Recovery After Stroke

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.

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.”

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.

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.

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.

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.

Jaemin Frazer has spent nearly two decades and around 16,000 coaching hours on a single question: what is actually going on when a capable person stops trusting themselves? He founded The Insecurity Project to work on it directly. He is not a stroke survivor – and that turns out to be the reason this conversation is useful, because he arrives without any assumptions about what stroke recovery is supposed to look like.

What he does have is a precise account of what happens to a person when their ordered world collapses, which is, more or less, the definition of a stroke.

Almost every survivor says some version of this. Six weeks out, six years out – the sentence barely changes.

Jaemin’s response is to ask what is actually being requested. His answer: not the past. Certainty.

They’re looking for certainty. They’re looking for comfort. They’re looking for safety. They’re looking through rose coloured glasses in many ways, because no one’s life was perfect before anything.

That last part is the uncomfortable bit. The life you want back had its own problems. What memory offers is not a better life but a known one – and the nervous system will take known over good almost every time.

Humans need certainty the way they need food and shelter. We don’t function in chaos. But we also can’t get certainty from the outside world, because the outside world doesn’t have any to give. It never did. The stroke didn’t remove your certainty; it removed your ability to keep believing in it.

Which leaves one option. As Jaemin puts it:

The most resourceful form of certainty is to embrace uncertainty and back yourself.

That distinction – external certainty versus internal certainty – is the whole conversation. When your sense of safety lives outside you, you have to control your circumstances to feel all right, and after a stroke your circumstances are largely uncontrollable. When it lives inside you, circumstances can do what they like. This is the same territory covered in stroke recovery mindset (https://recoveryafterstroke.com/stroke-recovery-mindset/), approached from a completely different angle.

Jaemin draws a hard line between the two, and it’s worth holding onto.

Self-doubt is accurate information about a skill gap. If you can’t yet climb the stairs unaided, self-doubt is what stops you attempting it alone. It says nothing about your worth. It’s wisdom.

Insecurity is different. Insecurity is the belief that a failure would expose something defective about you. Jaemin argues that most people misdefine it – it isn’t fear of judgement, failure, or rejection. It’s one level deeper:

No one’s actually afraid of being rejected. They’re afraid of: if I put my best foot forward and it’s not enough, and then people don’t accept me – what does that confirm about my own inadequacy?

The threat isn’t out there. It’s a verdict you’ve already passed on yourself, waiting for the world to co-sign it.

This is where it stops being philosophy.

Jaemin frames insecurity as a resource problem. Proving yourself, defending yourself, covering and compensating – all of it consumes energy. When life is going well there’s enough spare capacity that you never notice the drain.

After a stroke, there is no spare capacity.

A stroke puts you into survival mode, and now you’ve got no resources to survive, because all your best resources are directed elsewhere to make sure no one sees your inadequacy.

Survivors already know that fatigue after stroke is not ordinary tiredness. An injured brain rewiring itself is metabolically expensive. Every unit of energy spent managing how you appear to other people is a unit unavailable for healing. Attending to the emotional side of recovery isn’t separate from the physical work – it’s what frees up the capacity to do it. That connection runs through emotional recovery after stroke (https://recoveryafterstroke.com/emotional-recovery-after-stroke-dr-bradley-nelson/) as well.

Many survivors have to change how they live – what they eat, what they drink, where they go, who they spend time with. And many report losing friends over it.

Jaemin’s framing here is bracing. Resistance from the people around you isn’t a malfunction. In any story worth telling, the character who transforms does so by overcoming obstacles, and those obstacles almost always arrive in the form of other people. Remove the resistance and nothing in the hero is enlarged.

So when someone says you’ve changed and doesn’t mean it kindly, they are – without intending to – handing you the exact thing you need to become someone who no longer requires their approval.

This distinction matters, and conflating them causes real harm.

Losing the use of a limb is a genuine loss. Grief is the appropriate response, and it deserves acknowledgement rather than management.

The damage begins when the loss becomes a statement about your worth. I can’t run, therefore I’m not a runner, therefore who am I? That is no longer grief – that’s insecurity wearing grief’s clothes, and it needs a different response entirely. Survivors working through that identity question will recognise it in craniotomy stroke recovery and identity reset (https://recoveryafterstroke.com/craniotomy-stroke-recovery-identity-reset/), and it sits close to the ground covered in anxiety after stroke (https://recoveryafterstroke.com/anxiety-after-stroke/).

The line Jaemin returns to twice in the episode is this: being lost and confused doesn’t disqualify you from a meaningful life. It’s what qualifies you to begin one.

Nobody reaches adulthood with an accurate picture of who they are. Everyone arrives confused. The confusion isn’t damage to be repaired before you can start – it’s the starting position. This reframes the disorientation of early recovery as the opening move rather than evidence that something has gone permanently wrong. The same reframe underpins post-traumatic growth in stroke recovery (https://recoveryafterstroke.com/post-traumatic-growth-stroke-recovery/).

And Jaemin is firm that this is solvable – not managed, not coped with. Solvable. Because the inadequacy you’ve been protecting everyone from isn’t real. It’s a conclusion you drew as a child and have been gathering evidence for ever since.

There is no monster under the bed. Only the idea of one.

Start by being precise. When you catch yourself saying I lost my confidence, ask what you actually mean. Confidence at what? In front of whom? What exactly are you afraid would be revealed?

Abstract language hides the levers. Precise language shows you where they are.

If this episode is useful to you, Bill’s book The Unexpected Way That A Stroke Became The Best Thing That Happened covers ten tools for recovery and personal transformation – you can find it at https://recoveryafterstroke.com/book.

If you would like one-on-one support with your own recovery, you can apply at https://recoveryafterstroke.com/momentum.

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

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

You don’t need your old life back. You need to trust yourself again – and Jaemin Frazer explains exactly why that feels impossible after stroke.

Highlights:

00:00 Introduction – Losing Confidence After Stroke

Transcript:

Jaemin (00:00)

So then it costs you everything. It costs you your future. It costs you your ability to heal, to make sense of this, to come out the other side and reinvent or do whatever you need to be present for yourself.

It’s a slow descent into madness really, if all your best resources are proving and defending, covering and compensating, then you stop being human, you stop being alive, you stop being present, you become hypervigilant around what others are thinking, and your world keeps getting smaller.

Bill Gasiamis (00:35)

Before anything else, thank you to everyone supporting the show on Patreon, becoming a YouTube member, and to everyone supporting it in all other ways. Sharing episodes, leaving reviews, sending them to someone who needs them, buying the book. This show has reached over a million and a half downloads because of people doing exactly that. And I don’t take it for granted.

If you’ve ever caught yourself saying, I just want to be who I was, this episode is going to sit with you for a while. My guest today is Jaemin Fraser. Jaemin is a coach, the founder of the Insecurity Project, a TEDx speaker, and as of this year, a novelist. He spent nearly two decades, around 16,000 coaching hours, on one problem. What happens to a person when they stop trusting themselves and what it costs them? Jaemin has

not had a stroke. I want to be upfront about that because it’s the reason this conversation goes where it does.

He came to it without any assumptions about what recovery is meant to look like. And what he brought instead is a very precise account of what happens to anyone whose ordered world falls apart overnight. We get into why wanting your odd life back is really a request for certainty. The difference between self-doubt, which is useful, and insecurity, which isn’t, why insecurity draws down the exact energy your brain needs to heal.

What’s really going on when friends push back on your habits and why being lost and confused isn’t the tragedy, it’s the setup.

Three quick things before we start, my book, The Unexpected Way That a Stroke Became the Best Thing That Happened, covers ten tools for recovery and personal transformation. It’s available at recoveryafterstroke.com/book.

If you’d like one-on-one support with your own recovery, I walk I work with a small number of stroke survivors at a time. Structure, accountability, and genuine guidance from someone who’s been through it, you can apply at recoveryafterstroke.com/momentum. And if this show has helped you and you want to help me get to a thousand episodes, you can support it either as a YouTube member or by going to patreon.com/recoveryafterstroke. I want to make sure that

No strike survivor. has to ever go through what I went through when I first started my recovery, and that was not having any information about how to proceed after I got sent home from hospital. Now it’s time for the interview.

Bill Gasiamis (03:14)

Jaemin (03:15)

Bill Gasiamis (03:17)

Jaemin (03:39)

Yeah, they’re looking through rose colored glasses in many ways because no one’s life was perfect before anything. So the fantasy of if I could go back to where I was, it deletes a whole bunch of stuff around the reality of where you were in the first place. But I think that the desire is it’s certainty, safety, peace, comfort. That’s what a person is driven to find some way or other.

Bill Gasiamis (04:16)

There was, you know, before my experience with stroke, there wasn’t anything that was certain. Is it an illusion? Is certainty an illusion? Because I definitely don’t feel certain about anything going forward either. but kind of not in a bad way. Like I don’t have a bad relationship with the lack of certainty. It’s just.

It i it’s just not real. Like I feel like it might be an illusion.

Jaemin (04:53)

That’s not how we first introduced them. And I am convinced it’s not actually how it works. So just a quick summary. He says, doesn’t matter what age, what sex, what culture, what stage of life, because you’re human, just as important as food, shelter, clothing is the need for certainty. Firstly, we are creatures who do not survive in chaos. We need some sense of control, order. We thrive in the familiar. We need a sense of what’s happening next.

So we organize ourselves and we find certainty. We cannot survive without it. Interestingly though, we also need uncertainty. these six needs operate in paradox. Piers, are you familiar with the six core needs?

Bill Gasiamis (06:07)

Jaemin (06:08)

Bill Gasiamis (06:18)

Jaemin (06:19)

Bill Gasiamis (06:30)

is is is messing it up because you need uncertainty, is that that sounds like like self sabotage.

Jaemin (06:41)

Am I more than just a name and number? Do I have value? Is there any point to me? Now that’s a journey away from the tribe because we’re also relational beings. So we don’t survive in isolation. We need love, belonging, connection, warmth, touch. So if you have 100 % love and connection, you lose your separateness. And if you have 100 % significance, then you’re completely lonely and isolated. But we do need both.

So certainty, variety, significance, love, and then the final two are contribution and growth. So humans do feel the need to make a difference, add value, give back, leave a legacy, solve problems. So contribution is about adding value to others. And then growth is adding value to yourselves, to ourselves. Every living thing grows, you either grow or die. So this is the need that drives us to do more, to have more, to see more, to expand our experience.

one way shape or another. it’s a strange thing to need certainty back to certainty. It’s a strange thing to need certainty for survival in an uncertain world because you then can’t help but cling to things that aren’t really certain and try and control them. Cling to a job you don’t like, cling to a memory that feels familiar, cling to a relationship that’s dysfunctional.

cling to stuff that you know, because it makes you feel certain and makes you feel safe. There’s a predictability around it. What you’re describing is not that you’ve done away with the need for certainty. It’s

that you have a certainty in your ability to handle the real world. So you don’t need to cling to things being a certain way. You don’t need to force things to be back the way they were. You’re like, that’s ridiculous. Here I am now and I’m certain.

that I am a resourceful person, a creative person, a good person, a clever person, I’ll work it out. The real world will happen to me. I’ll wake up, I’ll open my eyes and I’ll handle it. That’s what I’m certain about. So the most resourceful form of certainty is to embrace uncertainty and back yourself.

Bill Gasiamis (09:26)

Jaemin (09:28)

your your capability, your own resourcefulness and to grow up and mature in your own sense of who you really are.

Bill Gasiamis (10:06)

I have this saying that I picked up from somewhere. Some dude in the Middle East, like I think in the 40s or 50s, said this thing. I forget his name. I I always wanted to remember his name so I can give him credit, but it goes like exp expect the best, prepare for the worst. And it kind of feels like that’s how I handled my uncertainty when, you know, the doctor turns up day one.

Of a bleed in the brain diagnosis and says, gives you the most vague version of the diagnosis and said to me, there’s a shadow on your brain. It could be a cancer, it could be a sea it could be a tumor that’s benign, it could be a bleed in the brain. Like, any questions? And I was like, Well.

Jaemin (10:57)

a few.

Bill Gasiamis (11:01)

And then after that came a lot of uncertainty. We didn’t know what a family life was gonna be like. We didn’t like know what my work life was gonna be like. We didn’t know whether I’d be around. We didn’t know any of the things that I kind of knew the day before, which I took for granted that I knew, which was only that w without knowing that there’s something wrong in my head and that potentially I’m unwell, I knew that.

Tomorrow was going to be pretty much the same as yesterday. And there’s going to be some movement in a couple of similar directions, maybe a few odd ones and different ones. And I suppose that expect the best prepare for the worst was me embracing uncertainty, the certainty of uncertainty. Does that saying kind of capture that spirit?

Jaemin (12:03)

to fear inadequacy then undermines your confidence in your own ability to handle the real world. And therefore you must then cling to external certainty and long for things to go back the way they were so that you can be safe. Because you don’t trust yourself to be up for the challenge.

Bill Gasiamis (12:50)

not got the resources backfilled in preparation for when that day comes, and then you feel inadequate, insecure, perhaps, whatever the word is, that you can even handle this. I’ve never met anyone who said, I know, I was 100% certain that I was going to handle this diagnosis from my doctors.

Can you prepare for the worst? Like that whole going back to that statement again, that saying, is there a way that we can even prepare for the worst when we don’t even know what the worst is? Is it even is it sounds like it might be might be a futile pursuit?

Jaemin (14:07)

I I think you and I here today are doing that exact thing, you know, with internal resourcefulness. We don’t know what tomorrow is bringing. So in some ways we are certain in our capacity to, you know, hope for the best, prepare for the worst. So that’s not futile. I don’t consider that futile at all. And I think that is the only job is to resource yourself for the real world, is to grow up, is to become mature.

The way that I think about that is self-sufficiency. You when you’re young, you’re growing through stages of development and really learning self-sufficiency. Can you feed yourself? Can you dress yourself? Can you learn yourself? Can you drive a car? Can you earn money? And they’re all the things, physical, financial, self-sufficiency, but people are…

seem, you know, it’s see when it comes to emotional, intellectual, psychological self sufficiencies, like what is that? How does that even work? And so they come into their adult world, being able to earn money, being able to drive a car, out, address themselves, you know, wipe their own ass. Great. But when it comes to validating their own existence, when it comes to sourcing their own certainty, when it comes to deeply loving and accepting themselves, when it comes to being the one that approves of themselves, that sees themselves.

you know, adults are typically ill prepared for that, you know, stroke

Bill Gasiamis (15:38)

Jaemin (15:38)

about them. you know, primarily that is the work of the insecurity project. It’s these conversations around existential angst, which people don’t prepare for because their world’s ordered. But when your world falls apart, then you really see how unprepared you are to handle difficulty and the worst case scenario if you have not examined your own sense of who you are.

Bill Gasiamis (16:29)

The world being ordered, it can be ordered in a dysfunctional way as well, right?

Jaemin (16:39)

you know, someone looks at one of my clients recently looked at me and says, you’re a free spirit. You’re adventurous. It’s different. It’s different from me. You know, I’m very analytical. I’m risk averse. I’m safety conscious. But if you zoom out and have a look at both of us, I need just as much certainty as that person. Exactly. I can’t survive without certainty. I can’t survive without order. It’s just that I’ve found a high quality, internal adult way to order my world so that I have internal safety.

which then frees me to go into the world and experience uncertainty and play. Whereas this other person has not found an internal way to create order. So they’re clinging to all the dysfunctional external forms of order. Hate their

Bill Gasiamis (17:47)

Jaemin (17:47)

Bill Gasiamis (18:03)

Jaemin (18:06)

Bill Gasiamis (18:07)

you park the car in the wrong bay, or you know, all these little things that people kind of cling to to make their world feel right if they see it like that. If everyone just did the task the way that they needed to do it, then I wouldn’t have a problem, right? But if you have internal certainty and you can be more flexible, I think Tony Robbins talks about being having multiple ways to be to be.

being more flexible, then you realize that there are infinite number of ways that things can be loaded into a dishwasher, for example, even though there are certainly some ways that won’t be able to wash the dishes effectively, perhaps, but there are many ways, and the other person’s ways not necessarily the wrong way or the odd way or or the incorrect way, right?

Jaemin (19:30)

Bill Gasiamis (19:31)

Jaemin (19:44)

because then play becomes possible and you don’t need things to be anything other than they are, know, good, bad or indifferent. You have an experience that looks terrible. Well, are you sure it’s terrible? Or could there be learning? Could there be a gift? Could there be an opportunity? Might you meet someone? Might your life change in an unexpected way? Like who’s to say a bad experience is actually a bad experience if you’re free to encounter it as it is.

That’s what becomes possible if you have internal safety and that you do back yourself to handle that. And I think it’s an abstract concept for most people because they’ve never faced their fear of their deep inadequacy. And so it’s always undermined. They would love to take internal certainty, but their conviction, if they’re really honest, and it’s hard to be honest, because this stuff gets pretty well suppressed.

Their honest fear is that there is a problem with them. There is an inadequacy.

They are not up to the challenge. So if they rely on themselves, they will be found lacking and wanting. So therefore they must look outside themselves. That’s their only option.

Bill Gasiamis (20:53)

Jaemin (21:15)

What do you mean I lost this happened and that made me do this? Are you sure? That’s how it actually worked. What do you mean? Let’s have a look. Let’s have a look. So that’s my whole world is someone comes to me with a level of abstraction. They use language that’s abstract. And when you use abstract language, you cannot see any of the levers that can be pulled. And so you end up feeling hopeless and overwhelmed. When you be precise, when you have a look, you actually

begin to see the mechanics, the structures that are actually influencing your experience. And when you see them precisely, the levers become apparent, like, I could actually adjust that. I could turn this, I could change this. Therefore now I’m back in control of my own experience of my reality. So yeah, that’s where I say, what do you mean? What are you talking about exactly?

Bill Gasiamis (22:37)

others that I come across is I hear the word depression and anxiety. And it’s an umbrella word that people place on so many experiences and nobody ever even really knows if if I challenge if I have the permission and and I’m in a room with the right person to challenge them and ask them, well, do you do you know what the definition of depression is? And do you know what the definition of anxiety is?

Nobody can really give you that. And they’ve taken a word and they apply it to an experience that may have been completely separate from the intended definition of a word like depression and anxiety. And I I kind of feel like that’s what you’re saying. Like somebody says, I’m I’m depressed, like, okay, like, why? How? How do you know that?

Jaemin (24:00)

So the areas you are anxious, you’re only anxious because there’s something about the activity you’re involved in, which you feel threatened, personally threatened that someone might see your flaw. So let’s not worry about the anxiety, it’s downstream. Tell me about this perceived flaw. Tell me about this thing that you think is wrong with you. Are you sure that’s even there? The great humor of my work in the same as what you’re saying, know, insecurity.

Talking about fear, my first question to people, what are you afraid of? And no one knows. People are experiencing fear. They can tell you that much. So what you’re running and hiding, but what are you running and hiding from? yeah, it’s just this, you know, I just feel so, like, okay, interesting. So you’re running and hiding. What about if we go and have a look at what it is you’re running and hiding from? You might be surprised. In fact,

You will be surprised. promise you it’s not what you think it is. And you’ve just been running and hiding for so long. You’ve just become convinced that there’s a thing here that you ought to keep running and hiding from. I’m not so sure.

Bill Gasiamis (25:41)

And the the best thing to do was just put it out there. And if somebody did say that was handle it. And if somebody didn’t say that, well then there was nothing to handle. So just do it anyway. And I remember then also with my book, I’m not an author. I did I’m not a scholar. I’ve never done any of that stuff. But I wrote my first book, The Unexpected Way That a Stroke Became the Best Thing That Happened. It’s a pretty loaded title. And I knew it was gonna ruffle some feathers.

But I put it out there and the very first comment that I got from the very first post that I made was a negative one.

And what I realized was that pattern was similar in that when I started the podcast, I had the exact same concern that it might happen and it did. People did give me negative feedback.

But then it seems to me now now that I’ve learnt a few times, you know, what happens when you put yourself out there for the first time when you tell the world this is what I’ve created, you know, I’m sharing my creation is part of the journey has to be something that’s gonna test your insecurity. It might not be a negative comment or so but it but it might be like bad sales or it might be nobody listens or whatever.

So it sounds like insecurity is necessary in some cases to kind of overcome, to tackle it, to overcome it, so that you can be better at tackling it and overcoming it and achieve more things. Do you know what I’m saying? Did I explain that correctly?

Jaemin (27:54)

I think I understand. I don’t think I agree with you though.

Bill Gasiamis (27:58)

Jaemin (27:59)

Bill Gasiamis (28:07)

you picked up self doubt there.

Jaemin (28:10)

I’d be a crazy person and I would be, you know, dangerous to myself and the world. So self doubt doesn’t, doesn’t tell me I’m a bad person. It just highlights the limit of the things I’m good at. So, so the real function of self doubt to me is more what you’re describing. It’s, it’s the limit says, you’re not actually very good at this. Now that doesn’t say anything about your essence, your value and your worth. Would you like to be good at this? And I go.

Actually, no, great. Well, then don’t do it. Don’t do it because it’ll go bad. I’m like, Yeah, I’d actually like to be good at it. excellent. Well, you have a massive skill gap. So go take however long to learn the skills and fill the skills so that you can come back with genuine confidence with earn confidence so that you could compete in this arena and do well. That’s that’s a wisdom conversation. Now insecurity is this personal piece. It’s like, I’m gonna put myself out there.

people are gonna judge, laugh, critique, and then they’ll see who I really am. They will see my flaws, my flaws, my inadequacies will now be exposed to the world. Now it’s personal. And so to me, the definition of insecurity is really important here because people think insecurity is somehow related to the fear of what others think about them, the fear of being judged, the fear of failing, the fear of being rejected.

Bill Gasiamis (30:04)

Right.

Jaemin (30:05)

imprecise. That’s not that’s not insecure at all. It’s just one or two levels deeper than that. You know, say for instance, the fear of failure, which is a typical one. And no one’s actually afraid of failing. They’re afraid of the personal implications of failure. I if I try my best at something, and then it doesn’t work. Huh? What have I just revealed to the world about me the problem with me?

Same as rejection. No one’s actually afraid of being rejected. They’re afraid of, if I put my best foot forward and it’s not enough, and then people don’t accept me, huh, what does that reveal? What does that prove? What does that confirm about my own inadequacy? So then insecure.

Bill Gasiamis (30:47)

I about what I think are my inadequacies. Because it’s not about the other

Jaemin (30:50)

Bill Gasiamis (30:53)

Jaemin (30:56)

Bill Gasiamis (30:58)

Jaemin (31:01)

the substance of your own sense of you, the language you’ve used to describe yourself and check it, check it for integrity, check it for gaps, check it for misunderstandings. Like that’s the fun of what I get to do. It’s take what appears to be abstract, mysterious, messy, unknowable and treat it like a structural engineer just by examining the structure of language.

Bill Gasiamis (31:57)

Jaemin (31:59)

topic to face and yet the great joke is there’s no actual reason for it to be hard other than the confirmation bias we’ve given ourselves buying into our own bullshit, confirming our own fiction, exasperating our own misunderstanding. So there is no monster under the bed. It’s just the idea of a monster that terrifies us.

Bill Gasiamis (32:55)

issue because you know safety comes in in a variety of different things. You know, you have to be safe from people entering your home, you know, back in the day and harming you and your family and taking your belongings. If you’re in a war torn area, you have to be safe from, you know, the invaders and that kind of stuff. But also this discussion that we’re having seems to me, as you keep going into those little beautiful deep places, it seems to me that

Again, it’s about us

creating like many barriers of safety around us and thinking that that’s the perhaps not even thinking like in just instinctively creating this kind of like multi layered safe structure that we can’t be harmed in.

Jaemin (34:06)

Bill Gasiamis (34:20)

Jaemin (34:21)

doing the dishes and not mowing the lawn and not contributing to my ecosystem in any way, shape or form. And yet I’m being rewarded, loved, nurtured, cared for, praised, fed. Hmm, turns out it’s fine to be me. I can be relaxed and at ease being me, me as I am without performing, without achieving, without contributing is enough. Great. And then, then you, you know, you get somewhere past two, you know, somewhere around that the game breaks down.

And all of a sudden you’re expected to participate, to perform, to conform, to behave. And no child’s prepared for that. No one’s ready for that. Such a surprise. And so the first time the child gets surprised, embarrassed, disappointed, upset, scolded, it’s such a confusing experience, but all the alarm, those safety warning lights are going off through their whole being. There’s a danger you didn’t know about. You.

must pay attention and here’s the thing the danger is in you the danger is you’re not who you need to be to survive in this world so don’t be you ever again like be other than you be better than you be different than you do not ever show up present and unguarded ever again or it will turn to shit so yes it’s safe so then you build this safe world this safe persona these safe structures these familiar places where people

think you’re good, think you’re smart, think you’re strong. Also, they never see the thing that you don’t want them to see, which would be the ultimate danger and then you die. Yeah, it’s entirely about a biological, chemical, psychological need for safety that is unavoidable.

Bill Gasiamis (36:21)

One of the challenges that stroke survivors have, well, I’ll talk about me. I had the challenge of, well, I needed to stop smoking and I needed to stop drinking. But all my extended family and friends were smokers and drinkers. And stroke survivors often comment about how they lose friends after a stroke.

