Recovery After Stroke

Unmet Needs After Stroke: Why Therapy Isn’t Always Enough

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

What 83 Stroke Survivors and Carers Actually Asked For

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

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

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

It’s Not Just This Audience

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

Why Information and a Plan Seem to Matter So Much

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

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

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

What This Means for Your Recovery

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

What the Research Doesn’t Tell Us Yet

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

Three Questions to Bring to Your Treating Team

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

Before your next appointment, write down the three questions you most want answered, and ask all three.

Ask directly: “What’s the plan for the next three months, and what’s my part in it?” and ask them to write it down.

Find one person who’s already where you’re trying to get to a support group, an online community, someone further along in recovery, because feeling alone in this was one of the things people raised most often.

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

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

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

Long-Term Effects of Stroke: 32 Years After Alan Durnwirth’s AVM Rupture

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

In March 1994, Alan Durnwirth was 24, five months from his wedding, and new to his first management role. After a wisdom tooth extraction he became lethargic and mentally foggy, and his dentist reassured him more than once that recovery can take longer than people expect. Over the following weeks the right side of his face began to droop. Then one morning he woke paralyzed down that side, barely able to say his fiancée’s name.

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

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

What an AVM rupture is, and why it counts as a stroke

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

The long-term effects of stroke nobody warns you about

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

Slower processing and word-finding. His thinking is sometimes slow, and a sentence can stall while he looks for the next word.

Visual and sensory overload. Screens can bring on nausea and seizure-type sensations if he pushes too far.

Fatigue. For years he put it down to ordinary eye strain.

Focal epilepsy and right-sided fine-motor weakness, both of which he still manages.

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

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

When the symptoms hide in plain sight

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

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

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

What 32 years of recovery looks like

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

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

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

Turning a lifelong undercurrent into a book

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

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

Frequently asked questions

What are the long-term effects of stroke after an AVM rupture?

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

Can you keep recovering decades after a stroke?

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

What is an AVM rupture?

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

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

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

Alan Durnwirth: 32 Years After an AVM Rupture and the Undercurrent That Shaped His Life (Interview)

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

Highlights:

00:00 They said it was just the tooth

10:59 Why he had to work for himself

15:20 How he hid the missing time

19:00 When the word just goes

27:43 The medication change nobody tapered

42:00 Everybody has an undercurrent

50:55 Twenty minutes to live

Transcript:

They said it was just the tooth

Bill Gasiamis (00:00)

So what is it like to rediscover yourself?

Alan Durnwirth (00:02)

I feel it feels great to rediscover yourself.

I can honestly say that I I love myself now.

I’ve let so much.

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

that I can just move forward.

Bill Gasiamis (00:23)

Welcome to Recovery After Stroke. I’m Bill Garciamas and my guest today is Alan Durnworth.

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

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

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

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

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

Bill Gasiamis (02:06)

Alan Dunworth. Welcome to the podcast.

Alan Durnwirth (02:08)

Thank you for having me, Bill.

Bill Gasiamis (02:10)

My pleasure. You are an AVM superhero.

Alan Durnwirth (02:16)

Ha ha ha.

Bill Gasiamis (02:17)

So we’ve got

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

Alan Durnwirth (02:44)

Mm.

Bill Gasiamis (02:45)

an AVM rupture and all

Alan Durnwirth (02:46)

Mm-hmm.

Bill Gasiamis (02:47)

that kind of thing. Before we talk about the AVM that you had in your brain that ruptured, take me back a little bit to before the rupture, what was life like in your early twenties?

Alan Durnwirth (03:00)

In my early twenties, I actually was feeling pretty good. I had undiagnosed seizures my whole childhood, and they were absence and focal seizures.

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

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

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

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

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

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

Bill Gasiamis (04:31)

This is

Alan Durnwirth (04:36)

And I woke up one morning and I was paralyzed on my right side, and I could barely speak. And at the time I was engaged to to my wife, and

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

Bill Gasiamis (04:59)

I fell asleep.

Alan Durnwirth (05:02)

how that feeling, you just feel like your arm fell asleep or what and I wasn’t thinking quite straight. I got, I I I finally woke her up and she realized there was something seriously wrong. because I I couldn’t even say her name barely.

Bill Gasiamis (05:12)

Mm-hmm

Alan Durnwirth (05:19)

And she took me to the emergency room.

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

Bill Gasiamis (05:37)

Yeah, your seizures, how severe were they before that?

Alan Durnwirth (05:41)

They were not very severe. I was having them in class as a as a child, and it looked like they were just zoning out or daydreaming. You know, that’s what absence seizures are like. They aren’t convulsive. And so I didn’t see them as anything, you know. I thought that was just how I was. but I was missing time.

