and Writing a Book

29:37 Cultural Identity and Personal Beliefs

37:28 Relocation and Its Challenges

41:44 The Importance of Caregiver Self-Care

44:10 Adjusting to a New Normal

51:09 The Journey of Riding Again

57:09 Bobby’s Journey of Unlearning and Grief

Transcript:

Introduction – Crying after stroke

Ramandeep (bobby) chaggar (00:00)

I realized that I was having a stroke. because it was not their usual pins and needles and there was no sensation. I couldn’t move my arm. I managed to limp. I went all the way to the kitchen. I trudged a little to the kitchen. I had a glass of water, brought a glass for my wife.

in the hospital, I thought my arm started moving.

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

Bill Gasiamis (00:19)

Welcome back to Recovery After Stroke. I’m Bill Gasiamis and today I’m talking with Bobby Chaggar, a veterinary surgeon originally from India, now living in Melbourne, who survived a right ischemic pontain stroke in December 2023. Bobby’s story covers a lot of ground, the cultural belief he grew up with, that a stroke simply meant you were gone. The strange confusion of a spinal reflex that made his arm move before it didn’t.

Physiotherapist whose promise

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

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

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

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

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

Bill Gasiamis (01:56)

Bobby Chaggar. Welcome to the podcast.

Ramandeep (bobby) chaggar (01:58)

Thank you very much. Thank you. Thank you, Bill.

Life Before the Stroke

Bill Gasiamis (02:00)

So you grew up in a house with 22 dogs, three cats and a trilingual parrot as well, right? So what’s the situation there? You’re living with pets. Were you important in your family or

Ramandeep (bobby) chaggar (02:10)

Ha ha.

Bill Gasiamis (02:11)

did the animals come first?

Ramandeep (bobby) chaggar (02:14)

the animals definitely did come first. my mother was also a teacher, but she decided to stay at home and be a stay you know, stay a worker from home mom for for the for the kids. And my parents never used to say no to any patient. So they used to admit everything and anything. And in India also it’s quite common to rehome pets and a lot of times they don’t get proper homes. So we used to say yes to everything.

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

Bill Gasiamis (03:08)

I

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

Ramandeep (bobby) chaggar (03:09)

Yep. Yep, yep.

Bill Gasiamis (03:12)

Tell me about this bike though. So this Royal Enfield motorbike, what was the deal with that? Why was it coming to Australia? Why was it a big deal on that day?

Ramandeep (bobby) chaggar (03:22)

it was gifted to me by it was restored and gifted to me by my wife on my fortieth. And this time on my fiftieth, the guy who had restored it, he’s a friend of mine, he decided to build this sidecar and ship it to me. And it’s a vintage, it’s a nineteen seventy three. So I’ve literally grown up on motorcycles, drive riding them, and I was quite excited about the whole thing.

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

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

Bill Gasiamis (04:23)

So you get that phone call and that’s it. You’re on the bikes here. We’re going to go and get it.

Ramandeep (bobby) chaggar (04:26)

Yep, yep, yep.

We were just looking forward for the bike. Yep.

Bill Gasiamis (04:29)

I love it.

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

Ramandeep (bobby) chaggar (04:34)

Mm-hmm.

Bill Gasiamis (04:35)

has a stroke, most people believe that you’re gone, right? And it seems like you also believe that where does a belief like that come from? And what did you do in the first few hours?

Ramandeep (bobby) chaggar (04:47)

You know the first because it’s it’s it’s not I mean in the era I’ve grown up there was not a lot of internet. They were only encyclopedias. So getting information was a little challenge. So as as kids when we were growing up, we were just here that that particular cousin’s father’s grandfather had a stroke and he’s gone. That particular person’s family member has has had a stroke and he’s done for.

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

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

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

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

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

So we called

Bill Gasiamis (07:10)

Yeah.

Ramandeep (bobby) chaggar (07:11)

him and he said, Come straight to Royal Melbourne and th that’s where I was. And and the Amus asked me, he they said, Your catchment is northern, but where do you want to go? I said, Please take me to Northern because my brother’s gonna be there.

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

Bill Gasiamis (07:27)

Yeah.

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

Ramandeep (bobby) chaggar (07:42)

Yeah, that’s where I was. Yep.

Bill Gasiamis (07:43)

Yeah, good

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

Ramandeep (bobby) chaggar (07:52)

Yes.

Bill Gasiamis (07:53)

vets surgeons? Do they all operate on animals?

Ramandeep (bobby) chaggar (07:56)

So in primitive times, the veterin surgery education is made around five types of animals, which is a canine, which is dogs, that that species, filine, which is cats, equines, which is horses, bovines, which is cattle, and one animal from wildlife, and one random fish, including birds. So we have to compare them in all aspects. So when we technically pass out, or rather I would say,

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

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

Bill Gasiamis (09:05)

Yeah, understood. Understood.

Ramandeep (bobby) chaggar (09:08)

on around everything. Now you can be a surgeon, you can be a bone surgeon. There’s a friend of mine, he’s a he’s a animal onko oncologist.

So things like that. Yep.

Bill Gasiamis (09:17)

amazing how far things have come. So

Ramandeep (bobby) chaggar (09:19)

yes, definitely. Yeah.

Rehabilitation Journey

Bill Gasiamis (09:20)

the fact that you were kind of a surgeon, even if it was in veterinary surgery,

Ramandeep (bobby) chaggar (09:28)

Yep, yep, yep.

Bill Gasiamis (09:30)

does that kind of medical knowledge that you have make it harder to face what you’re going through? Do you apply those kind of medical skills onto your own condition?

Ramandeep (bobby) chaggar (09:42)

I would say it definitely helps in doing research and digging out evidence based study because that’s how we’ve been trained, right? So we have to we have been trained to look for specific information in a specific way. So I thought I think that is what probably helps a little bit extra when someone is from that background. So most of the medical jargon we understand because it’s same. Every all animals are same, mostly, except the ruminants which have four stomachs. So

Bill Gasiamis (10:06)

Mm-hmm.

Ramandeep (bobby) chaggar (10:07)

so

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

Bill Gasiamis (10:22)

Yeah, that’s fascinating. I love it.

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

Ramandeep (bobby) chaggar (10:43)

I remember I was very emotional. Even now I’m very emotional. If I talk about nice things, I end up crying sometimes. Or I laugh more, I cry more. But I was really worried at that point. I didn’t know what’s gonna happen. My cousins used to call me, my friends used to call me, doctors used to go past and they would tell me that you’ll be fine, man. And you know, that was you’ll be fine was was kind of unbelievable because nothing’s moving. I mean I I don’t know how that’s gonna happen.

Bill Gasiamis (11:09)

your

left side your whole left side was gone.

Ramandeep (bobby) chaggar (11:11)

Yeah, I was on the wheelchair for about six months and I was in the same rehab as you just mentioned at Parkwell for 45 days.

Bill Gasiamis (11:18)

Hmm.

Ramandeep (bobby) chaggar (11:18)

And if we must have been to the chapel, which is just behind the Parkville camp campus. So I used to go there every day. My son used to wheel me there. Yeah. So it was it was quite overwhelming for me because I didn’t know what was going on. I had heard that there are these injections which which are given within the golden period.

Crying After Stroke

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

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

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

Bill Gasiamis (12:47)

What was the cause of the stroke?

Ramandeep (bobby) chaggar (12:48)

Nobody knows. I was pr absolutely healthy. I don’t have blood pressure. I don’t have diabetes. I don’t have anything with I was cycling hundred kilometers on the weekend. I was walking my dog twice a day. I was very, very active. Even now I’m very active. I was I was when I was in rehab, obviously I started eating I was eating the same and I was obviously not exercising. So my weight went up to 120 kilos, for example, because my activity was so high.

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

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

Bill Gasiamis (13:39)

Yeah.

Ramandeep (bobby) chaggar (13:42)

exercised so much at the last two years, it’s not even funny. I think he must be listening that I want to exercise. He said, Okay, go for it, man.

Bill Gasiamis (13:51)

You got to, you, you sounds like you were given, this like massive learning opportunity, but also a scary learning opportunity. Things were really difficult. at one point, but things have kind of progressed. Well, things are going well and that’s awesome. you’ve taken it, you’ve taken it away where this is an opportunity to grow, to learn, to try new things. but what was it like on your

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

Ramandeep (bobby) chaggar (14:26)

I think it was twenty five it was I think.

Bill Gasiamis (14:28)

voluntary voluntary movement first, first, yeah.

Ramandeep (bobby) chaggar (14:30)

Yeah, correct, correct.

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

Reflections on Recovery and Growth

Bill Gasiamis (14:52)

Okay.

Ramandeep (bobby) chaggar (14:53)

So she used to press my arm and it was really painful.

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

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

Bill Gasiamis (15:41)

tears of relief. Yeah.

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

Ramandeep (bobby) chaggar (15:52)

Yeah.

Bill Gasiamis (15:53)

but were you, were you near the diabetic ward as well? Were you watching people, have amputations walking out after a few days and getting down about that, that they, why are they getting out so quick?

Ramandeep (bobby) chaggar (16:06)

So, you know, the the building which is opposite to the rehab facility on Parkville Road on the other side is the diabetic ward.

Bill Gasiamis (16:11)

Yep. Right.

Ramandeep (bobby) chaggar (16:13)

So those patients after their surgeries, after their treatments are shifted into rehab. And I could see that these guys are coming in and because initially I was a little curious that what’s happening here. This guy, you know, he’s he’s got an amputation and he’s just gone. After three days, four days, they would go away. So then they would new new patients come in, they would learn how to walk, then three, four, five days they’ll go away again.

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

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

Bill Gasiamis (17:17)

So was playing on your mind a little bit, seeing this difference in the way people were rehabilitating after an amputation compared to a stroke survivor.

Ramandeep (bobby) chaggar (17:26)

Yes, hundred percent. And considering that one of my family people, my uncles, cousins, far cousin, he had passed on because of this particular problem. And it because of the way the medicines and the medical system is in India, so I saw that he ha also had to be his one of his toes had to be amputated. and he had a neuropathy and then he lost his foot and he eventually died because of kidney problems.

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

Bill Gasiamis (18:02)

Hmm.

Ramandeep (bobby) chaggar (18:03)

more conservative, they try to save the limb. Here they are more aggressive. They say that we if there’s a the there’s gangrene here, we want to cut from here and we want to make sure that you’re safe. Your life is safe. So they they are more aggressive here. Over there, they say, We’ll try to save this, we’ll try to save this, we’ll try to save this. So it’s it’s different. We have

Bill Gasiamis (18:18)

Yeah. So

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

Ramandeep (bobby) chaggar (18:47)

It was hard. Then that was another time when I was really crying. Maybe it happens to everyone, you know. I’m not special. But I I was I was quite emotional and it took me a couple of days to get used to my brother in law coming in, and he said, I’ll do it for you, man. And he’s he’s a champ. And he would come every day. So it’s in our culture, it’s it’s I think it’s maybe egoistic or maybe it’s how we are.

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

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

Bill Gasiamis (19:50)

Yeah, man. I’m the same.

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

Ramandeep (bobby) chaggar (20:06)

Which one is that? No, so no, I’ve

Bill Gasiamis (20:07)

It’s a

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

Ramandeep (bobby) chaggar (20:14)

More.

Bill Gasiamis (20:15)

more and out of the blue suddenly. And often at the beginning, it’s a very difficult to control. And then later it gets better. But then for me, I, you know, a couple of years ago, I was told to go and do a presentation for the Royal Melbourne hospital neurosciences, gala ball to, to tell them what stroke,

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

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

Ramandeep (bobby) chaggar (21:16)

Yep, yep, yep, yep.

Bill Gasiamis (21:20)

but it was interesting to go through that, you know, 13 years, you know, 12, 13 years later, like it was, yeah, crazy. So,

Ramandeep (bobby) chaggar (21:25)

Two thirty news, huh? So

Bill Gasiamis (21:28)

It’s not uncommon, very, very common.

Ramandeep (bobby) chaggar (21:30)

So tell me something, is it easy for you to have a poker face?

Bill Gasiamis (21:34)

If the,

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

Ramandeep (bobby) chaggar (21:52)

I think same, same. So it’s similar. I can I can cry on animations also. And my son says that he’s crying, you it’s on animation also. It’s a good movie. Good movie story. And that’s you’re done.

Bill Gasiamis (21:59)

Yeah. Yeah, I

used to cry with the cat tripping over or something

Ramandeep (bobby) chaggar (22:05)

Ha ha ha.

Bill Gasiamis (22:06)

silly, know, crazy stuff. And my wife would be going, what are you crying about now? I don’t know. I’m just crying.

Ramandeep (bobby) chaggar (22:12)

Short short.

Bill Gasiamis (22:15)

And the difficult part is not me. It’s the people around me thinking that I’m sad or thinking that there’s something wrong. And that’s reeducating them so that they know that’s not what’s happening.

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

Ramandeep (bobby) chaggar (22:39)

wow.

Bill Gasiamis (22:39)

was a most amazing electronic dance laser show. It was sensational. Now my wife didn’t see because it was too dark and she was focusing on the show, but you know, I had about three or four moments where I cried.

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

Ramandeep (bobby) chaggar (23:14)

I understand.

Bill Gasiamis (23:16)

and telling, kind of trying to bring people into understanding that

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

Ramandeep (bobby) chaggar (23:37)

No, because

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

Bill Gasiamis (23:47)

will, it will settle down and then sometimes it will just come out of nowhere and you won’t, you wouldn’t have expected it. Yeah. It changes for a lot of people. remember interviewing one gentleman. can’t remember his name now. And on the, on his wedding day, he told me that he was almost dehydrated from crying so much, you

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

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

Ramandeep (bobby) chaggar (24:33)

Yeah.

Bill Gasiamis (24:34)

It’s, it’s, it’s involuntary. And I think it’s actually very helpful for me. It’s helpful to just get it out. Like what your mate said, you know, just go into the corner and have a cry, get it out, and this whole thing, you know, our culture is the same and many cultures are the same. It’s like, you know, the men are not supposed to show emotion. You’re supposed to toughen up, you know, be stronger for everybody else. And nobody checks in with you to say, you know, okay, how are you doing now? That’s

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

Ramandeep (bobby) chaggar (25:05)

So Hannah was my first physio who was, you know, it’s it was quite moving for me from that perspective as well. Because I I always thank and thank my stars that I got unwell in Australia. Because there are so many systems here which help younger people like NDIS and got all kinds of help. And and the medical is top-notch. The medicine is top-notch. The first day that I remember they took me to the physio room. I had this pretty girl.

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

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

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

Bill Gasiamis (25:41)

Yeah. Yeah.

Ramandeep (bobby) chaggar (25:42)

So that was Hannah. Initially, my book was supposed to be called Walking with Hannah. So, but one of my advisors told me that look, if the book becomes really popular, then she is gonna benefit more. Change the name, man. Change it. And there are different privacy laws in Australia. So just to make sure that you are around the privacy laws, don’t put anybody’s name on it.

Bill Gasiamis (26:03)

Like you’re on the ground. She’s moving your leg or your foot and she makes you a promise that you would walk again. Now that’s a pretty big deal to hear that from somebody who’s in the rehabilitation space trying to help you to recover.

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

The Promise of Recovery and Writing a Book

Ramandeep (bobby) chaggar (26:33)

Should I be ready with our tissues? Have you had people who really, really break down badly on a show? Is it okay?

Bill Gasiamis (26:39)

Yeah,

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

Ramandeep (bobby) chaggar (26:43)

So I think in that situation

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

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

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

So I thought

Bill Gasiamis (27:41)

Yeah.

Ramandeep (bobby) chaggar (27:42)

I was like, yeah, let’s do it. It was not it was not a business model. It was not

Bill Gasiamis (27:45)

Yeah.

Ramandeep (bobby) chaggar (27:45)

something which will actually make money. There was no thought around it. I just

Bill Gasiamis (27:48)

Yeah.

Ramandeep (bobby) chaggar (27:48)

wanted to write a book. I was just emotionally wanted to write a book. I was just compulsive. I wanted to write a book. That’s it. Done. Yep, yep, yep.

Bill Gasiamis (27:55)

I love it.

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

Ramandeep (bobby) chaggar (28:01)

Yes go.

Bill Gasiamis (28:01)

the unexpected way this joke became the best thing that happened. It was like, I’ve learned all of this stuff. And I kind of don’t want to forget it. I want to have it in one space. I want to capture the moment as well. Like it’s like a time in history, a snapshot

Ramandeep (bobby) chaggar (28:14)

Yeah, yeah.

Bill Gasiamis (28:14)

of history, you know, that book. And if I can just put everything in a book, then I could well, I could have a book, but then if people want to buy it and it helps them.

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

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

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

you seek right?

Cultural Identity and Personal Beliefs

Ramandeep (bobby) chaggar (29:37)

Yes, I’ve yep, yep.

Bill Gasiamis (29:40)

And in the religion turban is quite important. How was that?

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

Ramandeep (bobby) chaggar (29:57)

So I’ve been through times in my life when I was without a turban for a couple of months because I had a ac I had a small unfortunate accident with my Jeep. So I had to cut off a little bit of hair, so I just didn’t bother p going back to the turban initially. So and and I was I’m not very religious, religious. So

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

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

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

Bill Gasiamis (31:37)

Yeah.

Ramandeep (bobby) chaggar (31:38)

Yep, yep, yep.

Bill Gasiamis (31:39)

so it’s challenging for people, right? Like if somebody is wearing a turban for their entire lives, then they have a stroke and then they can wear a turban because they can’t tie a turban. Then you can understand why that would be impactful in another way, you know, to their identity, to, their beliefs, to all the things that are associated to a turban.

Ramandeep (bobby) chaggar (32:00)

You know, it was it was more like a shame. It was more like

Bill Gasiamis (32:03)

Uh-huh.

Ramandeep (bobby) chaggar (32:03)

a shame of an uncovered head, nothing on the

Bill Gasiamis (32:06)

Uh-huh.

Ramandeep (bobby) chaggar (32:06)

head. Because whenever my father would get up in the morning, he’ll make sure that he just wraps around a cloth around his head. When I would whenever I would get up in the morning, I’ll put something on my head, then I’ll go out. So, you know, we had a smaller version, we had a bigger version, which was a formal more formal thing. So we were always used to having something on the head. So it’s what which was more shame shameful, you know? Yep, yep, yep.

Bill Gasiamis (32:25)

Yeah. Is

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

Ramandeep (bobby) chaggar (32:33)

I think we were we were brought up both ways. So personal shame number one, and a lot of times when we had gone to temples with a cap on my head, for example, some elder would come up to me and they were this is a very conservative community also in those times. You know, they would tell Why you wearing a cap? Just take it off. If you like wearing a cap, you can just cut your hair. Or if you know, Sikhs and smoking don’t go together. So it’s not that the religion says that you can’t smoke.

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

Bill Gasiamis (33:10)

Uh-huh.