And we’re I and I’ve kind of tried to unravel that a few times and understand what it is that makes it difficult for people to evolve and and adapt and grow and stop the behaviors that perhaps led to a stroke, you know, so that they don’t have another one. And family and friends often do that. They kind of intervene in a way which says, Well, what do you mean we can’t have a drink when we go out? Like that’s we always go and have a drink.

And then that person has has to explain themselves, perhaps, or conform again, just to be part of the group. The question is, are we also dealing with the insecurities of our family and friends when we find a way to overcome our own insecurities, perhaps, about something, and then we start to change and evolve and move forward? Are they are those people feeling like

They’re left behind. Th sometimes the sometimes the sentences that people hear when they try and stop smoking or drinking in a particular situation are you’ve changed.

You know, like it’s a bad thing.

But it’s not said in a positive way. People experience it on both sides of the coin in a negative way. The person who’s saying to their friend who’s had a stroke, who’s trying to not have another one, is saying, You’ve changed and I don’t like the way you’ve changed. And the person changing is hearing I’m changing and now people are having a bad experience because I’m changing. Like

What’s all that about with that other person in our life?

Jaemin (38:59)

Bill Gasiamis (39:07)

Jaemin (39:09)

Bill Gasiamis (39:23)

It’s getting too hot in here.

Jaemin (39:31)

for whatever reason says yes to a cold wood venture and embarks on a journey of self-discovery and eventually has to go do the thing that only they can do along the way they meet a wisdom character. You know, there’s a Gandalf, there’s a Yoda, there’s a Dumbledore, Mr. Miyagi, but eventually the hero’s got to go face the biggest fear and do the thing that’s impossible. And when they do, they come out the other side transformed and then they return home with that transformation and their whole world benefits.

So, so it is the process of transformation. It’s the process of potential. It’s the process of destiny. It’s the process of seeing a person fulfilled in their experience of themselves. So a writer is bringing you in, in along for that journey. Now, if the writer transforms the hero magically or supernaturally, it’s a horrible story. You know, if the writer goes, you know, here’s the weak person. They went to sleep and they woke up the next day transformed.

Who knows what happened. It was just, you’re like, really? What’s the point of that story? Like, that’s a horrible story. If the transformation happens in a way that’s supernatural or magic, it’s false. The transformation happens through overcoming of obstacles. The weakling becomes strong by overcoming resistance. And the resistance is almost always through the form of characters.

So the writer says, stage, write the bully and to stage, write the villain, the parent, the trickster, the joker, the judge, the king, like, and so the hero doesn’t know the story is being written about them. And so experiences all these characters very personally and wishes the characters would go away. But the audience kind of sees the gift in the character, sees the opportunity.

You know, when the audience sees a bully harassing a victim, what the audience is rooting for is that the victim would rise up and punch the bully in the nose. And something transformational happens if that victim ever does, you know, they actually then receive the bully’s gift. All along the bully had this gift of personal power delivered in the form of oppression. And because the victim had to find such deep strength that they didn’t even know existed to rise up and finally say this ends here, they’ll never be the victim again.

And so in that way they’re transformed. So you could make a case to go, thanks, bully for being a good bully because you made my life so hard. I didn’t think it was possible to overcome you. Thank you. It’s not personal. So a writer then is not going to write an empathetic bully, you know, a very emotionally intelligent, compassionate, they’re going to write a thug. They’re going to write a dullard. They’re going to write someone who’s big and does not change. And even though the, the hero wants to bully the change.

If the bully changes, if the bully goes to a spiritual retreat and comes home and change man and then apologizes and makes it up to the victim, it’s kind of nice, but the audience is going, but the victim didn’t have to become stronger in any way. So they’re still just as strong and the next bully is coming and they’re no better prepared. So all that to say, love, I love treating our own lives like this hero’s journey story. I love gamifying the experience. I love going.

You know, this insecurity, a lot of people think if only I had a different experience at childhood, then I wouldn’t be so insecure now. If only there weren’t so many difficult people blocking my path, then it would be easier for me. Like, what, do you mean? Like that’s, that’s not the tragedy. That’s the setup. That’s how the game begins. Like that’s how the tensions created so that you have a gift of being able to overcome. So these people exist for you.

And yes, they’re in your way. Great. Yes, they’re making it hard. Perfect. But we only play hard games. Like if you’re, you’re playing footy and it’s, you know, last year’s premieres versus the under 10s girls side and you win, you, that’s a very embarrassing experience. Like you don’t eat. That’s a horrible thing. You, know, this year’s premieres, you know, sorry, last year’s premieres versus the team that’s got undefeated this year and you win that game.

You know, that’s, that’s a meaningful experience. and yeah, I love this idea that everyone comes into their twenties and thirties lost and confused. And most people are really upset about that. Wishing that their experience up till then had been different and feeling disqualified from a meaningful life because of what’s happened, because of who said this and who’s done that. But if you just zoom out and say it like a hero’s journey or a beautiful game, then

then you realize, no, no, no, being lost and confused, oppressed, you know, that doesn’t disqualify you. That’s what qualifies you to go play. Now you can begin, now you can begin this journey of self-discovery to go all the way back to the beginning and see who you’ve always been all along. So it’s a very different way of thinking about life, but I’m constantly confronted with people who treat the stuff that’s happened to them as wounds.

And the best you could ever hope for is that eventually you could bring healing to yourself and it become a visible scar that doesn’t really afflict you. Whereas this says, yeah, what if those things, what if life doesn’t happen to you? It happens for you. And the real gift is your own opportunity to rediscover who you’ve always been by overcoming obstacles and especially in the form of people and especially in the form of insecure people.

who of course are going to make your journey difficult. Of course, you know, not everyone’s cheering you on. Eventually the heroes got to go alone. Eventually they’ve got to. If they don’t go alone, then they can’t do the thing that only they can do.

Bill Gasiamis (46:01)

and

In fact, I learnt about the Heroes Journey after my brain surgery. So we’re talking about I don’t know. I think I got out of hospital for after brain surgery in late 2014. And I think it was around 2017 I did a particular course that I was in. It was a behavioral modeling course and it was about modeling a behavior that we thought was one worth other people learning and repeating. And the

The person who was running the course, awesome friend of mine and mentor and teacher, a gentleman called Marvin Oka, he spoke about the hero’s journey as part of this course to teach us about like how to tell a story. And I hadn’t grasped the concept very well. but because of that course, my first book was able to become a reality. It took four years for me to.

make that happen. And I released it in twenty twenty twenty three, somewhere there. And since then I’ve done a bit of a deep dive into the hero’s journey and understanding how to take people through a story. And my next book is structured that way. There’s a moment where life is quote unquote normal and then there’s an event and then there’s everything, you know, there’s been a spanner thrown in the works and everything is

not like it used to be. And now there is this post-traumatic growth experience that you can go on. And if you know you’re going on it, it’s easier to go on it. But some people are not aware that they might be going on this journey. They’re just programmed from a previous way of doing life that these things are all terrible and bad and they’re not good. And there’s no growth and there’s no learning and there’s no opportunity. But there but there is, but we just framed it.

in our past way of thinking and that’s not applicable now, even though we’re still trying to apply it, apply it, apply it. And what you said about the the bully, I remember at school, if if I was a victim, bullies used to seek me out like like a mosquito knows who to go and sting, right?

Jaemin (48:40)

Bill Gasiamis (48:42)

was was it. That was the key to unlocking the whole how other people perceived me in those types of situations. And then none of the bullies turned up to have a go because they weren’t gonna get or or perhaps they saw that my response was going to affect their insecurities about themselves. Right. and realistically when I was going through stroke, stopping smoking, stopping drinking,

stopping attending the particular venues where smoking and drinking happened so that I can avoid smoking and drinking. It meant that certain people couldn’t associate with me anymore. And

It’s not that they were bullies, but when I learnt how to manage that situation once, the others that now I that I now interact with don’t require us to interact in a way that includes smoking and drinking in a particular venue. We can have just as meaningful interactions without the smoking and drinking, without being in that venue, just being in a different location.

Doing a different thing. And and there’s no n and and no one feels bad about that interaction. I don’t feel about bad about it because I’m not partaking in something that the other person wants me to partake in. And the other person’s not feeling bad because they’re partaking in something that I’m not partaking in. And we’re there for the same reason. We’re there for the catch up. We’re not there for the smoking and the drinking.

Jaemin (50:26)

Bill Gasiamis (50:50)

Jaemin (50:50)

If I, you know, the smoking drinking example, if you never talked to me ever again, if you cannot, then that will be okay. But I cannot go here ever again. And I won’t and you cannot make me and I won’t be made. And so there it is. Great. That your audience is watching that cheering. Yes, transformed. Never be victim again. And then on the other side of that, it’s often surprising what happens in those relationships. And it’s not uncommon for mutual respect, even though

It’s not guaranteed and you have to be willing to let go of it completely. Because yeah, the hero’s got to go alone.

Bill Gasiamis (51:33)

eleven years old or something. And yeah, then we got along forever.

Jaemin (52:08)

Bill Gasiamis (52:39)

Jaemin (52:42)

Bill Gasiamis (52:46)

Jaemin (52:47)

But in the same way, like no victim when they’re being bullied wants to see it like an archer, like wants to say it like a gift. They want to be rescued or they want the bully to change. It’s impossible to face a bully. Same with the parents. It’s like, don’t understand. This is my dad. You don’t understand. Like it’s just, you know, blood is thicker than water. You got to be there for family. Like it’s just how it’s

Bill Gasiamis (53:30)

Jaemin (53:30)

no one wants that tension.

and would hope that the tension just goes away. But if you see it like a great story, it provides the greatest opportunity for your own sovereignty. You know, the bully’s gift is personal power. The parent’s gift is sovereignty. Because when you were born into their world, it’s like you’re born into a kingdom, king and queen on the throne, and it’s their arbitrary rules. In this world, this is how we do it. You don’t like it, bugger off down the street. But here, you know, do this, don’t do that. Why, dad? Don’t ask why, just do what I say.

So the parental relationship, parents are right even when they’re wrong. And that’s a really important distinction for the nature of those relationships. And so you are a subject inside a kingdom, their rules, their map of the world, their right, even when they’re wrong. And it’s incredibly hard to break free from that to create your own map of the world and

Bill Gasiamis (54:29)

Jaemin (54:29)

Freud says, you must live as though your father is dead. You must depose the king. So

Bill Gasiamis (54:42)

Jaemin (54:42)

It’s not to love and support and empower. They might do all that, but their central function in the hero’s journey is to confuse you about who you really are.

Bill Gasiamis (55:12)

Jaemin (55:13)

You are this, this is who you are. It’s like, no, it’s just a bit of

Bill Gasiamis (55:46)

Jaemin (55:47)

is so wonderful because it’s the ultimate resistance to break out of, to examine the structure of that, to examine the confusion and really go back and reparent yourself and really be the one who actually knows who you’ve always been and to nurture that into the real world and then to become sovereign. And you know you’re sovereign when you become the one who’s right, even when they’re wrong. So you’ve got friends and family saying, what do you mean? It’s not.

You need to be able to have a smoke. got to be able to drink. That’s what everyone does. Not in my kingdom, we don’t. In my kingdom,

Bill Gasiamis (56:39)

Jaemin (56:39)

So you could be the one who unconfuses yourself by having to overcome the relational resistance in your world and discover who you’ve always been.

Bill Gasiamis (57:15)

Jaemin (57:26)

Bill Gasiamis (57:27)

over helicopter grandparenting, you know. You know, the kids cold or the kids this and the kids that, you know, we lived this with this kid twenty four hours a day, seven days a week for five, six years, you know, like we knew its needs, you know, my my son’s needs. And my dad just wouldn’t have it that we what we were saying wasn’t that we were saying was correct or was okay or was fine or whatever, you know, we were it was everything was good.

It was just his insecurities, I think. And it was like the first time that I really rebelled against my parent and said to him, Listen, man, if you don’t like it, get out. And he actually got out. He got out of my kingdom and he went back to his kingdom where things were normal and

Jaemin (58:30)

Bill Gasiamis (58:30)

Jaemin (58:44)

Bill Gasiamis (58:45)

Jaemin (58:56)

and you’ll bow down to their kingdom. Someone else who knows better than you, someone else who’s telling you what to do, you will submit to some other wisdom and they’ll be an overlord, they’ll

be oppressive. It’s how it works. Like so in the archetypal world, you either evolve or you repeat. So I’ve had people say, no, no, I left home at 18. It’s not my parents. great, but you never got the gift. You’re not sovereign. You now you just found this person and that person and this person who’s still telling you what to do. You’re still a boy. You’re still a child to be a man.

requires a battle, you must become sovereign. That’s the setup as a gift for you and the characters play a role for you. It’s stunning when you see it.

Bill Gasiamis (59:54)

It’s stunning now because you’ve shown me and man, like, yeah. I’ve kind of done the whole forgive your parents for the things that they did or said to you because they did the best with the information they had available to them, right? And I’ve done that. But this is kind of another level of that. Like just totally understanding that it that was all necessary. it’s the same as it was necessary for my friends to challenge my

not smoking and my not drinking.

Jaemin (1:00:23)

Bill Gasiamis (1:00:25)

Bill Gasiamis (1:00:37)

Purpose on the TEDx stage. Links will be in the show notes. And if you’re listening to this thinking this is me, but I don’t know where to start, that’s the gap that I work in. I take on a small number of stroke survivors at a time for one-on-one support, regular calls, accountability, and someone to talk it through with who’s actually been there. It isn’t therapy and it isn’t medical treatment. It’s structure and lived experience.

If that’s what you’re missing, you can apply at recoveryafterstroke.com/momentum.

Now back to Jaemin and to what insecurity is actually costing you while you’re trying to heal.

Jaemin (1:01:46)

to just examine the fantasy, the often unspoken fantasy that people have. If only my parents were better, more loving, more kind, more present, things would have turned out differently. Well, just go have a look at what happens if you get given a perfect parent. It does happen. People do grow up in really nurtured, beautiful, empowering, loving spaces. They’re my most insecure clients.

Bill Gasiamis (1:02:13)

Jaemin (1:02:14)

my way of seeing things and my thinking. And so would seek me out for counsel and wisdom at difficult points in her life. And I would always have wisdom for her. And it was wisdom that would work. But in giving her my wisdom, which she think you’d want from your dad, I then confused her about her own wisdom. So then she comes into the world unsure, will I ever be as wise as dad? Will I ever know what to do for myself? Will I ever be able to solve my own problems? So, you know, I’ve confused her by being wise and my son,

I’ve confused him by succeeding. So he never really saw me suck as a coach and a business owner. He’s only really seen me succeed. So he looks at my lifestyle, plenty of time, plenty of money, you know, you know, it all looks so easy. And then he goes out in the workforce and it’s also fucking hard, you know, and he’s a shit kicker at the bottom of the pile, earning no money. And he looked at me, he’s like, huh,

I, I’m incapable. I will never get to where you are. So

I’m, you’ve set the bar too high and now I’ll never get it. And so it, you know, it, it nearly destroyed him that revelation. So if you can see that there’s no way around it, that’s your parents’ job to confuse you. You cannot protect your own children from insecurity and nor would you want to, even if you could. It’s the necessary setup of the game so that you can come into your twenties and thirties lost and confused. And that’s not the tragedy. That’s the setup. Now the game can begin.

Bill Gasiamis (1:04:03)

Jaemin (1:04:10)

Bill Gasiamis (1:04:11)

Jaemin (1:04:14)

Bill Gasiamis (1:04:15)

They see me in the way that I interact and talk, and they think, I’m I’m so early on in my recovery. I I’m never I’m never gonna be like Bill.

Jaemin (1:04:40)

Bill Gasiamis (1:04:42)

Jaemin (1:04:51)

Bill Gasiamis (1:04:52)

thought process under normal situations or you’ve never considered or you didn’t know you needed to know about or whatever it is, right? And it again, it’s that ru my role is to be the confuser. It is to take the to take the seat, to have the conversation, and then to generate confusion. And then they often come out in questions in, you know, the YouTube channel or via an email, or it often opens it it often opens like a

a rabbit hole that people then need to go down and investigate themselves to become more more certain, less confused or more secure, or whatever the word is that, you know, that the experience that they’re chasing or they’re feeling they need to find. So I did struggle with perhaps generating an illusion that stroke

I you know, like I’ve just nailed it. Like I’ve had a stroke or three and I had brain surgery and I couldn’t walk, but now I am. And it’s like I was always concerned about that perception that people developed of me by listening to one podcast episode and then the role that that played in maybe setting them back in their recovery, which of course there’s not my intention, right? so I love that the confuser is necessary.

In everyone’s journey. And if I see myself as an acute as a confuser, then I don’t need to think about how.

the thing that I do is I talk about how stroke experiences are so broad, the spectrum is so wide that I can’t

that that that I can’t sort of help everyone in the spectrum because it’s so wide and that I somehow that makes this podcast lesser or I or I’m inadequate or I’m not doing a good enough job or I haven’t put enough episodes out or you know whatever. So that’s a real gift that

Jaemin (1:07:10)

Bill Gasiamis (1:07:11)

are getting a similar gift from this part of the conversation.

Jaemin (1:07:20)

Bill Gasiamis (1:07:23)

Jaemin (1:07:38)

Bill Gasiamis (1:07:39)

Jaemin (1:07:48)

You’ve now got zero resources to be directed towards growth, towards safety, towards internal certainty. So you are now in great peril. So a stroke puts you into survival mode and now you’ve got no resources to survive because all your best resources directed elsewhere to make sure no

Bill Gasiamis (1:08:34)

Jaemin (1:08:35)

So I think, yeah, that is the cost. It’s a slow descent into madness really, if all your best resources are proving and defending, covering and compensating, then you stop being human, you stop being alive, you stop being present, you become hypervigilant around what others are thinking and you just keep your world keeps getting smaller. And that’s not being dramatic,

Bill Gasiamis (1:09:09)

Jaemin (1:09:11)

Bill Gasiamis (1:09:13)

so that you can allocate as much resources to the brain to heal and to rewire as possible. And I often talk about it from the perspective of of the emotional recovery after stroke. People often avoid emotional conversations because initially they’re physically the most obvious issue is physical. You know, my left side doesn’t work or my right side doesn’t work or my face is droopy or I can’t see properly. So they attend to the most obvious things.

And then they get some point down the track and they realize they’ve never attended to the emotional, psychological aspect of the recovery. And they’re being inefficient in those spaces and therefore taking resources away from the brain healing. And it whole thing compounds and it decreases.

Jaemin (1:10:34)

that makes sense. And I think, cause people typically tie their identity and value and worth to the roles and relationships that they’ve constructed. So you described your experience of a stroke. All of a sudden you can’t be the same guy. can’t work the same way or your relationships have changed. So if all your identity is tied to that and now it’s gone, you’re in crisis emotionally, psychologically. If you don’t have any resources to examine that.

it’s going to be a significant cost.

Bill Gasiamis (1:11:06)

Often in in a in a serious health is incident,

people kind of experience grief. My old life was such and such and all these things that I haven’t got now, I can’t do now or I can’t go back to.

How does someone tell the difference between like legitimate grief over real loss of function and insecurity?

Can you can those lines blur the like do those lines blur?

Jaemin (1:11:49)

Bill Gasiamis (1:11:54)

Jaemin (1:11:56)

Bill Gasiamis (1:11:57)

Jaemin (1:12:22)

this is

Bill Gasiamis (1:12:24)

Jaemin (1:12:24)

and the lines will blur very clearly in there. But of course that is a grief. You have lost something that you enjoyed and that is to be acknowledged and understood and appreciated. That is a sadness. That’s a loss. That’s appropriate to feel sadness. And the danger is when it becomes personal. That’s the whole insecurity conversation. Then you put yourself in great peril and can spiral into all kinds of dark places.

Bill Gasiamis (1:13:20)

Jaemin (1:13:20)

you have to cling to something else. you know, I’ve seen lots of people, you know, I’m training for Sydney Marathon at the moment. My Instagram feed is full of Instagram runners. One of my friends yesterday read an article, he showed me that the top job in the world now is shit runner, good Instagrammer. People are making careers out of being mediocre runners, but good at Instagram.

But you know, my feet is full of people who are proving something with their running. Like this tragedy happened to me. So I’m proving I’m a good person by my resilience and my ability to do ultra marathons. good. Good on you. you know, so then someone has a loss, a physical loss. They go past the grief of the physical loss. It’s personal, but now they’re so driven to cover that personal by then using that as another opportunity to prove they’re awesome by now.

being superhuman and doing more than the average. show them, can still run a bloody marathon even though I’ve had a stroke, even though it takes me seven hours. And then I’ll be the most famous stroke surviving marathon runner that ever existed. And then the world will know I’m a good person. So, you know, it can get all kinds of crazy when people don’t deal with the insecurity and then feel driven to keep going back into more creative ways to prove and defend themselves.

Bill Gasiamis (1:14:50)

Jaemin (1:14:55)

Bill Gasiamis (1:14:58)

Jaemin (1:15:01)

Bill Gasiamis (1:15:11)

Jaemin (1:15:11)

Bill Gasiamis (1:15:14)

Jaemin (1:15:15)

characters that they’re really elite of the elite ultra marathon is their body is so extraordinarily shaped and designed for that. It’s a credit to them. they’re better suited to an ultra marathon than a road marathon. And so they’re really showing up doing the thing. But there’s a lot of people out there just entirely driven by reading David Goggins book to, you know, hard

Bill Gasiamis (1:15:51)

Jaemin (1:15:51)

by how much you can suffer.

Bill Gasiamis (1:15:57)

Jaemin (1:16:07)

he gets older and he’s still got to keep proven fighting against the younger people. There is no, there’s no exit strategy to that. That ends badly. You can’t

Bill Gasiamis (1:16:15)

Jaemin (1:16:16)

Bill Gasiamis (1:16:22)

Jaemin (1:16:23)

Bill Gasiamis (1:16:27)

Jaemin (1:16:39)

Bill Gasiamis (1:16:42)

Jaemin (1:16:44)

eradicate insecurity because what looks like purpose, there’s a lot of people out there. This is my purpose to solve this problem

Bill Gasiamis (1:17:18)

Jaemin (1:17:18)

Bill Gasiamis (1:17:30)

Jaemin (1:17:30)

what it is that you have said about yourself and is it accurate? Is it fair? Have you misunderstood? So that you can come into the world with nothing to prove and defend and then connect to purpose. It’s not even about you. That’s bigger than you. So he could just show up with kindness and just, you know, optimize for aliveness. Do the things that give you joy, do the things that are meaningful to you, not because you need it to validate, approve, support, you know, endorse you. So.

Yeah, that’s the broad answer to the question. If you’re willing to do an inquiry around the motivation, prove and defend, or if I had nothing to prove and defend, I still think about this in the same way. You know, what need am I meeting here? Am I looking to this external thing to give me certainty or significance or love? And, you know, to cover an absence of my own willingness to give that to myself. But yeah, I think.

You know, insecurity is always a conversation about perceived inadequacy. And, and I’m convinced there’s only seven versions of that. Is it that you’re bad? Is it that you are worthless? Is it that you’re stupid? Is it that you’re ugly? Is it that you are weak? Is that you’re weird or a loser? So I think then if you notice any motivation towards the opposite, I’m trying to be good. I’m trying to be smart. I’m trying to be strong. I’m trying to be normal. I’m trying to be a winner. I’m trying to be beautiful. I’m trying to be.

whatever the other one is that I missed, then it’s still insecurity driven. The motivation is to move away from something you’re sure and to drive towards the other. And so, yeah, when you really are willing to examine the structure of that accusation in the first place, you will have misunderstood and you can then free yourself from trying to not be one and desperate to be the other and just be you.

Bill Gasiamis (1:19:34)

Like the it wasn’t it wasn’t intentional at all. It was just like, okay, this is what you do. You do this for all those people. Then they become teenagers, they leave the house and it’s like, okay, what do I do now? I don’t know w who I am or what it is. The podcast was about me at the beginning. It was about me finding people that were like me to help me get through what I needed to go through because it’s isolating going through a stroke and not understanding what’s happening and

How to navigate it and all that kind of stuff. And then around episode 40 or something is when I first realized that there was way more to this than me. And it was how other people were experiencing my interviews and their feedback and response made me feel the first opportunity to say stroke was the best thing that happened to me, because I’ve now discovered my

purpose and meaning, which my children are part of.

But there just one aspect of it, and I think purpose and meaning really is to serve for me, was to serve other people and expect nothing back. And it just was what enabled me to overcome those insecurity hurdles and barriers, which were the what will people think of me? which was then initially it was about me.

And now there’s 400 episodes and I don’t really care what people think of me, it’s serving the need out there in the community. And people are people are engaging however they want to engage, and I don’t have a I don’t have an expectation on how they engage. It’s just, you know, it’s going out there, it serves the community, it makes a difference and

I don’t feel insecure about it, but I did at the beginning, which was really interesting, you know, to find myself insecure about serving the community because I started off with serving myself and it was self-serving. And

Jaemin (1:22:07)

Bill Gasiamis (1:22:09)

Jaemin (1:22:22)

Bill Gasiamis (1:22:23)

a little less genuine engagement wasn’t as high as it was when I started to make it about everyone else.