Bill Gasiamis (06:06)

That was pissing.

Alan Durnwirth (06:08)

I was missing time multiple times throughout the day. And I couldn’t understand why I couldn’t keep the lesson straight. Like I didn’t know what I was doing, you know, by the end of class some days. I’m like, I I didn’t get the lesson. What are we doing for tomorrow? You know, that kind of thing. But I was missing chunks of time.

Bill Gasiamis (06:27)

Mm-hmm.

Alan Durnwirth (06:29)

Sometimes, you know,

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

Bill Gasiamis (06:50)

So awesome.

Alan Durnwirth (06:50)

very anxious child.

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

Bill Gasiamis (07:01)

Yeah. So the AVM kind of revealed that the seizures were not a thing that you

Alan Durnwirth (07:09)

It they weren’t

Bill Gasiamis (07:11)

were just making up or you absent minded from a kid’s perspective, you know, that doesn’t pay attention or that gets easily distracted or something like that.

Alan Durnwirth (07:22)

Exactly, yes, but that’s that’s what I was looked at. You know, teachers just thought I was always, you know, distracted and I was always just daydreaming.

Bill Gasiamis (07:32)

Did it ever become a scan of the brain or did anyone ever look to see what was happening perhaps?

Alan Durnwirth (07:39)

No. I never had a s a brain scan until I was twenty five years old or twenty four or almost twenty five when I had my right before I had my brain surgery.

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

Bill Gasiamis (08:00)

Hmm. And what was it like to get those answers to be told that you’ve had a stroke and things are not well, you’re in hospital. And at some point you’re told you have a bleed in the brain. Does anyone connect the dots immediately or does that happen later?

Alan Durnwirth (08:18)

It it was later. It was later. but when I heard bleeding in the brain, brain surgery, it was just very surreal. You know, it was hard for me to comprehend at that point. you know I went from you know a life-changing situation overnight.

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

Bill Gasiamis (08:44)

What kind of deficits did you end up with?

Alan Durnwirth (08:48)

well I had trouble walking ’cause paralysis on my right side.

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

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

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

My cognitive ability is sometimes very slow.

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

Bill Gasiamis (09:47)

Over stimulating you and making you fatigued.

Alan Durnwirth (09:50)

Yes, yes. And I’ve worked on a computer for years and I didn’t make the connection that

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

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

Visual just some some break.

Bill Gasiamis (10:46)

Mm-hmm. And how long were you in hospital after the brain surgery?

Why he had to work for himself

Alan Durnwirth (10:52)

I was in intensive care for a week or two and then I was in in rehab for I think eight weeks, but then I was outpatient care for quite a while.

Bill Gasiamis (11:07)

What does it do to a 24 year old other than the obvious physical part of it? How does it impact you in other ways?

Alan Durnwirth (11:15)

I was it it impacted everything in my life. I was a re I I graduated graduated from college. I had my first real job. I was a manager at a company. I had employees under me.

I was getting married in five months at that time.

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

You know, ever

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

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

work at my own pace, you know.

Bill Gasiamis (12:09)

Mm-hmm.

What kind of work were you before the bleed?

Alan Durnwirth (12:14)

graphic design and I worked for a company that did embroidery digitizing.

Bill Gasiamis (12:20)

Mm-hmm.

Alan Durnwirth (12:21)

So it’s all computer work.

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

live my life the way I need to live it.

Bill Gasiamis (12:51)

Wow. That’s such a blessing that you were able to set that up early on. Was it something that you planned or did you just fall into that kind of scenario or setup or was it by necessity?

Alan Durnwirth (13:04)

necessity. It was, you know, I had no thoughts in my head to start my own business. It was necessity. I had nothing to lose. I mean, at the time, to tell you the truth, I didn’t know how much longer I had to live.

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

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

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

Bill Gasiamis (14:11)

This is I supposed to do. I haven’t seen your face. But I was

just… You know there’s life

Alan Durnwirth (14:16)

Even though there’s life going

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

you know

Bill Gasiamis (14:25)

evening.

Alan Durnwirth (14:27)

depression of

Bill Gasiamis (14:28)

and I’ll

Alan Durnwirth (14:30)

and I didn’t I didn’t realize that until

Bill Gasiamis (14:30)

things.

Alan Durnwirth (14:34)

I did change my medicine at one point I’m like, this is what is this is what it’s supposed to feel like. This is what you know.

Bill Gasiamis (14:41)

It’s interesting point

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

Alan Durnwirth (14:46)

Right.