Ramandeep (bobby) chaggar (33:10)

that. It was a very conservative society and it was a taboo. Smoking was a taboo, for example. So that’s how we grew up. So that’s the turban part. But I was I was more more spiritual and I was just more

Personally ashamed of not being able to do it.

Bill Gasiamis (33:23)

Yeah.

Ramandeep (bobby) chaggar (33:24)

But I think it’s it’s it’s worked well. So I’m I’m kind of in a in a gray area now. You know, I’ve come back to hair. So I I will I will I’m open to tying it again. I want to do it, but I’m not rushing it. I know it’ll

Bill Gasiamis (33:34)

Yeah. Yeah.

Ramandeep (bobby) chaggar (33:36)

happen. It’ll happen one day, 100%. But I’m not

Bill Gasiamis (33:38)

Yeah.

Ramandeep (bobby) chaggar (33:39)

too eager. Yep, yep.

Bill Gasiamis (33:40)

a lot of stroke survivors get tattoos. Did you get a few?

Ramandeep (bobby) chaggar (33:43)

yes.

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

Bill Gasiamis (33:55)

Uh-huh. Is

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

Ramandeep (bobby) chaggar (34:00)

It’s it’s very funny you asked that because you know we were not very pro tattoo. I mean, to to risk due respect to everybody who’s got a tattoo. It’s not it’s nothing negative. But we we were not very inclined to color our bodies in any r any way, right? When we grew up. So, but but there’s a friend of mine who was visiting me in hospital. He had a few, and he was in New Zealand for a long time. So he was he had that Kiwi influence, he had a Kiwi wife.

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

Bill Gasiamis (34:52)

Was it like also, I

Ramandeep (bobby) chaggar (34:54)

Mm.

Bill Gasiamis (34:54)

think you mentioned in your book, it was like a bit of a protection. Is this some, is was a way to change the conversation? what other role did it serve?

Ramandeep (bobby) chaggar (35:03)

So, you know, at that point I got it done specifically at that point because of the same reason. So I wanted to get it done, but I didn’t know when. So I just thought of it. I remember one day I was walking past someone and he was coming to that table and he sat down and people asked him about his tattoo, which is that which he had on his leg. So I was like, hey. So people are just noticing that. He’s such a gorgeous looking guy, man. He’s well dressed and look at his specks, what he’s wearing.

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

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

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

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

Bill Gasiamis (37:00)

I love it.

Ramandeep (bobby) chaggar (37:00)

yeah, that helped that helped in my recovery for sure. Yeah, yeah, yeah, yeah, yeah, yeah, yeah. Yeah.

Relocation and Its Challenges

Bill Gasiamis (37:02)

Great distraction, great distraction. Yeah. That’s a great idea. So one

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

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

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

Ramandeep (bobby) chaggar (38:10)

So imagine if you can say that ten, fifteen years into your stroke after recovering so much. So for for even that far recovery is difficult for them. So doing it one year into the stroke, or I would say one month into the stroke and moving everybody lock, stock, and barrel. I think that was the silliest idea I had. But my family supported me and we did it together and we did it. But it was pretty lonely for me. I was pretty lonely.

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

Bill Gasiamis (39:03)

Isolated,

Ramandeep (bobby) chaggar (39:03)

But

Bill Gasiamis (39:04)

you isolated yourself

Ramandeep (bobby) chaggar (39:06)

Yep, yep, yep.

Bill Gasiamis (39:07)

unwittingly. Like you didn’t expect that that would happen. Is it just something that happened later? You, realized later.

Ramandeep (bobby) chaggar (39:14)

And plus, you know, I my my job, I my job questioned me that why should we not terminate your thing? Because we don’t have much in Perth. So if even if you become okay, why should we not

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

Bill Gasiamis (39:36)

Yeah.

Ramandeep (bobby) chaggar (39:36)

So

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

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

Ha ha.

made me calculate and rethink.

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

Bill Gasiamis (40:38)

Well then.

Ramandeep (bobby) chaggar (40:39)

yep, yep.

Bill Gasiamis (40:40)

You need to wear your life jacket first. That’s

Ramandeep (bobby) chaggar (40:42)

Yep, yep, yep.

Bill Gasiamis (40:44)

such an amazing statement. And also, it’s really important for caregivers to remember that that they need to wear their own life jacket first. Because caregivers go through this with their loved ones, whoever they’re caring for that had a stroke, and they put themselves second. And then they suffer, they suffer because they haven’t got time to themselves because they get on well. And often with people who are very

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

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

Ramandeep (bobby) chaggar (41:43)

Okay.

The Importance of Caregiver Self-Care

Bill Gasiamis (41:44)

statement.

Ramandeep (bobby) chaggar (41:44)

I think my an analyzing people was out of the window. I was not analyz analysing anyone. I’m I’m not even judgmental as a person. So I don’t easily judge. I trust people at the first instance.

Sorry.

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

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

Bill Gasiamis (42:46)

Yeah, that’s the thing. That’s interesting. I put podcast episodes out all the time. I I’ve got no idea which part will help, but somebody will reach out and they’ll pick an obscure part of the podcast episode. I’ll say that really helped me hearing that really helped me. And I was like, okay. Cool. We’ve, we’ve, we’ve achieved our outcome. It helped you. I’m happy that it helped you. And because everyone is in a different position and they’re looking for different types of information and you know, what’s,

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

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

Adjusting to a New Normal

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

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

Ramandeep (bobby) chaggar (44:20)

I obviously didn’t like it initially.

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

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

What do you do?

Bill Gasiamis (45:11)

Dude, it

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

Ramandeep (bobby) chaggar (45:16)

Yep, yep,

yep.

Bill Gasiamis (45:18)

In a

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

Ramandeep (bobby) chaggar (45:46)

Are you going running?

Bill Gasiamis (45:46)

He said to me, I wake up in the morning and I go for a run. I said, fantastic. I’m going to wake up in the morning and go for a walk. You go for a run.

Ramandeep (bobby) chaggar (45:52)

Yeah.

Bill Gasiamis (45:53)

I’m not running. I can’t run.

Ramandeep (bobby) chaggar (45:55)

You can run either, huh? Yep, yep.

Bill Gasiamis (45:56)

Not anymore. No. My

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

Ramandeep (bobby) chaggar (46:15)

Yep, yep, yep, yep. I know exactly what he’s saying, yep, yep.

Bill Gasiamis (46:17)

I’m really concerned. And also my ankle, I’m not comfortable with my

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

Ramandeep (bobby) chaggar (46:37)

I think walking is better. Yep, yep, yep.

Bill Gasiamis (46:38)

Yeah, I have to think about it too much as well. And

it makes it more fatiguing, more exhausting.

Ramandeep (bobby) chaggar (46:44)

How are you with stairs? Do you how how do you climb stairs and up and down? Are we yep?

Bill Gasiamis (46:48)

If you saw me climbing stairs, I wouldn’t look any different. Coming

Ramandeep (bobby) chaggar (46:51)

Yep, yep.

Bill Gasiamis (46:52)

down is harder. I have to make sure I’m near that handrail to either

Ramandeep (bobby) chaggar (46:56)

Hold on.

Bill Gasiamis (46:57)

hold on or be close to it so I can hold on if I need to. Because again, my left knee, don’t, trust it, but like it can let me down. Like it doesn’t feel safe walking down the stairs. Going up is fine. Yeah. But it’s still.

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

the travel escalators. Yeah.

Ramandeep (bobby) chaggar (47:43)

Yep, the escalators. Yep, yep, yep.

Bill Gasiamis (47:46)

I, and, there’s a, but there’s stairs nearby. I always take the stairs.

Ramandeep (bobby) chaggar (47:50)

my god, same, same.

Bill Gasiamis (47:51)

Yeah. It’s my rehab.

Ramandeep (bobby) chaggar (47:53)

Yeah,

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

Bill Gasiamis (48:02)

Yeah.

Yep. And

Ramandeep (bobby) chaggar (48:03)

Yeah.

Bill Gasiamis (48:03)

I’m happy to use them coming down. And I’m happy to, and I hate, you know, when you go up the escalator and it’s rolling and people are standing on it, waiting for the escalator to get them to the top. That drives me crazy. I have to go past them. You know, I have to walk.

Ramandeep (bobby) chaggar (48:18)

Yeah, same even even now I do that. It’s quite annoying, isn’t it? In your brain. I know

Bill Gasiamis (48:20)

Yeah. Yeah. Yeah.

Ramandeep (bobby) chaggar (48:24)

that’s the same habit. Same, same, same habit. I I I’m not the only one, thank God. But initially,

Bill Gasiamis (48:28)

Yeah.

Ramandeep (bobby) chaggar (48:28)

you know, I was thinking that I’ve got this risky behavior because I would do the inclines and declines deliberately. I don’t know why. So they we were staying in a place called Hampton, which is close to the beach, and we’re not too fond of the beach. That’s why we’ve moved in inwards because we like the

You the flora and fauna rather than the just the

Bill Gasiamis (48:46)

Yeah.

Ramandeep (bobby) chaggar (48:47)

So there was a circuit which I planned in my head that that’s an incline and that’s a decline. So I’m gonna do this once the first fifteen days, then I’m gonna do this twice. Because this OT of mine she told me she said, Don’t do it on a daily basis. You amp it up on a fortnightly basis. So I I I amped it up and I remember before moving to where we are at the moment, I was doing about ten rounds of that circuit. So it was a

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

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

Bill Gasiamis (49:45)

Yep. Yep.

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

Ramandeep (bobby) chaggar (49:51)

Yeah, yeah.

Bill Gasiamis (49:51)

themselves, to see where they’re at. You know, I, I, I want to manage risk definitely coming down to sit downstairs. That’s why I’ll be close to the handrail. A

Ramandeep (bobby) chaggar (50:00)

Yep, yep.

Bill Gasiamis (50:01)

hundred percent. going up the stairs. No, I’m okay with that. go going, coming down the stairs. I might go down sideways to make sure my entire foot is on the, on the tread, the entire foot left foot.

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

Ramandeep (bobby) chaggar (50:20)

Yeah, yeah.

Bill Gasiamis (50:21)

that’s dangerous for me. Cause that might, I could lose my balance and fall forward, you know? So I kind of walk like a crab sideways down the steps. but there’s nothing wrong with testing your boundaries if you’re safe. but also this very good thing to take a risk into consideration, do a small risk assessment to make sure that you’re.

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

Ramandeep (bobby) chaggar (50:53)

I agree. Yeah.

Bill Gasiamis (50:54)

start to improve. Yeah, do a little bit of testing and see how you can go, especially if you’ve got people around you and they can be there with you, guide you and maybe hold your hand or support you. So you wouldn’t happen to have a copy of the book there, do you?

The Journey of Riding Again

Ramandeep (bobby) chaggar (51:09)

not not here, but I have it in Melbourne.

Bill Gasiamis (51:11)

That’s all right.

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

Ramandeep (bobby) chaggar (51:21)

So there was there was a picture taken by one of our cousins and we just sat on the motorcycle for the picture. I couldn’t ride it. I didn’t have a license at that time. So we just and and you can see in that picture that the bike is actually parked on the grass. So it’s on not on the road. That’s a catch. You know, that’s that’s the part way people can pick up on that okay, how how come this guy is standing in the in a garden on his bike? What’s

Bill Gasiamis (51:43)

Yeah.

Ramandeep (bobby) chaggar (51:44)

happening here? So we literally pushed the bike onto the garden.

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

Bill Gasiamis (51:57)

Yeah. I thought I walked.

Ramandeep (bobby) chaggar (52:00)

I wanted it for the book. I actually wanted it as a front cover, but they said the you know, my publisher said that it’s advisable that you don’t use your personal image in that size on the front. You can use it on the back, a little smaller one. So we agreed with them.

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

Bill Gasiamis (52:18)

with your affected side, how do you find writing? Because I used to ride a motorbike and I thought about potentially riding a motorbike again, especially perhaps like a, know, sometimes there’s those three wheel motorbikes and all that kind of stuff. But my left side with

Ramandeep (bobby) chaggar (52:37)

Plunge.

Bill Gasiamis (52:38)

the clutch, yeah, would be challenging to find.

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

Ramandeep (bobby) chaggar (52:52)

Okay, so I’ll I’ll tell you this another challenge which I did to myself. What was that? So I always had my bike parked at my house. As an exercise, you know how I would start and end my exercise? At the beginning of the exercise, I’ll try and come and sit on the motorcycle and get off and do the same on on my way back into the house. So that was my part of the exercise, which nobody told me. I did that myself because I wanted to.

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

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

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

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

Bill Gasiamis (54:31)

I say they.

Ramandeep (bobby) chaggar (54:32)

OCD, whatever you may call it. So I used to clean the gas cooking range all the time. And I could not reach the end of the gas.

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

Bill Gasiamis (55:02)

It is a truck. Yeah. Cool.

Ramandeep (bobby) chaggar (55:04)

sidecar. So there’s no danger of falling over.

Bill Gasiamis (55:06)

Cool.

Ramandeep (bobby) chaggar (55:07)

So although when I when I did my test, it’s it’s very difficult, you know, when you when you get on a bike or when you even when you get into a car initially, when you are going for a license testing. So your body knows how to drive. But it’s so so different. The car goes to one side initially because you’re not used to using just one hand. So so just looking at those things, even the bike, the two wheel bike when they tested me on was quite intimidating for my body. But I was like, I have to do this for my son. Just get got me through.

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

go onto the highway.

Bill Gasiamis (55:41)

yeah, yeah.

Ramandeep (bobby) chaggar (55:41)

So it’s only for local use, just to go to a cafe, just to go around a house, just to take

Bill Gasiamis (55:44)

Yep, bit of fun.

Ramandeep (bobby) chaggar (55:45)

the yeah, fun fun, just load the kids, then load the dog, sometimes load the missus,

Bill Gasiamis (55:48)

Yep. Yep.

Ramandeep (bobby) chaggar (55:50)

just go around your colony and that’s it. Yeah. Yep, yep.

Bill Gasiamis (55:53)

Love it. Love it.

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

Ramandeep (bobby) chaggar (55:58)

So I created a landing page for my book which is called not gone yet.au.

Bill Gasiamis (56:02)

Okay.

Ramandeep (bobby) chaggar (56:03)

So if you click on it, it it’s basically a landing page and it’s a small blurb about my book. So it’s got the Amazon link and it’ll take it it takes people to the Australian site.

Bill Gasiamis (56:14)

Yep.

Ramandeep (bobby) chaggar (56:14)

All they have to do is just change the Amazon site from Australia to US or India or whichever country they’re in. I think you can order a few things in New Zealand, for example.

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

Bill Gasiamis (56:33)

Okay.

Ramandeep (bobby) chaggar (56:33)

And I could not narrate it because obviously, as you can see, I’m so happy doing it. But my son is there in acknowledgments. So he thanks henna in the acknowledgments. That’s when it starts. That I am Ramandip Chagar’s son. I take this opportunity to thank Henna, who promised my dad that he’s gonna walk one day. She’s done a good job.

This is one shot. So

Bill Gasiamis (56:53)

Yeah.

Ramandeep (bobby) chaggar (56:53)

we went to this place where he was supposed to be recorded, and I thought that he’s gonna take fourteen, fifteen trials for doing he just did it in one shot.

Bill Gasiamis (56:59)

And on that note, I really appreciate you reaching out, coming on the podcast, being so open and sharing your story. And I wish you well.

Ramandeep (bobby) chaggar (57:06)

Thank you so much, Bill. Thank you very much. Lovely to speak with you as well. Thank you very much

Bobby’s Journey of Unlearning and Grief.

Bill Gasiamis (57:09)

Well, that was Bobby Chaggar. Thank you so much for your openness today, Bobby, for walking us through what it actually looked like to unlearn a belief you’d carried your whole life and for being honest about how hard it was to let yourself grieve. If you want to read Bobby’s account of his stroke story, his book is available on Amazon, Spotify, and Audible. The links will be in the show notes. And you can also check out his landing page at

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

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

Podcast.

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

Teenage Stroke: When Recovery Feels Like Losing Yourself

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

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

Who Was Benjamin Before the Stroke?

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

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

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

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

Why Teenage Stroke Is Different

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

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

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

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

When the Brain Heals Faster Than the Self Can

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

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

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

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

The Road Back And What It Actually Looks Like

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

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

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

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

Listen to EP422

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

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

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

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

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

Benjamin Miller on Identity, Substances, and Finding His Way Back

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

Highlights:

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

Transcript:

Introduction – Teenage Stroke

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

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

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

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

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

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

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

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

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

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

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

Benjamin Miller (02:12)
It was 2017,

the fall of 2017. So

Bill Gasiamis (02:16)
Okay.

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

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

Benjamin Miller (02:34)
Yeah.

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

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

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

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

Bill Gasiamis (03:51)
Mm-hmm.

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

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

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

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

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

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

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

Bill Gasiamis (06:19)
Yeah.

Benjamin Miller (06:20)
just…

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

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

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

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

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

The Day of the Stroke

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

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

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

Bill Gasiamis (09:16)
What

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

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

Bill Gasiamis (09:54)
Mm.

And then at some point you wake up in hospital,

Benjamin Miller (10:00)
Yeah, I

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

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

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

Bill Gasiamis (10:36)
Mm-hmm.

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

Bill Gasiamis (10:49)
Mm-hmm.

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

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

The Loss of Identity

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

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

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

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

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

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

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

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

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

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

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

Bill Gasiamis (14:21)
Mm.

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

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

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

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

Bill Gasiamis (15:38)
Mm-hmm.

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

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

Bill Gasiamis (15:59)
Yeah.

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

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

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

Bill Gasiamis (16:12)
Hmm.

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

And kind of stopping from coming forward.

Coping Mechanisms: Alcohol and Escapism

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

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

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

Bill Gasiamis (17:51)
Mm.

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

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

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

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

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

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

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

Benjamin Miller (19:50)
you

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

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

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

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

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

Benjamin Miller (20:27)
Mm-hmm.

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

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

Bill Gasiamis (20:49)
Mm-hmm.

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

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

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

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

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

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

COVID-19: A Blessing in Disguise

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

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

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

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

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

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

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

Bill Gasiamis (24:02)
Okay.

Benjamin Miller (24:02)
pounds.

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

So

Benjamin Miller (24:15)
So.

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

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

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

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

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

Bill Gasiamis (26:08)
Mm-hmm.

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

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

Bill Gasiamis (26:33)
Yeah.

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

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

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

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

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

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

to

The Journey of Healing Begins

Bill Gasiamis (28:57)
Mm-hmm.

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

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

Benjamin Miller (29:26)
Mm-hmm.

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

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

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

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

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

Bill Gasiamis (31:19)
Never linear.

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

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

Benjamin Miller (31:48)
Yeah.

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

Facing Uncomfortable Emotions

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

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

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

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

Benjamin Miller (33:47)
Thank you.

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

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

Benjamin Miller (34:01)
Mm-hmm.