Jaemin (1:22:34)

Bill Gasiamis (1:22:39)

Jaemin (1:22:57)

Bill Gasiamis (1:22:59)

I mean, I I this could be a massive conversation. It’d go longer and longer and and it doesn’t need to I suppose as we kind of get to the end of the interview, I wanna

I I don’t wanna do this but just the nature of the format sort of requires that is that like

You know, what’s the what what’s the out? What how do we how do we wrap up a conversation about insecurity to people who may have never had the opportunity to hear somebody whose work has all been about overcoming insecurity? Like how do we wrap that up in a nice little bundle and make it a beautiful outro to to an episode like this? maybe people know the word insecurity, but it’s the first time they’ve heard about like the deeper

topics that we’ve discussed, you know, how do we kind of wrap it up?

Jaemin (1:23:59)

you know, 16,000 coaching hours, you know, nearly two decades. It’s like, it’s just so straightforward. There’s, there’s not ever an experience where someone tells me their story and I’m going, geez, wow. No, you’re rooted. That’s outside the scope. Sorry. Just like, yeah, I mean, of course it seems like a really complicated, unique experience. It’s really not. It’s a, no one escapes their childhood without getting confused about who they are. And that’s not the tragedy. It’s just the setup. So.

It’s a, there’s a gift waiting for you if you’d like it. And the gift is you get to go on a hero’s journey and be the hero in your own life and rescue yourself from your own worst opinion about you as a kid. What a fun ride that is. Like, I don’t know, is there anything more exciting than that? So yeah, it’s, it’s a solvable problem. You can eradicate it because it’s not, it’s not built on actual substance. There’s actually nothing wrong with you. It’s just the idea there’s something wrong with you.

you formed as a child and then agreed with your own assessment and wrapped it in certainty. So then you just gathered more and more evidence to prove it’s truants become a self-fulfilling prophecy. But if you’re willing to go back to the beginning, which no one wants to, by the way, you know, it’s like, can’t you just fix it from this end? Can’t you just buy a jump? I saw someone at park run last week wearing this jumper that said, are enough. Like, problem solved. I’ll shut down the

Bill Gasiamis (1:25:51)

Jaemin (1:25:52)

buy a whole bunch of these jumpers that ought to do it.

Bill Gasiamis (1:25:56)

Jaemin (1:25:59)

where you encounter the adult world and you perceived inadequacy for the very first time. And there’s always a very first time. It’s not where you started, but there was a catastrophic moment in your childhood where you went, my goodness, there is a lack, a limit and inadequacy. And the fun of it is you can narrow the field search. You’re only looking for one or more of seven things. Like it’s all in there and no one escapes that. So if you’re willing to have a look at it, you can actually have a look at it. You can survive it. And more than that, you could actually

become the person you’ve always dreamed of, the person you’ve known has always been there by breaking through the confusion you’ve lived in about your own value and worth.

Bill Gasiamis (1:27:07)

Jaemin (1:27:12)

Well, it stands to hang on, turn around. Yeah. Yeah, that’s exactly right. It’s the voice, problem. I, you know, I get interviewed on insecurity all the time. This has been one of my favorite ever conversations that I’m not just saying that to you, Bill. Often I get asked questions, pre-prepared questions. Okay. Can you tell me about insecurity, Jaemin? And you’ve got 30 seconds to wrap a short form. Okay. Next question. Where did insecurity come from? And it’s like, man.

You know, it’s a difficult subject. It’s, it’s, needs a bit of unpacking, you know, so to be able to let it breathe and have a conversation like we’ve had, I think it just really gives people a window into go, hang on a minute. Maybe, maybe I could have a look at my own insecurity. Maybe it’s not too big, too scary. Maybe there’s even a gift in here. Okay. That’s interesting.

Bill Gasiamis (1:28:01)

Jaemin (1:28:08)

Bill Gasiamis (1:28:10)

Every bit of energy spent managing how you appear to other people is energy not available for rewiring and healing. If you’ve been wondering where your reserves are going, that’s a place worth looking. And the line I suspect will stay with a lot of you. Being lost and confused doesn’t disqualify you. It’s what qualifies you to begin. Now you can find Jaemin work at JaminFraser.com.

And links to all the other resources we mentioned will be in the show notes Along with his TEDx talk. If this episode gave you something, send it to someone who needs to hear it. That’s how this show reaches the people it’s meant to reach. And if you’d like to go further with the reframe Jaemin describing, have a listen to our earlier episode on post-traumatic growth in stroke recovery. Same ground.

From a survivor’s side.

Two ways to take this further. The book. The unexpected way that a stroke became the best thing that happened is available at recoveryafterstroke.com/book. If you want to work on this with me directly, I offer one on one support to a small number of stroke survivors at a time over three or six months. Rebuilding confidence after setbacks is a lot of what we do. Apply at recoveryafterstroke.com/momentum.

I’m Bill Gasiamis, thanks for being here. Keep going.

The post Losing Confidence After Stroke – Jaemin Frazer appeared first on Recovery After Stroke.

If you’re recovering from a stroke or brain injury, there’s a familiar, exhausting question that shows up once the rehab schedule is set: is there anything else a supplement, a nutrient, something that could genuinely support the brain while it rebuilds itself? Citicoline comes up in that search constantly, across nootropic forums, supplement stores, and even some hospital protocols. It also happens to have one of the largest clinical trial records of any brain-recovery compound available. So rather than trusting a product label, it’s worth going straight to what those trials actually found, including the parts that didn’t work.

Citicoline (cytidine diphosphate-choline, or CDP-choline) is a compound your body already produces. It’s a building block for phosphatidylcholine, a major structural component of neuronal cell membranes. The theory behind supplementing it is straightforward: give the brain more raw material to repair damaged membranes and support neurotransmitter production after an injury. It’s sold over the counter as a supplement (often branded as “Cognizin”), and in some countries it’s used clinically, including intravenously, in hospital stroke and TBI protocols.

This is a case where the size of the evidence base is unusually large, and the results are humbling rather than triumphant.

The ICTUS trial, published in The Lancet in 2012 with 2,298 patients, tested citicoline for acute ischemic stroke and found no significant benefit over placebo for global recovery at 90 days; the trial was stopped early for futility (PMID 22691567). The COBRIT trial, published in JAMA the same year with 1,213 traumatic brain injury patients, tested a higher dose of 2,000 mg per day for 90 days and again found no meaningful difference in functional or cognitive outcomes at 90 or 180 days (PMID 23168823). A 2020 Cochrane review pooling ten randomized trials and more than 4,000 stroke patients concluded there was little to no difference between citicoline and placebo in mortality, disability, or neurological recovery, and rated the overall evidence quality as low, noting six of the ten trials were industry-sponsored (PMID 32860632).

Here’s where the picture becomes more interesting. A separate trial gave stroke survivors citicoline continuously for twelve months, rather than just during the acute phase, and found real improvements in attention, executive function, and temporal orientation compared to usual care, along with a non-significant trend toward better long-term functional outcome (PMID 23406981). A broader 2020 systematic review across neurological conditions similarly found citicoline useful for slowing dementia progression and enhancing cognition in healthy adults, while describing its effect on TBI specifically as “unclear” (PMID 33053828). A separate meta-analysis of twelve trials found citicoline significantly improved functional outcomes overall, even while showing no significant difference on several other individual outcome measures a genuinely mixed result rather than a clean positive or negative (PMID 28458415).

The pattern that emerges: as a short-term rescue treatment for acute stroke or acute TBI, the largest, best-designed trials say no, it doesn’t move the needle. As a longer-term support for post-stroke cognitive function, taken consistently over months, there’s a more modest but real signal.

Citicoline is not an acute miracle treatment, and the largest trials in the field say so plainly. If you were hoping for a supplement that meaningfully changes outcomes in the days or weeks after a stroke, the evidence doesn’t support that expectation. The more genuine finding of better attention and executive function with twelve months of continuous use comes from a single open-label trial that wasn’t blinded, so it deserves a more cautious read than the large, definitive negative trials.

There’s also a dosing gap worth knowing about before anyone assumes a supplement bottle reflects the research: clinical trials used 500 to 2,000 mg per day, often for months, while most over-the-counter citicoline products are dosed at 250 to 500 mg per day, meaningfully lower than the doses that produced the modest cognitive signal.

Ask your neurologist or doctor whether citicoline makes sense for your specific recovery stage. Acute stroke support and long-term cognitive support are different questions with different evidence behind them.

If you’re considering a supplement, check the label dose against what was actually studied. A product dosed well below 500 mg per day is not comparable to the trials that showed a cognitive benefit.

Search “ICTUS citicoline,” “COBRIT trial,” or “citicoline cognitive stroke” on PubMed yourself, and form your own view. The honest picture here is nuanced enough that it’s worth reading past the marketing copy.

The value of citicoline, if it exists for you, isn’t as a substitute for rehab, sleep, movement, and nutrition; it’s a small addition on top of everything else you’re already doing well, chosen because you understand the actual trial record rather than a supplement label.

For the broader framework I used to separate genuine evidence from supplement hype throughout my own recovery, see my book: https://recoveryafterstroke.com/book. If breakdowns like this one are useful to you, the Recovery After Stroke Patreon (https://patreon.com/recoveryafterstroke) directly funds more of them.

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 Citicoline for Brain Recovery: What the Major Trials Actually Found appeared first on Recovery After Stroke.

If you’re recovering from a hemorrhagic stroke or a ruptured aneurysm, you’ve probably noticed that most “brain health supplement” advice online is written for the other kind of stroke: the clot type. It rarely addresses what’s actually happening inside a bleed injury: blood breaking down inside brain tissue, swelling, and a wave of secondary inflammation that can do as much damage as the bleed itself. So when someone in this community asked whether there’s any real research behind supplements for healing the brain after a bleed, it was worth digging into properly. One compound kept surfacing: curcumin, the active constituent in turmeric.

Curcumin is the primary bioactive compound in turmeric, long studied for its anti-inflammatory and antioxidant properties. It’s an unusual candidate for brain-bleed research because most stroke supplement research focuses on ischemic stroke clots where the biology is different. A bleed involves blood pooling in or around brain tissue; as red blood cells break down, iron released from hemoglobin triggers an inflammatory cascade that increases swelling and pressure inside the skull. Anything that can interrupt that cascade is scientifically interesting, at least in principle.

The research specific to bleed-type brain injury is more developed than you might expect, but it comes with an important caveat covered below.

In animal models of intracerebral hemorrhage, curcumin reduced swelling by blocking aquaporin-4 and aquaporin-9, water-channel proteins involved in brain edema, and by calming the NF-kB inflammatory pathway that drives secondary damage after a bleed (PMID 26119880). A separate mouse study found that curcumin given within six hours of an induced brain bleed helped shrink the resulting hematoma, reduced inflammatory gene activity, and improved neurological recovery scores compared to untreated animals (PMID 21417704).

The finding most relevant to aneurysm-type bleeds specifically comes from a mouse model of subarachnoid hemorrhage, the same category of bleed caused by a ruptured aneurysm. Curcumin, administered shortly after the bleed, reduced brain water content and improved neurological scores, apparently by protecting the integrity of the blood-brain barrier (PMID 27979493).

On the human side, the picture shifts. There is currently no published human clinical trial testing curcumin specifically for hemorrhagic stroke or brain-bleed recovery. What does exist is human evidence in an adjacent area: two separate placebo-controlled trials in older adults found that a bioavailable (“lipidated”) form of curcumin improved working memory and helped prevent the cognitive decline seen in the placebo group over time (PMID 27102361; PMID 32512782). That’s genuinely encouraging evidence for brain health broadly, but it is not the same as proof that curcumin aids recovery from a bleed specifically.

A 2024 systematic review pooling curcumin and traumatic brain injury research examined eighteen studies. Every one of them was an animal study (PMID 38798711). That single fact is the most important piece of context in this entire topic.

Here is the line between promising and proven: everything specific to brain-bleed recovery hematoma size, inflammation, neurological scores after hemorrhage comes from mouse studies, not human trials. Mice are not small humans, and preclinical results routinely fail to replicate in people, particularly in stroke research, where decades of promising animal data have not translated into approved acute therapies.

There is also a safety consideration that matters more here than in most supplement discussions: curcumin has a mild blood-thinning effect. If you are recovering from a bleed, on anticoagulant medication, or scheduled for any procedure, that is not a detail to skip past; it is the single most important thing to raise with your medical team before considering curcumin or turmeric extract in any form.

Ask directly about bleeding risk before considering any curcumin or turmeric supplement, especially if you are on blood thinners or still in the early recovery window after a hemorrhage.

Ask whether the standard turmeric found in food or basic capsules is even comparable to the “bioavailable” or “lipidated” curcumin formulations used in the human trials. Standard turmeric is poorly absorbed, and the studies that showed a benefit did not use it.

Ask your doctor, or check ClinicalTrials.gov yourself, whether any human trials specific to your diagnosis are currently recruiting or have published results since this was written; the evidence base here is still moving.

The goal isn’t to decide for or against curcumin based on a YouTube video. It’s to walk into your next appointment with a specific, well-informed question instead of a vague one about “brain supplements” so your medical team can give you a real answer.

If you want to go deeper on evidence-based approaches to stroke recovery, my book covers the broader framework I used to rebuild my own recovery plan: https://recoveryafterstroke.com/book. And if this kind of research breakdown is useful to you, the Recovery After Stroke Patreon (https://patreon.com/recoveryafterstroke) directly funds more of it.

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 Curcumin and Brain Bleed Recovery: What the Research Actually Shows appeared first on Recovery After Stroke.

In 1987, Dr. Robert Hedaya found an office he loved. It overlooked a stream and a forest, and it had a balcony. Within about an hour of arriving each morning, he would become tired and mentally foggy, something he describes as unlike him. It took him time to work out what was happening. The building had mold.

He is a Clinical Professor of Psychiatry at Georgetown University Medical Center and a pioneer of functional medicine psychiatry. He had spent his career studying why brains underperform. And he still didn’t see it until it was affecting him personally.

That story is worth sitting with, because it goes to the heart of a question most stroke survivors eventually ask: if I’m doing the therapy, the exercises, the sleep, the diet, why am I still stuck?

When Dr. Hedaya returned to Recovery After Stroke for his third conversation with Bill Gasiamis, the topic was not a new treatment. It was the opposite: the things that get in the way of treatments already working.

His argument is structural. After a stroke, the brain rebuilds by growing new connections between neurons. That process is physical. It requires materials, energy, and an absence of interference. If something is interfering, no amount of repetition in a rehab gym will overcome it.

So the useful question is not only what helps my brain recover but also what blocks brain recovery after stroke and whether any of it is happening in your own house, your own mouth, or your own bloodstream without anyone having looked.

Dr. Hedaya raised three: mercury, mold, and Lyme.

Picture a neuron as a tree in winter: a trunk with branches extending outward. After a stroke, under the right conditions, neurons grow new branches to make new connections.

To do that, the cell has to lay down a structure for the new branch to grow through. It uses a protein called tubulin, small oval molecules that link together into a tube, the way Lego pieces connect to form a ring.

Mercury interrupts that linkage. Dr. Hedaya points to footage from the University of Calgary, filmed in 1999, showing the process under a microscope: the growing nerve branch shrivels and retracts within seconds of mercury exposure. It runs about two and a half minutes and is worth watching, because seeing it is more persuasive than reading about it.

Where does mercury come from? Two main sources. Dental amalgam fillings, the dark grey ones, were largely phased out from roughly the 1970s onward, which means people now in their fifties and sixties are the most likely to still have them. And fish. Mercury accumulates up the food chain, so large predatory fish such as tuna and swordfish carry substantially more than small fish. Sardines, anchovies, herring, and mackerel carry very little, and bring DHA and B12 with them, the raw materials neurons need.

Testing involves a baseline urine sample, then a challenge dose of DMSA (a sulfur-containing compound), then a second sample. A jump between the two indicates mercury was being stored and is now being pulled out.

If you have amalgam fillings removed, Dr. Hedaya is emphatic that it should be done by a biological dentist who follows a protocol: preparation with sulfur-containing compounds beforehand, a dam in place during the procedure, and rinsing afterward. Removal done badly can expose you to more mercury than leaving it alone.

This is his strongest claim, and he states it without hedging: he has not seen anyone fully recover from a neurological problem while living in a mold-exposed environment. His estimate of the ceiling is around fifty percent improvement.

There are two separate things at work. The spores the visible organism. And the mycotoxins, which are molecular, airborne, invisible, and travel far beyond the patch you can see. They inhibit mitochondria, which is how cells produce energy, and they increase oxidation, which is hard on neurons.

You cannot rule mold out by smell or by looking. Dr. Hedaya has every patient run an ERMI test Environmental Relative Mold Index. You mark ten areas in the home that don’t get cleaned, wipe them down, leave them for a month, then collect dust with a supplied cloth and send it to a lab. He uses Mycometrics.

The second test asks a different question: is your immune system actually reacting? A lab such as MyMycoLab measures IgE (an immediate response, within minutes to hours) and IgG (a delayed response that can begin a day or two later and persist for weeks). You then compare which molds are in your home against which ones your immune system is responding to: Aspergillus, Cladosporium, Chaetomium, Stachybotrys, and others. In Dr. Hedaya’s experience, the two lists usually overlap.

Remediation is where it becomes expensive and inconvenient. Cleaning the visible growth achieves little on its own. You have to find the water: poor grading, a roof leak, blocked downspouts, a badly installed HVAC system, damp ductwork, because if the water source remains, so does the mold.

As Bill put it in the conversation: there is no point putting a year of work into a rehabilitation program and then walking out of it into a moldy house. The cost of remediation is real. So is the cost of never getting past fifty percent.

Lyme is a close relative of syphilis, which was historically called the great imitator because it could present as almost any disease. Lyme behaves the same way, and a single tick can carry around twenty pathogens that affect humans, including Bartonella and Babesia, both of which drain cellular energy.

Dr. Hedaya’s issue is with the testing. It relies on antibodies, and antibodies take weeks to develop, so testing soon after a bite returns a negative that means nothing. The result is also reported as a binary against an optical density threshold: above the cutoff you have it, below it you don’t. His comparison: a blood glucose of 120 is not diabetes; 121 is. The line does not reflect biology.

He also rejects the common reassurance that a tick embedded for under 24 hours is safe. His word for it was “insanity.”

Asked which of the three to address first, his answer was immediate: mold.

Mercury needs no test to begin acting on; switch to smaller fish, eat more cruciferous vegetables, garlic, cilantro, and greens, and you are doing something useful whether or not you had a problem. Test in six to twelve months if you want to know.

Lyme comes last, unless you have had a recent tick bite. And mold has to be dealt with before Lyme treatment is worth attempting.

Dr. Hedaya’s advice here is practical, and it applies well beyond this topic. Don’t arrive with a theory. Arrive with a literature review.

He suggests using SciSpace over PubMed; ask it for a literature review on the effects of mold on the human nervous system, and it will assemble one in fifteen or twenty minutes. Print it, along with a couple of the underlying papers.

Then add the step most people skip: ask it for the counter-argument. Ask why mold might not be a factor in brain function. You are not there to win. You are there to have a real conversation, and a doctor is far more likely to engage with someone who has already tested their own position.

If they refuse outright to order the testing? His view was blunt: find another doctor.

None of this replaces rehabilitation. It removes the obstacles to it.

That distinction matters, because the work you are already doing is not wasted; it may simply be running into something invisible. Checking your fillings takes a minute and someone willing to look in your mouth. Testing your house takes a month and a cloth. Neither is a treatment. Both are ways of making sure the treatment can do its job.

This is the third conversation with Dr. Hedaya on this show. The first covered photobiomodulation and laser therapy (https://recoveryafterstroke.com/photobiomodulation-stroke-recovery/). The second covered hormones, thyroid function, and fatigue (https://recoveryafterstroke.com/hormones-and-stroke-recovery-dr-robert-hedaya/). Both are useful companions to this one.

If you want a fuller framework for thinking about recovery, Bill’s book The Unexpected Way That A Stroke Became The Best Thing That Happened walks through ten tools for recovery and personal transformation. You can find it at https://recoveryafterstroke.com/book.

And if this show has helped you, you can support it financially at https://patreon.com/recoveryafterstroke.

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

Related links:

Dr. Hedaya’s practice

The post The Things Getting In The Way Of Your Recovery – Dr. Robert Hedaya appeared first on Recovery After Stroke.

Then, on a morning in 2017, Ben woke up with his left leg buzzing like an electrical current, from his hip to his toe. He dismissed it as sciatica, worked out to try to shake it off, and drove himself to a doctor’s appointment while slurring his words. By the time he reached his physician’s office, she recognized what was happening immediately: Ben was in the middle of a stroke.

What followed wasn’t just a physical recovery. It became the beginning of a profound psychological reckoning one that reshaped how Ben understood himself, his marriage, and the two very different versions of the man he’d been his entire adult life.

When people talk about the effects of stroke, the conversation usually centers on physical deficits: weakness, speech difficulty, mobility. Less discussed but just as real for many survivors are the personality changes after stroke that surface in the weeks, months, and even years that follow.

For Ben, this didn’t show up as a dramatic before-and-after moment. It took roughly six months before he began to notice his own cognitive shifts, and years more before he could name what he was experiencing. “I feel like two different people,” he eventually admitted to himself, a recognition that came into sharp focus only after his wife, Helen, described what she called his “Jekyll and Hyde” pattern: a caring, grounded version of himself, and a sharper, more reactive one that could surface without warning, particularly under emotional pressure.

Ben also discovered something else in the process something many survivors don’t expect. Before his stroke, he says he operated almost entirely on three emotions: happy, sad, and angry. It wasn’t until his wife introduced him to a “feelings wheel” years after his stroke that he realized how narrow his emotional range had actually been. That flattened emotional landscape, paired with a striking absence of guilt or fear around risky behavior earlier in his life, points to something researchers increasingly recognize: strokes can affect not just movement and speech, but emotional regulation, impulse control, and self-awareness, particularly when the affected regions touch circuitry involved in processing feeling and consequence.

One of the more striking parts of Ben’s story is how he came to understand his own symptoms. Watching a 60 Minutes segment on a military veteran with PTSD, Ben recognized his own thoughts, words, and behaviors reflected back at him patterns his psychologist at the VA had already been treating with PTSD-informed techniques, without Ben fully grasping why. “That’s when I realized my family suffered the stroke as much as I did,” he said.

This overlap isn’t unusual. Post-stroke psychological symptoms hypervigilance, emotional reactivity, difficulty processing what happened can closely resemble trauma responses, even in survivors who never experienced combat or acute crisis in the traditional sense. Recognizing this early, and getting connected with the right kind of psychological support, can make a meaningful difference in how survivors and their families move through recovery.

“That guy that I was, that guy’s gone. I am not going to be that guy ever again.” — Ben Sautter

Today, Ben and Helen are reconciled. He describes himself as calmer, more deliberate, and a better listener than he was before his stroke, not despite the personality changes it triggered, but in some ways because of the self-awareness they eventually forced him to confront. As he put it plainly: “We would not be having this conversation if I hadn’t had a stroke.”

If you or someone you love has experienced personality changes after stroke emotional flatness, increased irritability, impulsivity, or a sense of feeling like “two different people” you’re not imagining it, and you’re not alone. These changes are a recognized part of many stroke recoveries, and they respond well to the right combination of professional support, honest communication with family, and time.

Ben’s full story, including his path through incarceration, his stroke, and the years-long process of understanding his own mind, is available in The Unexpected Way That A Stroke Became The Best Thing That Happened, where survivors share the tools that helped them navigate recovery, available at recoveryafterstroke.com/book.

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.

Bill’s Book: The Unexpected Way That a Stroke Became the Best Thing That Happened

Highlights:

00:00 Introduction – Personality Changes After Stroke

Transcript:

Bill Gasiamis (00:00)

But this episode isn’t really about the stroke itself. It’s about what the stroke uncovered. Ben spent decades living what he now calls a Jekyll and Hyde existence, including a period of incarceration for drug trafficking that he says he felt no guilt over at the time. And after his stroke, that started to change. We talk about emotional flatness, PTSD like symptoms he didn’t recognize until years later.

The marriage he nearly lost and the memoir he wrote in just ten weeks that finally helped him understand himself.

Before we get into it, if you haven’t already, check out my book, The Unexpected Way That a Stroke Became the Best Thing That Happened, over at recoveryafterstroke.com/book. And if this show has helped you, you can support it at Patreon.com/recoveryafterstroke, and you can help me keep it going so that we can get to one thousand episodes.

If you’re feeling stuck in your recovery and want more structure and one-on-one support, I also offer a coaching program called Momentum. You can find out more at recoveryafterstroke.com/momentum. Now let’s get into it. Here’s my conversation with Ben.

Bill Gasiamis (01:42)

Ben Sautter (01:45)

Bill Gasiamis (01:49)

Ben Sautter (01:55)

Bill Gasiamis (02:15)

Ben Sautter (02:23)

Home life was pretty good. My wife and I were struggling a bit before I had my stroke. but we were a close family. And and work was good. I I I’d progressed up into mid-level management and I I had great great people, great staff underneath of me, and we got a lot of good work done for the city and had a lot of fun at work.

work was going good. Everything was going pretty good.

Bill Gasiamis (03:25)

Ben Sautter (03:36)

Bill Gasiamis (03:51)

Ben Sautter (04:00)

To my toe. And I didn’t comprehend. I was thinking it was like a sciatic something because I had a little sciatic pain from time to time in my right side, even though I knew this wasn’t the same, but I didn’t have the cognitive awareness of what was going on. And so I I worked out in the middle of it thinking maybe it was.

muscles in my back and if I exercise did go away and and it didn’t when I and I went on into work and my my mechanics were nervous. I I was starting to slur my words and and I I kind of felt it. I a I asked him I think if I was slurring my words

And they just kind of smiled at me. And I went back up to my office and then another one of my other supervisors came in and he sat down. He could tell something wasn’t right with me. And then he left and they were all getting together to come and check me out, and I left. I I had a a meeting, or not a meeting.

I had a doctor’s appointment out at the VA Fort Harrison at for 7 30 that morning. And so I was I was late and I think I d I think my doctor called me and I was on the road driving out there and she I told her kind of things were funny and what was going on.

And she said, Well, you need to get out here, get a ride out here. I said, Well, I’m driving. She said, God, no. I th she pretty well could tell she thought I was having a stroke right there. And I drove out there, I went upstairs to see her and they took me right down to the emergency right there.

Bill Gasiamis (06:39)

Did they immediately diagnose that you were having a stroke?

Ben Sautter (06:47)

I I don’t really remember what they thought right at the time, right at that moment when I was in the emergency. I know a couple hours later they came to me and there was no doubt about it. They they knew then they had speech therapists in and a neurologist in the room and that’s so it took a couple hours to for a

sure diagnosis that I was in the middle of a stroke. Best I remember.

Bill Gasiamis (07:27)

yeah, pretty common that you’re not gonna remember exactly what was happening at that time. Things were compromised. That makes complete sense. how long before well rather at some point you’re told that you had a stroke, how do you take that information?

Ben Sautter (07:48)

I knew some things were going on, but looking back I can tell I just didn’t have the the awareness of what was happening to me, even though I knew it. but it it just didn’t feel serious to me.

Bill Gasiamis (08:34)

Ben Sautter (08:36)

asking myself questions even though within a week’s time I was at VA Salt Lake to have surgery on my carotid artery. So all that happened and I was still it’s not that I was in denial. Well, I didn’t think I was, but now looking back, I that could have been what it was.

But but I was aware. I knew it happened. Gosh, I had surgery. I I understood it all. I saw the MRI. I saw the mark on my brain. I had the surgeries I said. but I it it just the seriousness of it didn’t sink into me. Cause within

Bill Gasiamis (09:50)

Ben Sautter (09:50)

Full tilt. They gave me they said, go ahead. So that kinda helped me believe that I the word what what I said, I dodged a bullet is how I put it. And even though I didn’t really dodge the bullet.

Bill Gasiamis (10:19)

Ben Sautter (10:40)

my leg got real heavy. I had to like I say, I could it didn’t show that I was limping or anything, but I had to work at that to not let it show. I had to make sure I high stepped kinda so my toe didn’t drag and I didn’t trip. I had to be very well aware of that to make it look like I was okay.

But but really physically it didn’t show.

Bill Gasiamis (11:43)

what you had seems to be a catalyst for some change in your life. Like what occurred to you, the stroke, the hospitalization, the challenges that you had to come seems to be a catalyst for change in your life. Before the stroke in twenty seventeen, you said your wife and yourself were going through some difficult times.

but you were busy at work, you had a a whole bunch of other things going on. but there’s another side of you, there was another side of you at some stage that you were living a life that you were living that’s not quite the run of the mill standard lifestyle. Tell me a little bit about that. And was that lifestyle that you’re gonna to tell us a little bit about now? Was that something that you lived until your stroke?

Ben Sautter (12:36)

I feel like two different people. And it wasn’t until after the stroke, I think, that I really asked that heart or asked that question, or said that to myself, that I feel like two different people. And that came from

questioning the things I did when I was younger. I was pretty wild guy and I did things that didn’t seem like me, yet I know I did all those things. Well hell I I got arrested, went to prison. So I know I was doing stuff that I shouldn’t have been doing. But back then it was

Pretty easy to do. And I it it wasn’t, it didn’t feel like me doing it. so after the stroke, I really started asking questions, trying to, trying to look back to understand. And I never got that understanding until I wrote that book last year. And then it all just poured out.

And I could see the dual personality and and and I still am that dual guy. My wife is able to recognize that more now, and when she s tells me about it, I can really see it when she explains it, especially what I say. I I say things

I say things that I don’t mean that aren’t me, that I don’t understand why I say those things. It’s and I named it Hyde. And it Hyde speaks different than I do, than Jekyll.

Bill Gasiamis (15:11)

Ben Sautter (15:16)

Bill Gasiamis (15:28)

Ben Sautter (15:38)

Bill Gasiamis (15:42)

U or it was another U.S.

Ben Sautter (16:14)

I have to say I don’t really understand yet where I was back then. It I I had to that it had to be that disassociation because I was a legitimate guy. I worked, I had jobs, I had good respect from people. I I was a legitimate man all day long every day. And I just slip out and

Did stuff.

I I d I had no feelings about it. I I wasn’t I never felt guilty about doing anything. I never had no shame, no remorse. I still don’t. I don’t feel those feelings. They just aren’t in me. Even after the book, after writing that and starting to understand that I don’t have those feelings, which I still don’t, but way back then.

I didn’t give a s I didn’t give a first thought to any of that illicit stuff I was doing. It was opportunity and I just went and did it. Didn’t give it a thought.

Bill Gasiamis (17:31)

Ben Sautter (17:56)

and keep myself out of trouble, which all those big crimes were the problem, but little things, I I went hunting, I was a poacher, I I trespassed, those types of things. I was very careful not to be caught speeding in a car or any of that, drinking and driving.

a little bit I’d find myself doing that and that was a difficult thing to overcome of to quit drinking and and so I was I’d find myself drunk behind the wheel and I I finally again made a conscious decision decision but it took a little time to work out of that to finally draw a line in the sand. In fact it wasn’t

until a year or two after I got married that I finally just quit drinking completely. And that was good. That was a good move. so it was w I can’t say that it was a struggle, but it was risky for me out of prison that I didn’t get caught at those littler, less severe law breaking.

Bill Gasiamis (19:53)

Ben Sautter (19:54)

Bill Gasiamis (19:55)

It sounds a little bit sociopathic and it sounds like perhaps there was a some kind of a what people might describe as a psych as a psychiatric kind of challenge or issue there. Has that ever come up in a conversation with anybody?

Ben Sautter (20:41)

Where you land on some of these, and I thought, well, happy and sad and and angry. And that’s about as far as I went with it. And once in a while I’d feel a little something, but not really very much. So so that’s when I learned I was operating on three emotions. That’s all I ever had. So that really showed the compartmentalization and the disassociation right there.

psychopathic or psychopath has never come up even with my psychologist. she never identified that but I just saw her for the first time since I read wrote the book a few weeks ago and gave her a copy of the book and she was a little bit wide-eyed and surprised.

at the book and she’s reading it. So what kind of conversation we’re gonna have now will be really interesting to go back and see her. But but answer to your question, no, psychopath, no, just compartmentalizing

Bill Gasiamis (22:26)

Ben Sautter (22:28)

Bill Gasiamis (22:31)

behavior being inappropriate. Whereas psychopaths are completely different, like they have no empathy, no nothing, right? There’s nothing there. So that’s a that’s kind of not where where where I was headed. I wasn’t asking

Ben Sautter (23:06)

Bill Gasiamis (23:07)

take my brain offline for a little while and it allowed me to connect with other parts of my body. Specifically, I talk about connecting with my heart and it made me more empathetic and more able to kind of access what what my values were rather than what my head thought was the right thing to do or what what my head thought was the right approach or the right way to go about things. So

it seems like the stroke has played some kind of a similar role in your ability to reflect on your past in a different way, th in a more associated way compared to what you had done before. Is that accurate?

Ben Sautter (24:07)

So so yeah, the stroke has I the stroke has been good for me in in a lot of ways, cause causes some of those difficulties without a a doubt, but I think my wife would agree that I’m a better person, despite the change in moral compass after the

my incarceration, but I still was a Jekyll and Hyde, and I still am today. I she can see me come in and out of it much quicker than I have any idea. not necessarily on a daily basis, on an hourly basis and in conversation. She can see by what I say.

Bill Gasiamis (25:27)

Ben Sautter (25:37)

rein that in to calm myself down and and just listen better, be slower, more deliberate, more purposeful. All all all of those things are much better for me. In fact, I didn’t have any of that before before the stroke. I was full tilt on everything. I I thought I did. I thought I was very considerate, concerned, and listened, but in comparison, no.

That wasn’t me.

Bill Gasiamis (26:37)

Ben Sautter (26:44)

Bill Gasiamis (27:04)

Ben Sautter (27:08)

Bill Gasiamis (27:31)

Ben Sautter (27:55)

perfect example is if I I d slip up, do something wrong and Helen will bring my attention to it, I’ll say, Well, I just did that to see if you’re paying attention. So I I try to deflect things. I I have that I definitely the inferiority or or or and on myself. We’re all our own worst critic, of course, and and I I really feel

self conscious. I know my deficiencies and

I I go back and forth. I I know my deficiencies and I live with it. I’m okay with it. But sometimes if someone says something to me, Helen, one one time it’s okay and I get by it, one time it’s like it hits and it hurts. And and I I react, I try to deflect, I say things, hide comes out of me and and says things like to hurt back.

And and so I’m and she’s getting better about not letting me do that. And the sooner she says something now, if she says something right away, I go, yeah, sorry, I did say that. Whereas before I didn’t remember saying things and I would say that. She’d say, You she’d wait too long and then tell me you said something. Well, I wouldn’t say that, I don’t think those things.

That’s Jekyll saying, I I I don’t even think that. I I I didn’t say that. You took it wrong. Now I’m more believing that Hyde would say those things and and if she comes back quick enough and I can I’m right there. I’m like, yes, yeah, you’re right. And I I can apologize, but I’m getting better and better at not saying those things.

and and catching myself now, which is big, to to stop it before it happens. So I I as we talk through this, I am starting to be more aware of Hyde, what he says, what he thinks, and certainly what he does. I I conquered that long time ago. But what he says and what he thinks, I’m starting to catch that before I go wrong.

Bill Gasiamis (30:36)

There’s a an underlying cause, something that happened earlier on in life that caused them to take on a certain persona or to be a certain way or to get through a certain difficult time in their upbringing or the circumstances by which they found themselves in. Did you have a origin story? Was there something that you can think back at that perhaps that led you to take the on another persona in certain situations, or is it just how you’ve always been?

Ben Sautter (31:33)

And he was so a lot of fun. He taught me some of my worst habits, if not most of them. And and I followed in his footsteps. Risk was inside exciting. Terror was exciting. Being scared was fun. That’s how my dad taught me. And you add that with no feeling, no fear. you just it was easy I said earlier.

It was really easy to go do those things shouldn’t do. It was fun and and there was money in it and calculated risks. no problem. It was just no problem.

Bill Gasiamis (32:46)

Ben Sautter (33:13)

Bill Gasiamis (33:18)

Ben Sautter (33:19)

She didn’t know a lot up until this last year. she didn’t see the dual side of me. Even though we struggled, she thought it was just me being me. Now it’s so much more clear. And and she’s the one that came up with the Jekyll and Hyde when I was halfway through the book. And stories were coming out she’d never heard before.

And that’s when one day she said, You’re like a Jekyll and Hyde. And that really changed the framework of my story. And and it showed me or helped me understand myself, the the dual personality. It still took a little bit to build it through the book to get a full understanding of it and draw a clear picture, but

By the time I was done with the book, it was easy to see the dual personality.

Bill Gasiamis (34:42)

Ben Sautter (34:52)

Nice guy. I think there was a little intrigue probably from my past that I I was an exciting guy. I did a lot of things and and even though once we met, I was really trying to taper down and really trying to get a hold of myself and which I did and and w we did really, really well together for quite a few years and and then I think I wore

wore her down with that dual personality. Not think. I know I did. She finally it was too much for her and and and things kinda went south for us. We I I I can’t imagine even though I watched what I put her through, I don’t know how she lasted. she left for a lot of years after my stroke.

We split up for a lot of years and and I I’ve made some changes.

Bill Gasiamis (36:30)

Ben Sautter (36:33)

Bill Gasiamis (36:34)

Ben Sautter (36:35)

Bill Gasiamis (36:36)

Ben Sautter (36:47)

Bill Gasiamis (37:16)

me. That’s just fascinating to me that you’ve had this turnaround. And not not to say that turnarounds are complete as soon as the stroke happens or that things are easier or different or better or whatever. But like there seems to be a genuine willingness to discover what this newer version of yourself could be like and could emerge into an author, somebody who wrote book.

somebody who’s reconciled with your wife, somebody who’s admitted all these things that you’ve admitted and kind of made a concerted effort to not fall into those traps. Again, you’ve associated with things. And it’s all because of a stroke, because of a carotid artery blockage, or was it a dissection? What was it?

Ben Sautter (38:10)

Bill Gasiamis (38:23)

Ben Sautter (38:23)

Bill Gasiamis (38:30)

Ben Sautter (38:31)

Bill Gasiamis (38:33)

Ben Sautter (38:51)

But the cognitive part of it, yeah, I I’m a better I’m a better man now.

Bill Gasiamis (39:29)

Ben Sautter (39:33)

Bill Gasiamis (39:34)

Ben Sautter (39:50)

And once I started I couldn’t stop writing. I wrote this book in ten weeks and it just poured out of me and it’s nothing like I ever would have thought I could write. it has good value. It has value for anyone that reads it.

Bill Gasiamis (40:40)

Ben Sautter (40:46)

Bill Gasiamis (40:48)

it sounds like you put in work with your family, with yourself. How long have you been seeing a counselor?

Ben Sautter (41:18)

work that was for PTSD. And she would give me lessons to bring home. And they were for the for the veterans that suffered from PTSD, which I never knew anything about it. It was kind of a phantom thing for me, because I didn’t know anything. And and I’ll be honest with you here, one night on 60 Minutes I was watching a veteran with his

wife and daughter being interviewed on sixty minutes and he had the PTSD and that family was talking about him doing the it saying, doing, thinking, the exact things I was doing with my family. And that really just hit me hard. No wonder I’m doing PTSD work because the stroke is the same thing i i in a sense.

And that’s where I learned so much watching that segment that night. I learned about myself, my family. And that’s when I realized that’s when I realized my family suffered the stroke as much as I did. That came to me.

Bill Gasiamis (42:51)

Ben Sautter (43:19)

but I I didn’t suffer any any I didn’t go to I didn’t go to war. I did not go to war. I I

Bill Gasiamis (43:55)

anything like that. And and do you think the PTSD was from something else, perhaps?

Ben Sautter (44:04)

what I got from that sixty minutes segment is is the cognitive things that I was saying that and didn’t understand what the stroke did to me. I thought I was fine. I went to work back to work a couple months after I had the stroke. I worked for a couple months and I realized

I I wasn’t cutting it.

Bill Gasiamis (44:36)

Ben Sautter (44:46)

Bill Gasiamis (45:06)

standard part of the approach to helping somebody who’s a VA.

Ben Sautter (45:14)

Bill Gasiamis (45:20)

Ben Sautter (45:29)

Bill Gasiamis (45:51)

Ben Sautter (45:55)

Bill Gasiamis (46:13)

Ben Sautter (46:14)

I might be a fairly boring guy. I like to have fun. I laugh a lot. I’m not the wild guy that I was, but so so I I don’t have much anger. I don’t have much sadness. My anger y my sadness used to turn to anger. So I really had happy and angry is really what I had. I I don’t go there anymore. Life is too good for me now. I don’t

I don’t have sadness or anger.

Bill Gasiamis (46:55)

Because in Bipala they’re described as being happy and really, really kind of deep, sad extremes. But you seem to occupy a similar kind of space does that ring a bell? Did anyone ever bring that up, perhaps?

Ben Sautter (47:38)

Bill Gasiamis (48:01)

Ben Sautter (48:26)

Bill Gasiamis (48:26)

There is the there is also the I I’m trying to achieve something or get something done or I’m trying to intimidate some someone or I’m trying to you know get a child to take action somewhere where they frustrated me or whatever. So there there is a a a th this underlying purpose for anger, but also it’s a rewarding to the brain when you act out in an angry way.

Ben Sautter (48:58)

Bill Gasiamis (49:19)

This has been one of the most interesting conversations I’ve had because we’ve barely spoken about the stroke and how you experienced it and what it did to you. But it seems like we’ve spoken about it enough in that it was a catalyst to something new, something different. And often my attempt has always been in these interviews is to tell people about the fact

You know, we share a story of what life was like before stroke for people. And then we sure share the story of like what happened during the stroke time and then what happened after. And if you’re currently in the stroke moment, it’s really, really hard. You you don’t know where things are headed. There’s a lot of uncertainty, a lot of change, a lot of experiences that you never saw coming, you know, things that are happening. You might be experiencing your body differently, your cognition differently.

your hearing, your speech, it all might be different and it’s extremely full on in that moment. And the idea is, well, let’s continue with the conversation and try and move and and paint a picture of what life might be like for somebody, even though they’re going through a really hard time five, six, seven, ten years down the track, you know? And you’re in the 10 year mark and it’s taken you 10 years to get here, write a book, reflect on your past the way that you’ve been reflecting.

mend your relationships, become more aware of your behavior, the one that served you, the one that didn’t. And it’s not really a story about stroke, but it’s stroke seems to have been the catalyst for an opportunity for you to look at things a different way and for it to break certain patterns that were embedded that

now have been able to be in kind of like fizzled. You know, the edges of them were fizzled away so that something could enter and you know, like throw a spanner in the works and change the way the cogs moved. and it’s just fascinating that stroke can do that.

if we didn’t talk about that part of stroke, that good part of stroke, people might only see stroke as only ever being a terrible thing that happened to them, which I also understand if somebody feels that way, because there’s a big spectrum of how people are impacted by stroke. So I don’t wanna take that away from people who are suffering.

but you you know, like the shift and the change that you’ve had

through a stroke is just night and day, it’s phenomenal.

Ben Sautter (52:07)

It’s been a few years ago I learned that that guy that I was, that guy’s gone. And I am not gonna be that guy ever again. So I I’m looking at at the guy that I am, who I believe is a better guy than I was anyway. So that’s been a good thing. And I think that comes from my wife and from my psychologist at the VA that it it’s

There’s no more who I was, it’s who I am. And and that’s come a long ways because of that, I

Bill Gasiamis (52:51)

Ben Sautter (52:51)

Bill Gasiamis (52:52)

Ben Sautter (52:55)

Bill Gasiamis (53:10)

Ben Sautter (53:29)

are I’m gaining the numbness, the tingle’s gone. That electricity thing like your fingers in a socket, that’s all gone. The s hard stiffness is down in my lower leg and my foot, so my leg’s better. yeah physically I’m getting better, better better.

Bill Gasiamis (54:22)

Ben Sautter (54:27)

Bill Gasiamis (54:32)

Ben Sautter (54:35)

Bill Gasiamis (54:38)

Ben Sautter (54:39)

So my shadow guy facing into him head on. And been a lot of been a lot of reward doing this. This I called this therapy on steroids. writing this book was incredibly therapeutic.

Bill Gasiamis (55:14)

Ben Sautter (55:26)

Bill Gasiamis (55:40)

Mr. Hyde and me is available on Amazon. You’ll find links in the bio. And if this episode resonated with you, share it with someone who might need to hear it. And if you’re looking for more tools for your own recovery, check out my book, The Unexpected Way That a Stroke Became the Best Thing That Happened. It’s available at recoveryafterstroke.com/book.

If this show has helped you or someone you love get through their journey with stroke, you can support the show to help keep it going on patreon.com/recoveryafterstroke. And if you want to work with me directly, my coaching program Momentum offers one-on-one support and accountability for stroke survivors who feel stuck. More at recoveryafterstroke.com/momentum. Thanks for listening and I’ll see you in the next episode.

The post Jekyll, Hyde, and the Stroke That Changed Everything: Ben Sautter’s Story appeared first on Recovery After Stroke.

Kylie Ralston was 56, living alone in Sofia, Bulgaria, and getting back into shape after a divorce. Three mornings a week she ran. On the morning everything changed, she was doing a local park run with her friend Rebecca when she slowed to a walk, then tried to run again and couldn’t. “It was like the message wasn’t getting through from my brain to my legs,” she says. No headache. No fatigue. Nothing that felt like an emergency. She finished the run, registered her time, and went home. It wasn’t until she collapsed getting out of the car that anyone understood what was happening.

By the time Kylie reached hospital, she had suffered a left frontoparietal haemorrhagic stroke, a spontaneous brain bleed roughly 7.5cm across, with none of the usual risk factors. No high blood pressure. No cholesterol history. No aneurysm, no AVM. She was placed in an induced coma for four days. When she woke, she couldn’t move her right side, and she couldn’t speak.

Kylie was a permanent resident of Bulgaria, not a citizen, divorced from her daughter’s father, and living on her own. When the hospital needed someone to authorise emergency surgery, there was exactly one person available to make that call: her daughter, then 19 years old, splitting her time between her separated parents’ homes.

It’s a detail easy to skim past, but it sits at the centre of this episode: next of kin isn’t a role most of us think about until a hospital needs an answer immediately. Kylie hadn’t nominated her daughter out of any formal planning process; it simply fell to her, because she was the only adult relative in the country who met the age threshold.

Kylie’s friends contacted her daughter directly. She rushed to the hospital, and unconscious, unable to advocate for herself, her mother’s care now depended on decisions made by a teenager under enormous duress. Kylie’s first memory afterward is her daughter arriving in the ICU in a hairnet and scrubs, holding her hand, telling her she loved her.

It’s the kind of moment that rarely makes it into conversations about stroke recovery, because the focus so often lands on rehabilitation milestones: walking, speaking, returning to work. But before any of that, someone has to be legally empowered to say yes to surgery, and for Kylie, that someone hadn’t expected the responsibility for another few decades.

Bulgaria’s acute care, Kylie and her friend Nicole Nott both stress, was world-class surgery within roughly two hours of the stroke, the kind of outcome her friends still describe as a miracle given the size of the bleed. What came next was a different story. In the public hospital, physiotherapy visits totalled two sessions. There was no speech therapy. After 14 days, still unable to move her right side or speak, Kylie was expected to go home. Her partner, Guido, refused to accept it, and the couple began privately funding rehabilitation themselves.

This is a distinction worth sitting with if you or someone you love is navigating stroke recovery in a country or even a region with limited public rehab funding: acute survival and functional recovery are not the same fight, and they are not always resourced the same way.

Nicole Nott, an occupational therapist and Kylie’s friend since they were 16, found out about the stroke through a message she initially suspected was a scam. Within days she’d cleared her schedule and flown from Australia to Bulgaria. What she found in the private rehab hospital was a caring but under-trained care team, kind staff with, as Nicole puts it, “no rehab expertise.”

Nicole spent close to two weeks restructuring Kylie’s room and routine around basic stroke rehabilitation principles: approaching from Kylie’s affected right side to address her spatial inattention, built-up cutlery to force use of her weaker hand, a balloon tapped back and forth for shoulder strength, word games layered on top for speech practice, pegs and curtains repurposed into arm exercises. She also pushed back hard against hospital staff who tried to stop her from helping Kylie transfer to a shower chair or toilet, at one point being told outright she wasn’t permitted because she was a woman. Her single goal before flying home: get Kylie toileting independently again, for dignity as much as mobility. Kylie called her from Dubai airport, mid-transit, to tell her it had happened.

Fourteen months on, Kylie’s right-side weakness has largely resolved. What remains, she says, is the hardest part: expressive aphasia. “I can’t express myself like I used to.” It’s a small, telling detail of the condition that even the phrase “I can’t” is itself shaped by the aphasia; the words available to describe the loss are affected by the loss.

Both women point to what came out of the crisis alongside the hardship: Kylie’s relationship with her daughter deepened. Her circle of friends in Bulgaria proved itself in ways she hadn’t anticipated. And in the rehab hospital, her partner Guido proposed something; he told her he’d already decided before the stroke but simply hadn’t gotten around to asking.

If this episode raises questions about who is legally positioned to make decisions for you and whether that person actually knows it, it may be worth a conversation with your own family before a crisis forces the issue.

For a deeper account of navigating identity, recovery, and unexpected transformation after stroke, Bill’s book The Unexpected Way That A Stroke Became The Best Thing That Happened is available at recoveryafterstroke.com/book.

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.

When Kylie had a stroke abroad, her 19-year-old daughter became her next of kin, and a friend flew in to help her recover.

Bill’s Book: The Unexpected Way That A Stroke Became The Best Thing That Happened 
Support the Recovery After Stroke On Patreon

Highlights:

00:00 Introduction – Next of Kin After Stroke
03:47 The Day of the Stroke
08:55 Rehabilitation Challenges in Bulgaria
16:32 Coping with Language Barriers
22:08 Reflections on Healthcare Systems
32:50 Setting Goals and Achievements
38:29 Family Dynamics and Support Systems
45:36 Finding Meaning in Recovery
54:44 The Impact of Caregiving
58:22 Reflections on Recovery and Gratitude

Transcript:

Bill Gasiamis (00:00)
And one of my first horrible thoughts was, is this a dreadful hoax? Is someone, you know, is this some horrible scam? And it made me feel quite sick actually And then I rang her son who lives in Australia and he’s like, Yeah, I’m so sorry. I haven’t told you. Yes, it’s true, mum’s had a stroke.