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

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

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

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

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

Benjamin Miller (35:30)
Thank

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

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

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

And then you get stuck behind something like a log that

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

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

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

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

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

Spiritual Awakening Through Adversity

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

Benjamin Miller (39:10)
Mm-mm.

Bill Gasiamis (39:11)
And

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

Benjamin Miller (39:27)
Thank

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

growth journey.

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

Bill Gasiamis (39:50)
No, tell

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

The Power of Breath and Movement

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

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

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

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

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

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

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

Bill Gasiamis (43:24)
I

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

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

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

Benjamin Miller (44:39)
Thank you.

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

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

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

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

Benjamin Miller (45:28)
Mm.

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

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

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

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

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

Bill Gasiamis (47:35)
Yeah.

Building Community in Recovery

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

Yeah, it’s so hard.

Bill Gasiamis (47:46)
I love

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

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

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

Benjamin Miller (48:50)
Mm-hmm.

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

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

Benjamin Miller (49:19)
Yeah.

Bill Gasiamis (49:21)
and getting yourself grounded and being okay about it was just a real cool thing to sort of to sort of see in that in that moment in that in that time it is a it’s a it’s a it’s a martial art but for a different purpose. It’s not

for defending yourself or taking somebody down. It’s the exact opposite of what you were doing on the field as well.

Benjamin Miller (49:53)
just felt like refinding yourself in like the chaos of everyday life. That’s like how I describe it. Like it just allows you to come back to like your center line and just, just be. like, it’s like thinking of the Tai Chi versus a robber. Like that’s why I continued like from Tai Chi. started to go, I lived in Thailand in 2024 for a couple of months and train Muay Thai.

as like the next stage to go from like super slow to start speeding everything up. And I was lucky enough to go live in up in Northern Thailand and Chiang Mai and train Muay Thai for a couple of months and have been back. And yeah, I’m actually going, my mom and I are to Bhutan where my mom is from at the end of October. And then I’ll go spend a little bit of time in Thailand before I come back home. So.

Yeah, life is…

Bill Gasiamis (50:51)
I

I I think about people going in practicing getting in the ring, MMA, Muay Thai, all that kind of stuff. It’s like, dude, how can you do it? How can you get in the ring and know that you’re going to get hurt?

Benjamin Miller (51:09)
I don’t,

I won’t fight. just like, sparring is like very like just tap sparring. So it gets like all timing and rhythm, but

Bill Gasiamis (51:17)
Yeah.

Benjamin Miller (51:17)
like I had to retire from contact sports. So it’s just like more of like a therapeutic, like

Bill Gasiamis (51:22)
Okay.

Benjamin Miller (51:23)
beating my body up and learning how to throw kicks with both my right leg and left leg, throwing

Bill Gasiamis (51:27)
Okay.

Benjamin Miller (51:28)
punches. So yeah, I’m not going to go fight.

Bill Gasiamis (51:31)
I

okay, good. That’s fine. I mean, even if you did, that’s fine as well. But that’s immediately when I what I went to when you said Moi Toy, like I’ve seen those dudes, they’re mental and amazing athletes, but they hurt themselves. And I saw how can you put yourself in that kind of danger? Even though that’s what you’re training to do. It my mind doesn’t go there, you know, it can’t physically make me do that. Of course I’ve defended myself in fights before if I’ve needed to.

not as a fifty year old, but I probably still could, but getting in the ring is a completely different thing. So you’re not getting in the ring. That’s cool. so you worked with stroke survivors. How did that come about? Why did that come about?

Benjamin Miller (52:19)
Yeah.

I was, like a guinea pig, like early patient at a stroke clinic in the Netherlands. And I, my, one of my mentors who’s co-owner of this clinic, Linda Radezdad, she wrote two books now, Stroke Rebell,

Bill Gasiamis (52:37)
Yeah.

Benjamin Miller (52:38)
Stroke Rebell 2, and just had the ability to go there and attend the clinic. And while I was there, I mean, they treated me like family.

It was the first time, this was in 2022, so about four and a half years since my stroke, the first time I ran in four and a half years. And they just wanted me to come back and volunteer at their clinic. Cause I opened another one in Cyprus and that they just did last year one in South Carolina in the U S and then earlier this year in Florida.

So I got to go out to Cyprus in 2023, then South Carolina last year, then Florida at the beginning of this year. And they just, mean, they just always treated me like family. And I’ve been so grateful for her and her partner, our young Kipers. Both of them have treated me like their own son, invited me into their house. I stayed with them after Cyprus, going back where they live in Germany and got to go to the clinic with them every day for two weeks while I stayed with them.

And yeah, I I don’t know what I’d

Bill Gasiamis (53:45)
Yeah. How amazing.

Benjamin Miller (53:47)
do, but.

Bill Gasiamis (53:48)
I’ve heard of Linda and her partner. I’ve heard of them for many years and I don’t really understand what they do. Linda had a stroke, is that right?

Benjamin Miller (53:58)
She had two strokes in 2017 and at the beginning of 2018 I want to Drunk.

Bill Gasiamis (54:03)
Uhhuh. Okay.

And now they run is it retreats? Are these clinics full time? and d do they see only stroke survivors or do they see all sorts of people?

Benjamin Miller (54:16)
I know Arjan when he ran his chiropractic clinic in Zutphen, the Netherlands, it was like he would see people with TBIs and strokes and just anything brain related. But now I think they’re focused on strokes and they host like two week retreats multiple times a year. I don’t know their website, but

Yeah, they do them in Cyprus and Sweden in the summer. And then now they’re starting in the U S so it’s. Yeah, I don’t know what their end goal is, like how like what’s next for them, but I know they’re retreat. Like at least when I went in 2022, it was like. The amount of attention I got for. 14 days straight was nothing I’d ever experienced in any hospital or any.

outpatient or inpatient rehab. It was something that I’ll forever be grateful for them for. But Arjan

Bill Gasiamis (55:16)
What’s the

Benjamin Miller (55:18)
just wrote his book. I couldn’t tell you the name of it, but Arjan Kuyper’s. Yeah.

Bill Gasiamis (55:25)
Yeah, we’ll look it up.

what did you gain from it, that first r retreat that you attended after fourteen days? W when you left, what did you feel like you left with?

Finding Belonging and Understanding

Benjamin Miller (55:39)
I’d say the biggest thing was just like the mental and emotional piece that I didn’t feel alone for the first time in five years. I felt like I could walk into that clinic and just be Benjamin the stroke patient and not Ben this other guy that Ben this party kid and college Ben this wannabe bodybuilder. But I could just be the stroke patient who doesn’t know what he’s doing and just wants to recover further, but doesn’t know how to move forward.

Yeah, that was like the biggest thing for me was just finding like a group of people for the first time in four and a half years.

Bill Gasiamis (56:19)
Yeah. I know that feeling of almost like belonging, but being understood and not needing to pretend and all that. That’s so good when you go into a room where people have been through what you’ve been through. It’s completely different because they get it and you don’t even have to talk. You just know that they get it and they know you. and it’s interesting that you said like what you got out of it was

Like all

emotional and

kind of more more along the lines of things that are unspoken rather than I walked out better or I my muscle was better or this was better or that was better. That’s definitely a goal. That’s definitely something to work towards and always find a way to try and optimize. But you’re talking about I I left feeling better, thinking better, clearly more understood, more all these things. People don’t realize that the

gravity of that experience and how profound li i it can change their life and put it on a different trajectory in a good way.

Benjamin Miller (57:35)
Yeah, I would say like even going back and volunteering, like helping work with stroke patients. It was the first time many of them would be around a group of people who they could just be themselves. could just like, they could struggle together. They could celebrate their wins, little wins together. Cause like, just like watching people walk for the first time. And I don’t know how like probably since their stroke and it was just, yeah. And like, they like just felt like,

the level of community that they’d build and even though they’d known each other for one week, two weeks, so it was a really beautiful thing just to watch humans, like human beings in that way. Just like how I, I know how isolating at post stroke it can feel that no one understands like why me? And then just seeing people who feel the way that we felt and then finding that same level of community and home.

Bill Gasiamis (58:31)
Yeah, I know exactly what you mean. so it’s twenty twenty six, we’re near the end of twenty twenty six. How are you these days? How are you feeling?

Benjamin Miller (58:42)
Yeah, doing, I mean, been really well, to be honest. Had a great summer, great spring, just really on a upward trajectory right now. I wrote my memoir, Ed and I, available on YouTube and am working on self-publishing my workbook that I kind of built over these years called Self-Healing.

Creating a Path for Self-Healing

Just like a, I want it to be like a pocket size guide that can take anywhere. And just for anybody who just after for myself being through too many psychologists and psychiatrists to count on my hands and toes, that I just wanted to create a all inclusive guide to what helped me recover mentally and emotionally and be able to integrate. Like, I don’t think recovery is just like.

You’re not recovered, you’re broken, then you’re healed. It’s just like a constant every day, check, check, check in, check in, check in, check in. Sometimes we start off the path, then we come back. We refine our center and it just, I don’t think it’s ever just a end journey. So just kind of created a workbook off that and I’m working on a website right now to have that. And we’d like to start public speaking, least around the United States right now. And I just see where we go.

Bill Gasiamis (1:00:11)
Yeah, man. It’s such a good place to find yourself. And I know the feeling of leaving the psychologists behind, you know, and the counselors behind and everyone behind and saying, Well, I don’t I think I’m good. I don’t need you now. I was probably seeing a counselor from the age of about twenty seven and still do, but there are lots of gaps in between

sessions now where there previously wasn’t. There needed to be more regular sessions, sometimes weekly, and then every two weeks and then monthly. and then once or twice a year. But now I’m kind of back into the regular monthly.

Benjamin Miller (1:01:00)
you

Bill Gasiamis (1:01:01)
And it’s been like that for about a year. And it’s just because life has changed. Things are different and I’m

reassessing and changing direction and all that type of thing. And I need somebody who’s got my back. Not not

Benjamin Miller (1:01:20)
Enough.

Bill Gasiamis (1:01:21)
that everyone around me doesn’t have my back. They do, all my family, my wife, everyone, they’re amazing. It’s just not their job to take go on the journey with me. Like they’re doing their own thing. It’s their own journey. So I I sort of seek out support.

from an independent person to just be fully even though they’re getting paid to be fully on my journey with me to support me through that. And it’s so good to be able to go back to something like that, to reach out to somebody that has been left behind for a little bit. I’m gonna venture on my own, you know, I’m a big boy now. I’m gonna go and

see what the world’s like. the world has thrown me a curveball. Okay. I’m gonna manage that, but also I’m gonna reach out and get some support, guidance, be it a Tai Chi coach, be it a Mutai coach, be it Linda on one of the events. There’s always a need for people to be

Involved in supporting us overcome and grow. But your pocket book is that as well, right? Somebody is on their own journey, but they pick up a book that you wrote because you’ve got some things to share with them that helped you and that might help them. And to self-heal is such

Benjamin Miller (1:02:57)
Thank

Bill Gasiamis (1:02:57)
a gift to be able to self-heal.

I love the idea that you can get better at self healing.

Benjamin Miller (1:03:10)
Yeah.

And I do fully agree that we always need someone like that. We can just fully disclose everything and just like let it all out. And that’s like one thing I want to tell your listeners is like if they ever need someone to just vent to just like an open ear to listen to, they can reach out to me on email, Benjamin Miller, zero one one seven at gmail.com or if they have Instagram at Ben shoe B and CHU Miller.com.

Miller. And I just like, I know what it feels like to not be able to vent to anybody, just not be able to just let it all out to someone who like, especially with family, like they want to help you so bad that they try to fix you try to fix you try to fix you. And you just sometimes just need someone just to vent and just get it out of your body so you can like have a little bit clearer of like a mental headspace. But yeah, so like if anybody ever needs like, I’m always happy just to be

This is an open ear.

Bill Gasiamis (1:04:13)
Yeah.

We’ll have the links in the show notes. I won’t publish your email address publicly, but we’ll have all the other links in the show notes and if somebody wants to reach out specific I’ll give them the email address. I’ve done that for heaps of people. but it just opens it up for spammers and all that kind of stuff. the family thing’s cool as well, like because they all want to fix the thing.

It’s such an instinct to just fix it and make everything better for the person rather than give them.

space to just sit with the thing that’s challenging them and that’s the problem and vent. I’ve got better. Like I promise, as you get older, you get better at just listening to somebody talk. My wife did that last night and I actually found myself thinking while she was just bloody talking, no, shut up. Don’t say anything. I don’t know what she’s on about. I don’t know why she’s saying what she’s saying. Just don’t

Say anything, just acknowledge her, acknowledge her, acknowledge her. And then she finished, and then we had a couple of words about it just at the very end, and then she was done. It was fine. And I didn’t step in, I didn’t fix it, I didn’t try and change it, I didn’t tell her what to do. All I did was just uh-huh, and help her and help her get through it. And it seems to be so

Counterintuitive, but it is better sometimes to say less.

Benjamin Miller (1:05:57)
It’s skill, most definitely something that’s hard learned.

Bill Gasiamis (1:06:05)
Sounds like you’re getting better at learning new skills. I really appreciate you reaching out, man, and sharing your story, being so open and transparent with everything that you had to go through to get to where you are today. And I actually look forward to hearing the book is complete because then we can have a discussion about the book and we can promote the book on the podcast as well.

Benjamin Miller (1:06:34)
Thank you for having me on Bill. It’s my pleasure and thank you again.

Bill Gasiamis (1:06:40)
Well, that’s another episode Done and Dusted. What a fantastic guest Benjamin was. I really learnt a lot from his resilience and perseverance and the way he goes about thinking about his continued journey to recovery from everything that has ailed him. If this episode moved you, pick up a copy of my book, Your World Doesn’t Have to Stay This Small, a practical guide to rebuilding your life after trauma, even when you’re not ready. It’s available on Amazon.

Search for my name, Bill Gassiamas, or click the link in the description so you can find it. And if this show has helped you and you would like to help me get to a thousand episodes so that every stroke survivor can find this podcast and feel better about their stroke recovery journey, you can support the show on Patreon.com/recoveryafterstroke. From as little as six dollars a month, you’ll be helping me cover the costs of hosting, recording, editing,

publishing and paying the person that helps me to put this episode out every week. Just visit patreon.com/recoveryafterstroke.. Thank you so much for tuning in and listening. I’ll see you on the next episode.

The post He Was 16 When a Stroke Ended His Football Career – Benjamin Miller on Identity, Substances, and Finding His Way Back appeared first on Recovery After Stroke.

Identity After Stroke: Who Are You When Your Career Is Gone?

Cassie Jewell got back from Iceland on a Monday. On Wednesday, she was demoted from the job she had built her life around. On Friday, she was in an ambulance with a stroke.

She was 42, a licensed counsellor supervising behavioural health programs inside a US jail. She loved working with inmates and took two or three extra hours of work home most nights. “My entire identity was my career,” she told me. Within a single week, she lost the role and nearly lost her life.

Her story shows something many survivors struggle to name: identity after stroke isn’t only about what your body can still do. It’s about who you are when the roles you relied on are gone.

The Week Everything Changed

On the Thursday night after the demotion, Cassie stayed up writing a book, determined to prove she still mattered. As she typed, her left hand stopped working. She put it down to tiredness and went to bed.

She woke the next afternoon knowing something was wrong but not what. She decided it was a panic attack. Then she remembered her hand. She texted her mum, a nurse practitioner, who told her to call 911 and ask for a hospital with a stroke centre.

When the paramedics arrived asking for the stroke patient, Cassie was the one who had answered the door. One side of her face was drooping and her left side was weakening. The diagnosis was an ischaemic stroke in the right basal ganglia, a deep brain region involved in movement, balance and, as she discovered, emotional regulation. If you want to understand this area of the brain better, our episode on lower basal ganglia stroke (https://recoveryafterstroke.com/lower-basal-ganglia-stroke/) goes deeper.

Her doctors told her stress contributes to stroke rather than causing it directly, and her cardiologist is still monitoring her heart rhythm. Cassie has her own view: “I was literally burning myself to the ground… and then my brain was like, okay, we’ve had enough. We’re gonna stop you.” It’s a theme we’ve explored before in stroke and stress (https://recoveryafterstroke.com/stroke-and-stress-darren-walker/).

When Your Brain Tells You You’re Fine

The day after her stroke, Cassie tried to go to work. Her mum stopped her. Later, before she was cleared to drive, she got behind the wheel and bumped another car on her first day out.

There’s a name for part of what was happening: anosognosia. It describes reduced awareness of your own deficits after a brain injury, and it’s more often associated with right-hemisphere strokes like Cassie’s. It isn’t stubbornness or denial; it’s a symptom of the injury itself, which is why a survivor can sincerely insist they’re okay while the people around them can see otherwise.

Cassie summed up that period in one line: “It’s fine, it’s gonna be fine, even though it clearly, you know, wasn’t fine.” For families, understanding it can turn an argument into patience.

Why Identity After Stroke Hits So Hard

Identity is built from what we do, the roles we hold, and the stories we tell about ourselves, and a stroke can remove several at once. The more tightly your sense of self is tied to a single role, the larger the gap it leaves.

“I lost my career and myself at the same time,” Cassie said. Her first job after returning to work didn’t last. She found she wasn’t as quick as she used to be, and that raised a harder question: “When you measure your self-worth in the things that you do… and then all of a sudden you don’t have your career anymore, who are you?”

I recognised that question. Before my own strokes, I was a business owner and a dad, and I couldn’t have told you anything about myself beyond those labels. I didn’t have the vocabulary for identity loss. Guests such as Adam Wolfers (https://recoveryafterstroke.com/cerebral-vasculitis-stroke-identity-change-adam-wolfers/) have described the same collision between who they were and who they now are, and anyone weighing up work decisions may find our episode on changing career after stroke (https://recoveryafterstroke.com/change-career-after-stroke/) useful.

The emotional side can catch even a professional off guard. “You’d think as a therapist I would be good with it,” Cassie said, “but I’d prefer to deal with other people’s emotions, not my own.” Our conversation about emotional changes after stroke (https://recoveryafterstroke.com/emotional-changes-after-stroke-sam-hanes/) explores this further.

Choosing Who You Become

Eighteen months on, Cassie doesn’t have an elevator pitch for who she is. She’s clearer about who she isn’t: someone driven by work. She values free time, her partner, and her dogs. She works full time doing intake assessments and sees private clients, and she describes herself this way: “I’m not as sharp as I was before, but I think I’m kinder.”

A stroke, she says, “strips away everything else so you have nothing left but yourself,” and then “you can also choose what your new identity is gonna be.”

That choice matters most. For most of my life I did what I’d been trained to do; it took a stroke to show me I could choose differently. Researchers Richard Tedeschi and Lawrence Calhoun called this post-traumatic growth: positive change that comes from the struggle with a traumatic event, not from the event itself. Cassie put it in her own words: “It’s not about the stroke. It’s about, okay, what am I gonna choose to do now?” It’s the idea at the centre of my book, The Unexpected Way That A Stroke Became The Best Thing That Happened (https://recoveryafterstroke.com/book).