Bill Gasiamis (00:16)
Welcome back to Recovery After Stroke. I’m Bill Gasiamis, and today I’m joined by two guests, Kylie Ralston and her friend Nicole Nott. Kylie was 56 living in Bulgaria when she suffered a left frontoparietal hemorrhagic stroke, a spontaneous brain bleed with none of the usual risk factors.

Nicole is an occupational therapist and one of Kylie’s closest friends since they were teenagers. And when she found out what happened, she got on a plane to Bulgaria to help. In this episode, we get into what it means to have a stroke far from home in a country where you don’t speak the language, and public rehabilitation funding barely exists. We talk about who becomes your next of kin when you least expect it, what it’s like to advocate for a friend inside a hospital system that won’t always listen.

And what recovery actually looks like 14 months on, before we get into it, if you want a deeper look at identity, recovery, and unexpected transformation after stroke, my book, The Unexpected Way That Stroke Became, the best thing that happened, is available at recoveryafterstroke.com/book. And if this show has helped you

And you can support it to keep me on the path of getting to a thousand episodes, you can do so At patreon.com/recoveryafterstroke

Bill Gasiamis (01:37)
Kylie Ralston and Nicole Nott, welcome to the podcast.

lovely to be here, Bill. Thanks for having us, Bill. Kylie, tell me a little bit about what life was like before the stroke. I was very active and I had a full life and I was working full time. and I was living in Sofia in Bulgaria, in my on my own, in my own apartment. I was renting, actually.

and I was getting back to fitness. So I was g getting I was running regularly. So two two or three times a week I was hitting the gym and hitting the tr the treadmill. And that had been happening for like a few month like six months or something like that. but before that I was very fit and active. What kind of work were you involved in?

I was a HR work. I was a ha HR leader and so I had my own consultancy I had a team of people that I’ve managed.

I had thirty five people, so and that they were people in Germany, Poland, Czechia, Portugal, France, so everywhere in in Europe, basically. Yeah. Wow, how how does an Aussie end up in Bulgaria with staff or clients in that many

countries? short answer is I came here with my family, so with my ex husband. and shortly after I arrived we separated and and ultimately got divorced. and I stayed on because my daughter is here. So she was only eleven at the time and I could just couldn’t leave her.

So you were living at home with your daughter? she was sharing her time between between us both. Yeah. got it. Okay. So both parents are there. So your daughter was going backwards and forwards. On the night of the stroke or on the day of the stroke, can you take us through that? What were you experiencing? Was there anything unusual that happened that made you think something was wrong? How did it go down? I was with my friend Rebecca.

And she was running ahead of me as she she was faster than me, so sh and she often often ran ahead of me. and I’d slowed down to a walk and when I started to run again or try to run again, it it was like the message wasn’t getting through from my brain to my legs. And I thought, that’s strange, that’s that’s really odd. ‘Cause I didn’t feel like tired or

anything and I didn’t have a headache and well stuff like that. and I just walked through the rest of the park run. And then when Rebecca saw me coming to the finish line, she waved me over and she said, come on, let’s go register your chip. and so I did that. and she said afterwards that

there was a little bit of fumbling with with my phone and there’s a there was a little bit of fumbling when I put my jacket on, but other than that, I just seemed exhausted from a run. do you recall after the experience of feeling exhausted from the run where you ended up? Did you need help?

Yeah, I do. So so she didn’t notice that I wasn’t talking because I n I’m normally an endless talker, so I she didn’t notice that I wasn’t talking. And she said that that that is one thing that should have alerted her to what was happening. but it it didn’t. And so I’d caught the bus to the park run and her husband was there and so he drove me home.

And I j I remember the journey home and when when we when I went to get out, I just couldn’t. And so and Mark came around to my side of the car and help tried to help me out and I just collapsed against him. And so then that so then they said, quick, something’s wrong something’s I don’t remember what they 

They they said, you know, they basically took me straight to the hospital. Yeah. And also rang Guido, my now fiance, but my partner at the time. Uh-huh. So you you went from the run, attempted to go home, and then from that attempt to get you out of the car, actually into your home, it was pretty clear that that wasn’t gonna happen and you ended up in hospital. so

Did you guys drive to hospital? Do you recall that? Yes. Yes. We do how far is it from your home? it’s pretty close. I don’t know about kilometres or time, but it’s but it’s like ten or fifteen minutes. Yeah, so it’s not too far. But they didn’t know what was going on, of course. They just knew something wasn’t right and then they figured one of the best things to do is just get it to a hospital. You get to the hospital

Do you know what happens after that? Do you get admitted? do you get tested for anything? I suppose what I’m asking is when is the first time you realise that that you’ve had a stroke? When do they report that back? When I came out of the coma. So I was put I was put into an an induced coma straight away. so I I obviously don’t remember anything of of that. and but Rebecca’s told me afterwards.

so she’s filled in the f filled in the filled in the blanks for me. and by that stage her husband thought it was a stroke. So she’s he said he said to the staff at the hospital, we think she’s having a stroke. And so yeah. So how long were you in the coma, do you know? Has somebody told you how long it was? Yeah, four four days.

Four days, okay. And do you know what kind of stroke you had? Yep. I had a left

Frontoparietal hemorrhagic stroke. Wow, that’s a good effort. So you had a brain bleed. Yep. Do they know what caused it? No. It was spontaneous and I didn’t have any of the risk factors. So I didn’t have high blood pressure, a history of high blood pressure, but admittedly I’d hadn’t tested my blood pressure immediately before the stroke. but you know

That’s un that’s unlikely to be the cause. And I didn’t have a hi a history of high cholesterol. and so they just and I didn’t have an aneurysm and I didn’t have like what’s the other thing? The An AV AVM. AVM, yeah, I didn’t have any of that. And how old were you? Fifty six. Okay. So you had a spontaneous

Bleed in the brain. That happens. People do have that happen from time to time. And sometimes they don’t have any symptoms leading up to it or anything like that. and this is the bizarre nature of like there’s an unlimited number of ways, unfortunately, for people to have a stroke. Now, you woke up in hospital four days later. What kind of deficits did you have? I couldn’t move my right side and I couldn’t speak. Okay.

Now I’ve got an idea of well, I haven’t got an idea, but my mind immediately kind of says like if you’re in hospital in Bulgaria, that’s not a hospital in Melbourne. That’s not the Royal Melbourne hospital where no shit is unreal, like it’s perfect and it’s got the highest technology and it doesn’t matter how many things we can bitch and moan about the system being here like compared to Bulgaria, my expectation is that we’re world class.

Perhaps that’s not the case in Bulgaria. Would you agree with that statement? I would have agreed before and my my my expat friends here would have agreed before, but now we’re all saying maybe Bulgaria is better than we thought. That’s brilliant. Awesome. Okay, so

As far as like medical interventions and all that type of stuff, you felt like that was handled like any other world class hospital would have handled it. Yeah. In that in that s it in that stage it was. but there’s no like that was a public hospital and there’s no there’s no public funded rehab after.

or or very li very little. So so that’s where that’s where Australia is ahead. So when you knew you had deficits, was there any rehabilitation whatsoever? Did you get any of that while you were still in hospital? Minimal. So the the physio came to see me twice. and so that’s so that’s all and I got no speech therapy and stuff like that.

and but when I was discharged from the public hospital here and went and so they they expected me to go home from the public hospital. And so Guido said she just can’t like like what what the fuck? After how many days? After how many days, how long? Fourteen.

Wow, your right side was still offline and you still had problem. Yeah. Okay. So we we just paid for paid for private rehab. got it, right. Yeah. And how long were you in private rehab for? another like two months or something like that. Right. Okay, that’s pretty cool. So i even though you couldn’t access it publicly, you were still able to

Access a private now. Are you a citizen in Bulgaria? Not a citizen, a permanent resident. Okay. So do you have are you as a result of the fact that you’re a permanent resident and not a citizen, do you have different things that you are able to access because of your status? No. no. I’m it’s I have the same rights as a citizen. The only one the only right I don’t have is

I’m I’m not able to vote here and I’m not I’m not able to work in other EU countries. Got it. Okay. So that’s pretty traumatizing, the whole experience, and then to have to deal with overcoming your left side and your speech deficits after the two month mark, roughly where were you at where you where you are now? Because you kinda sound pretty good. Okay.

No, yeah. no and and the other thing the other thing that I must say about Bulgaria is I don’t speak Bulgarian. very very little. So that was a problem. Yeah. I can imagine, yeah. so maybe you can come in here, Nicole, and and talk about where I was at when you came to see me, because that was very very very early on in my

in in the private rehab hospital. Yeah, Nicole, tell me a little bit about what it’s like to receive a phone call to find out that your friend has had a stroke. I was absolutely hellish. the way I found out is I got a message through social media from someone saying, Hey, I’m a friend of Kylie’s and she’s in hospital in Bulgaria.

And one of my first horrible thoughts was, is this a dreadful hoax? Is someone, you know, is this some horrible scam? And it really, you know, it made me feel quite sick actually thinking this is that’s not someone I know. It does look like a name I’ve seen in Kylie’s kind of social media world. And then I rang her son who lives in Australia and he’s like, Yeah, I’m so sorry. I haven’t told you. Yes, it’s true, mum’s had a stroke. and I was kind of

beside myself because by training I’m an occupational therapist, but Kylie and I have known each other each other since we were about 16. and it was really hard to get the information that I wanted as a friend, but also as a health professional. I was wanting to understand what kind of stroke is it? Where is it? What’s the rehab? What can we do? How’s it going? And at that stage the information that I had was that

you know, it was really seriously affected the speech part of the brain and obviously the hemiplegia, the weakness down the right side and knowing that Kylie was right handed. so, you know, it’s the friendship part that your heart’s breaking and it’s also the therapist part that’s wanting the information to be able to, you know, reconcile it for myself, professionally what that was going to look like as a consequence for Kylie. Yeah, and you’re so far away, so you really can’t

do anything and kind of have to like take information second hand, third hand, and be kind of in a position which is really uncomfortable for, I imagine, a friend, but also a therapist, right? So as an occupational therapist, that’s not the information you work on. You work on actual facts, scans, reports, like a whole bunch of things. So are you also playing it out in your mind? Are you kind of

Doom thinking it, like are you how does it affect you personally? I think for me I was all I was really very conscious of not stressing other people. So like friends, family, because sometimes when you are a health professional, you know, you have knowledge and information and you know, you sometimes you you’re keeping that to yourself to some extent because you do know what can happen to people and you do know what consequences can be. So I was really trying not to ask too many questions of people as well.

but I was seriously desperate for information. And so I remember I’d gone to a party and I didn’t really want to go because I was actually, you know, upset and stressed for Kylie. And I did end up going to a party and during the party I was really kind of outside having a bit of a downer really by a campfire. but I got a phone call or a message to say that I think you’d

said some words, Kylie, and were kind of waking up. so you’re still in the acute hospital then and that you’d been able to move your leg a little bit, I think. Yeah. And you know, joy in that moment. And yeah, I felt very, very far away. And then

What happens over the next few days? Like do you guys continue to communicate somehow? Do you keep getting information? Are you being updated? Yeah. Yeah. I wasn’t able to get my into my phone or my any of my devices. So I wasn’t able to able to because I couldn’t remember my password, right? And so and and I tried like d

different ones and I you know I just got locked out. So and when I was able to get in then that made it it made it easier t because I was able just text short messages. So so Nicole and I kept in touch that way. and before

Before you came, Nicole, I think I was talking, but not not not as well as I am now. Yeah. So was it, Nicole, in your mind, you were always going to fly over to Bulgaria and beath your friend? Or did you guys have to work that out? Like what happened now? It’s so cool that you get to have a somebody in your corner that is also a

Fred, but also a medical professional in the exact field that you’re struggling with now. Right. Like how do you just drop everything and go overseas and be with your friend? Yeah, well, very grateful that I had an up to date passport. So that was that was a good thing. Kylie, it was interesting because the texting, like if I go back and look at that history, it’s like you can see the progress in the texts. So you can see that Kylie

was using kind of more single words and having struggles with spelling and putting sentences together. And then over time, you know, they became more fluent. but the thing that happened was that Kylie and I were talking and she was able to you know, she got some speech back and we were talking. And she was just saying about the rehab care that the the the kind of caring staff

just seemed to have no rehab expertise. So the physios were amazing. I think they were great. There was no active speech therapy for Kylie. I think we ultimately found an English speaking speech therapist but who still had Bulgarian as a first language. And there’s very few occupational therapists in Bulgaria, seems to be some expats. And Kylie was talking to me a jab about just

you know, really basic things like not being taken to the toilet. and that’s probably what broke my heart. It’s like I cannot leave her in bed, not being able to go to the toilet. I just can’t do it. And so I just said to my partner, I think I just need to go to Bulgaria. And luckily I’m self-employed. So I just kind of cleared my schedule, got on a plane and yeah, I was just

I suppose I’m incredibly grateful to have the skill. incredibly grateful to have the financial ability to do it. and yeah, and the skills to do it. And you know, you don’t always get an opportunity in life to do the right thing, or sometimes you don’t make that decision and later you think, Why didn’t I do X, Y, and Z? I try not to live my life like that. I try to actually do those things. So, yeah, I got on a plane and

basically arrived at the airport, got on a train straight out to see Kylie at the Rehope Hospital. You’re a real superhero. I’m very grateful to Nicole. Yeah. I rec you know, my story is kind of well, it has a similar kind of thread to it. I one of my best friends is a radiographer and he was a radiographer at the Royal Melbourne Hospital where

I was a patient for nearly two and a half years because I was in and out with a number of brain hemorrhages. I had three in total in the same spot, but over two and a half years, then I had brain surgery. And I can’t tell you how many scans I had, but being a radiographer, he was the one who was in the room taking the photos through the MRI. Yeah. And then he would come out.

And he would tell us what he saw in the RI, which was against the rules. that’s why I won’t name him. But but that meant that we didn’t have to wait a month to get our results and the the meeting for the results was just more of we’ll go through the process and and have the meeting. Yeah. And and and it was like and I regretted my life

when at school I used to throw his books on the roof of the canteen just to mess with him going to s to class late to get in trouble. and I’ve apologised profusely for that and thanked him every day for the fact that, you know, he was able to lend his well, you know, he was able to be in the room. He was able to have that conversation with us and he was able to ease our minds.

over that two and a half year period and then you won’t believe it. Like his daughter had an AVM at seventeen. And she went through that and and has recovered from that somewhat now in the last few years. and I got to be I mean I hate that I had to be this guy, but I got to be the guy that supported him through that really acute phase and

There is just nothing to describe what it’s like to be able to a repay the favor. and then but B, when I was in that situation to have somebody kind of well, you know, like put their arm around me and really walk me through every stage. Me and my wife and my family walk us through every stage of that part of it, other than intervening as a brain surgeon. But he was the one that put us in char in in touch with my brain surgeon. like

Everything that happened was just the most amazing experience to be able to be guided like that. And I know it’s a privilege and many people don’t get that opportunity. so I see Chris, I haven’t told him this in person. I see him as like a bit of a superhero, but he doesn’t know that. I’ve told him I love him in the way men tell each other that they love each other by s abusing him and swearing at him and telling him that the team that he follows is terrible and all that kind of stuff.

so you arrived in Bulgaria. take me from the airport to the hospital. Like what happens? How is that? Actually the flight was really good. Customs was pretty easy. There was some annoying folk in front of me who I wanted to punch in the face and tell them to hurry up, but I was just, you know, needed to to get there. Kylie’s daughter met me at the airport.

And then we got the train together out to the hospital. So, you know, obviously I’m seeing my first sight of Bulgaria. I’d never been there before. so not really taking a tourist route at this point. so went out to see Kylie. And, you know, when you just eyeball someone and I, you know, just thank God I’m here, I’m in front of her. Her she’d had a shaved head. she had some pretty spectacular surgical scars, a couple of very big scabs still on her head.

she looked skinny, she looked pale, she had started doing a little bit of movement and the hospital room was really kind basic and crazy. Her friends had funded a pressure mattress for her that didn’t exist. And some of these things I had been liaising with Kylie’s friends in Bulgaria about what could we do, how you know, what do we want to prevent? So we want to prevent anyone pulling on from.

Her weak shoulders and like don’t let anyone pull her by the arm. this is how I want, you know, to help her with posture in bed or in sitting. and you know, like speaking in single kind of actions at a time and just take your time, say something, wait, wait, wait, wait, wait. Just allow Kylie’s brain to, you know, take that information on board. Don’t speak for her. and when I got there, it was really clear that.

She had an inattention to the right hand side as an effect from the stroke. So then I was a bit of a ball breaker, rearranging the whole room. No, no, no, no, no. Where, you know, everyone come from the right, everyone sit on the right. no cutler, you’re not allowed to have your phone in your left hand, you’re having your phone in your right hand. I’d taken some things with me from Australia to Bulgaria that I thought she might need. like some built-up cutlery, because I wanted her to use her right hand to feed herself. I took a couple of

kind of activities that I thought we could do to look at some retraining for the right arm. what I’ll still bring with me, try to remember now. Benjamin. So yeah, just try kind of going into early stroke rehab principles. Yeah. Did you go there well you went there as a friend. But when you were there, were you able to be a professional and also have a conversation with the local team?

Kylie and I laughing. Do you want to tell that story, Kylie? Which one are you thinking about? Where I got told off. No, I don’t remember that. well, Kylie was in act like, you know, there was still quite a lot of weakness, but she was also so determined for her own rehab. And in the system there their carers really don’t have a rehab focus. They have a

I’ll provide you a meal focus and I’ll occasionally do some cleaning and I’ll occasionally change the bed linen and but really not a rehab focus. So I’ve personally found it quite easy to help Kylie to like stand move. And so the very first weekend I was there, it was a long weekend and what I didn’t realise later was that they were actually quite understaffed.

Which worked in our favour because I was helping Kylie to get onto a shower chair, taking her to have a shower, us taking her to the toilet, because prior to that time they were just, you know, using pads for toileting because Kylie couldn’t stand up or move on her own. And because I’m trained, I found it very easy. She’s a lightweight person and she and I just work together and I could do that. I think it was the Tuesday,

person who I refer to as Nurse Ratchet. remembering now kind of intercepted me bringing Kylie back from the bathroom to her room and just like, nope, nope, nope, nope, nope, nope, nope. What are you doing? Stop that, stop that, stop that. and you know, she and I are having a bit of a a discussion. And basically she’s refused and I’m allowed to move Kylie. So Kylie is sitting out in the corridor. I think I’d luckily kind of covered you up for privacy.

and she’s like, No, you’re not allowed to move her. I’m gonna go and get the physio. I think at least forty minutes went by and then she comes back, well, okay, and I said, Look, I am a trained person, it’s easy, it’s safe. no, I’ll think about it. And then after I think another fifteen minutes she pushed your chair into the bedroom. And then I think it was probably another fifteen minutes where she just decided to move Kylie herself at that point.

even though that was out of policy and the physios had to do it. And then it was all this discussion with me that you can’t do it. And in the end it was you can’t do it because you’re a woman. Not strong enough, you know. so yeah. Then Kylie and I kind of would go on clandestine missions because again, from a rehab point of view, being able to stand transfer, it’s putting all the weight through the leg, it’s giving feedback to the brain. I really wanted to make sure Kylie’s bladder and bowel were gonna work properly.

And you know, sitting in bed and that’s just not ideal. So then Kylie’s like, Nicole, I want to go to the toilet. I was like, I’m banned, I’m banned, Mother Nurse Ratchet, I’m not allowed to take you. And I was like, shit. So I would go on a little mission, go look down the corridor, make sure she was nowhere to be seen. And then I quickly stole the shower chair and then I found a bucket. And so Kylie and I were doing

secret Wii missions in the bedroom. until w on one of our missions I just hadn’t quite got the bucket in the right place. And so then I it was also then later on a cleaning mission. So it was it was a pretty crazy environment. yeah, just for that lack of t whole team approach to rehab. Whereas, you know, in Australia the nurses would all be rehab trained. They would be transferring someone

physios would come in, speech would be coming, OTs would be coming. So I was kind of desperately trying to convince Kylie or to get her rehab to a standard where she’d be able to come back to Australia to get some more rehab. You know what’s good about this conversation other than the hilarious nature of it also is that

I as an as a person who hadn’t had a stroke before my hadn’t known anyone who had a stroke before my experience, if I had come across somebody who had had a stroke, I wouldn’t have known what to look out for and what to say to support them in a situation where perhaps something was being neglected. Because I don’t know what I don’t know. I’m not a professional, right? Just like those nurses and therapists that weren’t specifically trained.

Yeah. In certain things. I mean, you may as well be not only talking a different language, but you may as well be making it up as you go because as far as they know, now this is what we do for stroke patients. This is how we handle that. is it a lack of understanding of what r stroke rehabilitation requires, or is it a lack of resources, or is it a little bit of both? Do you feel in Bulgaria when you were there?

I think I think it’s a lack of of all all of that but it’s the lack of maybe money. So it’s a lack of training. So th there’s there’s not enough there’s not the the nurses or the orderlies or whatever they’re called here, are are aren’t paid very much. So they so

And t just like, even though I was in a private rehab hospital, so you would have expected that more. It’s you would have expected more, but I just think that they just don’t have the money to to train those people. Yeah. it wasn’t really a role, was it, Kylie? Like they really were more like housekeepers in a sense. It was more like cleaning a meals.

I have to say the physios were excellent. and a lot of the physios had good English as well, which was for your rehab was so important. because again a lot of the carers they would come into the room and you know, again, just from a speech therapy point of view, in Australia, say if someone came into the room who was the person who did the menus or filled up the water bottles or the cleaners, Kyler could have spoken to all of those people and had

incidental communication the whole day in English. But because of all of those p incidental people coming in didn’t speak English, you know, reasonably in Bulgaria. it just for me, I was worried about the lack of just exposure to English language as well. So not even speech therapy, just incidental language through the day. Which is very helpful and people don’t realise how helpful it is to be able to speak to a nurse about how you’re feeling or what’s happening.

Yeah. And all the usual stuff. And Kylie’s chatty and friendly and she would have just been having conversations galore, but it just it it it couldn’t be. Yeah. Yeah, it’s another another barrier. so you know when you go overseas, it’s your friend and you’re a professional. How do you handle that? Because you know, like are you emotional? Are you trying to put a lid on it? Are you allowing yourself to

Gonna be emotional. How does that work? We had some killer laughs, didn’t we? I mean, I’m a joker anyway. And so, like the first time Kylie got to do a poo on the toilet, I just did a poo dance for her. So I I felt half my job was you know, cheering her up and keeping it light and having fun and chatting about stuff we would just always chat about.

as well as doing as much rehab because it was very exhausting because, you know, p after a stroke, it’s very fatiguing. you know, so to Kylie was really tired and needed lots of rest. So and because I had just you know, obviously dropped tools to go over quickly, I was just working sometimes. So I just have my computer and if Kylie was asleep I’d just stay with her and and her partner Guido as well, who was there with her as well. So just, you know, emotional support wise. But

Yeah, I do some work. And I stayed in Kylie’s apartment. So I w was I just stayed at her place and I I train out to see her each day at the hospital. W how many hours would you spend in hospital with her? What do you think, Kylie? you would often arrive at like ten in the morning and you wouldn’t go till like five in the evening or six in the evening. Yeah. So technically visiting hours kind of finished at six.

So I just try and stay most of the day. A full shift. Yeah. Yeah. Unpaid. Unpaid labour. Slave driver. Yeah. yeah. But nah. That’s what friends are for. I very what I very much wanted to stay the whole day because I did really, really wanna like especially the toileting thing. I just really wanted that.

I had this bit of a goal for myself for Kylie that she would be able to take herself to the toilet before I left the country. So just from a dignity point of view, from a mobility point of view, transfers, you know, bladder control. So yeah, that was one of my big goals. And she rang me when I was in transit at Dubai Airport on my way back to Australia and said, Nicole, I just took myself to the toilet. Wow, that’s cool. Yeah. Yeah. And and I was having

physio two physio sessions a d a wi a day. So I was having other than Nicole. So I was having like about one session about of about an hour in the morning and one session of about an hour in the in the afternoon. Got it. You Kylie seem like pretty mm chill, pretty calm. how are you handling it though, emotionally? How’s the aftermath

Treating you because there’s a little bit of you know, there’s all that acute stuff. It’s awesome when your friend is there, but then your friend goes home, right? So how how does that transition kind of happen? Yeah, I might start crying. because I’ve just recently spent seven months in Australia. So I I went to Australia in October last year and I came back in just in May.

and I had more rehab there. So I had I had student led rehab at at first and then I got in got accepted into Birch, which is the brain injury rehab community and home in Ad in Adelaide. so that’s that is is a whole team of people. So I had I had physio and I and a occupational therapist and a

a e exercise physiologist and a speech therapist and stuff like that so I th that’s really good. now the most frustrating part for me is the aphasia so I I can’t I can’t express myself like I used to. Yeah. You know what I love about

interviewing people who have aphasia is when they say I can’t in a sentence to describe something to me it triggers the part of the condition which doesn’t allow the words to come out. It’s so interesting. That happens so so often. And it’s just a for me, I noticed this I’m saying it just from a perspective is maybe I can’t is not the right word. I don’t know. You might remember this, you might not, but maybe I can’t is not the right word. Maybe the right word is

Something that helps you get to the word that you need to get to. And okay, now that’s just me, the uneducated stroke survivor on a phasia guy. Like I don’t know about that. But it’s so interesting, it happens every time. but then Nicole goes home, you go home, your partner is kind of now taking over the caregiving role, and you still have some deficits. phage is one of them.

what about your right side? How offline was it? I I also moved in with Guido after the after the stroke. So so that was that was a has was ha was and has continues to be a challenge because we’re still getting used to living together because we weren’t living together before. and I was very in very independent before.

And I was living in Sofia and he and he and I now live in a in a village. So I live in in a village just outside of Sofia. And I’m not driving yet. but I was medically cleared to drive in Australia before I left. So I’m going through the process here. so anyway, all of all of those things together make it very challenging.

don’t get me wrong, I I l I love him, but but you know, and and I d and and I made that decision because my apartment is was was on the fourth floor and th there was no lift. Wow. Yeah. So back to your question. When I was when I was when I came here,

when I was discharged, I continued with as an outpatient and and the physio continued to come at home twice a week. So I was having more physio maybe like five times a week. and like it were ha had started to come my right side had was all already

back online, but I would I was just working on building strength and

and I would get still very tired. Yeah. And did your daughter end up coming to live with you as well? No. but she she at the beginning she she was my next of kin. So at the ripe old age of nineteen, she signed the consent to operate forms. yeah, so that was that was very difficult for her.

I didn’t know that at the time, obviously. but yeah. And did that happen, did she become your next of kin because your former partner, her dad, and you had separated and then his that role wasn’t gonna be his anymore. It’s just passed down to the person who was the closest to you. Like how did that happen?

We’re divorced. I I’m divorced from her dad. Yeah. So he’s definitely not my next kin. Right. So that ha changed after the divorce and she was the only person you could nominate because she was over is there an age limit to the next of kin? Eighteen. Yeah. Okay. So she had hit that criteria, you nominated her and then at nineteen she got to make a decision.

Which she never and you never would have expected ever for that to be a thing. I didn’t nominate her, it would just happen. So I was I I was unconscious at the time that she signed those forms. So yeah. So my friends actually contacted her. and she she rushed to the hospital. so it was all under duress. It was like this is what happened to your mum, you’re her

Next of kin, whether you like it or not, you have to decide. Yeah. Far out. Okay, that’s pretty full on for a 19 year old. Yeah. Yeah, seems like she did a good job. How did she handle this whole mum’s not well situation, this stroke thing? Like how did she deal with it? she was very good. my first memory actually is of her

coming into the ICU with with the with the whole, you know, the whole like the the hairnet and the mask and the and the and the what’s it called the scrubs. Scrubs, yeah. and she held my hand and said t that she loved me. so that was pretty special.

And incidentally I have an a another memory of Guido coming into the ICU as well and singing singing to me. So he he said that he said that I always wanted him to sing and he refused before. And so did did I want him to sing to me now? And I squeezed his hand or on the on the left he’s was holding my left hand and I squeezed his hand and so he knelt down beside my bed and started singing.

Wow. Can he actually hold the tune or is he hard to hear? Yes, see he’s he’s very musical. Okay. Thank God. If my wife had asked me to sing a w if I had asked my wife to sing, it wouldn’t have been a good experience at all for either of us. Yeah, he was he was a busker in i in his younger years. Yeah. and now he decided to come good. Fair enough. Well that that’s important. You know, things like that are important. It lightens the the mood and it makes Yeah.

You kind of feel like your family’s around and that you know you know, maybe kind of things might be all right. Like it gives that glimmer of hope. Is that how you received it? Yeah, I did. yeah, but I’m also very, very determined. So I’m a I’m a very normally very strong woman and so everyone said to me that if if well not to me, but

w we had a we had a group WhatsApp chat so and I was added to it later and everyone said in that that if anyone can get through this, Kylie can. Yeah. So you know when you’re told you’ve had a stroke, you wake up with all the deficits and everything. Are you like how do you take it? I woke up, couldn’t use my left side. I I did not for one minute.

It did not cross my mind like for one minute that this is not a good thing. Like I mean, clearly I wasn’t able to move, etcetera. But it never kinda went a lifesaver, I’m fucked. Like I never had that happen. Me as well. yeah. I I’d I’ve never thought that. I don’t know whether I even thought that

It was n like you said, that was not a good thing. I just put one foot in front of the other and or not literally, but the Yeah. Metaphorically. Yeah. Metaphorically. so one foot in front of the other and just got on with it. Yeah. Nicole, like you come across in your work, you come across a lot of different versions of patience, right? Like you get people who

might just be by design more negative to a bad experience and then people that are half class full to a bad experience. Just from a professional perspective, what’s the difference like when you’re trying to rehabilitate somebody that has kind of that different mindset?

From perhaps what Kylie and I described.

Yeah, I mean I’m probably in the last half full camp as well. So as an OT, I suppose we always meet people where they’re at. because everyone is a combination of their past experiences, aren’t they? So and cultural things, like there’s a very significant cultural differences in how people respond to pain or disability and expectations of kind of family and I suppose cultural expectations in Australia are even about

you know, what what what should be publicly available. So, you know, from an expectations point of view, I think a lot of it is based on, you know, previous experience. So as a therapist, we’re obviously there to support, you know, emotional well being, physical well being, and try and find the things for people that connect with them. So meaningful, like OTs are our absolute core is meaningful occupation. So how do we find something that’s meaningful to that

person that we think is going to get them from kind of, you know, here to there and it’s gonna be very different different motivators, you know. Kylie is probably, you know, very self motivated as described. Sometimes it’s about people really have a d strong desire to get back to work, or people have a really strong family structure that they want to be able to get back to do something with their family. So

finding the way or the thing hopefully that’s going to motivate them. But we certainly work with people who you know, have a high level of distress from what’s happened to them and and on an ongoing basis. One of the things I’ve got a little quote on my desk that you can’t see here, but it says, I’m still me, just a different version of me. And it’s what someone one of my clients told me recently who has MS. and often we find need to find the new version of someone.

and the new meaning for someone if that, you know, needs to happen. So that’s our great challenge, I suppose. That’s a big job, especially very early on when identity is so tied up into who they were literally days ago. You know, like a week ago. The mobile person, the working person, the money making person, the father, the mother, the whatever.

And then, you know, you’re dealing with a physical crisis, the existential crisis, the identity crisis, like you’re dealing with it all in the one moment, and you’re trying to get them to sort of see, well, you know, you’re still you and how we’re gonna move forward with the still you person, like we’re still gonna move forward with that person. And then later does come an adjustment of what that you looks like.

did for me like it’s a massive adjustment into what me looks like. But my identity wasn’t so much tied up in a one label specifically, although, you know, I s I was the person who felt like they needed to be the main breadwinner, you know, that you know ran a business that did all these things. I I had a big strong identity. But I think one of the things this is going to sound weird or might even sound logical depending on

like w who you are and why you’re listening to this podcast. But for me, the fact that my brain went offline was a really good thing because it and that allowed my emotional side to come to the fore. Like it really enabled me to see things with a different intelligence, you know, and access part of me that my emotional intelligence perhaps that I hadn’t that I perhaps suppressed previously, you know, and just battled through things.

And that kind of allowed my identity to come with me, it allowed me to leave some stuff behind and allowed me to

bring into my identity this emotional side of me, you know, which who cried, who got excited about new and different opportunities, you know, that my head didn’t convince me out of. You know, so there was a lot of silver linings that I didn’t I wasn’t able to iterate back then. I wouldn’t have been able to tell you that it was a silver lining. But now and a few years later, after it all happened, I was definitely able to talk about those silver linings. Kylie

Do you you’re fourteen months or so out, right? So maybe you’re not there yet, I don’t know. But are there some silver and I know a hundred percent Nicole was one of those silver linings, I get it. but do you see some silver linings in this whole saga? Yep. I do. my relationship with my daughter got stronger. Yep. So that was all s that was

definitely a silver lining. and you know, I I’m was very grateful before, but it cemented how g how grateful I am for my circle of friends.

Yeah. Kylie’s friends were amazing. Yeah. Your friends were amazing. Yeah. Yeah. Yeah. Big family still in Australia is is there a big family in Australia, Kylie? Not not a big one, but my mum and dad are still still alive. So they’re they’re in Melbourne. and my sister is in on the Gold Coast and my brother is in Melbourne as well. Yeah. And my and my son is in Adelaide.

Okay. So you still have some family here, but then you were able to create a community in the years before the stroke in Bulgaria. Yeah. you you were doing it a little bit tough after the stroke. Yeah. Correct. Yep. So that’s spot on. Did you Nicole tag team with some of those people as well? Yeah, so Kylie’s friends were beautiful and they were looking after me too. So

When I was in Bulgaria, they were looking after me, you know, giving me dinner and what have you, and kind of giving me emotional support as well. And I think they were grateful that I was there from a skills point of view, like they were doing a beautiful job of supporting Kylie emotionally. But and I did kind of train them up a little bit in in some rehab as well, you know, how to help with approaching from the right and how to communicate and also just even doing some activities.

Kylie and I had the balloon and we were tapping it back and forward to each other for strengthening up the right arm. And then we’d play some kind of word games as we were doing that for some speech therapy. So I was educating her friends around that kind of stuff. But the other thing, Kylie, that you and I have spoken about is, you know, after the stroke is knowing what’s important and how to let some sh shit go that would have been, you know, annoying or you know.

focus on something and now it’s just you you just know it’s just not important. Yeah. Being able to just let crap go. Correct correct. and the other silver lining is that I got engaged. Yes. Did he propose soon after? Yes, in the in the rehab hospital. what a romantic Yeah. But he but he said that he’d

already decided before the stroke that he wanted to marry be ma be married to me. So he just hadn’t got around to asking me yet. Yeah, fair enough. That stroke has a way of interrupting people’s plans and the things that they think they’re gonna do. so Nicole you normally treat your patients. They get to a stage. Usually they’re a lot

better than they were when they first met you. And part of what you do is you send them off into the big wide world like a kid. I’ve grown you know, I’ve raised them, you know, like they know how to comb their hair now. And you kinda send them off and it’s kind of bittersweet, I imagine, but also a very important part that the people who you’re helping get better actually go off into the world on their own.

And stop needing to be supported by you. I know there’s some people who need more support and that continues for longer and some people who don’t get enough and it and it’s never enough. But what’s it like knowing the job is not done, but you still have to leave and go home? that was heartache. I mean, Kylie and I both balled our lies out. it was a long flight home. Yeah. Yeah, it was a long flight home.

with lots of reflections. I suppose the good thing at that point was Kylie was easily able to speak on the phone or message each other. So and also, you know, I think at that stage maybe I got to see the brain scan and I was just like, my god, how have you even survived this? ‘Cause I think was it about a seven centimeter bleed, Kylie? Yep. seven and a half.

Yeah. To be precise. It truly felt like a a miracle. And again, full kudos to the surgeons in Bulgaria, truly, for that acute care. Because I think Kylie, I feel like you were in surgery in about within about two hours or something after the stroke, which is phenomenal. And, you know, your friends really saved your life. taking you straight to the hospital and prevented like, you know, more serious outcomes from the stroke. So yeah, so for me,

I was proud of myself as well. and I, you know, I like to live my life by thinking I can look myself in the mirror. And I felt like I can really I’ve got a tear, really look myself in the mirror. Yeah. Doing the right thing. Yeah. Yeah, yeah. Yeah. You came to the need of somebody who was in need and needed specifically not only your love and support as a friend, but also your skills. Like you had the complete package for them at that time.

How long did you end up staying in total? Was I ra away about just under two weeks probably with the flights and everything like that? So yeah. so yeah, leaving was leaving was horrible. But the goal of being able to go to the toilet was met. and also just the skills for, you know, skilled up a few other people and Kylie, you know, had her good networks.

I also went out to Kylie’s property out in the village to have a look at any home modifications. So that was another kind of OT type role that that was done. and she’s got an amazing property out there, but it is kind of needs a bit of love and so that was also just reassuring her partner too, like reassuring Guido that no, look, Kylie’s got this. There were a few times where it was like, Nicole, I don’t want her to do this. Like I’m like Guido, she’s safe. She can do it.

She’s got sitting balance. She’s okay to sit over the side of the bed. She can wiggle sideways. But he was anxious. And so again, part of my job was to reassure him to make sure that he let her do things. and didn’t step in too quickly. And so as an O T, we’re all used to like sitting on our hands and taking time and letting people struggle a bit. And it was hard for him to let Kylie struggle. So to just encourage him to let her struggle a bit so that she could do it herself and just wait. Just

take the time, especially with communication. so yeah, I I kind of obviously knew there was a lot more rehab to be done, but I also had seen Kylie’s determination and that, you know, she kind of knew what to do. and and so that was I I was grateful again for that. Kylie, what was it like when your friend had to leave? I was heartbroken.

I felt like she was a lifeline and I felt like that that had been cut because obviously she speaks English and obviously like

Obviously we have a really good relationship. and I felt like I was in a like how do I describe it? In a in a sea of

not n of people not understanding. So yeah, not my friends, but the hospital staff, basically. So not the not the physios. Like Nicole said, the physios were exceptional. but, you know, just the hospital staff. Yeah, just generally speaking. So did you feel like she had put you on the right path? Were you more confident with

kind of where she left you as opposed to where you guys started and was that enough to kind of give you the foundation for what you needed to take responsibility for when she left? Definitely. yeah, definitely.

Yeah. Man, w what a kind of interesting whole situation. You know, if this was fifty years ago, there’s no way anyone’s going anywhere to help anyone with anything. you know, like your hospital s experience in country like Bulgaria after what they’ve been through would have been completely different. You know, your s the chance of surviving telling your story is probably s you know, very much

decreased. I know this is gonna sound weird, but like it’s never been a better time to have a stroke in in most of the world. Like let’s face it. the the possibilities are just endless. I’m a miracle from all the medical professionals that put all their time and effort in. I am eternally grateful to my occupational therapists and physios and surgeons and people who invent X ray machines and people who make C T scanners and

The plastic bottles where drips go in, like every single thing is just an an absolute miracle of God or medicine or science or I don’t care what, like whatever you want to call it. And it just to me, it you know, here’s a really terrible situation and here and and but look at all the amazing things that came out of it. Somebody from the other side of the planet to be able to come over and intervene in that way, train people up. Like, man, it’s the

Perfect like feel good story, you know. Everything’s going okay, things turn shit, and then something good comes out of it and yeah hopefully there’s more good to come, you know. Like, man, it’s just an amazing experience. I just feel really privileged to be able to hear it and share it further. No, not not not me, personally.

but now that you say that I will s I will think about it now. the most thing that that Nicole and I reflect on is, you know, like like we’ve already said, how good was that my friends got me to the hospital quickly? How good was the the surgeons the surgeons

because it could have all gone wrong. or gone gone a different way. so that’s the stuff we reflect on more. and just just like my amazing recovery.

Because I recovered so quickly and so well, like I’ve thrown everyone away here. So so my new my neurologist, my my physios, ever everyone here is like well, back then was like really surprised. So we it’s when I first walked into the n neurologist, she said, like, wow,

No one expected you to recover that quickly from such a severe stroke. Yeah. That’s such a good outcome. I like to I like to think that those things wouldn’t have been possible without your most amazing superhero friend Nicole. Nicole, your final thing I’d like to kind of run by you is that your whole career you’re working towards making things better.

Yep. Like for people who are going through all really difficult times. have you had you ever dealt with a family member who needed your intervention or family friend or someone like that that needed an intervention with your specific skills before this? man. yes. So when I was quite a young therapist, probably in my early twenties, my dad told me that his

One of his like great aunts or cousins elderly relative had had a stroke and she was in hospital and I didn’t really know her. Like she wasn’t someone in the family that I I had knew had known. And I said to Dad, I’ll go and visit her in hospital. And and so I went to the hospital and I found out she was in this room and I walk into the room and there were four people.

And I see this gorgeous little old lady who is all crumpled in her chair and squashed and nearly falling out. And I I just walked in and I was horrified. And I just walked straight over to her. And I just said, look, can I help get you more comfortable, get you into a better position? And then I realized it was it was my own relative. and I said to her, I’m Nicole, I’m John’s daughter. you know, dad’s asked me to come and see you. And and she just said the most cutest thing ever. She said, when you walked into the room.

You just look so lovely and I hoped you were here to see me, but I I wouldn’t have known what I could have done to deserve that or something something dead cute. anyway, she’d had a very dense stroke and they were basically saying that she wasn’t a candidate for rehab and that she should go straight to a nursing home. And her daughter was a nurse.

And she said, Nope, Mum’s not going to a nursing home and she ended up taking her home and I used to go every night after work and do rehab with her. she ended up being able to walk quite with a pretty awkward gait and a and a stick. but she got back to, yeah, walking and living at home and I just again always think that if she didn’t have her daughter, the nurse and myself, she probably would have ended up not not walking. Yeah, being in a nursing home.

It’s not that quality of life. So there’s people who definitely go through that. And what I love about you sharing that part of the story is there’s people listening and they’re paying attention and maybe they haven’t been given the amount of therapy that they feel they deserve or need. And maybe that’s going to trigger people to go, you know what, stuff this, I’m gonna find a way to get more therapy, I’m gonna ask. I’m gonna hassle some people, I’m gonna be a pain in the butt to some people, I’m gonna do more.

for myself to get me further. I love that you shared that part of the story. That’s kind of the unique experience that a that a a seasoned occupational therapist can kind of impart on us who are early on in the recovery about like how you need to advocate for somebody or yourself for more physical therapy. And and even if you

Can’t access that people listening and watching YouTube channels. Go to YouTube. There are a ton of awesome therapists on YouTube showing people how to do exercises at home. Yeah. And I mean, I just took some really basic things. We s I, you know, stole some things out of Kylie’s flat to take in. And Guido’s son gave me some toys and we use those like stacking things to, you know, do rehab with Kylie’s hand. I took some pegs from her house and we made

an activity of pegging up the curtains to do shoulder and arm rehab. So you can often do a lot without, you know, complex equipment as well. Yeah, brilliant. Well, Kylie, what a friend, huh? Yes. Yeah. As if she wasn’t a good enough friend already. Yep. I really appreciate you guys reaching out, joining me on the podcast, sharing the story from

your unique perspectives. it’s so good to get that kind of a story and have it told in two perspectives, in one sitting. I wish you both well in your future work and Kylie in your recovery. And I really I I’m very grateful to have been able to have this conversation with you both. I’m just gonna say you’re my superhero, Kylie, seriously, the effort and the rehab.

yeah, do not want this about me. yeah, seriously. Thank you. That means a lot,

Bill Gasiamis (1:03:44)
Well, that’s it for another episode of the Recovery After Stroke podcast. What stays with me most is how much of Kylie’s recovery came down to the people around her. A nineteen year old daughter signing consent forms she never expected to sign, a friend who dropped everything, retrained hospital staff, and fought for something as basic as Kylie’s dignity in using the bathroom on her own. If this episode raised questions for you about who’s actually positioned to make decisions for you in a crisis,

It might be worth having a conversation with your own family. And if you want to hear another Stroke Survivor story of navigating a stroke far from home, go back and listen to Kristen Taylor’s episode Stroke Abroad. If this episode meant something to you, share it with someone who needs to hear it today. And if you want more on rebuilding identity and finding transformation after the stroke, my book.

The unexpected way that a stroke became the best thing that happened is available at recoveryafterstroke.com/book. If this show has helped you, you can support it at patreon.com/recoveryafterstroke. I’m Bill Gasiamis. Thanks for listening. I’ll see you in the next episodnineteen-year-olde.

The post Kylie Ralston: Stroke, Bulgaria, and the Friend Who Flew Across the World appeared first on Recovery After Stroke.

What nobody caught for another thirteen hours was that he’d also had a stroke.

He spent five months in hospital and ICU, then seven more in inpatient rehab. Non-weight-bearing for most of that time, he had to relearn how to exist in a body that no longer matched the identity he’d spent decades building.

The turning point came from an unexpected source: a blunt question from the principal at his rehab facility’s education centre. When Shayne told her his only goal was getting his body back, she asked him plainly, “So what if you don’t get your body back?” It’s a question that stroke survivors and their families rarely get asked directly, and it’s often the one that needs asking. Shayne describes it as heartbreaking in the moment, and something he’s since come to be grateful for.

That question pushed Shayne toward a skill he’d never have considered before his stroke: typing, then editing, then filmmaking. He describes teaching himself to type as doing more for his affected hand than any of his occupational therapy, and it opened a door to something bigger. Once home, he noticed a gap: plenty of content from doctors and news stations about stroke, but very little from survivors themselves, talking honestly about what recovery actually looks like.

So he started the UpStroke Podcast. Then, within days of getting home from inpatient rehab, he set himself an ambitious goal: make a full-length stroke recovery documentary about his own experience, and finish it within six months. No film background, no crew, no guaranteed audience just early mornings, self-taught editing, and a refusal to let pride keep him from trying something that scared him.

What makes a stroke recovery documentary like this different from a polished studio production is exactly what makes it valuable: it was built by someone still living the recovery it documents, using the same self-taught persistence he’d once applied to fixing pipes and riding through winter.

The most meaningful moment of the entire project, Shayne says, wasn’t a premiere or a review; it was screening the documentary at the rehab facility where he’d been an inpatient, for a room that was roughly 80% stroke survivors and staff. He remembers patients in that same gymnasium who never had a single visitor in six months, and he now sees his film and podcast as a way to reach exactly those people: the ones running out of hope in a system that doesn’t always have room to give them much of it.

His documentary is now available free on YouTube, so that as many stroke survivors, caregivers, and healthcare professionals as possible can watch it.

If Shayne’s story resonates with where you are in your own recovery, Bill’s book, The Unexpected Way That A Stroke Became The Best Thing That Happened, walks through ten tools for recovery and personal transformation built from these same kinds of conversations: recoveryafterstroke.com/book.

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

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

The transcript will be available soon…

The post The One-Percenter Biker Who Turned His Stroke Into a Documentary appeared first on Recovery After Stroke.

For a long time after my brain surgery, I assumed my body worked like this: the stroke happened in my head, so whatever went wrong afterward would also happen in my head. Fatigue, brain fog, slow thinking all of it filed under “neurological,” all of it explained by the injury I already knew about.

That assumption turned out to be wrong, and the way I found out was almost accidental. About eighteen months after my brain surgery, I had thyroid surgery to remove a nodule so large it had pushed my windpipe and esophagus six centimeters out of place. I had no idea it was there. No lump I could see, no difficulty swallowing or breathing that I’d noticed. It was found only because I had a chest X-ray to rule out an infection, and a doctor spotted something that had nothing to do with why I’d walked in.

What followed was a slow, confusing recovery from that second surgery, and a wave of fatigue I automatically blamed on my brain, because that was the injury I already understood. It took time to realize the fatigue might be coming from somewhere else entirely: my thyroid.

I brought this experience to Dr. Robert Hedaya, a Clinical Professor of Psychiatry at Georgetown University Medical Center and a pioneer of functional medicine psychiatry, to understand what actually happened, and to ask a bigger question: how many other stroke survivors are dealing with fatigue, brain fog, or mood changes that they’ve written off as “just the stroke,” when the real driver is a hormonal system that’s quietly stopped working properly?

Hormones and stroke recovery turn out to be far more entangled than most of us are told. As Dr. Hedaya put it plainly: the brain is a hormonal organ. Thyroid hormone, cortisol, testosterone, estrogen every one of them acts directly on brain tissue, and every one of them can be knocked off balance by the stress of a major medical event.

One of the most important things Dr. Hedaya explained is that a “normal” TSH result doesn’t rule out a thyroid problem, especially after a stroke. TSH is a signal sent from the pituitary gland, and if a stroke has affected the brain’s signaling pathways, the pituitary itself may not respond the way it should. A survivor can have genuinely low thyroid hormone while their TSH sits comfortably inside the standard reference range, because the system responsible for raising that number in response to a deficiency isn’t functioning correctly.

He also raised a striking data point: population studies suggest the average TSH in a healthy population is closer to 1.4, yet most labs still use an upper reference limit of 4.5, a range wide enough, statistically, to miss a real problem. His advice for survivors going into a GP appointment: ask specifically for TSH, free T4, free T3, and reverse T3, not just the standard single-marker test, and come prepared with symptoms written down if a doctor pushes back.

The brain is a hormonal organ. It’s an immune organ. It’s a neurological organ… there’s not one hormonal axis when it’s abnormal that cannot cause neurological or psychiatric problems.

My own nodule is a case study in exactly this kind of silent progression. Dr. Hedaya explained that because it grew inward rather than outward, it never created the visible lump most people associate with a thyroid problem, and because it didn’t press on my vocal cords or laryngeal nerve, I never developed the hoarseness that might have flagged it sooner. My body adapted gradually, and the fatigue that eventually surfaced was easy to misattribute to the injury I already knew I had.