Practical Ways to Rebuild Identity After Stroke

Drawing on Cassie’s story, here are a few starting points:

Separate what you do from who you are. Write down your values, not your job titles. Values survive a stroke better than roles do.

Give it time. For me, it took a few years before I could say I liked the person I’d become. Early recovery is rarely the time to decide who you’ll be forever.

Let people you trust be your early-warning system. Cassie’s partner noticed her overwork long before she did, and her mum recognised the stroke symptoms. With anosognosia in the picture, other people’s observations matter.

Replace old coping habits, don’t just remove them. Recovery is a chance to swap quick fixes for stress for ones that last.

Use time as a lens. Cassie is reading Four Thousand Weeks by Oliver Burkeman and aims to visit all 195 countries.

Find people who understand. Other survivors often give you the words for your experience. Our episode on finding purpose after stroke (https://recoveryafterstroke.com/finding-purpose-after-stroke/) is a good next listen.

Listen to Cassie’s Full Story

Watch or listen to the full conversation with Cassie Jewell. You can find more of her work at cassie-jewell.com (https://cassie-jewell.com).

If a stroke has left your world feeling smaller, my new book, Your World Doesn’t Have to Stay This Small (https://mybook.to/yourworld), is a practical guide to rebuilding your life after trauma, even when you’re not ready.

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

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

Losing My Career and Myself, Then Choosing Who I’d Be – Cassie Jewell (Interview)

A stroke at 42 took Cassie Jewell’s career and the identity built on it. What she found underneath changed how she works, loves, and travels.

Highlights:

00:00 Introduction – Cassie’s Identity After Stroke
01:08 Life Before the Stroke
09:35 The Day of the Stroke
23:02 Aftermath and Recovery
28:41 Hospitalization and Rehabilitation Journey
32:04 Dissociation and Identity Post-Stroke
38:12 Life After Stroke: Adjusting to New Realities
50:32 How Stroke Forced Me to Discover Who I Really Am
01:02:14 The Dual Nature of Stroke Experiences

Transcript:

Introduction – Cassie’s Identity After Stroke

Bill Gasiamis (00:00)
Hi everyone, welcome back to Recovery After Stroke. I’m Bill Gassiamis. My guest today is Cassie Jewell, a counselor and author from the United States, who in February of 2025 at 42 had an ischemic stroke in the right basal ganglia. In the same week, she was moved out of the role she had built her whole identity around. We talk about perfectionism and the overwork loop that’s so hard to step out of.

Why she tried to go back to work the day after her stroke, a condition called anosognosia. And the question at the heart of this episode: who are you when your career is gone? Now, if stroke has made your world feel smaller, my book is written for you. It’s called Your World Doesn’t Have to Stay This Small: A Practical Guide to Rebuilding Your Life After Trauma, Even When You’re Not Ready. Search for it on Amazon or tap the link in the show notes.

And if this show has helped you, you can support it at patreon.com/recoveryafterstroke. And a massive thank you to everyone who already supports the show. You’re the reason these conversations keep happening.

And now it’s time for the interview.

Life Before the Stroke

Bill Gasiamis (01:08)
Cassie Jewell, welcome to the podcast.

Cassie (01:10)
Hi, how are you?

Bill Gasiamis (01:12)
I’m well. Thank you. Great to see you here. I really appreciate you joining me. I want to ask you a little bit about what your life was like before the stroke. What did you get up to? How did you occupy your time?

Cassie (01:26)
So my life was out of control before the stroke. I was working at a jail and it was a super stressful position. it was just stress all the time. I had a really bad supervisor too, a micromanager.

but I also that wasn’t the only part of my life. I traveled a lot.

I don’t know.

It’s hard to even think about it now, honestly.

Bill Gasiamis (01:54)
How long ago was the stroke?

Cassie (01:57)
So the stroke was it’s been about a year and a half. It was February twenty first, twenty twenty five.

Bill Gasiamis (02:02)
Mm-hmm.

w were you in a relationship? Were what’s the living arrangements like? What were you doing like personally?

Cassie (02:12)
Yes, I was in a relationship. I’m still in the same relationship. but I guess I was talking about work first because that was my entire life. It like revolved around my job. And I actually loved my job. It was just

some of the stress part that I didn’t love.

Bill Gasiamis (02:29)
You loved your job, so you’re working in a jail with inmates?

Cassie (02:33)
Yes, I’m a therapist.

Bill Gasiamis (02:36)
okay.

Cassie (02:38)
And so

I was working as a behavioral health supervisor at the jail. I didn’t have a lot of client contact, but when I did, those were the good days. But a lot of it was just inputting data, which was not fun.

Bill Gasiamis (02:54)
just all about reporting things to the bodies governing the jails or to

Cassie (03:00)
Yes. So specifically I worked with the when I say MAT, do you know what I mean by that? Medication

Bill Gasiamis (03:06)
No.

Cassie (03:07)
assisted treatment. So for the inmates who had opioid use disorders, they would start taking medication to help with that. It’s called Suboxone or buprenorfin is the name of the medication. Suboxon is the brand name.

Bill Gasiamis (03:24)
Mm-hmm.

Cassie (03:25)
But it helps

with cravings, so a lot of the inmates were on the medication. My role was to track all of the inmates who were on medication.

And so that was the data piece, like spreadsheets and just that was a lot. I kind of

Bill Gasiamis (03:42)
So you

Cassie (03:43)
sorry, go ahead.

Bill Gasiamis (03:44)
I was gonna say you became a counsellor or a therapist to have one-on-one contact with people, but you’re finding

Cassie (03:53)
Right.

Bill Gasiamis (03:53)
yourself in a situation where it’s all about statistics, data and a whole bunch of other things that you really w didn’t sign up for when you first started out to be a therapist.

Cassie (04:03)
Exactly. Like it was a good day if I got to spend time with clients or inmates. And a bad day would be me just at my desk, like hunched over till my neck was aching and just like I said, spreadsheets and data.

Bill Gasiamis (04:18)
Your world kind of revolved around work. How many hours a a week did you work?

Cassie (04:24)
I mean technically I was supposed to work forty hours, but I would stay late and I would work from home. So like that’s the worst thing about, you know, since the pandemic everybody works from home. I was able to bring it home with me, so if I didn’t finish something at work, I would just I’d be sitting on my couch make

Bill Gasiamis (04:45)
Is it that the

workload was too too high or was it just the nature of the job?

Cassie (04:51)
So to be honest, well the workload was definitely too high and I I’m sharp enough to know like if it was or wasn’t and it definitely was, but at the same time I’m a perfectionist and I wanted things to be perfect and so that played a lot into it. And this is what I realized in hindsight, ’cause at the time I would have told you that the workload was ridiculous and like I didn’t play any role in it, but I did.

Bill Gasiamis (05:20)
Wow. So that’s an awareness

Cassie (05:21)
I wanted it.

Bill Gasiamis (05:22)
you’ve had recently. The perfectionism thing is a real what is it like a real barrier?

Cassie (05:30)
Yeah, it’s I’ve dealt with it my entire life. But when it comes to employment with certain things, you can’t be a perfectionist ’cause it’s just going to kill you eventually. And for me it almost did. Like I believe my stroke was in part caused by stress because that was the only thing in my life that was like different. I’m a pretty healthy person.

Bill Gasiamis (05:56)
Yeah. At home, when you were working at home, how many additional hours would you be doing if you had a regular day at work and then came home? How much additional time would you be spending?

Cassie (06:06)
Like two or three.

Bill Gasiamis (06:08)
Yeah. Okay. And then are your employers noticing? Are they going, Well, congratulations, you’ve got the best notes in the world or the best statistics or data?

Cassie (06:17)
Nope, nobody noticed. My manager also worked from home and I know this because she would send emails like at ten PM and be like she’s doing the same thing because I think it’s probably in America like jails are not well staffed and not well run. And it’s probably just widespread. You have people who are overworking and no wonder nobody wants to work in a jail.

I loved it though. I loved the like I said, I loved working with the inmates. I like people.

Bill Gasiamis (06:49)
Yeah.

Cassie (06:50)
I like working with people. Doesn’t matter if they’re an inmate or not an inmate, like that’s why I became a therapist.

Bill Gasiamis (06:57)
Yeah. Ideal candidates for support therapy,

Cassie (07:00)
Yeah.

Bill Gasiamis (07:01)
learning new skills, understanding how their behavior impacts their life and other people and all that type of thing. And maybe some of the first times that they’ve ever come across a therapist, would you say for s for a lot of the people that end up in jail?

Cassie (07:17)
Possibly.

And a lot of the people who were addicted to opiates or they maybe h not b have been addicted, but who used opiates didn’t even recognize how deadly it was. They

Bill Gasiamis (07:30)
Mm-hmm.

Cassie (07:30)
had just been like they were young, like I said, children is how I see it. Like I’m in my forties now, but so everybody’s a child to me, but you know, eighteen, nineteen year olds in jail because

Bill Gasiamis (07:42)
Yeah, they yell.

Cassie (07:43)
they were using with a friend or something and they didn’t

know what they were getting themselves into.

Bill Gasiamis (07:47)
No, that’s perfectly fine. They’re children. in my mind as well, I know they’re technically an adult, but it’s such a small gap between childhood and adulthood when you’re eighteen. Like I

Cassie (08:01)
Yeah.

Bill Gasiamis (08:02)
mean, as if there’s a a year when it’s definitely an adult now. I know that the law is a little more kind of restri harsh on that definition, but

The truth

Cassie (08:15)
Yeah.

Bill Gasiamis (08:15)
is is this is very hard to kind of fit people into.

Cassie (08:18)
Their brains are still developing.

Bill Gasiamis (08:19)
Yeah, till twenty five or something, like many

Cassie (08:22)
Yeah.

Bill Gasiamis (08:23)
of the lobes haven’t come one of the lobes at least hasn’t come online. I think it’s the frontal lobe.

Cassie (08:27)
That I don’t know, but I’m sure

Bill Gasiamis (08:28)
Yeah.

Yeah. I might be wrong, but that’s okay. so life was pretty hectic, pretty full on, lots of work at home as well as at the office or in the jail. And then

Cassie (08:41)
Mm-hmm.

Bill Gasiamis (08:42)
how is that impacting kind of your just regular life in that switching off part, that doing things that you loved, or going out with your partner, or taking the dogs for a walk? How did it affect that part of it? Did it eat into that?

Cassie (08:57)
It did. I was not a great person to be around ’cause I was cranky all the time. I was tired all the time and thinking about work all the time. But I’ve always traveled and so I made a point to travel still. So I was still traveling the world. so that piece was good.

Bill Gasiamis (09:14)
Like the circuit breaker that you at least always did for a period of time. How long would those trips last?

Cassie (09:22)
I travel whenever I can, so sometimes it would be like a three day trip, sometimes it would be like a ten day trip.

Bill Gasiamis (09:29)
Uhhuh. So squeeze in whatever you can just to get out and about.

Cassie (09:32)
Mm-hmm.

Yep.

The Day of the Stroke

Bill Gasiamis (09:35)
So what happened on the day of the stroke? Do you have any recollection of that, any awareness of the lead up to that?

Cassie (09:43)
So I can tell you the story. There’s not like a anything that seemed to lead up to it. It was just living my life as normal. I had just gotten back from Iceland, but you know, like I said, that was travel was my norm. And

So this is still hard for me to talk about. This was like a horrible thing that happened to me. This is like sometimes I think it’s worse than the stroke. I don’t know.

If it is or not, but I was demoted from my position. And so this position is, you know, it’s everything. And then at the same time, it’s like the worst thing in the world because I’m so I’m overworked. I’m exhausted. I have a a manager who’s not supportive. And I could almost see it coming, but I was still still shocked and like.

I put my like everything into my career. Like that’s who I am. Like my entire identity was my career. And so being demoted was was is maybe the worst thing that has ever happened to me. And so that happened on a Wednesday and then the stroke happened on a Friday. So it was a very busy week for me. And I had gotten back from Iceland on a Monday. So it was in one week that all these things happened.

Bill Gasiamis (11:07)
Intense so you’re back at work after traveling, jet lag, you know, holiday mode, all those things. Then two days later you get called into the office, you get demoted from the role that you’re in into a different position. You take

Cassie (11:22)
Mm-hmm.

Bill Gasiamis (11:22)
a bad lib by the sound of things.

Cassie (11:25)
I think I was very professional when it happened but it was absolutely like devastating. It’s

Bill Gasiamis (11:31)
Yeah.

Cassie (11:32)
not something I talk about because it’s still like very painful.

Bill Gasiamis (11:35)
Raw.

Yeah. And then two days later, what happens on the Friday? How does that play out?

Cassie (11:43)
So it was Thursday night and I was I had just stayed up and been writing. I was working on a a book that I never ended up publishing, but it was a book that I was working on. And it was kind of like a well, let me show that I still matter, that I’m still worth something by I’m gonna write this book and so I was just driven by like spite and like my whatever, who knows.

So I hadn’t gone to sleep at all, and it’s Thursday night, and I’m still up and I’m still writing, and I’m drinking wine and I’m on the couch.

so leading up to it was the demotion, and had been traveling, and then I’m typing, and as I’m typing, like my left hand just stops working, and I didn’t think anything of it. I was like, that’s

Weird. This is weird. And I was like, I’m gonna go to bed. I’ve had too much to drink. And so like I get up and just kinda stumble to bed. And it’s not until the next morning, well it’s a afternoon by then, when I finally wake up or I get up and I know that something’s like wrong and I don’t know what’s wrong. I’m just like I can tell that something is off with me.

And I’m saying this to my partner. He’s like in the other room, but I’m still in bed. I’m like, something is wrong with me. Something is wrong with me. And I just keep on repeating that over and over again. And I couldn’t figure out what was wrong. And I was like, I decided that I was having a panic attack because I’m familiar with that. And it fit because I felt like I was dying, but I knew I wasn’t actually dying. And then I remembered, I was like, wait a minute. Last night was weird. That was weird. That thing happened. And so

I don’t call 911. I text my mom. And I’m like, mom, this happened to me. My mom is a nurse practitioner, so it makes sense that I texted her instead of calling 911. And she was like, Those are stroke symptoms. Call 911 now and ask me to take you to a stroke center or to a hospital with a stroke center. So my partner ends up calling. He makes the phone call. I don’t know what I’m doing at that point. And he’s like,

Yeah, maybe you should get ready. And I don’t know how I did because apparently I’m paralyzed on my left side. I don’t know when that actually s like settled in, but I was able to function enough until the ambulance arrived. And they’re like, Where’s the victim? Where’s the stroke victim? And I’m like, it’s it’s me. Cause I’m still standing, I answered the door and everything. But my

Bill Gasiamis (14:21)
Wow.

Cassie (14:24)
And I don’t know this of course, but like later I’m told one half of my face is drooping. So it was obvious, even though I’m still like walking and talking.

Bill Gasiamis (14:34)
And there

Cassie (14:34)
And I

had I had pictures of it, like how bad it was, like how pronounced it was, but I deleted them all because I’m very vain and I don’t want anybody to ever see how awful it looked.

Bill Gasiamis (14:44)
Wow.

Cassie (14:44)
Yeah.

Bill Gasiamis (14:45)
Do you prefer that you hadn’t deleted that now or are you happy that they’re gone?

Cassie (14:51)
I have there’s one picture left. Somebody else took the picture actually. And like looking back on it’s just I mean, I probably it probably would be good to have those pictures because I would be able to like remind myself of how far I’ve come, but it’s also like really d uncomfortable and disorienting to see yourself look like that. I don’t know if you

Bill Gasiamis (15:13)
Mm-hmm. Yeah.

Cassie (15:15)
if

you have that experience if there were pictures taken of you after your stroke.

Bill Gasiamis (15:20)
There was, not a lot of them, only because it wasn’t the first thing on our mind.

Cassie (15:26)
Mm-hmm.

Bill Gasiamis (15:27)
but I had pictures taken when I was in the rehab facility where w I was strapped in and I was attached to the ceiling and I was walking along trying to rehabilitate my leg

Cassie (15:39)
Mm-hmm.

Bill Gasiamis (15:40)
like like a marionette. so that’s about it. And I’ve got some pictures of my scar, which were pretty epic.

The surgery scar was pretty epic.

Cassie (15:52)
Yeah.

Bill Gasiamis (15:54)
and and then that’s about it. and they’re

Cassie (15:58)
So how do you feel

when you look at those pictures?

Bill Gasiamis (16:01)
The thing, Cassie, with me is I don’t relive the experience when I talk about it. Whereas I know people who have had something challenging happen to them that th when they’re re expi when they’re talking about it, it’s like they’re reliving it. So I kind of really understand why it’s difficult for them to talk about it or to see a photo.

And when I talk about that, there’s a disassociation with it. And it’s not a disassociation that I’ve made from the perspective of I don’t want to think or remember or etc. It’s just that I I’ve spoken about it so much that it’s like I’m telling a story about somebody else. Now,

Cassie (16:44)
Yeah, that’s healthy.

Bill Gasiamis (16:45)
yeah, it’s me, but it’s not really.

Cassie (16:48)
Right.

Bill Gasiamis (16:48)
I see the pictures, but it’s 12 years since brain surgery. Like I don’t connect me to that.

day, even though it’s definitely me and I have the deficits and I live with the, you know, injury and all the things that it did to me. Like, I don’t know, like I I don’t get triggered by in a negative way, but I understand when I’ve seen people talk about experiences that they get triggered by, it’s because they’re reliving it and that somehow they haven’t separated their current self to the the self that went through that part of the experience.

Cassie (17:25)
I also think that just the passage of time helps with it, like ’cause you’re so far removed from it. It’s

Bill Gasiamis (17:30)
Indeed.

Cassie (17:31)
like I believe that people change, like almost every decade we become new people. Not like every decade on the, you know, like at right at thirty and then forty, but like approximately every decade we become relatively

Bill Gasiamis (17:44)
Yeah.

Cassie (17:44)
different people than we were before. And so it’s like looking back

Bill Gasiamis (17:49)
I agree.

Cassie (17:49)
at a different person almost when you see that.

Bill Gasiamis (17:52)
I I agree. And a different person in many ways. Like not a podcaster, not an author, you know, not a speaker. a very different person, you know, and

That one that the person that I was was just basically a guy not dissimilar to what you described, just getting through, you know, like working as much as possible, at home, at work, too many hours, the phone always on, people reaching me any time of the day. It was mental. and it was the best time and the worst time. I’m gonna interrupt you for a second ’cause I’m expecting a phone call.

From my dad’s appointment at the hospital. One moment, please. Hello. Hey, is that Bill? Yes.

Yeah, he’s done with that injunction. He’s ready to be collected. Okay. well we’ll get there as soon as we can if that’s all right. Yeah, sure. Shouldn’t be too late. Okay, no worries. I’ll just organise someone. Thank you so much. Bye bye.

My dad had a little procedure.

Cassie (18:58)
Si okay.

Bill Gasiamis (18:59)
Yeah. And he just needs to get picked up.

And of course

I bet you’ve his grandson who was meant to pick him up has forgotten.

And we’ll edit all this out anyway, so

Let’s see what it says.

All right. let’s see what it says.

Awesome, he’s going now.

yeah, so as I was saying, so I

I I I put a lot of work into being a different person as well. Like that was important. I couldn’t be the same guy that came out of all of that stroke stuff because that guy was not heading in the right direction. He was gonna be unwell again. Right. And and what you said kind of reminds me of how I was. perfectionism might not have been my thing, but it was there was a thing, you know, that I

bought into that I needed to do that I couldn’t do any other way, that if it didn’t happen like that it was gonna be wrong. You know? And it was for me it was I can’t outsource it to anyone else because nobody’s ever gonna do what I do, how I do it, make the customer happy so we can get paid. It yeah, it’s kind of it kind

Cassie (20:08)
That’s perfectionism, maybe. In a sense.

Bill Gasiamis (20:11)
of is. Yeah. I see perfectionism in my wife differently ’cause she described what you described at her cause she’s a she’s studying and just finished her

masters in psychology. Yeah, and she does

Cassie (20:27)
good. It’s awesome.

Bill Gasiamis (20:28)
case notes and my gosh. It’s like you’ve done a day’s work. Yeah, I honestly like she does a day’s work. And then I’m like, how long did it does it need to take to do case notes after a day’s work? And she’s like, as long as it takes. And I’m like, Well, it as an outsider, somebody who doesn’t understand what you’re doing.

It seems like it’s taking way too long after the session with your client to d to do the case notes. It’s it’s what it seems like to me. And and she’s not denying it, but she is kind of saying, Well, I’m early on in my career and I have to make sure that the case notes are done well, et cetera. And I’m like, How have you ever compared them to other people’s case notes to know what’s good enough or acceptable?

And that’s kind of what I didn’t do either. Like I never understood that when you’re delivering a painting project to a client, ninety percent is good enough. If the client says it’s a pass, it’s a pass. And then you get paid. Trying to overdeliver to ensure payment, because I was concerned. I think it it was more for me, it was about getting paid rather than me being a stickler for perfection. It was about if I don’t do it.

To the client’s expectation, then I won’t get paid. And that was kind of what it was. But it’s a similar ailment, you know, like it gets in the way of spare time and hours for me to do something other than work, but I I didn’t know it at the time. It was just the way that it was.

Cassie (22:10)
Yeah. Well it’s hard to know when you’re in the middle of it also. And my partner would point it out like how insane I was being and I didn’t see it. Like I said at the time I just I didn’t well

Bill Gasiamis (22:26)
Yeah.

Cassie (22:27)
I did to an extent, but not enough to make me stop.

Bill Gasiamis (22:33)
Yeah. And you then have maybe the exit part of the loop. Like, where do I get off the loop? You know, like how do I jump out of here? I know he’s told me, and I know somebody else might have mentioned it. And I know I’m working too many hours, but like how do I get out of it? Like what’s the the exit? I get that too. That’s kind of how I was. The stroke became that for me. Is that how you kind of experienced your stroke afterwards? Was it a circuit breaker as well as this illness?

Aftermath and Recovery

Cassie (23:02)
Yeah, I feel like that, like the way you said it. Like I feel like I was literally burning myself to the ground, like I was burnt out and just wasn’t gonna stop and was gonna keep on going and going and going. And then my brain was like, Okay, we’ve had enough. We’re gonna stop you. And I had a stroke.

Bill Gasiamis (23:21)
Mm.

Cassie (23:22)
And they say that stress doesn’t directly cause strokes, like it contributes to it. But like I mentioned, like I’m pretty healthy.

And I was I’m forty three now. I was only forty two. And that’s not normal. Like it’s usually age sixty five and older that have the strokes. Definitely

Bill Gasiamis (23:42)
Yeah.

Cassie (23:42)
wasn’t expecting it.

Bill Gasiamis (23:44)
What kind of a stroke was it?

Cassie (23:46)
It was an ischemic stroke. It was a right hemisphere stroke in the basal ganglia, which I didn’t know what they were. I learned about it after my stroke.

Bill Gasiamis (23:55)
And did they have

Cassie (23:55)
They apparently do a

lot with like has to do with your motion and balance, but also emotional regulation, which that was a huge thing when I was recovering, like having to deal with emotions. You’d think as a therapist

Bill Gasiamis (24:10)
Just crying.

Cassie (24:11)
I would be good with it, but I’d prefer to deal with other people’s emotions, not my own.

Bill Gasiamis (24:16)
And you’re human as well, right? So yeah. Just because you

Cassie (24:17)
yeah, I forgot about that. Yes. That too.

Bill Gasiamis (24:20)
learnt about it doesn’t mean that you’re the epitome of the perfectly emotionally regulated human just because you learned about it or studied it.

Cassie (24:28)
Yeah, absolutely not.

Bill Gasiamis (24:31)
Yeah. and do they know what the underlying cause of the ischemic stroke was? Was there an underlying cause?

Cassie (24:40)
They still I have like a little heart thing in still. It’s they’re like, maybe it was AFib and I told my cardiologist I was like, it’s not, it’s stress. I know it was stress. And he was like, it might be AFib. We’re gonna still check for this. So it’s like it can stay in for up to four years. I don’t know when they’re gonna take it out. but so far no AFib, which kind of doesn’t mean that my theory is correct, but it seems more plausible that there was they can’t figure out

Anything else? I probably drank too much. I was drinking the night of my stroke, but they said that didn’t cause it.

Who knows? Combination of

Bill Gasiamis (25:16)
Hmm. What

Cassie (25:18)
alcohol and stress.

Bill Gasiamis (25:20)
Yeah. Or when you say you drink too much as in what are you doing, a bottle a day or just a couple of glasses or

Cassie (25:28)
So before my stroke I was probably drinking more than a bottle of wine a day.

Bill Gasiamis (25:33)
Okay. Yeah, that’s too much.

Cassie (25:34)
So that’s like

four to five drinks. And for women, you shouldn’t have more than one drink of alcohol per day.

Bill Gasiamis (25:43)
Yeah, it is too much for any person really. Yeah.

Cassie (25:46)
It is. That

was my way of coping with stress.

Bill Gasiamis (25:51)
Yeah, takes the edge off, right?

Cassie (25:53)
Yeah.

Bill Gasiamis (25:53)
Yeah. It’s not uncommon. Like it’s so many I’m not hearing anything new here, you know, like it’s

Cassie (26:00)
Yeah.

Bill Gasiamis (26:00)
we’re all the same pretty much everywhere. It doesn’t matter where you live. And everyone needs a way to cope. And sometimes the easiest thing is whatever’s at arm’s reach. And it could be for it could be a piece of bread. It could be a piece of you know, sweet cake or whatever, it could be alcohol. There’s so many ways that we

Cope and it’s really useful, especially if you can cope. Yeah. If you Yeah. Yeah. The problem

Cassie (26:25)
It works so well it just kills you at the same time.

Bill Gasiamis (26:30)
is it’s short lived coping and it’s not learning or teaching you how to cope ongoing and without it. And that’s the the challenge, right? Is how do we cope with that? I used to smoke. And I would tell you still today that I loved smoking. It was one of the most amazing, most enjoyable things to do.

It also came with alcohol and it came after a meal and it came with a coffee. Like all the things I loved to do happened together and smoking was one of them. And I’m sure, I’m certain it was, you know, the nicotine hit and all the things that you get from a cigarette, good, bad, were all contributing to my coping mechanism. But I also was creating the perfect storm for being unwell and

Cassie (27:17)
Right.

Bill Gasiamis (27:18)
stress at work,

Not enough me time, always thinking about the job, the phone always being on, all that kind of stuff. And then it’s like, okay, well, what do I need? What do I need? What do you I know what I need? I need another coffee and a cigarette. Let me go and grab one. That’s gonna make things better. And it did, like just for that small amount of time. But not enough to be use supportive or not enough to be healthy. It was not healthy, but that’s okay. I learnt and

I don’t do that anymore. I don’t smoke anymore. Although I love walking past people who are smoking.

Cassie (27:57)
That’s funny. I hate the smell of I think a lot of people do, the smell of cigarettes.

Bill Gasiamis (28:01)
Yeah.

I love the smell of cigarettes. Not in the ashtray part, just in the air, kind of wafting around. You know, there was nothing better than being at a really smoky club or whatever. I don’t like the smell in my clothes the next day. But I’m old enough that when we were smok when we were going out to nightclubs and dancing and all that kind stuff, smoking was still allowed indoors in Australia. Whereas now it’s not. it was so cool. man.

so how long did you end up in hospital for and how did you manage to deal with the deficits that it was causing before you went home?

Hospitalization and Rehabilitation Journey

Cassie (28:41)
So I was in the like the actual hospital, like in the hospital on the stroke unit for a week. And then they moved me to inpatient rehab for a little over a week. So altogether it was a little over two weeks, so not that long. I was paralyzed for about a week, although it’s crazy, I barely remember it. you’d think like something huge like that you would remember, but I just remember the doctors coming in and being like, Okay

pull on my hands, now push on my hands or do this, do that and like I just remember my left hand wasn’t working as well, but it didn’t it didn’t feel like being paralyzed, but I don’t guess I don’t know who would know what that feels like if you’ve never been paralyzed, or you wouldn’t

Bill Gasiamis (29:23)
Mm-hmm.

Cassie (29:24)
feel anything, I guess.

Bill Gasiamis (29:25)
Mm-hmm.

Cassie (29:26)
And I was able to walk, so my rehab wasn’t that like intensive. It was focusing on I had this weird like kind of like lean where I would like lean left and like veer off to the left. Like if there was nobody to direct me, I would have just like walked off into the walls.

so two weeks and then for a month I did like outpatient OT and PT. But I also like I took a look at my drinking and I was like, I need to stop drinking. And so I went to treatment like a month after my stroke, or it was like six weeks after my stroke. So that interrupted my OT and PT. But two weeks to answer your question about

two weeks in the hospital and in rehab, which was they

were basically the same thing. I was in a bed, an alarmed bed, because I was a fall risk.

Which was awful ’cause I’m super independent, so having that taken away from me was like I couldn’t I wasn’t even allowed to get up. I would get scolded like a naughty child when I did. It didn’t stop me from getting up, but I got some scoldings. The nurses I was not a favorite among the nurses, I suspect.

Bill Gasiamis (30:38)
Mm-hmm. Mm-hmm.

Yeah, they were looking up for you.

Yeah. They were they were looking out for you but they needed to get the point across as much as possible. I

I kinda get it, but yeah, it’s also not nice to be told you shouldn’t do something. but when you can’t do it and it’s a risk

to your health, then maybe it’s maybe it’s all right to be told don’t do that

in no uncertain terms.

Cassie (31:13)
They so they taught my partner how to like unarm the bed. And I have to give him credit here because I like begged him to teach me the trick to unarm it and he never did. Yeah. Which was I didn’t care for it at the time, but he realized that maybe I might hurt myself, so

Bill Gasiamis (31:26)
Ha ha ha.

Cassie (31:35)
didn’t let me have my way on that.

Bill Gasiamis (31:38)
I’m gonna have to interrupt us again, my dad’s calling.

Cassie (31:41)
Okay.

Bill Gasiamis (31:44)
I don’t like cancelling appointments when we’ve made a a appointment for a podcast. So anyhow I’ll get this

Dissociation and Identity Post-Stroke

Bill Gasiamis (32:03)
to that.

Bill Gasiamis (32:12)
Is

He’s just went in for a little procedure where they injected some cortisol into his back ’cause he’s got some pain. And they put him under so they need him to be picked up. And he’s getting picked up, but he just doesn’t know it and w now

we’re going backwards and forwards between

between us and the nurses, but I did tell

him and he does know but he’s eighty two and he doesn’t listen. If he rings back I’ll just interrupt us again. I’m so sorry.

Cassie (32:46)
No, it’s fine.

Bill Gasiamis (32:49)
so

Your

time in

hospital other than being scolded. How do you come to terms with what has happened? Do you come to terms with it? Are you thinking about what this means for you now?

Cassie (33:06)
Not once. It didn’t even cross my mind. My world like when I look back on it, like my world shrank just to like the hospital bed in the room that I was in. And it just that was the only thing that existed. I didn’t think about, well, how is this gonna impact me long term? Am I gonna be able to go back to work? Like they gave me they told me I couldn’t go back for four months. But I actually tried to go back to work. I was

Bill Gasiamis (33:19)
at work,

Cassie (33:34)
working overtime, I was also working at a different

location, doing like some overnight shifts. And the day after my stroke I tried to go to work. I was going to just go

and not tell anybody and then come back. But they found out my mom was there. She found out. She’s like, Cassie, you can’t you can’t go. You can’t work. You can’t even walk. And I was like, I mostly would just sit at a desk. It should be fine. I’m sure it will be fine. That was kind of my

motto the entire time, like,

it’s fine, it’s gonna be fine, even though it clearly, you know, wasn’t fine.

Bill Gasiamis (34:09)
just there was that stroke

brain? N like normal Cassie wouldn’t do that. You would know not to do that normally,

would wouldn’t you? Like somebody is unwell, that’s not what we do when we’re unwell. Or was it just

Cassie (34:21)
I don’t

Bill Gasiamis (34:21)
the stroke playing up on you?

Cassie (34:24)
So it’s both. Like I didn’t feel unwell for one

thing. Like I felt or I thought that I was normal. I thought I was still myself then. But then with right brain stroke especially, there’s I forget the word for it, but you become overconfident in your abilities and you think

that you can do things that you can’t do. And so

Bill Gasiamis (34:47)
Wow.

Cassie (34:47)
that was a part of it too. I do you know the word for that?

Bill Gasiamis (34:51)
I don’t.

Cassie (34:52)
There’s like a very specific word for it. It also happens to people with severe mental illness where they think that they’re okay when they’re not. But it’s specific to right

brainstroke. And so I thought it was fine. And then also like me, I’m pretty stubborn and think

Bill Gasiamis (35:06)
Yeah.

Cassie (35:13)
I know better than doctors. So there was that too.

Bill Gasiamis (35:20)
I’m gonna check what it is. I wonder if I can ask Chat GPT what it is, w what is it when somebody’s overconfident after a brain injury or a

stroke, right? Is that’s kind of what the search will be. Let’s see what

Cassie (35:32)
Probably starts

with an A.

Bill Gasiamis (35:36)
wonder what Chat GPT’s got to say about it. Yeah.

Cassie (35:39)
But it’s being completely unaware of your

Bill Gasiamis (35:44)
Anosognosia. Anosognosia. It’s a Greek word by the sound of it. from my background. And it is the

Cassie (35:45)
That sounds familiar.

Bill Gasiamis (36:00)
Anosognosia is impaired awareness of one’s neurological deficits following brain injury or a stroke. A person may genuinely not recognize or may substantially underestimate.

their problems with movement, cognition, communication, behavior, or other abilities. Does that sound like it was your thing? Yeah, wow.

Cassie (36:19)
That’s exactly what it was. And

But then that kind of like followed me after

my stroke. Like I was like, wait a minute, am I completely like disabled and I just have no idea? Like so that was difficult. That piece of it, like where I felt like I was doing okay. I mean I was walking and talking still, you know, after my stroke.

Bill Gasiamis (36:37)
Mm-hmm.

See?

So you have cognitive awareness of the deficit, but yet the deficit still plays out. This overconfidence

in your ability still played out, but you’re still kind of have awareness of it somehow.

Cassie (37:06)
Yeah, but I don’t know like to this day, like I don’t know, maybe I was completely not functioning at all and I have a memory that I was, who knows. It’s really weird, it kinda messes with your head.

Bill Gasiamis (37:18)
Yeah. How we it is it’s so weird. I know. I I remember being in all s sort of weird

out of brain spaces and experiences and trying to work out w is this actually happening or am I imagining this happening? Is this reality or is it a dream? Like what is it? had a lot of those moments and then people observing me doing that was the most interesting part ’cause then I had to explain to them what I

Cassie (37:35)
Yeah.

Bill Gasiamis (37:47)
what I was ha happening to me and I was like I was unable to even you know verbalize that like how do I explain that to them when I don’t even know what’s going on. It was just really freaky. and then you ended up going home at some point

and what was that like? What was the transition from rehab and care like when you ended up home? How do you

manage that?

Life After Stroke: Adjusting to New Realities

Cassie (38:12)
It was really underwhelming. Like I had to

do training beforehand. They’re like, Okay, you have to learn how to get in and out of the shower and in and out of a car. So I had to do like training for that, which was silly because

Well, like I said, I thought I was functioning fine. But I’ve never fallen once, not once, which I think says that maybe I was functioning to

an extent. The physical disability was never really that big of an issue. It was more like the the cognitive stuff and then like the emotional piece. That was what was my big struggle. But yeah, they

I had to they had to put

me in a wheelchair to leave the hospital, even though I insisted I was fine. They were like, No, we don’t just let people get up and go, you have to do this. So they wheeled me out and my sister picked me up and took me home and that was it. And then I was home and I expected life to go back to normal, but it did not.

Like that was probably I guess being

home was like the wake up call when I was like, my life is gonna be different now. Very different.

Bill Gasiamis (39:25)
Yeah. Cybering.

Cassie (39:28)
Exactly.

Bill Gasiamis (39:30)
Hm. You weren’t working. Were you allowed to drive or go out and about were you up to that?

Cassie (39:36)
You know what? I was really, really, really tired for I’m still tired all the time, but like so I wasn’t like really up to doing anything. I wasn’t allowed to drive for six months, but I did. I got into an accident, I think, my first my first day behind the wheel. It was just a tiny little accident. I just tapped somebody’s bumper and they got very upset about it. They were overreacting, I think.

Bill Gasiamis (40:07)
People tend to do that with car.

Cassie (40:09)
They

do.

Bill Gasiamis (40:10)
Yeah. I don’t know why.

Cassie (40:12)
Yeah, she was upset.

Bill Gasiamis (40:14)
you wouldn’t it how how we act in a car when we’re in the car, when somebody

Cassie (40:21)
Mm-hmm.

Bill Gasiamis (40:22)
does something minor on the road, we would never act outside of the car in the real world in public when somebody crossed our

Cassie (40:29)
Yeah.

Bill Gasiamis (40:30)
path or bumped into us or whatever. It’s just strange what happens when people get in a car. Yeah.

Cassie (40:34)
wild. Same thing online,

people act w in ways they never would in real life.

Bill Gasiamis (40:40)
Yeah, it’s a little bubble of false sort of bravado or security or something, I don’t know what,

and people just change their behavior. I’ve become aware of that recently and I’ve made a massive effort to not be that way. And I did a lot of work around actually not

reacting when I’m in the car to

Cassie (41:00)
That’s amazing.