Beyond the thyroid, Dr. Hedaya walked through the role of cortisol, the body’s primary stress hormone, and why survivors often struggle to answer a deceptively simple question: “Are you stressed?” His distinction between pain and suffering is worth sitting with: pain is often unavoidable, but suffering is shaped by the story we tell ourselves about a situation, and a stroke can compromise the very brain systems that regulate that stress response in the first place.

The conversation closed on sex hormones, testosterone and estrogen, relevant to both men and women, and their role in neuroplasticity. Dr. Hedaya drew a direct comparison to adolescence: the teenage brain rewires itself while hormone levels are surging, and the same principle applies after a stroke. A brain trying to rebuild pathways needs adequate hormonal support to do that work. Without it, recovery can stall in ways that have nothing to do with effort or physiotherapy.

If any of this sounds familiar fatigue that doesn’t track cleanly with other recovery milestones, or symptoms a doctor has waved off as “just stress,” Dr. Hedaya’s PNIE (psycho-neuro-immuno-endocrinology) questionnaire is a useful starting point.

If thyroid function specifically is what you’re navigating, the earlier conversation with Dr. Elena Zinkov, “Stroke Fatigue and Thyroid,” goes deeper into that piece (https://recoveryafterstroke.com/stroke-fatigue-and-thyroid/). And for more from Dr. Hedaya, the first conversation on photobiomodulation and stroke recovery is a good companion listen (https://recoveryafterstroke.com/photobiomodulation-stroke-recovery/).

Getting your body back after a stroke is rarely just about the brain. My book, The Unexpected Way That A Stroke Became The Best Thing That Happened, goes further into the mindset shifts that came out of my own recovery (recoveryafterstroke.com/book). And if this podcast has helped you, you can support its continuation at patreon.com/recoveryafterstroke.

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

A baseball-sized thyroid nodule hid in plain sight after Bill’s stroke. Dr. Hedaya explains the hormone testing every survivor should ask for.

Support The Recovery After Stroke Podcast

Highlights:

01:45 Hormones and Stroke Recovery

Transcript:

Bill Gasiamis (00:00)

And they said to me, well, can you swallow? Can you breathe? Can you do it? And I was like, yeah, I’m all fine. There’s nothing wrong with my throat. that was the first sign that there was something wrong with my thyroid

Bill Gasiamis (00:19)

cranial laser therapy helping some stroke survivors recover lost function. He’s back today for a conversation I wanted to have for a while, the hormonal side of stroke recovery.

We’re going to talk about thyroid function, cortisol, and stress physiology, and sex hormones like testosterone and estrogen, and why every one of these systems can directly affect how well and how fast your brain recovers.

I’ll also share my own story of a thyroid nodule that grew undetected, which was discovered after my brain surgery completely by accident.

if this conversation resonates with you, my book, The Unexpected Way That a Stroke Became Thethe Best Thing That Happened goes deeper into the mindset shifts that shaped my own recovery. You can find it at recoveryafterstroke.com/book. And if you’d like to help keep this podcast going, you can support it financially at patreon.com/recoveryafterstroke.

Bill Gasiamis (01:46)

Dr Hedaya (01:49)

Bill Gasiamis (01:51)

I’ve got a lot of other questions that are related to the brain and the link between other parts of the body and the brain, because we have this sense. Well, I did at least when I was first diagnosed that whatever happens in my head is kind of isolated, that it just impacts my head. But there seemed to be some other impacts and cascading effects.

that were occurring, uh, that I didn’t know were linked to the brain injury,

Dr Hedaya (02:45)

Bill Gasiamis (02:46)

surgery, I noticed that I had fatigue and I thought it was neurological fatigue related to my brain surgery. But it took a long time to develop an understanding that perhaps that batch of fatigue was related to my thyroid. And then that got me thinking all sorts of things. know, if the thyroid also causes the same neurological fatigue that

brain injury causes, what people might be missing this in their healing from a brain injury, they might have a compromised thyroid and not know about it. So the first question is, what is a thyroid? What does it do? And why does it cause neurological fatigue?

Dr Hedaya (03:54)

It affects the gastrointestinal system, it affects the muscles, it affects the heart, right? It affects the skin, it affects the nails, it affects the hair. You know, and I could go on and on and on. Okay?

Bill Gasiamis (04:34)

Dr Hedaya (04:35)

Gives you about 20% of the activity of your thyroid hormones in your body. But then that T4 goes all over the body to different tissues, and each tissue can has its own system to change that T4 into T3 by removing an iodine. T3 has 80% of the thyroid activity. So that means each tissue in the body can control how much thyroid it.

It’s using and needs, right? And and has available to it. Okay. So that means the brain, the heart, the liver, the lungs, every tissue has its own enzyme that allows it to kind of modulate how much thyroid, right? Now, so why does that cause neurological fatigue? Well, thyroid in the brain affects neurotransmitters like adrenaline in the brain, which is called nor norepinephrine, noradrenaline. in order for that to work.

The T3 has to be in the right amount for the receptors for the noradrenaline to be structurally correct so they can transmit the signal. It’s necessary for production of energy in all the brain cells. It helps the immune system in the brain. It carries molecules from here to there in the brain. it affects serotonin transmission in the brain, so mood regulation, anxiety, obsessiveness, depression.

You know, those are just some of the functions of the brain, but it affects every cell in the bane in the brain. So you’re gonna, if your thyroid is off, most likely you’re gonna have some kind of brain problems, particularly, you know, when your thyroid is off, the tissues in your body that are most compromised or most stressed, that’s probably where it’s gonna show up, right? And in the case of stroke, that’s where it’ll show up.

Bill Gasiamis (06:44)

Dr Hedaya (06:56)

Bill Gasiamis (07:04)

Dr Hedaya (07:07)

Muscles will be weak, thinking will be slow, movement will be slow, getting up from a chair will be more difficult, going upstairs will be more difficult, your heart rate will slow down, you’ll be constipated. Those are the most common symptoms. If your thyroid is overactive, then you could be have palpitations, oily skin, acne, oily hair.

Diarrhea, you know, kind of the opposite. The thing that’s a little confusing with the thyroid is sometimes overactive thyroid can show up and look like it’s underactive symptomatically, or vice versa. So you really need the labs. And the labs are TSH, which is thyroid stimulating hormone, and that’s tells you what the brain is doing. And then free T4.

That’s the amount of T4 that’s kind of floating around free, not bound to protein, so it can actually do its job. The way I think of it is like, you know, a lot of the thyroid home is sitting on a bus. It’s not free, it’s bound to protein. Can’t do its job. But the stuff the thyroid this that’s out of the bus or not on a protein, that can do its job. That’s the free T four. And then the free T three, right, which carries eighty percent of thyroid activity.

And then the last one is a reverse T3 because sometimes if your tissues in your body are making too much thyroid or getting too much thyroid, they’ll actually, instead of taking the iodine off the T4 molecule on the right side, they’ll take it off on the left side, or vice versa. So they make a fake T3 that doesn’t work. And this way they short circuited okay, you got all this T3. Well, let’s make it into a fake, fake T3 so it can’t do anything.

So reverse T3 is also very important. And then you want to measure body temperature. Usually it’ll be low. And then, you know, a physical exam. Those are the ways to do it. If you wanted to go even deeper, you could do some genetic testing. There are genes that will tell you whether you’re converting the T4 to T3 in the brain.

Adequately, or maybe you’re more likely to be slow in that regard. So you can have normal numbers in your blood, but your brain might be hypothyroid, right? And there are actually a lot

Bill Gasiamis (10:05)

Dr Hedaya (10:05)

hypo-low thyroidism. You can have low thyroidism in your heart, in your muscles, but not in the other tissues, you know, because I told you every tissue can control how much it’s making. So if you have a genetic vulnerability, then you you might more be in general be more likely vulnerable to depression or to ADD or to anxiety, things like that.

Bill Gasiamis (10:42)

Dr Hedaya (11:05)

Bill Gasiamis (11:06)

correctly. So is there lifestyle factors that interfere with the thyroid gland and therefore, you know, then have the cascading effect and take off, take all those other things or some of those other things offline.

Dr Hedaya (11:28)

develop a hypothyroidism. You could develop it just because all the chemicals in the environment, the ha the hormone interrupting chemicals, there are hundreds of those. you could develop it ’cause of nutritional deficiencies like tyrosine is necessary to make thyroid hormone, copper, you know, things like that. I can’t tell you offhand which which nutritional factors, but people can look that up, what nutritional factors are important.

To make thyroid hormone. and then infections like, for example, Lyme disease causes Hashimoto’s thyroiditis, which is an autoimmune where your immune system’s actually attacking your thyroid. COVID vaccination, like the Pfizer and the Moderna vaccine, if you are genetically vulnerable, can also cause your immune system to attack your thyroid. So there are many, many causes, plus there are inherited genetic vulnerabilities and it

It’s not always low thyroid, sometimes it’s high thyroid, hyperthyroidism, like Graves’ disease, right? You can have antibodies

Bill Gasiamis (13:01)

Dr Hedaya (13:02)

Bill Gasiamis (13:06)

what would some of those environmental toxins

Dr Hedaya (13:38)

Bill Gasiamis (13:39)

Dr Hedaya (13:40)

hormone interruptors because they actually can change the way your hormones function. You know? So we’re the truth is we’re bathed in these chemicals. They’re everywhere. And very hard to escape them. The best thing you can do is kind of try to detox them using a healthy diet, a lot of crucifer vegetables and lots of vegetables, above ground vegetables that are grown in healthy soil.

Without pesticides, organic preferably, right? and then there are supplements you can take, such as metagenics makes something called UltraClear Plus, which helps support the liver, and its detox functions. You know, some people are more vulnerable than others, but you know, these thyroid nodules you like you have, they’re very, very common now. Very common. And that’s you know.

In large measure, I think these hormone interrupters that are interfering with how the the thyroid follicles in the thyroid gland are operating.

Bill Gasiamis (15:13)

Dr Hedaya (15:18)

Bill Gasiamis (15:19)

Dr Hedaya (15:33)

Bill Gasiamis (15:34)

to check my chest to see if there’s an infection. And they noticed a massive lump in my throat and my esophagus and my windpipe were pushed six centimeters.

Dr Hedaya (15:52)

Bill Gasiamis (15:53)

there was no sign of it. I ask that because either I’m totally oblivious or it is possible to have thyroid nodules and not know it.

Dr Hedaya (16:23)

Bill Gasiamis (16:49)

how would somebody interact with a general practitioner, for example, now to go through the process of understanding, A, their thyroid health and whether or not they have any nodules.

Dr Hedaya (17:02)

Bill Gasiamis (17:07)

Dr Hedaya (17:08)

But if you do, you have these symptoms, and clearly thyroid hormone levels can affect the brain. And I’d like a TSH, a free T4, a free T3, and a reverse T3. That’s it. And if they

Bill Gasiamis (17:45)

Dr Hedaya (17:46)

the TSH is fine. If your thyroid was low, your TSH would go high. We don’t need to do the rest. But that’s not true. That’s not true at all. Because especially if you had a stroke, your pituitary function may be compromised. Your TSH may be fine or low and your low thyroid. As matter of fact, in the last interview, the case that I talked about, who referred me to you, she actually had a low TSH, but she had a very low, I think it was a free T4.

Or free T3 or both, whatever it was, but she had too little thyroid hormone, and her pituitary couldn’t respond because of the stroke.

Bill Gasiamis (18:37)

Dr Hedaya (18:37)

dogmatic and you say to the doctor, look

Even put into even put into AI and say, look, if the doctor comes back to me and argues against these tests, what should I say? You gotta be prepared because the doctor will steamroll you. You know, that they only allow this, they only allow that, I’ll only do the free T4. Well, that doesn’t tell you how much has been converted to T3, free T3, and it doesn’t tell you, even if the free T3 is normal, that doesn’t mean you’re not overproducing thyroid and and dis

you know, and neutralizing it with the reverse T three. So, you know I mean I I mean I think it’s s so important that a thorough look is is really important. If you have the symptoms, you know.

Bill Gasiamis (19:22)

when a patient will turn up and say, I have these tests? They’ll say, well, no, you don’t have any condition that is obvious that you need these tests. So it’s not covered. So you don’t need to do it. So my next suggestion to them is no problem. Order the tests and I’ll pay for them. Now it’s not ideal, but if you’re not going to do them for me and I need to know, cause it’s my health, I’m going to pay for them. So just tell me how much it is and I’ll find a way and I’ll make it happen and I’ll pay for it. So that’s another option.

Dr Hedaya (20:17)

But if you go in with your symptom list, right, and you say, Well, that’s not true, because these are the symptoms, you know, that I have, here they are, right here. You can take a look, you know. And then the last thing I’ll say, this gets even more tricky, is the reference range, I’m sure in Australia, but certainly in the United States, the reference range basically is of the TSH, the pituitary home.

Is 0.5 to 4.5, meaning you anywhere in that range and your TSH is normal. That is a bad reference range. And I know it to be a fact because I I I guess I won’t waste your time with it, but I did a study on a hundred people and with a very sensitive thyroid test called a TRH stimulation test. and I was able I hired a statistician to calculate this.

And say, well, I don’t want to keep doing this test on everybody. What TSH predicts an abnormal TRH stimulation test? And he came back and said to me, Well, once the TSH is over 1.4, it starts to increase your odds of having an abnormal TRH stimulation. So I said, okay, so 1.4 TSH is my cutoff, right? That’s in my mind. I said, okay, that’s that’s my cutoff, that’s when I get suspicious.

Later, several years later, a paper came out, a large, large study, called the NHANES Study, Nurses Health, and I’m not sure what it stands for. Thousands of people followed over many, many years, over decades, and they found the mean TSH in the US population is 1.4. So, right where I what right where my study found. So that means statistically, it is not.

impossible to have the upper limit of the reference range being at four point five because statistically the upper limit is never more than two standard deviations.

So even if your standard deviation is 1.4, which it can’t be, you you’re not going to reach 4.5, right? Unless you have a it’s called a bimodal distribution curve. If you have that, then you’d say, well, it it could be. But we don’t have that with thyroid. So that reference range is wrong. The upper limit of the reference range should be 2.5. And about half the endocrinologists in the United States believe that. And half say, no, no, no, don’t change it.

So that’s another sticky point because, you know, easily people get a result and they’ll go to the doc and say, no, the reference range is 4.5. You’re normal. Then you could say, well, look, I have these symptoms, and they could do a literature search. What’s the normal reference point? What in in the N A N HANES N-H-A-N-E-S study? It’ll show you 1.4. and you could take be prepared to go to the doctor and say, Well, here’s a study that suggests that the reference range may be incorrect.

and I have symptoms by the way. We don’t treat the lab, we treat the person. So could we give a trial? Just a trial, there’s no harm done, you know, trial. Let’s see let’s start at a very low dose. Let’s see how I feel. Maybe I’ll get better. I’ll come back in a month.

Bill Gasiamis (23:45)

It’s not the most healthiest people that come to see you to get bloods. And that’s kind of how I try to like start the conversation of convincing a general practitioner to do a test that they’re reluctant to do. And when I say they’re reluctant, I’m not in there every day. I’m not in there every week. And I’m not putting stress on the system to an extent where I’ve been over using the system. I’m not at all.

in there once, twice a year, maybe, you so if I’m in once, twice a year, well, then, I’m not mucking around. Like I’ve come there to investigate something that I’m suspecting is wrong with me. It’s my body. I’m feeling something. had a bit of a look online. This is what I suspect. Don’t try and convince me out of my thinking or my instinct more better. Why don’t we just, work together to get to the bottom of it. If it is something it is, if it’s not, it’s not, and that’s okay. Not a big deal. I’m better to know.

then not no, I think, you know, it’s better to be safe than sorry in my mind.

Dr Hedaya (25:16)

I would only think only correction I would make is the reference ranges generally are made on normal populations. Now now the thing is who’s normal anymore? Number one. Number two, that’s a statistical norm that doesn’t tell you anything about your genetics.

your vulnerabilities, it’s not an individualized statistic. I mean it’s it not an individualized thing. What’s your normal range? And are you out of your normal range? Nobody can answer that, right? Unless you had previous data before you were ill. And you say, well look, I’ve been running at a 1.1 for five years or 10 years and now I’m at 3.2. That’s a big change. Well, you know you’re stressed. Well yeah maybe but here are my symptoms. Always come back to your symptoms.

Bill Gasiamis (26:11)

Dr Hedaya (26:12)

Bill Gasiamis (26:13)

Dr Hedaya (26:35)

Bill Gasiamis (26:36)

picking up the kids from school, I’m, you know, making sure the bills are paid. Like I’m just doing the normal things that I always

Dr Hedaya (26:48)

Bill Gasiamis (26:48)

Dr Hedaya (26:57)

Bill Gasiamis (26:58)

in the months before I came to see him. So can we have a conversation a little bit about stress, cortisol, what is stress, what is cortisol, are they linked? Tell me about that, give me your thoughts.

Dr Hedaya (27:21)

Okay, so this is a multi-layer system. Okay, it starts with your perception and your of a situation and the story you tell about you the story you tell yourself about the the situation and your need for control of a situation and as opposed to saying I’m in the flow of the universe and

All right, this is you know, this is the way it is, and I’ll adapt to it. Not so easy by the way, but it’s a much healthier way because most things will not stress you. Now, pain, let’s say you stepped on a nail, you’re gonna have stress, okay? Totally stressful, etc. But there’s a a difference between pain and suffering. Most of our problem is suffering. Suffering is a result of thinking patterns.

perspectives of yourself and the world and the future and blah blah blah. I could talk about that for a long time. And that is probably one of the most important places to intervene and to train yourself, etc. Now, once this thing is registered as stress, it goes through back to the hypothalamus and the pituitary where all those hormones are controlled, the hypothalamus and pituitary in the brain, now you’ve God forbid, you’ve had a stroke.

Those things may be affected, therefore, those systems may not be working well. In that case, you may not be able to handle stresses that you used to handle. You may not you may not have those shock absorbers. So, how do you measure this? I think the way you measure it again are symptoms, and typically it would be low cortisol and low DHA, d DHEA, and low pregnenolone.

And the symptoms would be a lot of fatigue, right? Maybe poor wound healing, muscle aches, body pains, getting sick more easily, cognitive slowing, depression, anxiety, extreme exhaustion, salt cravings, in unstable temperatures, you know, I would say yeah

You know, th loss of appetite in severe cases, you know, dizziness on standing. Okay. So those are the low adrenal output things. Now how d how do you measure and again, you think you have a problem, go to an AI thing, make that list, check it off, whatever applies, and you know, work yourself up symptomatically and then ask well, okay, what what are the best tests here? What are the

best test. Now the way I test it is I get morning I got a morning like eight to nine a.m fasting ACTH and cortisol. It’s gotta be in the morning around between eight and nine a.m.

fasting. I also at the same time get a D, like David, H E A and a D H E A sulfate, and then I also get a pregnenolone. And if I think there’s any kind of sex hormone problem that I want to check, then I will check a free testosterone, FSH, LH, and

The testosterone measures the free testosterone is very unreliable. So if it comes out low, you want to do it two more times to double check that. But the other measures are pretty reliable. And then you’ll you’ll know the other thing you can do is you could do something called a Dutch test, which is a urine test that’ll look at your cortisol through the day, or an adrenal saliva test. It’s ASI, alleval adrenal saliva index, the Dutch test.

or the ASI, both good tests. and those will tell you what’s going on through the day. Like if you’re not sleeping, it could be because your cortisol high at night, you know. Wake up horrible or in pain. Could be because your cortisol is really low in the morning. Really low. You can’t even get out of bed, you know, can’t get going, right? So these are all all things that you can do to measure and then you can replace these hormones and

That’s one thing to do. The other thing to do is to work on how you manage stress. There are millions of ways of doing that, right? From meditation to heart math to

Bill Gasiamis (32:05)

Dr Hedaya (32:06)

Bill Gasiamis (32:10)

Dr Hedaya (32:35)

Bill Gasiamis (32:38)

Dr Hedaya (32:39)

vitality muscles, sex drive obviously, libido erectile function, brain cognitive function, some mood effects, etc. So I I think it’s important now i it it has to be managed in women as well as men. You know, in in women testosterone is a step on the way to estrogen as it is in men, right? And in the metabolism, right?

So it it should certainly be assessed in everybody.

Bill Gasiamis (33:39)

Dr Hedaya (33:55)

Bill Gasiamis (34:08)

Dr Hedaya (34:10)

Bill Gasiamis (34:15)

I might relate to that, know, who knows.

Dr Hedaya (34:22)

Bill Gasiamis (34:24)

Dr Hedaya (34:24)

for women on estrogen, it depends, you know, who are you assessing? Are you that’s a whole complex subject, you know. Is it a young woman who’s menstruating? Does she have premature ovarian failure, endometriosis, ovarian cysts, insulin resistance, they all kind of travel together, methylation problems, they travel together. is it someone who’s perimenopausal where she’s starting to lose progesterone and getting a lot of PMS?

That’s pretty easy. You can replace the progesterone. Is it postmenopausal a woman who’s just kinda lost the estrogen, lost the progesterone? You know, if there’s a family history of cognitive decline or dementia or something like that, there’s great evidence that transdermal estrogen and some oral progesterone bio bioidentic, not synthetic, is great and reduces the risk for lots of disorders later in life for women. You know. So

there’s a whole you know, there’s a whole way of working all that up, depending on who who you’re looking at. But very important. Now so the let me

Bill Gasiamis (35:31)

Dr Hedaya (35:34)

It’s an immune organ. It’s a neurological organ. I used to teach psycho, neuro, immuno, and the chronology at Georgetown for a number of years. Okay? And the brain and hormones, you can’t separate it. So if the brain is under stress, the hormonal axes are under stress, and there’s not one hormonal axis when it’s abnormal that cannot cause neurological or psychiatric problems. Okay? So you must, as part of the work of anyone who’s had stroke.

You must look at the endocrine, the hormonal axis. You know, you must look at it. Why? Because if you’re trying to recover from a stroke and you don’t have adequate hormones, it’s gonna be much, much harder. Much, much harder. Right? But

Bill Gasiamis (36:37)

Dr Hedaya (36:38)

What happens, think about it this way. What happens in adolescence? The brain is being rewired, the body’s growing, brain is rew being rewired. Where are the hormones? The hormones are skyrocketing. They’re necessary for the rewiring. You had a stroke, you’re trying to rewire brain, you gotta have adequate hormones.

Bill Gasiamis (37:10)

Dr Hedaya (37:19)

Bill Gasiamis (37:19)

Dr Hedaya (37:27)

Bill Gasiamis (37:28)

Dr Hedaya (37:35)

Bill Gasiamis (37:36)

And then there’s no information after that. So how do we assess address? How, what do we know? What do we not know that we need to know? And this is kind of what this conversation is, right? It’s like, okay, here’s

Dr Hedaya (37:53)

Bill Gasiamis (37:53)

do a little bit more work in understanding what that is, take that to your general practitioner and begin the conversation of taking responsibility for your recovery. And in my mind, like there’s gotta be like a foundational thing that people can do to intervene that doesn’t cost most of the time anything extra. And that helps encourage and nourish the brain in overcoming these challenges, but then has the

a cascade effect of having the same positive outcome on all the other organs and hormones. And that to me is nutrition. So like, if you’re, if you would suggest to somebody how they might start thinking about their nutrition as opposed to what they might have been doing before stroke, how do you begin that conversation? And what are the two or three fundamental things that they need to consider?

about nutrition.

Dr Hedaya (39:11)

If it doesn’t grow that way, don’t eat it.

I never saw a bread tree. I didn’t see an ice cream tree or a Twinkie tree. Okay. So if it doesn’t grow that way, don’t eat it. Balance your plate. Balance your plate. And actually our coach, Caroline Hade, is putting out an ebook. I don’t know, should be out at a week or two or three weeks. It’s like, I don’t know, four or five dollars or something.

and that will tell you exactly how to balance your plate. and then I would say very important to have three meals and maybe, depending on your how insulin resistant you are, maybe additionally two snacks. and per day, but keep your calories you don’t want to be overweight, okay, because if you’re overweight, you know, that’s a

That’s its own risk factor for brain problems, right? but you can’t lose weight in a day, you’re stressed, you’re hungry, you’re tired, you eat the carbs, you know, everybody struggles with that. But that that is one of the biggest enemies of eating eating eating these processed carbs that we all love is one of the biggest enemies of your health. One of the biggest enemies of your health for sure.

Bill Gasiamis (40:35)

Dr Hedaya (40:45)

Bill Gasiamis (40:45)

Dr Hedaya (40:59)

Bill Gasiamis (41:00)

of food. It’s probably something that’s going to make inflammation worse. It’s probably something that’s going to give you the type of energy that is not helpful. It’s probably going to have a whole bunch of other things. And that’s kind of my approach to healing and recovering my brain. It’s one of the first things I did was just look at my nutrition, immediately stop smoking and drinking. mean, I know

it should go without saying, but sometimes you have to have a stroke for it to actually sink in and make sense. and don’t have any alcohol at all. I’m talking about forever if you can, but I didn’t have alcohol

Dr Hedaya (41:46)

Bill Gasiamis (41:47)

sip or half a sip or act as if I was drinking. So with that, I think we’ll wrap up this conversation today. There’s been a lot for people to digest, go back and listen to it a second time. And a third time that we have some resources in the show notes. And Dr. Hedaya, thank you for joining me again. And I look forward to our conversation that’s coming up in a few weeks time where we’re going to talk about toxin load and neuroplasticity.