Bill Gasiamis (41:01)
yeah, incidences that are so insignificant because every time you drive

there is an insignificant incident and if you’re just freaking out about it all the time, all you’re doing is making yourself unwell. It’s just another negative

Cassie (41:13)
Yeah.

Bill Gasiamis (41:13)
thing that you do, right? So I’ve made a concerted

effort about a year ago to make sure that I do not react by yelling and screaming to people in a car when they’re just driving on the road. I’m doing exactly the same thing. I don’t know where I get off being the guy.

who thinks that my driving is so much better that that I I am if within my rights to be aggressive or act out or yelling or screaming at the person

in the other car who actually can’t hear me anyway and doesn’t even know what they did wrong.

Cassie (41:56)
That’s so one thing that like I could be a bit of a jerk before when driving. Not that anybody would know. I was just in my car yelling and cursing, but you know But since the stroke I’ve actually I have more patience because I’m much I’m slower and that’s just in like life in general, but also behind the wheel. I’m I’m much slower. And

Bill Gasiamis (42:07)
Yeah.

Cassie (42:21)
so then when somebody starts tailing me, I get super frustrated with it, but I’m like

when I think somebody’s going too slow, now I’m like, Well, there’s probably a reason for that so I can chill and just drive slow. I probably need to anyway. So

Bill Gasiamis (42:36)
awareness, yeah. Like it’s like maybe they’re recovering from something, maybe they’re just more careful. Maybe they have a you know, more more kind of anxiousness about them and they want to make sure that they’re paying more attention, you know, it’s

all all sorts of things going on. And judging people without having any idea was s so getting in the way of my just five minute trip down the road, you know, to pick up something. What’s the point of going for a drive and being angry for no reason? Like it’s ridiculous.

Cassie (43:05)
Yeah. The wild thing is is I had all these skills before my stroke. Like I could have I’m a therapist, you know. I understand these things. I empathize with people, but I would get so mad at other drivers. But now I

I’m just like, somebody they’re probably like me. And that’s in not just

in driving, in like all areas of my life. I’m more empathetic. I think I’m a better therapist in some ways. I’m not as

sharp as I was before, but I think I’m kinder.

Bill Gasiamis (43:40)
You have more insight.

Cassie (43:42)
More insight, yes, for sure.

Bill Gasiamis (43:43)
more life experience.

Cassie (43:47)
Yeah. Exactly.

Bill Gasiamis (43:50)
Yeah. so did you kind of find a way back to work? Are you working again?

Cassie (44:00)
I’m working I’m

working at a very different like paced job. I’m doing

intake assessments now, so it’s

Bill Gasiamis (44:08)
manage to deal with the deficits that it was causing before you went home?

Cassie (44:12)
I get more like FaceTime, which is nice, but it’s also it’s not a very challenging job. And before it was the work was very challenging. So it’s different pace of life. But I’m back to work. I’m working full time.

And then I see clients on the side and my and it’s not my practice, it’s a group practice, so private practice clients too.

Bill Gasiamis (44:36)
Sounds like it’s more alig aligned with the whole intention of becoming a counsellor, a therapist, like at the beginning.

Cassie (44:42)
Yeah.

Bill Gasiamis (44:44)
Yeah. Less statistically based and more client focused.

Cassie (44:49)
Yeah.

I do miss the population ’cause like I really liked working with the inmates. But

Bill Gasiamis (44:55)
Yeah.

Cassie (44:56)
I just I wouldn’t go back into that environment.

Bill Gasiamis (45:00)
Yeah. E especially when you’re you know, the people you’re reporting to are also maybe, you know, a bit difficult to handle as well or highly, you know, tense or whatever. They’re we’ve got to also understand like they’re living in a environment where they’re working in a jail as well and God knows

Cassie (45:18)
Yes.

Bill Gasiamis (45:19)
what they’re dealing with and putting up with as well and how they’re able to personally manage it. And if everyone’s kind of dysfunctional, you wanna not

Cassie (45:27)
Mm.

Bill Gasiamis (45:28)
be there, even though

that’s where people are needed, you need to kind of do your time and get out.

Cassie (45:35)
Yeah.

Bill Gasiamis (45:36)
’cause ongoing dysfunction just becomes traumatic for everybody who’s involved, even though you’re going there to do good work, you’re coming out and then you’re not well, you’re not healthy, and it leads to illness and what’s the point of that? your website is cassiejewell.com and there’s a couple of things on there that you talk about and promote and

There’s a very cool photo of you on the home page. Like I love that photo. It’s

Cassie (46:03)
Hello, thanks.

Bill Gasiamis (46:05)
so cool. and it says Cassie Jewell is a counselor and an author exploring psychology of change, resilience, regret, and identity.

Cassie (46:14)
Mm-hmm.

Bill Gasiamis (46:15)
Change, resilience, regret, and identity. Huge.

Cassie (46:18)
That’s all from my stroke.

Bill Gasiamis (46:20)
Huge words. Okay. I was gonna ask you whether that may have been on there previously or whether that is the new thing that you’re interested in.

Cassie (46:28)
That is something I’ve definitely focused on more since the stroke, especially identity. because before I identified just completely like with my career, or more so with my job, not my career, but my job. But that I was just completely wrapped up in that. And now I’ve had to well, I went through I had another job

when I first started back to work, that didn’t work out. It’s ’cause I’m not as competent as I used to be. It’s really hard. I’m still dealing with that. But when you measure your self-worth in the things that you do, like in your career, and then all of a sudden you don’t have your career anymore, who are you? I had to figure that out. And I like who I am now. I think

Or I I don’t know if I’m the same person or if I’m a different person. It’s hard to gauge that. I think I it took me some time, but I think I finally just adjusted to who I am now and I’m choosing to like who I am now. I’m a

Bill Gasiamis (47:37)
Yeah.

Cassie (47:37)
different person, probably, but I’m the only you know, this brain is the only one I’ve got, so I might as well invest in it and like it. Don’t

Bill Gasiamis (47:47)
Yeah.

Cassie (47:48)
have any other choice.

Bill Gasiamis (47:50)
No. and yet i your

your identity, like do you i if I was to ask you what it is or how would you like what how do you identify? Like how can do you have a elevator pitch? Can you say that to to me now?

Cassie (48:10)
I do not

have an elevator pitch. I have no idea. I don’t know how to describe it. I just I know more what I’m not and I’m not driven by work. Like I value free time more in my personal life and my loved ones, my dogs. I don’t have kids, I have dogs. They’re my kids.

Bill Gasiamis (48:30)
Yeah.

Yep.

Cassie (48:34)
and like I would be okay if I didn’t have my career. I would still know who I was without my career. Where before I didn’t, and so losing that was like losing everything. That’s why the stroke hit so hard is because I lost I lost my career and myself at the same time, almost my life, but it was more the losing of like my identity and so

My new identity is part like having lost that I’m no longer that career woman that I was and then also who I am since the stroke. So

Bill Gasiamis (49:11)
Mm-hmm.

When I was younger, I didn’t have an opportunity to work out my identity. I just got stuck into the tasks that I needed to do.

Cassie (49:21)
Mm-hmm.

Bill Gasiamis (49:21)
To pay the bills, to feed the kids, to put through school, to pay the mortgage, to do all that stuff. And it was never a conversation like, how do I who am I, who do I identify as? Or if somebody asked me the question, I wouldn’t even know what it meant. Like they’d what are you talking about? Like, I just go to work and I do all these things.

You know, but beyond what you do, who are you? That’s such a bizarre thing to have to contemplate. I think that’s what I found difficult about it as well, was that not only did I lose all those things that I did who I thought I was, I actually didn’t have the vocabulary or the insight about the topic or anything. I had nothing. And I’m starting from completely scratch. And that would have been the hardest question in the world for somebody to ask.

Now I stumbled into identity loss and all that kind of stuff just by interviewing people and realizing that other people are going through that and they had a word for it. But before that, if I if I was asked, I wouldn’t have a clue how to begin a conversation with that. I wouldn’t be able to get off telling somebody that I was a business owner and I was a dad and it was all about other people.

Cassie (50:35)
Do you feel like

did it take you a long time to like yourself, like your new self after the stroke?

How Stroke Forced Me to Discover Who I Really Am

Bill Gasiamis (50:42)
A a few years, yeah. I think I realized

Cassie (50:44)
Few years.

Bill Gasiamis (50:45)
that so my whole thing started in twenty twelve and then out I was at home out of surgery in twenty in December twenty fourteen. And then I was at home alone from late December twenty fourteen for the first five or six months of the following year, twenty fifteen. Twenty fifteen, around twenty fifteen is when I started the podcast, but there was only a few episodes.

And they were intermittent and I wasn’t well. I had fatigue. I was dealing with and all the things. And then by around early 2016, maybe middle of the year, something like that, would have been the first time when I said, I think stroke was the best thing that happened to me. And and it you know what why I said that. It wasn’t because I I loved the experience of being unwell, nearly dying, brain surgery, all of that. It’s because I realized that I had grown as a person.

And that my identity had shifted from somebody who was caught up in all the labels and all of the what is it like all of the barriers that I put up in between, you know, from in my own way that I created in my own mind about myself. And then I realized I was on a podcast interview and I said that with the the person who I was interviewing. I think stroke’s the best thing that happened to me, and they said the same thing back. And then it’s like, wow, how did you get here?

And I realized how I got there was I how I was speaking on a stage, sharing information about stroke awareness. I was meeting stroke survivors who I really got along with and we understood each other and we were able to appreciate what what both of us had been through. I felt understood for the first time. you know, so I was doing all these things that were different that were actually bringing a different kind of joy into my life.

Cassie (52:36)
Yeah, fulfillment meaning.

Bill Gasiamis (52:37)
Yeah. Purpose,

meaning. And I never knew those things existed before that. I didn’t know that my purpose and meaning needed to be refined and it shouldn’t have been about making as much money as possible as quickly as possible. Because apparently my kids needed the new pair of sneakers or, you know, the new console or whatever it was that they needed. And I thought I should work harder to make possible for them. So yeah, it was

Cassie (53:08)
I think it kind

Bill Gasiamis (53:08)
Unbelievable.

Cassie (53:09)
of I’m thinking about it now, like it strips away everything else so you have nothing left but yourself and you have to take a look at yourself and then that’s when you can really decide who am I and am I gonna choose to like this person? And you can also choose what your new identity is gonna be. Yeah.

Bill Gasiamis (53:28)
That’s the best part about it. Choice.

I never had that before. Well, I did, but I didn’t think I did.

Cassie (53:35)
Right.

Bill Gasiamis (53:36)
I did what my parents told me to do. I did what other people told me to do. I never did what I wanted to do. I was always doing stuff that I’d been trained my entire life to do. You know, you go to school, d do X amount of hours Monday to Friday for your primary years and then your secondary years doing a certain amount of hours. 13 years later, you’re spat out. And it’s like, okay, what else do you guys want me to do?

Okay, I’ll just do that. And I envy

Maybe envy’s not the word ’cause it’s a little bit harsh, but I I kind of I maybe it is envy and jealousy. Like of people who were twenty or eighteen or nineteen and knew what they wanted to do somehow. And they just went and did it. Now I know they’ve got their own issues and they’re probably struggling in other ways. Yeah. Maybe maybe.

Cassie (54:20)
They probably didn’t know. I don’t think anybody does.

I think you have to have something like a stroke happen to you to really know what you want and to be able to have this different perspective on life. So I get how like it can be it can be the worst thing that’s happened to you and the best thing that’s happened to you at the same time because it’s not about the stroke. It’s about okay, what am I gonna choose to do now? And you can do anything.

Bill Gasiamis (54:48)
Yeah. And that was

Cassie (54:49)
And that’s amazing.

Bill Gasiamis (54:51)
such a gift.

Cassie (54:52)
Yeah.

Bill Gasiamis (54:53)
And it came from this

Crappy path, like whatever. Like such a massive, difficult thing. I have a couple of people who I coach through stroke recovery and whatever. Like I I’m not not not in a doctor way, just like we talk about things that they perhaps don’t get to talk about with other people who are not stroke survivors, right? And one of the things that really happened to me recently was the person who I’m coaching at the moment just came on on board, signed up, and their first session.

The person’s still in rehab. And they’re very emotional and it’s very challenging and very difficult. And it’s so fresh between having gone from their regular life to what their life looks like now.

Cassie (55:37)
Yeah.

Bill Gasiamis (55:38)
And that was in my mind a little bit triggering in that, I had forgotten that feeling. Now I remember what that was like. And then it’s trying to keep somebody in a space of remain calm, you know, be

What Bruce Lee used to say, you know, be the boat on the wave, you know, like just go with the flow and all that kind of stuff. And it’s the time to practice all those things, but it’s also the most difficult time to practice all those things because you’ve had a stroke and your brain is not working optimally and you know, there’s yeah.

Cassie (56:12)
It’s so traumatic and like it’s great too.

Bill Gasiamis (56:15)
It’s traumatic, it’s grief, it’s identity, it’s loss, it’s everything all together, all in one lump sum. And then I’m thinking, okay.

What I know about this person is that it will be better in twelve months time, but how do I how do I impart that s that knowledge, that feeling, that state now onto that person then I can’t. Like they have to go through the next twelve month journey to get there themselves. And maybe all I can do is just plant a seed just to say, look, it might be all right in in twelve months. I don’t know what all right means, but it might be all right.

Hard, difficult, challenging, all those things, but still okay, you know.

It’s fascinating complex topic to wrap your head around and talk about and investigate it. I’ve been doing it for more than four hundred interviews and it’s I’m still not there. I don’t think I’ll ever get there. And conversations like this with you kind of make

just, you know, like they just get me going. They they I just love it because again, you know, here we’ve never I’ve I’d never contemplated stuff like this before. It was out of sight, out of mind. And I think I wasn’t I’m richer for it now where I wasn’t before.

Cassie (57:31)
Yeah,

I like that word. You said richer.

Bill Gasiamis (57:34)
Yeah.

So how do you see the next few months happening for you now? How do you see them kind of how do you see yourself moving through the next few months and evolving?

Cassie (57:47)
I

same way that I’ve been going, it’s just moving forward and

all you can do. And some days suck. And some days there’s like a whole new thing that happens that I was like that I’m like, how is this happening to me? I never experienced this before. I don’t know, I just live my life.

Bill Gasiamis (58:10)
That’s all you can

Cassie (58:10)
But I

Bill Gasiamis (58:11)
do.

Cassie (58:12)
I do think about things a lot more than I used to.

Bill Gasiamis (58:15)
In a contemplative type

Cassie (58:15)
And how.

Bill Gasiamis (58:16)
of way.

Cassie (58:17)
Hmm. There’s a really cool book that I’m reading. It’s called

It’s something about time management for mortals or something like that, but it the concept is about like time management, but it’s not what we think it is. It’s not about like managing your time to be more productive. It’s about living your life to the fullest and how do you want to do that and how can you do that? Have you heard of the book? It’s

Bill Gasiamis (58:41)
I haven’t, but it sounds like a great book.

Cassie (58:44)
four I think it’s called four thousand weeks or two thousand weeks. ‘Cause we live

Bill Gasiamis (58:48)
okay.

Cassie (58:49)
we only live for X amount of weeks and it’s either four thousand or two thousand one of those.

Bill Gasiamis (58:56)
I’m gonna check it up while we’re here as well. So we can let people know who are listening in case they’re interested. So

Cassie (59:03)
And I’ve only gotten into the first couple of chapters, so hopefully it’s a good book actually.

But so far so good.

Bill Gasiamis (59:10)
It’s amazing how

Yeah, four thousand weeks, time management by mortals by Oliver Berkman. Okay.

Cassie (59:17)
Yeah. So if you live to

be eighty, you only have that many weeks in your life to to live. So how do you want to live them, you know? And

Bill Gasiamis (59:27)
Yeah.

Cassie (59:27)
that’s something that us anybody who survived a stroke ha already thinks that way ’cause you’re like, I you know, I may not have that many left. Who knows? I barely got this many and I’m lucky to have had this many and how do I want to live my next week and my next week? I want to travel as much as possible.

There are a hundred and ninety five countries in the world and I wanna travel to all of them before I die. So

Bill Gasiamis (59:53)
That’s great thing to aim for. How many have you been to so far?

Cassie (59:58)
Just thirty five.

Bill Gasiamis (1:00:00)
Just thirty five.

Cassie (1:00:01)
Most Americans have only been a lot of Americans haven’t even left the country. But it’s I’ve traveled more than most Americans at least.

Bill Gasiamis (1:00:13)
Yeah, thirty five countries, that’s a lot of places. You’ve done well to squeeze in thirty five. I don’t think I’ve been beyond maybe five or six and it’s not a competition, but I never thought about it the way that you think about it, you know.

Cassie (1:00:28)
It’s kind of like a personal bucket list.

Bill Gasiamis (1:00:31)
Mm.

Cassie (1:00:32)
And I love it too. I love traveling. I love everything about

Bill Gasiamis (1:00:36)
Does

Cassie (1:00:36)
it.

Bill Gasiamis (1:00:37)
does your partner like travelling with you?

Cassie (1:00:41)
He does. He’s

Bill Gasiamis (1:00:42)
Yeah, that’s cool.

Cassie (1:00:43)
not as obsessed as I am with travel, but he loves it.

Bill Gasiamis (1:00:47)
Yeah. So does he let you organize it all and then it just he tag along?

Cassie (1:00:52)
Mm-hmm. Exactly.

Bill Gasiamis (1:00:54)
That’s the best. That’s the best kind of partner. w this is where we’re going next year. Okay, cool. Organise it and I’ll be there. I’d love that.

Cassie (1:01:02)
Yeah. And I

love to plan things and he loves to show up for things, so it works perfectly.

Bill Gasiamis (1:01:09)
That’s awesome. And the dogs, what about the dogs? Who cares for them when you guys are gone?

Cassie (1:01:13)
My friend’s niece will come and stay at the house and take care of them.

Bill Gasiamis (1:01:18)
brilliant.

Cassie (1:01:19)
Mm-hmm. So they’re in good hands.

Bill Gasiamis (1:01:21)
That sounds like

that sounds like the perfect plan. Cassie, I really appreciate you reaching out and sharing your story on the podcast. I think it’s very important that stroke survivors do that. A share their story for themselves, like there’s a lot to gain, but also your insights from a stroke survivor and a psychological perspective, just because of the work that you did is really unique and it’s cool to hear. And

This is gonna sound weird, but I love that I have a person who’s a therapist, psychologist on the podcast.

Cassie (1:01:56)
Yeah.

Bill Gasiamis (1:01:57)
I I know that the only way for them to get here is to have a stroke and to talk about their experience

Cassie (1:02:01)
Ha ha.

Bill Gasiamis (1:02:02)
and that’s not the part that I love, but I love that you’re on here and that we had that conversation, that we shared it and hopefully people get a lot out of it.

Cassie (1:02:09)
Hopefully.

Bill Gasiamis (1:02:11)
Thanks for joining me.

Cassie (1:02:12)
Thank you.

The Dual Nature of Stroke Experiences

Bill Gasiamis (1:02:14)
Well, that’s it for another episode of the Recovery After Stroke Podcast. A massive thank you to Cassie for joining me on the show and sharing the hardest weeks of her life and for bringing a therapist’s insight into a survivor’s experience. The line I keep coming back to is a stroke can be the worst thing and the best thing at the same time. Because it’s not about the stroke, it’s about what you choose to do next. You can find Cassie at Cassie Jewell.com.

And if identity after stroke is something you’re working through, go back and listen to my conversation with Adam Wolfers, who describes the same collision between who he was and who he is now.

Picture one person in your life who has lost a part of themselves recently through a stroke, a job, or anything else, and send them this episode today. If you want to explore your own path to post-traumatic growth after stroke, grab a copy of my book, The Unexpected Way That a Stroke Became the Best Thing That Happened. It is available at recovery after stroke.com/slash book.

and if you’re working out who you are after a stroke and you’d like someone in your corner, I offer one-on-one coaching built on my own lived experience. It isn’t therapy or medical treatment; it’s support from someone who has been there. Find out more at recoveryafterstroke.com/momentum. I’m Bill Gasiamis.

Remember to be kind to the person you’re becoming, and I’ll see you in the next episode.

 

The post Losing My Career and Myself, Then Choosing Who I’d Be – Cassie Jewell appeared first on Recovery After Stroke.

Stroke With No Warning Signs: What Tom Ballo Wants Every Survivor to Know

Tom Ballo was 65 years old, nine years into a retirement he’d earned across three decades as a telecoms litigator, when a massive hemorrhagic stroke put him on the floor of his own home. There was no dizziness the week before, no slurred word he brushed off, no doctor’s visit he postponed. “It just hit me out of the blue,” he says. “There were no warning signs or anything. No. Very sudden.” His five-year-old granddaughter was the one who found him, ran to get her father, and called 911.

That single fact- a stroke with no warning signs is the hardest one for a survivor’s family to sit with, and it’s the reason Tom’s story matters. We’re trained to look for a prodrome: the TIA that precedes the “real” event, the slurred speech, the drooping face, the classic FAST checklist. Those signs save lives when they’re present. But a meaningful share of hemorrhagic strokes, including Tom’s, give no such courtesy. Understanding this isn’t about inducing fear; it’s about removing the false comfort of “I’d definitely see it coming,” which quietly stops people from taking risk factors seriously simply because they feel fine right now.

Eighteen Months Later: “I Had Like One Bad Day”

What makes Tom an unusual guest isn’t just the suddenness of his stroke — it’s what he says about the recovery. Eighteen months out, he offers a claim that stops most interviewers in their tracks: “Ever since I had the stroke, as far as bad days, I had like one. One bad day, I guess.” For a show built around the long, uneven work of recovery, that’s either the most useful sentence a newly diagnosed survivor will hear all year, or the most worth interrogating. We chose not to resolve that tension neatly, because Tom doesn’t either — and that honesty is more useful to you than a tidy takeaway would be.

“Ever since I had the stroke, as far as bad days, I had like one. One bad day, I guess.” — Tom Ballo

Part of what underwrites his outlook is a framework he leaned on well before the stroke: self-actualisation, drawn from Abraham Maslow’s 1943 hierarchy of needs. Tom describes himself as someone who had already done the internal work of knowing who he was — a foundation he credits with much of his composure now. It’s worth a caveat here for accuracy: Maslow’s hierarchy is a theory of motivation, not a diagnostic instrument, and there’s no validated test that certifies someone “self-actualised.” What Tom is really describing is a stable sense of identity going into the hardest thing that ever happened to him — and that’s a legitimate, replicable idea, whether or not you use Maslow’s language for it.

The Part That Doesn’t Get Easier

“One bad day” is not the same as “no hard days,” and the interview doesn’t pretend otherwise. Tom is candid that spasticity the stiffness and involuntary muscle tightness that often follows a hemorrhagic stroke is getting worse, not better, as he moves further from the event. This is a pattern a lot of survivors will recognise, and few outsiders expect: the assumption is that time only heals, when in practice some deficits plateau, some improve, and some, like spasticity, can progress. If you’re eighteen months, three years, five years out and still watching a symptom evolve, Tom’s experience is a useful, unglamorous data point that you are not doing recovery wrong.

There’s a quieter data point too, and it cuts the other way: Tom says he hasn’t had a bad night’s sleep since the day of the stroke. For an audience where post-stroke fatigue and insomnia are close to universal, that’s a genuine outlier worth naming precisely because it complicates any single story about what stroke recovery “typically” looks like.

What Changed at Home

The practical texture of Tom’s recovery runs through his family: the granddaughter who acted fast, the wife who stepped in to run the household during the hardest stretch, the shift from being the one who handled everything to being the one who’s learned, in his words, that “it’s kind of a blessing” to do less. He’s candid that he hasn’t driven since the stroke and says he doesn’t feel a pull to change that. There’s no performance of getting back to “normal” here — just an honest account of a life that reorganised itself around new limits, some of which he’s made peace with and some of which, like the spasticity, he’s still working out how to hold.

Why This Story Is Worth Sitting With

If you came to this looking for a checklist of warning signs, Tom’s story won’t give you one, and that’s the point. Some strokes, including major hemorrhagic ones, arrive without a warning a person could reasonably have caught. What you can control is what happens after: how quickly the people around you act (his granddaughter didn’t hesitate), how you rebuild a working identity in the aftermath, and how honestly you track what’s actually getting better versus what’s quietly getting harder. Tom’s “one bad day” isn’t a promise you’ll get the same outcome. It’s permission to notice what’s still working, even while something else spasticity, driving, the parts of independence you used to take for granted hasn’t resolved yet.

If Tom’s story raises questions about your own recovery, or a loved one’s, that’s exactly the conversation this show exists to have. You can go deeper into the ideas behind post-traumatic growth after stroke in Bill’s book, The Unexpected Way That A Stroke Became The Best Thing That Happened (recoveryafterstroke.com/book), and if this kind of interview is valuable to you, the show runs in part on listener support at patreon.com/recoveryafterstroke.

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

Stroke With No Warning Signs – Tom Ballo’s One Bad Day in Eighteen Months

He had zero warning signs before his stroke at 65. Eighteen months later, Tom Ballo says he’s had exactly one bad day.

Highlights:

00:00 Stroke with no warning signs
03:25 What kind of stroke was it
08:18 Learning to talk and walk again
11:42 Does he have aphasia?
17:46 One bad day in eighteen months
27:15 The symptom that’s getting worse
33:20 The one thing that hasn’t changed

Transcript:

Stroke with no warning signs

Tom Ballo (00:00)
it just hit me out of the blue. It hit me out of the blue. There were no warning signs or anything. No.

very sudden.

luckily, my youngest granddaughter was there. My young granddaughter, she was five years old.

She was there and I guess she saw me and she went and got her dad, who’s my son-in-law. They were living with us.

At the time we had a big house and he told him, she told him and he came down and called 911 right away.

Bill Gasiamis (00:39)
Welcome back to Recovery After Stroke. I’m Bill Garciamas, and today’s guest is a genuinely different kind of conversation for the show. Tom Ballo spent 32 years as a telecoms litigator, retired at 56 to actually enjoy it, and nine years later, at 65, a massive hemorrhagic stroke hit him with absolutely no warning. His five-year-old granddaughter is the one who found him and got help.

What you’re about to hear is a conversation that moves differently than most on this show. Tom takes his time, getting to his words, and there’s a real compassion and openness in the way he talks about what happened to him. No performance, no polish. Just the man being honest about where he’s landed 18 months on. Stay with the pace of it. That pace is part of what he’s telling you.

We’re going to get into what he calls one bad day in 18 months,

what’s actually gotten harder rather than easier, and what he’s learnt about who he already was before any of this happened. Remember to grab a copy of my book, The Unexpected Way That a Stroke Became the Best.

thing that happened at recoveryafterstroke.com/book It’s the 10 tools I used to build my own recovery. And a lot of what Tom describes today connects straight back to it. And guys, if this show has helped you, remember you can support the show directly at Patreon by going to patreon.com/recoveryafterstroke and making a small monthly contribution. It helps cover costs of recording, editing and hosting the podcast.

Bill Gasiamis (02:16)
Tom Ballo, welcome to the podcast.

Tom Ballo (02:18)
Thank you. Glad to be here.

Bill Gasiamis (02:19)
Tell me a little bit about what occupied your time before stroke.

Tom Ballo (02:24)
Well, I retired, retired 10 years ago. So I was well acclimated to that. And I mostly doing, I had a YouTube channel. It it’s called GTA5 and Squirrels. And I said,

make recordings of Grand Theft Auto V video game, really interesting videos. And then I got some squirrels that were living next to the house and one of them started was really…

friendly. He kept walking up to me and finally started climbing up me and I started feeding him and I was making videos of videos of that.

What kind of stroke was it

Tom Ballo (03:19)
I had over 1500 subscribers and 1 million views. And the whole channel just hit 1 million.

Bill Gasiamis (03:30)
And y you used to play GTA, Grand Theft Auto. Was it your favourite game?

So you’re doing that in your retirement before you retire retired, what were you doing for a living?

Tom Ballo (03:40)
I was a lawyer for a real, real large telephone company for 32 years.

I was a litigator and regulatory law, so it was administrative law, I was, it was just, it was cases, and they were the biggest cases that affected the company.

About nine years.

Bill Gasiamis (04:06)
Yeah.

Tom Ballo (04:07)
That was one reason I retired early. I retired at age 56 and I just wanted to make sure I had time to enjoy retirement. I didn’t want to work until I died or would have had the stroke when I was working. That’d be different. I had enough time to do a lot of things.

for the stroke happen.

Bill Gasiamis (04:35)
What what was that day like? What what did you notice?

Tom Ballo (04:39)
nothing, you know, it came out of nowhere. I was playing a video game and about seven o’clock at night and I got up and was getting ready to walk in, go into the other room. I was done and it just hit me out of the blue. It hit me out of the blue. There were no warning signs or anything. No.

very sudden.

Bill Gasiamis (05:07)
What kind of stroke was it? What what was the

Tom Ballo (05:09)
Is it hemorrhagic?

And it was, they say massive, it was a massive one. You know, I pretty much started trying to tip over to my right side. That was the side that started effecting. And I think I made it into the bathroom and over towards the sink. I mean, mean the tub.

And that’s the last I remember. luckily, my youngest granddaughter was there. My young granddaughter, she was five years old. She was there and I guess she saw me and she went and got her dad, who’s my son-in-law. They were living with us.

At the time we had a big house and he told him, she told him and he came down and called 911 right away.

It just hit like a ton of bricks.

Bill Gasiamis (06:19)
How did you experience it? Was it painful? Was it were you dizzy? What happened?

Tom Ballo (06:27)
I had about 60 seconds that I was aware of it. It just hit me and I don’t have any pain recollections from it, but…

Apparently I hit my head pretty hard, had bruises and all kinds of things.

Bill Gasiamis (06:47)
Do you have the details about how you ended up in hospital? You they called nine one one. You’re you’re in hospital. Do you have

Tom Ballo (06:54)
right, heat called.

Bill Gasiamis (06:55)
any recollection of that?

Tom Ballo (06:57)
Well, I don’t have any recollection of the ambulance coming or anything about the hospital for about, I don’t know, 10 days.

And even then, even my memory then is very, very generic. Like, you know, I knew I was in a hospital.

That kind of thing.

And then

Bill Gasiamis (07:20)
Yeah.

Tom Ballo (07:21)
I don’t have much of a memory of it. The interesting thing, my wife was in Germany. One time she’s gone to Germany or somewhere abroad.

marriage and just happened to be there. Luckily, granddaughter, know, had seen me in the bathroom.

Bill Gasiamis (07:47)
You woke up in hospital and you had some awareness of your deficits. Did you kind of notice that s certain parts of your body weren’t working the way they were prior?

Learning to talk and walk again

Tom Ballo (07:56)
Well, yeah, I mean, it, you know, I don’t know, it’d just be like a car wreck or something. I knew all kinds of things were wrong. my,

Half my body was numb, exactly right down the middle from the top of my head to the bottom of my toes, straight down the middle. You know, like over here, could feel everything, right at the halfway point, now it’s, this is all numb. The right side of me. So I knew that I couldn’t, you know, I had…

Obviously I had not paralysis, numbness on the whole right side of my body.

So I wasn’t able to do much, know, although they kept me in the hospital for six weeks. And, you know, therapy. was inpatient.

Bill Gasiamis (09:04)
Yeah, because your body was dumb, did that mean you couldn’t walk or use your arm?

Tom Ballo (09:08)
I couldn’t walk. They put me in wheelchair and it would take me down to a…

call it therapy. And there they would get me out of the chair at least and I did speech therapy, occupational therapy and physical therapy. Worked on my head, my arm. That was the occupational therapy and then physical therapy with the right leg.

So I couldn’t really talk that well in the very beginning.

eventually got it, pretty much.

Bill Gasiamis (09:46)
Is that cause your speech was slurred?

Tom Ballo (09:48)
Yeah, it was, it was slurred. was real soft and, which just wasn’t my normal voice. It still isn’t, still is not really my normal voice.

Bill Gasiamis (10:01)
And has it impacted your memory and the way that you recall things?

Tom Ballo (10:05)
has not affected me in that regard, in that manner.

I

was always, I was very, I still am, but very intelligent person. I don’t mean to sound odd with that, but I just have always been, you know.

I’ve always had a good, really good, you know, brain, so to speak.

Bill Gasiamis (10:34)
Yeah. So it hasn’t affected your capacity cognitively, but it’s affected other things. And your voice is not your original kind of sounding voice. You sound a little different. And your right arm is a out of action.

Tom Ballo (10:47)
No, I mean, this is my right hand here. You know, I can, I can live, but I don’t, I don’t use it for stuff like, you know, it’s kind of a hassle cause I’m right-handed, but to have a right hand apparently affected, you know, affected by the strokes. Bad luck essentially. You know what I mean?

Bill Gasiamis (11:15)
Yep.

Tom Ballo (11:16)
now I do a lot of things with my left hand

Bill Gasiamis (11:19)
Yeah. And what about your right leg? How are you up and about? Can you get around?

Does he have aphasia?

Tom Ballo (11:27)
I can walk for sure. Yeah, I don’t have any kind of walking assistant and I can pretty much.

I take care of everything. my wife once was gone for I think four days. And so I was able to take care of myself for four or five days straight by myself. So I’m able to get around. But walking, you know, I’ve fallen a couple of times. I know you’ve talked about that.

I have been following, I’d say now it’s been like three or four months. Probably the longest stretch ever. But I was always really good at tripping and catching myself. And people would say, man, I thought for sure you were going down. I was always able to…

catch my own balance, I still have that ability so but you know I have to be careful walking around close and there’s a lot of obstacles on the ground they’re close to me to be kind of careful if I’m walking around that.

Bill Gasiamis (12:48)
And what about driving, Tom? Are you driving?

Tom Ballo (12:52)
I haven’t driven yet. You know, I want to. I’ve talked about it. Just haven’t had to,

haven’t done it. You know, my wife is, she’s great. She does so many things that I haven’t, I haven’t, you know, I don’t really need to drive. Don’t have any need to.

Bill Gasiamis (13:12)
Yeah. So you have access

Tom Ballo (13:13)
Yeah, it’s just.

Bill Gasiamis (13:14)
to transportation even even though you’re not driving, you can still get around.

with regards to the speech challenges after the stroke, was there any aphasia or anything like that that also surfaced?

Tom Ballo (13:27)
I’ll finish ya. I’m gonna go to the set.

Bill Gasiamis (13:30)
that’s when you’re unable to get words out. You know what the words are, but then you can’t generate the the sound in your mouth.

Tom Ballo (13:37)

don’t know. Not really. I think I can get everything out. don’t… There’s no…

systematic problem that I’m aware of. know, finding… A lot of times won’t talk that much. I don’t have to. But if I do, I don’t have a problem saying things.

Bill Gasiamis (14:06)
Yeah. How long ago was a stroke now?

Tom Ballo (14:08)
That’s happened March 1st of last year. about a year and half.

happen.

Bill Gasiamis (14:18)
About a year and a half ago.

Tom Ballo (14:20)
Yeah, you know, it was interesting when I was in, I was in therapy in-house for six weeks. And so I was about the middle of April, had the stroke on March 1st of last year.

I was on with the hospital in middle of April, they sent me home. But, and then I, for the rest of the year, I came in two or three days a week for out, I guess, outpatient therapy.

People used to see me and I wouldn’t, it was pretty odd. A lot of people, I don’t know, I’d say at least 10 people over the time.

you know, seeing me and I didn’t know them, but they knew me somehow. And they all said, I’m doing a great job, you know, being able to, in their recovery. I guess they had seen me in the very beginning and thought there’s, you know, this guy is going to be messed up bad for life, you know? And I,

overcame all that and people would just say all the time I’d get stopped, you’re doing great, you’re just doing wonderful, you It always surprised me that they didn’t even knew.

Bill Gasiamis (15:46)
So were they family members or?

Tom Ballo (15:48)
Now they were just total strangers. They were just people who also go to the hospital. Yeah, there was a lot of therapy in that building.

It wasn’t really, yeah, it’s…

had really good people thought I made a lot of progress. Surprise everybody. Now if you talk about

family, my daughters and my wife and pretty much everyone’s that’s seen me.

Just this beginning, you know, just can’t believe I’m doing as well as I’m doing.

Bill Gasiamis (16:24)
What would you say were some of the toughest challenges at the beginning of your recovery?

Tom Ballo (16:30)
I would say going to the bathroom by myself, was always hard to do in the beginning. And then…

I would say walking, you know, I had to use a wheelchair for a while, then a hemi, they called it a hemi walker.

Used that for long time and then eventually, you know, learning how to walk again. That was the hardest thing.

Bill Gasiamis (17:05)
How did your idea of of who you were begin to shift during those early months?

Tom Ballo (17:10)
That is not a problem that never has been for me.

Bill Gasiamis (17:14)
Uh-huh.

Tom Ballo (17:15)
I’ve been me before and during and after stroke. It’s not affected anything about how I feel about myself. It’s

Bill Gasiamis (17:25)
Mm-hmm.

One bad day in eighteen months

Tom Ballo (17:29)
one thing I had been working on throughout my whole life was working on the mental side.

of things and I had, you know, eventually, you know, according to every test I’ve ever seen, I passed them all that said I was what they call self-actualized, which is very rarely accomplished.

Bill Gasiamis (17:57)
What is self actualized?

Tom Ballo (17:59)
Well, it’s a theory of psychological development by Abraham Haslow or somebody. the highest, say people are on this pyramid or a triangle and the very top, chip top, the top one or two percent.