Dr Hedaya (42:29)

Bill Gasiamis (42:36)

Dr. Hadea’s free PNIE questionnaire is linked in the show notes. Download it, work through it, and take it with you to your next GP visit. If you want to go deeper on the thyroid piece specifically, go back and listen to the earlier episode with Dr. Elena Zinkov on stroke fatigue and thyroid.

And if you missed it, the first conversation with Dr. Hedeya on photobiomodulation is a great companion to this one. if this episode has helped you, share it with someone who needs to hear it. That’s genuinely the best way to help this show reach more survivors. My book, The Unexpected Way That a Stroke Became the Best Thing That Happened, is available at recoveryafterstroke.com/book.

And if you’d like to support the show financially, you can do so at Patreon by going to patreon.com/recoveryafterstroke.

Until next time, take care of yourself and don’t assume it’s just a stroke.

The post Hormones, Fatigue, and the Brain: Dr. Robert Hedaya Returns appeared first on Recovery After Stroke.

At 25, Michelle Lee Clemens had the career she’d been planning since she was eleven years old. She was an Emmy-nominated news anchor and reporter in Green Bay, Wisconsin. She ran marathons. She wrote her own stories. Talking, as she puts it, was her life.

Then a heart infection called endocarditis set off a chain of events that almost ended it. Her vision blurred. Specialists floated theories: leukemia, diabetes, cancer, rheumatoid arthritis. One doctor drew twenty-three vials of blood. Another gave her injections in both eyes. Weeks later, pain in her calf led to blood thinners. And when she arrived at a Green Bay emergency room feeling desperately unwell, the doctor’s first assessment was that Michelle was having an anxiety attack.

Her father, a paramedic and firefighter, pushed back: “No, it’s real.” A CT scan proved him right. Michelle had bleeding in her brain. She was flown to a larger hospital, underwent three brain surgeries, and spent a week in a coma. At one point, her pupils were fixed and dilated.

“I was dead, honestly.”

When she woke up, her hair was gone, part of her skull was gone, and so was her speech.

Michelle lives with two distinct conditions that often appear together after a stroke.

Aphasia is a language disorder. It affects a person’s ability to produce and process language: speaking, understanding, reading, and writing. What it does not affect is intelligence. Michelle remembers everything about her journey with unusual clarity. As she explains it in this episode:

“In my brain, I’m fluent.”

The words exist, fully formed. Getting them out is the battle.

Apraxia of speech is a motor planning disorder. The brain knows the word it wants, but struggles to coordinate the precise muscle movements needed to say it. For Michelle, the combination means a conversation involves constant, visible work: finding the word, producing it, then checking it was the right one.

During the interview, Bill offers a description Michelle immediately confirms: the word is here in the mind, but it’s not here, at the mouth.

“It’s very frustrating. But it’s me

Michelle describes challenges that rarely make it into clinical descriptions of aphasia.

Fatigue changes everything. Earlier in the day her speech flows more easily; by mid-afternoon, after teaching three exercise classes, the effort of talking compounds. Writing was affected too after the stroke, she says, her writing “was a joke,” which mattered for a journalist who wrote her own scripts.

Then there’s the loneliest part. Asked about the hardest thing she faces beyond speech itself, Michelle names friendship. Her close friends live in Washington and Green Bay, not nearby, and building new friendships is difficult when conversation itself is the barrier. A lunch invitation sounds simple, but when speaking is hard work, connection stays shallow. People judge. Some assume the halting speech means lost intelligence. It doesn’t.

Yet the same woman who names that isolation also describes cruising as her favourite therapy, talking with international crew members who speak English as a second language, where everyone communicates imperfectly and nobody judges.

“Talking is therapy.”

Michelle was told what many stroke survivors are told: that recovery plateaus, that progress stops. Nine years on, she is still disproving it.

Not even a year before this interview, she decided to start eating with her affected right hand. In July 2025, year eight of her recovery, she flew to Denver for a week-long meditation program and describes the improvement in her hand afterwards as “unbelievable.” She has tried dry needling. She still attends speech therapy, having started with twenty-six weeks at Northwestern, and keeps working toward the fluency she is determined to reclaim.

Her license plate reads DETERMINED.

Today Michelle works four jobs: personal trainer and group instructor at her local gym where she coaches other stroke survivors, documentary producer, motivational speaker, and author. She wrote her book about her story alongside her father, Vince, who wrote his own account of the same events; for him, she says, the early-morning writing was its own therapy. In 2027, she’ll present her story at Lambeau Field in Green Bay.

What Michelle’s Story Offers Other Survivors

Three things stand out from this conversation.

First, self-advocacy can be lifesaving. Michelle’s brain bleed was initially read as anxiety. Her father’s insistence on a scan changed the outcome. If something feels wrong, keep pushing.

Second, the plateau is not a deadline. Michelle’s hand function improved in years eight and nine. Recovery timelines are longer and more open than many survivors are led to believe.

Third, communication is bigger than fluency. Michelle gets her message across in jumbled order and all and asks mainly for what every person with aphasia deserves: patience and a conversation partner willing to wait.

Bill has written about his own version of this long arc of recovery in his book, The Unexpected Way That A Stroke Became The Best Thing That Happened, which shares ten tools for recovery and personal transformation – you can find it at recoveryafterstroke.com/book.

You can find Michelle’s book and speaking information at michelleclemens.com, and her book is also available on Amazon and Barnes & Noble.

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

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

A news anchor’s stroke at 25 was dismissed as anxiety. She woke from a coma unable to speak. Nine years later, she’s proof recovery never stops.

Links:

MichelleClemens.com

Highlights:

00:00 Introduction to Aphasia and Apraxia After Stroke

Transcript:

Michelle Lee Clemens (00:00)

I have a conversation with myself and my brain, but speaking is hard and we are going to lunch or whatever. Well I wanna it’s nothing because it it’s it’s

It’s no close it’s a cl it’s not a close relationship.

Bill Gasiamis (00:33)

Making it harder to get words out, and a light edit helps the conversation flow so you can follow it more easily. Even so, parts of this still take a bit more patience to follow than a normal conversation. So I’d ask you to stay with it anyway. What you’re doing as a listener in those moments, waiting, rereading a sentence, letting somebody find the word.

Is a small taste of what Michelle does every single time she opens her mouth. If you live with aphasia yourself, I think you’ll find something encouraging in that. And if you’ve never really understood what aphasia is,

you’re about to get a better sense of it than any definition could give you. Either way, this is one worth passing on to somebody else. And a quick note before we dive in, if you’re feeling stuck in your own recovery, I now offer one-on-one coaching for stroke survivors. It’s not therapy or medical treatment, it’s lived experience support, structure, accountability.

And someone who’s actually been where you are. Having survived three strokes myself, I only work with a small number of people at a time, so it stays meaningful. You can apply at recoveryafterstroke.com/momentum.

And one more thing. If this show has given you something for your own recovery, my book, The Unexpected Way That a Stroke Became the Best Thing That Happened, is available at recoveryafterstroke.com/book. And if you’d like to support the show directly, you can do that at Patreon by going to patreon.com/recoveryafterstroke.

Here’s my conversation with Michelle Lee Clemens.

BIll Gasiamis (02:39)

Michelle Lee Clemens (02:41)

BIll Gasiamis (02:44)

Michelle Lee Clemens (02:49)

My reporter life was really weird, random.

I’m an EMMY nominated journalist and I loved running. I have I ran six marathons, a lot of half marathons.

and my life was sweet and yeah.

BIll Gasiamis (03:35)

Michelle Lee Clemens (03:38)

grateful, okay, and still but I mean my life was peaceful and I have no surgeries, no I hated needles. I mean, my goodness. I didn’t have my ear pierced because I was that scared. Okay. But yeah.

BIll Gasiamis (04:08)

Michelle Lee Clemens (04:10)

BIll Gasiamis (04:27)

What was your age when you had the role as a news anchor?

Michelle Lee Clemens (04:38)

BIll Gasiamis (04:39)

Michelle Lee Clemens (04:41)

BIll Gasiamis (04:49)

you don’t look a day over 16. Like you have a very youthful appearance.

Michelle Lee Clemens (04:57)

BIll Gasiamis (04:59)

Michelle Lee Clemens (05:05)

I’m going home my dad was here or in Green Bay and

My vision was weird. I went to a eye doctor and he said a different doctor.

I went to a rectus specialist and he said maybe leukemia or diabetes or cancer or RA and my mom has RA. it’s yes, sorry. And

BIll Gasiamis (06:12)

Michelle Lee Clemens (06:16)

The doctor took twenty three vials of blood.

BIll Gasiamis (06:38)

Michelle Lee Clemens (06:39)

condition or heart infection. Two days after I went to the eye doctor a rude a different eye doctor and I had two shots in my eyeballs.

BIll Gasiamis (07:30)

Michelle Lee Clemens (07:31)

BIll Gasiamis (07:34)

which you don’t like.

Michelle Lee Clemens (07:39)

BIll Gasiamis (07:44)

Michelle Lee Clemens (07:46)

not seeing a lot. I was a news anger and I needed to see the problem proper and I didn’t see well. Yeah. And my boss was furious. I have no choice. And

BIll Gasiamis (07:48)

Michelle Lee Clemens (08:12)

Well, I and my dad and I went to the ER and he the doctor said I’m we need to s have blood thinners. Okay. I have no idea but doctors said right and three days after

my dad drove to a different appointment and my or me and I didn’t see the one and

Late I had my brand new medicine.

Dad, I’m not feeling good. And okay, my dad said, maybe five minutes we’re figure it out.

We drove to the ER in Green Bay and

The doctor assumed the doctor said Michelle has a anxiety attack.

BIll Gasiamis (09:49)

Michelle Lee Clemens (09:51)

to a great possible for my care. I I have

I no sorry.

was bald. I was I mean I

BIll Gasiamis (10:34)

you had brain surgery.

Michelle Lee Clemens (10:37)

BIll Gasiamis (10:43)

Michelle Lee Clemens (10:47)

and the doctor said

really don’t know. And my dad said

This doctor fix hard to fix me and I am a walking talking miracle. my speech was

gone. And s and I mean I have a I mean I have apraxia and aphasia and s I have speech therapy twenty six week. I love it. Go northwestern but anyways I am determined to have

fluency and I mind you I was a news anchor and reporter talking was my life I mean I mean come on and I remember all of this things a lot of people you are not remembering after

BIll Gasiamis (12:12)

Michelle Lee Clemens (12:32)

story is so powerful. and I

It’s right here. I mean my my memories are so clear and I am My license plate is determined. I mean, I am determined.

BIll Gasiamis (13:04)

Well done.

Ha

Great

stuff. Tell me about waking up from your stroke and then realizing that there’s something serious going on. Your hair, your beautiful golden hair is missing and skull was missing and you couldn’t talk. that would have been difficult. How difficult was that?

Michelle Lee Clemens (13:17)

I I have no idea but my hair? What happened?

Okay. Maybe a car accident.

I have I mean what I mean for my IV wha what what happened? I mean really what happened and I mean I have

idea and later

my parents said you have aphasia huh what is that i mean honestly and i have no idea i mean it’s a cancer i don’t know i i have what happened and later i realized but i had no have glas contacts and

my vision was off. I needed glasses. And then it was a hot mess, but I was so tired. every ounce.

BIll Gasiamis (14:38)

Messing with it.

Can you describe what it’s like to have aphasia? It’s actually aphasia awareness month at the moment. So can you explain what it’s like? Because some people who come across you who don’t know about a stroke and don’t know about aphasia think that you lost your intelligence or something, but you remember everything, your intelligence is intact. The challenge that you have is getting words out. Is that getting words out difficult?

Michelle Lee Clemens (14:53)

Yeah.

Exactly.

BIll Gasiamis (15:16)

Michelle Lee Clemens (15:21)

Okay? I was so excited. I mean, yeah. And I mean why not? Anyway, sorry. I await my tradition, aware not sorry, aphasia is

I mean definition, I’m sorry, but it is maybe it is

BIll Gasiamis (16:10)

Michelle Lee Clemens (16:16)

Okay, there it is.

Sorry.

BIll Gasiamis (16:21)

Michelle Lee Clemens (16:22)

My bad.

I’m really sorry.

It’s a different strip. There it is.

Okay.

Not quite.

my goodness. I’m really sorry, hold on. Okay. Okay, I got it. Sorry. I have a indivisible invisible disabilities. aphasia is a language disorder that a person

BIll Gasiamis (16:34)

Michelle Lee Clemens (16:57)

We know but we are not talking because it is so it’s it’s

Not in jumbling, but I mean it’s it’s

BIll Gasiamis (17:24)

Michelle Lee Clemens (17:26)

yes. It it it’s it’s it’s very frustrating. but it’s me

BIll Gasiamis (17:43)

Michelle Lee Clemens (17:49)

n I mean my I not really no. I I mean I was I didn’t

BIll Gasiamis (18:06)

Hmm.

Michelle Lee Clemens (18:14)

BIll Gasiamis (18:30)

So

that’s cool. So how do you go about your day now? What is your day involve? I know during the week that you would have therapy, speech therapy and all that kind of stuff, but how do you occupy your time?

Michelle Lee Clemens (18:46)

I have a lot of stroke survivors and I mean you can do it. I did. I was almost dead. I mean I mean I have what I had a one personal living, honestly. And I am a walking talking miracle and I am a documentary producer and a motivational speaker and

A author.

BIll Gasiamis (19:42)

Michelle Lee Clemens (19:47)

exactly. I mean I I mean mind you, I had no job until a year ago. And I’m grateful.

BIll Gasiamis (20:03)

Michelle Lee Clemens (20:07)

Huh.

yeah, it’s still. But I mean, it’s my work is really relaxed, honestly.

BIll Gasiamis (20:21)

small amount of hours over two days. So it’s easy to manage.

Michelle Lee Clemens (20:24)

Exactly. Exactly. I mean and the other w job is a online job.

And it’s very awesome, huh?

BIll Gasiamis (20:39)

Michelle Lee Clemens (20:47)

well my dad and my me are has a different story. I wrote my story and my dad has a different story. yes, but my family was very

to support or still. I’m honestly living in my parents’ house because I’m still

not I’m not wealthy, okay. I need money, first of all. And yes. But I mean I’m my book is not I mean I like my book. I’m not spending I mean not spending I mean my goodness. My profit was two dollars.

BIll Gasiamis (21:44)

Yep, I believe that.

Michelle Lee Clemens (21:52)

Yes. Or yes. I am not I mean I love to read or not. I love to write. I mean I am not whatever. But it was a great thing for me. And my dad said it’s a great it was a great thing for my dad because

It’s honestly it was therapy, okay? And he early morning he wrote the pod, not pod, sorry, blog and it was a great thing for my dad.

BIll Gasiamis (22:42)

Michelle Lee Clemens (22:45)

then I mean I I was a news celebrity in Green Bay and a lot of people a lot of people said

I I was I’m praying for you or or something else. I mean, they the community was awesome in Green Bay. And and my home t ho hometown honestly. My hometown was very supported for me and I’m grateful.

BIll Gasiamis (23:13)

Mm-hmm.

Mm-hmm.

Yeah, some of those hard times. How do you get through those? Did you seek out counseling? Did you speak to therapists in other areas other than just your family?

Michelle Lee Clemens (23:37)

I am living. I’m not caring because I am a walking talking miracle. And I tried therapy and I didn’t like they were sorry but not effective. I am I my outcome or not outcome but my personality is so

Awesome, I don’t know what it’s very, but I had an accident. Okay. Keep going, okay? I am determined. And I mean it’s a sucky.

BIll Gasiamis (24:13)

Move on,

So therapy is,

formal therapy is kind of not your thing. It’s you’re into doing projects, writing books, going to the gym, helping people out, doing rehab, overcoming your personal challenges.

Michelle Lee Clemens (24:37)

Well yes.

Yeah. I mean I had P T O T and speech and then I still have speech. But

I mean, my my mental is really good. I am a yes, my yeah. Yeah, I mean I am really grateful and it’s a it was a messed up situation, okay. I was I spoke for gr my graduate or

BIll Gasiamis (25:00)

Michelle Lee Clemens (25:22)

BIll Gasiamis (25:32)

It’s funny but weird at the same time. Like it’s bizarre, isn’t it? You’re relying on your speech for your everything. And then the only thing that goes away is your speech. What about physical deficits? Do you have any stiffness or pain or anything like that?

Michelle Lee Clemens (25:37)

Every.

I was paralyzed with my right hand or everything. And I still have a lot of tightness and it’s my right everything is different. I mean

BIll Gasiamis (26:16)

Michelle Lee Clemens (26:17)

BIll Gasiamis (26:34)

Michelle Lee Clemens (26:46)

BIll Gasiamis (26:50)

Michelle Lee Clemens (26:54)

I

My God is amazing.

BIll Gasiamis (27:05)

Michelle Lee Clemens (27:15)

BIll Gasiamis (27:30)

Michelle Lee Clemens (27:43)

It’s okay. My speech is sorry. My speech is a problem because

BIll Gasiamis (28:10)

Michelle Lee Clemens (28:16)

I have a conversation with myself or and my brain, but speaking is hard and I w let me we are going to lunch or whatever. Well I wanna it’s nothing because it it’s it’s

It’s no close it’s a cl it’s not a close relationship.

BIll Gasiamis (28:45)

Yeah. So

aphasia is a barrier to having meaningful conversations with people that create friendships.

Michelle Lee Clemens (29:01)

not normal or not no no sorry yes but he was not he didn’t have aphasia. What is that? I mean he wasn’t really normal. And we broke out I mean three it wa I was sorry

three years for the relationship trip. Actually in Sydney, Australia. Yes. On a cruise, mind you. Don’t ask. It was a hot mess, but a different topic, huh?

BIll Gasiamis (29:42)

You broke up in Sydney, Australia?

Okay, so I understand. So you had a boyfriend and you were together for three years and you broke up on a cruise together when you were visiting Sydney, Australia.

Michelle Lee Clemens (30:07)

Yes. Yep. Yeah. Yeah. I I

BIll Gasiamis (30:18)

not a good reason to remember Sydney, Australia. That’s Yeah, you love it anyway. Okay, good.

Michelle Lee Clemens (30:26)

BIll Gasiamis (30:30)

Michelle Lee Clemens (30:31)

You’re right. Exactly.

BIll Gasiamis (30:46)

Michelle Lee Clemens (30:49)

Yeah.

Nice. Yeah.

Right.

BIll Gasiamis (31:16)

Michelle Lee Clemens (31:28)

BIll Gasiamis (31:45)

Michelle Lee Clemens (31:49)

Nope. No.

yeah. A lot of judge. I mean Yeah. I mean

BIll Gasiamis (32:04)

Wow. Well,

I hope this interview raises some awareness and then decreases the amount of judgment and makes people more patient with people who have aphasia. It would be fantastic if we were just able to all get along, even though we couldn’t have regular version of speech or conversation as others. It’s something interesting and different to sit down with somebody who has aphasia.

Michelle Lee Clemens (32:18)

BIll Gasiamis (32:36)

Michelle Lee Clemens (33:06)

BIll Gasiamis (33:09)

Michelle Lee Clemens (33:34)

BIll Gasiamis (33:39)

like you can communicate most things. You can communicate your needs. You can communicate what’s important. It may come out a little jumbled and not in the right order, but it comes out and you can get the message across most of the time.

Michelle Lee Clemens (33:48)

Yeah, I mean it’s weird but hear me out. I loved cruising because a lot of people have a different language mean they live in They the workers live in

China or Jap Japan or yeah it’s different countries. my speech is so clear because I’m talking English and I’m not my speech is not the greatest but

BIll Gasiamis (34:29)

Michelle Lee Clemens (34:47)

BIll Gasiamis (35:12)

Yeah, so you’re on the cruise, people are from different nationalities, different cultures, different backgrounds. And when you speak in English, you speak well enough for them to understand and they speak well enough for you to understand and everyone gets along and it’s all fine. Yeah, do you speak when you’re tired? Does your speech get a little harder as opposed to when you’re fresh earlier in the day in the morning?

Michelle Lee Clemens (35:31)

Yes,

yes, definitely. I mean, right now I’m awake, but I mean most of the time, I mean three a at three I’m okay. I’m done. I mean not really, but I need maybe f more food. I don’t really know. I have a lot of

BIll Gasiamis (36:07)

now, yeah, by now your day is kind of winding down and you’re quite tired.

Michelle Lee Clemens (36:16)

I mean n at three I did coffee and b and and I mean yeah.

BIll Gasiamis (37:01)

Michelle Lee Clemens (37:14)

The left str is very very strong. The right, I have no idea. I mean, I am here. my phone, it’s very heavy for me. the water bottle, it’s I have no idea.

BIll Gasiamis (37:59)

Yeah, okay. So your left side, quite normal, quite strong, really kind of able to lift things, do things. The right side, not so much, a little weaker. A phone is heavy and lifting your water bottle with your right hand is probably not a good idea.

Michelle Lee Clemens (38:14)

No.

It

no, I mean I I mean

Not not even a year ago. I took no, sorry, I decided I’m going to eat with my right hand. Okay? It was hard, but I get it. And I mean I I didn’t have a clue, but

BIll Gasiamis (38:49)

Michelle Lee Clemens (38:56)

BIll Gasiamis (39:03)

is still improving after nine years.

Michelle Lee Clemens (39:08)

BIll Gasiamis (39:10)

They say that you’ve hit

the plateau, you’re not progressing.

Michelle Lee Clemens (39:35)

co. And no, I am determined, mind you. and yeah.

BIll Gasiamis (39:44)

Michelle Lee Clemens (40:11)

BIll Gasiamis (40:13)

Michelle Lee Clemens (40:17)

I mean I am using my fork and my spoon, not the f knife. Save it first. but don’t it’s weird but hear me out. I different therapies. Okay. I had drive needling with for my

everything honestly for my hands. Okay, fine. And a week a er no thing. in

July? Yeah, July twenty twenty-five. I flew to Denver to have a meditation with for for a week. My hand is unbelievable.

Amazing after meditation. It’s so weird. It’s I mean, it’s very weird, but it’s helping. And I I mean most of the time I am meditating and it’s helping me.

BIll Gasiamis (41:23)

That’s excellent. Meditation is really helpful. It changes your body. It relaxes things and it gets blood flowing and it gets the nervous system relaxed. And then if it gets you out of your head, you don’t overthink things. Things flow more easier. Does speaking require you to do a lot of extra thinking about how you’re going to get the word out?

Michelle Lee Clemens (41:42)

BIll Gasiamis (42:11)

Michelle Lee Clemens (42:26)

BIll Gasiamis (42:28)

That’s okay. You don’t need to have that’s all right. That’s fine. Perfect. So now let’s talk about the book briefly. You, how long did it take to write?

Michelle Lee Clemens (42:39)

Yes.

Well, it was a long time because I have post traumatic stress to order and my vision is really clear and I stop and then rescrew and then stop because it’s a big deal.

BIll Gasiamis (43:11)

Michelle Lee Clemens (43:13)

BIll Gasiamis (43:15)

Michelle Lee Clemens (43:17)

BIll Gasiamis (43:45)

Michelle Lee Clemens (43:45)

And I’m I I bought I mean a not a lot of books but a lot of books. I have in twenty twenty seven I am presenting my story in Lambo Field in Green Bay, Wisconsin

USA and I’m presenting my story. I mean it’s Lambo Feel. Okay, awesome. I mean I like to have I like motivational speaker gig

BIll Gasiamis (44:56)

You’re also speak motivationally. also have that little gig. That’s awesome. So you also have a website where you can go and get some information and get the links to your, the different things that you’ve done and go and see your reels and go and grab a copy of the book. What is the website? Tell me the website.

Michelle Lee Clemens (45:08)

Yeah, definitely.

Thank you.

MichelleClemens.com

BIll Gasiamis (45:28)

Michelle Lee Clemens (45:33)

BIll Gasiamis (45:35)

in the rehabilitation and the recovery path still and going for even better speech and even better hand movement.

Michelle Lee Clemens (46:11)

BIll Gasiamis (46:12)

Michelle Lee Clemens (46:15)

BIll Gasiamis (46:23)

Michelle Lee Clemens (46:25)

Thank you. Have a good day.

Bill Gasiamis (46:30)

I’m fluent. The intelligence was never in question. Only the road back to getting out of it. You can find Michelle’s book and more about her work as a speaker and documentary producer at MichelleClemens.com. It’s also available on Amazon and at Barnes Noble. If you’ve been told your own recovery has hit a plateau or you’re just feeling stuck and not sure what’s next, I offer one-on-one coaching for stroke survivors.

Structure, accountability, and support from someone who’s lived it. You can apply at recoveryafterstroke.com/momentum. If this episode helped you understand aphasia a little better or reminded you that the plateau isn’t the finish line, share it with someone who needs to hear it.

For more tools for your own recovery, my book, The Unexpected Way That a Stroke Became the Best Thing That Happened, is available at Recoveryafterstroke.com/book. And if the show has been valuable to you, you can support it at Patreon.com/recoveryafterstroke.

I’m Bill Gassiamas. Thanks for listening, and I’ll see you on the next episode.

The post Michelle Lee Clemens – The News Anchor Who’s Winning Her Words Back appeared first on Recovery After Stroke.