They say are self-actualized. They become really just means you know yourself. Whereas most people are down near the bottom of the pyramid, focused primarily on survival and belonging and material things. I’ve been very blessed that I was

self-actualized

long before this stroke happened. it was, it did not affect who I, who I

who I am, really.

Bill Gasiamis (19:01)
So you didn’t change in any way, y even though you have less mobility or you have challenges with your arm, you don’t see yourself as different in any way or not you.

Tom Ballo (19:13)
Yeah, correct. I’d say out of all, ever since I had the stroke, as far as bad days, I had like one…

One bad day, I guess, where I just felt like, man, it’s too hard on this, not try or something. And just felt kind of down. But I felt better the next day and I’ve been the same. So I’ve had one bad day. Yeah,

Bill Gasiamis (19:47)
One bad day in a year and a half. Not bad.

Tom Ballo (19:50)
you know, was talking and I’ve talked to a therapist.

And was talking to her at the time and I just kind of unloaded. I felt bad and all this. was, I thought I’d kind of given up, I got out of it.

Bill Gasiamis (20:09)
Just a quick pause. You’re listening to my conversation with Tom Bellow, sixty-five, when a massive stroke hit him with no warning signs at all. And who says that in eighteen months of recovery he’s had exactly one bad day? Before we get back into it, a couple of things. If you’re already a Patreon member, a YouTube member, or you’ve left a super chat or a super thanks on this channel, you’re the reason this show exists.

And the reason I can keep covering what it costs to make it. Genuinely thank you.

And remember, if what Tom’s describing, rebuilding a sense of who you are after everything’s changed, is something you’re sitting with yourself. That’s exactly what I work through one on one with people at recoveryafterstroke.com/momentum. It’s lived experience coaching, not therapy or medical treatment, and it’s built around getting you moving again when you’re not sure how to start. Let’s get back to Tom.

Bill Gasiamis (21:07)
Do you miss doing any of the things that you’re not doing at the moment? Your

Tom Ballo (21:13)
Well.

Bill Gasiamis (21:13)
for example, your GTA

Tom Ballo (21:15)
GTA 5?

Yeah, I do, although I had a way of playing it now, I still play the game in other video games as well as best I can, but it’s really hard even just to try to keep my finger on the

gas pedal in the cars. It’s tough. And it even started hurting after a while, you know. And I stopped. I still play with them. you know, I miss that I’m trying to think. I don’t do the squirrels anymore. We moved. And we don’t have squirrels here.

So.

It’s been kind of good in a lot of ways.

Bill Gasiamis (22:15)
How? How

has it been good in a lot of ways? Tell me.

Tom Ballo (22:20)
watch TV, I guess, is I’m trying to get around. I don’t watch normal TV at all, you know, but it has commercials,

Bill Gasiamis (22:29)
Yeah.

Tom Ballo (22:29)
anything like that. It’s primarily YouTube and movies, but…

Content has to be very truthful and non-deceptive. And I’ve been able to watch and learn a lot of things.

I’ve been able to watch these YouTube videos and find, been very active with that. And then in a lot of ways, I used to do everything and now I don’t. And that’s kind of a blessing, I guess. I don’t know. I used to do my own laundry and…

I did dishes for everyone and mowed the lawn and all these things that I used to do. Now I don’t have to.

Bill Gasiamis (23:34)
So now you have somebody else doing those tasks and you have more free time on your hand?

Tom Ballo (23:39)
Yeah, nobody expects me to do them. You know, really, my wife has been real good. She has picked up the slack, so to speak. It’s not her favorite stuff. I used to do it all. A lot of things. And I don’t have to really do much of anything. We recently moved and moved…

couple hours away from Austin to Houston. And I didn’t have to do anything with the move. It doesn’t move a thing. Whereas, I don’t know, just, it’s kind of nice. I try to do dishes whenever I can, but it’s not like,

used to be. People would expect me to do everything and I didn’t mind doing it. It’s kind of nice not having to.

Bill Gasiamis (24:38)
Yeah. Are you living at home with your wife and is it just you and her?

So it’s ju

just you and your wife at home now.

Tom Ballo (24:46)
Yeah, as far as living here now, it’s pretty, it’s real quiet because for about two and a half years, we had a really, really full house with my daughter and her husband and three daughters, granddaughters.

Bill Gasiamis (25:05)
Yeah. A

and has your wife ever perhaps mentioned how things have changed for her, how she experiences her the new way that she interacts with you or the differences in the interaction with you?

Tom Ballo (25:18)
Hmm, not really. Pretty much she…

very, pretty much the same. Even when I, even beforehand, I would,

pretty much do my own thing and so would she. I’d be playing video games or out with the squirrels. I was on my own anyway.

Bill Gasiamis (25:42)
Yeah.

Tom Ballo (25:43)
So really, it’s not really been a big problem.

Bill Gasiamis (25:47)
Yeah. When you got back from home, were you totally kind of independent? Were you able to toilet yourself and do all those things or did you need support for that?

Tom Ballo (25:55)
No,

I’d say when I first came home, I was still in a wheelchair and still using a flask to go to the bathroom for the first, I don’t know, I’d say about two months at home.

until I learned how to walk and then with the hamming walker and then eventually put that thing away and walked by myself. So I’ve had to kind of learn slow. I’ve had to, I’ve made improvements in that regard.

Bill Gasiamis (26:45)
Yeah. Your wife sounds like she definitely stood by you. Who else was around? How did your kids get involved in those early days?

Tom Ballo (26:53)
Well, the first week my daughter and her husband were taking care of me or coming to see me in intensive care and stuff like that at the hospital. And then, my wife was in Europe for the first week of my, first week of the stroke. But then,

The symptom that’s getting worse

And you know, my daughter lived with us. She would occasionally, well, I don’t know, she had to think back on it. Pretty much once my wife, Linda, you know, had come back, she took care of me. yeah, she took care

that care me.

Bill Gasiamis (27:45)
Yeah. took care of all of your needs, I would say. I

Tom Ballo (27:50)
Yeah.

Bill Gasiamis (27:51)
would imagine. Is that right? Like everything you needed to sort of be able to get in and out of bed and to get food and to get showered. Did you guys have any help come from any services like nursing or anything like that?

Tom Ballo (28:04)
I never had that, did not need that. We fixed, well, we completely redid one of the bathrooms at my last house and made it so I could do a walk. It ended up being a really nice bath area with a bench and a.

Handheld nozzle

not a tub, but walk in kind of a thing. So we fixed a shower because at first…

Bill Gasiamis (28:41)
like that.

Tom Ballo (28:42)
No, I don’t think I have.

It was primarily me just each day trying to get a little bit better. But I’ll tell you, one of the problems that I’ve had is that I’m getting more more spasticity, spasticity and

Bill Gasiamis (29:05)
Yeah.

Tom Ballo (29:08)
muscle tightness. I mean, it’s gotten, I’d say.

Every day it gets like one thousandth worse every day. It doesn’t automatically get better even if you work out or anything.

Bill Gasiamis (29:24)
Yeah. Do

you have s massage or anything like that to help relieve it?

Tom Ballo (29:33)
Well, I didn’t know for that. I haven’t had anything yet. I’m thinking of. don’t know. I don’t know if it’ll work. Find a hospital and start and see what they say. There’s something that they can can do. It’s. Yeah.

Bill Gasiamis (29:54)
Challenging.

Tom Ballo (29:55)
I thought that it would, you know, just you.

It would just get better each day, but it’s not quite that way. I used to be able to close my hand, I can still do that. But now it feels like it’s just a lot tighter.

It’s not really painful, but it’s borderline painful. I don’t know, it’s not really pain, but also my feeling is much more sensitive. Like when I yawn, I can feel a tremendous amount of tingling.

throughout my entire, my whole right leg from my hip down to my foot.

Bill Gasiamis (30:49)
When you yawn.

Tom Ballo (30:50)
when I yawn, for some reason it just energizes my leg.

I don’t know, or like, if I don’t, okay, like if I just don’t move my right arm at all, but they put it at rest, I don’t feel anything. There’s no tingling, there’s no sensation. As soon as I start moving it, and if I touch anything, I can really, really feel it a lot more now than I did at the beginning.

It’s very sensitive to touch.

Bill Gasiamis (31:27)
Yeah. I know what you mean. did you ever feel like your like your autonomy or your dignity were being challenged when you went through this? How did you navigate that part of it?

Tom Ballo (31:38)
Well, see, gets back into my being self-actualized.

Bill Gasiamis (31:47)
Yeah.

Tom Ballo (31:49)
My dignity was never affected by any of this.

Now it’s been, I don’t know, like if people see me in a store or in a market, they’re always more than willing to want to talk or they make me feel special in a way. So that doesn’t, it doesn’t bother me. And people like to hear, they have a lot of questions.

It doesn’t affect my dignity at all.

I haven’t fallen down in public,

Bill Gasiamis (32:28)
Okay.

Tom Ballo (32:29)
so it hasn’t happened. I’ve heard people say that bothers them.

That’s

Bill Gasiamis (32:32)
W

what it doesn’t sound like there’s much that would affect your dignity that you seem pretty mild mannered and calm about many things.

Tom Ballo (32:41)
Yeah, I’m very…

I don’t know how to put it.

I’ve just been, people have commented and have noticed by themselves that I’m not like normal. There’s something about me, I really know myself more than most people do.

Bill Gasiamis (33:02)
Yeah. Your what about your message for people who are just starting their stroke recovery? If they were listening, you know, w what would you say to them? You’re a a year and a half in, so you have some insights and some awareness. What would you share with the people who are just starting their recovery?

The one thing that hasn’t changed

Tom Ballo (33:18)
Well, you know, one thing I do is I watch a lot of videos about strokes surviving. So and every stroke is different. That’s one thing. It’s kind of stroke recovery is different and the severity of the strokes are different for everybody. it’s kind of hard to say for everybody how to how they can get along. But

I would say, of course, would try to tell people to try to become, have as much confidence in yourself as you possibly can and stay positive. And, you know, it’s hard to do if you want that way to begin with. I’ve been lucky that I was

been positive before I started this, before I had the stroke.

some benefit to me after the stroke. It didn’t affect it. So I would say keep on trying. It’s going to be something to work on all the time, every day from here on out.

Bill Gasiamis (34:40)
Yeah. What are you hoping to work on in the next say twelve months? What’s on your on your list of things to get done or to continue to do?

Tom Ballo (34:48)
Well, the main thing for me is hopefully spasticity, it’s hard to say for me now, spasticity, doesn’t get any, just hopefully that’s.

I can get that out of control.

That’s all I worry about in the future, so to speak. All I think about is hoping that that doesn’t get a lot worse.

You know, if you…

Bill Gasiamis (35:32)
Just want such a some improvement

in the deficits.

Tom Ballo (35:35)
Yeah, improvement in…

You know, I was always, I had stretched every day or every night for 30 minutes. For my whole life, I’ve been into stretching. And…

Now, you know, it’s the opposite. I got stiffness like you’ve never seen. But luckily it has not affected my sleeping at all. Matter of I haven’t had a bad night’s sleep since day of the stroke. Every evening or every night, sleeping is perfect.

Bill Gasiamis (36:17)
Yeah, that’s excellent. Tell me, Thomas, do they know what caused their brain hemorrhage?

Tom Ballo (36:23)
No, they really don’t.

And no one ever came to me and ever once wanted to or wanted to tell me or wanted to find out about what caused it. They were always seem like they were always more like in the moment trying to get just trying to get everything better, doing the best thing.

to recover. as far as what might have happened, no real idea. I would just say it overall. got, I mean, the stroke I had was probably about as severe as anybody had.

It’s really not, you know, it’s not completely debilitating. It’s not too bad, really.

Bill Gasiamis (37:26)
Yeah. Hey Thomas, I really appreciate you reaching out. Thank you so much for connecting with me and sharing your story.

Tom Ballo (37:34)
Thank you for having me on.

Bill Gasiamis (37:37)
Well, that was Tom Bellow, thirty-two years a litigator, eighteen months a survivor, and someone who will tell you straight that some things, like the spasticity he’s living with, have gotten harder rather than easier.

Even while he’s had by his own account just one bad day. That kind of honesty is rare. And it’s exactly why this conversation moves the way it does. Tom’s not performing recovery for you. He’s describing it at his own pace. And that’s worth sitting with rather than rushing past. That’s really the reason these episodes get made at all. Not to hand you a formula, but to let you hear what recovery actually sounds like from someone living it. Because the version

you carry in your head before you’ve heard someone like Tom is almost never the real thing. If this conversation gave you something, a moment of recognition, a reason to keep going, a way to explain your own recovery to someone who doesn’t get it yet, the most useful thing you can do is share it with one person who needs to hear it today. Remember to check out my book, The Unexpected Way That a Stroke Became the Best Thing That Happened. It’s available at recoveryafterstroke.com/book.

And on that note, my new book is out now. And this one’s a bit different. It’s not about stroke specifically, it’s about what happens after any kind of trauma reshapes your life and how you rebuild even when you don’t feel ready to. It’s called Your World Doesn’t Have to Stay This Small. And if your world has gotten smaller since your stroke, fewer places you go, fewer things you say yes to, fewer people you see.

That’s the book I wrote for you. Remember to grab your copy on Amazon, search the title, or use the link in the show notes. If this show has helped you, remember you can support it at patreon.com/recoveryafterstroke. Thanks for listening. I’m Bill Gasiamis and this is Recovery After Stroke.

 

 

The post Stroke With No Warning Signs – Tom Ballo’s One Bad Day in Eighteen Months appeared first on Recovery After Stroke.

Seizures After Stroke Symptoms: What Letitia Hritz Wants Every Survivor to Know

It was New Year’s Day, and Letitia Hritz almost didn’t go. Her husband Jonathan wanted to hit a sale at their local mall, and she’d rather have stayed home. She went anyway, with gift certificates from Christmas, a Chinese buffet for lunch, their seven-year-old daughter in tow. They’d barely sat down at the restaurant when it started: tunnel vision, a sudden inability to speak, the desperate, wordless search for the nearest chair. “I remember sitting there,” Letitia says, “and I think I said I feel like I’m going to pass out. And that honestly was the last thing I remember.”

She was 34. The emergency room staff, seeing a young woman collapse on New Year’s Day, assumed the obvious: too much celebrating the night before. It took nearly three hours, and a doctor asking her to roll over and noticing her face had dropped, before anyone called a stroke alert. By then Jonathan had already caught her as she went limp in his arms, already flagged down an off-duty paramedic eating lunch nearby, already made the drive to the ER with their daughter beside him, not yet knowing the word for what was happening to his wife.

The Diagnosis No One Expected

Letitia’s stroke was ischemic, centered in the left thalamus a similar injury to other survivors Bill has spoken with (recoveryafterstroke.com/thalamic-ischemic-stroke-survivor-story/), and one that comes with its own particular set of challenges around sensation, fatigue, and cognition. The cause, once doctors went looking, turned out to be a PFO, a small hole in her heart that had let a clot travel straight to her brain. It’s a cause other guests on this show have lived through too (recoveryafterstroke.com/pfo-and-stroke-recovery-yvette-adams/), and like many of them, Letitia had no idea it was there until the stroke forced the question.

What followed was the version of recovery most people never hear about: inpatient rehab, then six months of outpatient therapy, a wheelchair, then a walker, then a cane she still carries today. And then, just as she seemed to be finding her footing, something stranger: a full return of her stroke symptoms, triggered by an unrelated illness, so sudden and so complete that even a family who’d spent two decades around the “stroke world” had never heard the word for it: recrudescence. “I’m glad you’ve never heard of that,” Jonathan told Bill, “because I know you’ve been doing this a long time… and we had never heard of it either.”

Seizures After Stroke Symptoms: What Letitia Actually Experiences

This year, a new chapter began, one this episode was built around. Letitia started having seizures. Not occasionally: close to 200 of them since January, sometimes several in a single day. What makes seizures after stroke symptoms so hard to manage isn’t just the seizures themselves, but how unpredictable the warning signs can be. “I try very hard to pay attention to how I’m feeling,” Letitia says, “but there are some days where I don’t feel well, and it’s very hard to differentiate those two feelings.” Some seizures come with a warning she’s learned to read. Others don’t; they simply arrive, and the world goes dark for a minute or three.

The seizures have taken her driving privileges and, with them, a piece of her independence. They’ve also reshaped her household in a quietly heartbreaking way: her ten-year-old daughter now knows to guide her mother to the floor, pull out an iPad, and start a timer. “I hate it,” Letitia says. “I just hate it.” It’s a small, devastating image of what recovery actually asks of a family: not a single crisis to survive, but a new baseline everyone has to learn to live inside.

A House That Was Never Built for This

Long before the seizures, the Hritz family was already learning how much a body’s needs can outpace a home’s design. Their two-story house has eight steps from the driveway to the front door, fifteen more to the bedroom, ten down to the laundry. “I’m sitting there at thirty-four years old,” Jonathan remembers, “thinking to myself, how am I ever going to take my wife home?” It’s a question few young stroke survivors (recoveryafterstroke.com/young-stroke-survivor-izzy-hirst/) or their partners expect to face, and one more reason recovery is rarely just medical.

The Cost That Never Stops Climbing

Then there’s the bill. This year alone, between two hospital admissions, the Hritz family is looking at roughly $178,000 in medical costs a number that grows faster than they can pay it down. “You can make all the payments you want,” Jonathan says, “it never goes down.” It’s the kind of financial strain that stroke caregivers (recoveryafterstroke.com/stroke-caregivers/) rarely get warned about in advance, and one more layer on top of everything else the family is carrying, including, this year, college funds quietly set aside for something else.

A Promise Still Being Kept

Through all of it, one thing has stayed constant. Bedside in the hospital in 2023, Jonathan made Letitia a promise: that no matter what happened, they would get through it together, and he would always give her a safe place to heal. Three years, a heart procedure, a recrudescence episode, and nearly 200 seizures later, that promise is the reason their family calls their story Keeping a Promise, and it’s still, in Jonathan’s words, “something I’m still trying to keep, because we have not been able to.”

Their story is a reminder of something Bill has said often on this show, in different words each time: recovery isn’t a straight line, and it doesn’t end when the hospital discharges you. As Jonathan puts it, “People just think, he was in the hospital, and he’s out now. He must be okay… They’re not okay.” What the Hritz family is living through — the seizures, the setbacks, the debt, the promise is exactly the kind of story that doesn’t get told enough. If any part of it sounds familiar, you are not the only one going through it (recoveryafterstroke.com/stroke-caregiver-journey-donna-odonnell-figurski/), and it’s worth hearing more stories like it, wherever you can find them.

Bill’s book, The Unexpected Way That A Stroke Became The Best Thing That Happened, was written for exactly this: the years after the hospital, when the real work of recovery begins. Read it here: recoveryafterstroke.com/book. And if this show has helped you the way it’s helped families like the Hritzes, you can support it directly 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.

The post Jonathan & Letitia Hritz: Keeping a Promise Through Stroke, Seizures, and Everything After appeared first on Recovery After Stroke.