Bill Gasiamis (14:47)

And you live with something because you’ve always lived with it. It’s always been that way, but you’ve forgotten to check in with somebody about it. I’ve met so many people who are on lifelong journeys of taking medication and never once questioned, you know, 15 years later or 10 years later or eight years later, do I still need this? You know, you’re like,

How he hid the missing time

Alan Durnwirth (15:08)

I I I I did that. You know, I would go in at to doctor’s appointments and go, do I still need this medic? I mean, how how do we know I still need it? I feel good. You know, I haven’t had a seizure in years. But it’s you know, you don’t want to go off it. You don’t want to run that risk of

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

Bill Gasiamis (15:34)

Mmm.

Alan Durnwirth (15:36)

Luckily I was able to pull off the road and have the seizure. I don’t know how my body knew that I needed to get to safety, but

Bill Gasiamis (15:46)

Mm-hmm.

Alan Durnwirth (15:46)

that that happened.

Bill Gasiamis (15:47)

Wow, that’s profound. So you’re 24, you have a bleed in the brain, you have brain surgery, you have to learn how to walk again and talk and do all that kind of stuff. You have to start a new business. You start a new business and you told me you didn’t know whether or not you were going to be alive 12 months later. At some point, did you reflect on, I’ve passed the 12 month mark or.

Did you have those types of conversations with yourself?

Alan Durnwirth (16:14)

I didn’t because life just kept happening and that twelve months wasn’t smooth. I mean, within that twelve months I went off of my anti seizure medicine and that’s when I had the grandma’s seizure and so I was, you know

It wasn’t a smooth

Bill Gasiamis (16:32)

And what’s that like?

What was it like having one of those seizures?

Alan Durnwirth (16:36)

Stages or seizure.

Bill Gasiamis (16:37)

seizures. What was it like having one of those?

Alan Durnwirth (16:39)

Well, I don’t remember it, but it’s a very con convulsive seas

Bill Gasiamis (16:44)

convulsive.

Alan Durnwirth (16:45)

yes. and and

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

Bill Gasiamis (16:55)

Yeah.

Alan Durnwirth (16:55)

And it’s scary. You know, even though I I didn’t know it was happening, I’ve had I’ve had a a few of them. but it’s very scary for people that are wit witnessing it.

Bill Gasiamis (17:09)

People around you like your wife.

Alan Durnwirth (17:11)

Exactly. Right.

Bill Gasiamis (17:13)

Yeah,

so she had known you before all of the drama.

Alan Durnwirth (17:17)

Yes.

Bill Gasiamis (17:17)

Had she witnessed those daydreaming kind of episodes that people were used to you having?

Alan Durnwirth (17:24)

she didn’t she may have witnessed them, but she didn’t know what they were as such. We were together for five years and I I got really good at covering up the gaps.

You know.

Bill Gasiamis (17:36)

So you

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

Alan Durnwirth (17:41)

Exactly. Or

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

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

Bill Gasiamis (17:59)

Do you

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

Alan Durnwirth (18:07)

mostly I would say thirty seconds at a time, sometimes less. and

Bill Gasiamis (18:15)

Mm-hmm.

Alan Durnwirth (18:15)

it’s hard to say that when I was a kid it felt like a lot longer.

Bill Gasiamis (18:21)

Mm-hmm.

Alan Durnwirth (18:21)

Because with the Nav as a kid and I I would be running it la it it the oxygen it takes oxygen from your blood and it and I would pass out basically when I was running as a you know

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

Bill Gasiamis (18:52)

Hello kitty cat.

When the word just goes

Alan Durnwirth (18:57)

So I would wake up

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

Bill Gasiamis (19:11)

Yeah, so you’re 24, you have a, bleeding the brain, surgery, everything, gets upended. Five months after you’re in that five months, you were going to get married.

Alan Durnwirth (19:25)

I did. I dig.

Bill Gasiamis (19:26)

Did you still get married?

Alan Durnwirth (19:27)

We still got married. And we’re still married today, in fact. Yes.

Bill Gasiamis (19:29)

Wow, okay. Yeah, that’s amazing. I am amazing

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

Alan Durnwirth (19:42)

I still had, you know, deficits for sure. My goal was and and my goal when I was in rehab was I need to be able to walk down the aisle and say I do clearly. And and and I did both of those.

Bill Gasiamis (20:01)

Yeah

Alan Durnwirth (20:04)

and and my wife is an angel. I mean she’s been with me for

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

Bill Gasiamis (20:20)

Yeah, you definitely are. mean, most any woman who’s going to spend almost 40 years with some man is an amazing person to have to put up with all of that.

Alan Durnwirth (20:31)

Yes, yeah, exactly.

Bill Gasiamis (20:33)

That’s good. So you guys got married and how long after that did the kids come?

Alan Durnwirth (20:38)

about five years later.

Bill Gasiamis (20:40)

What kind of neurological phase and physical recovery were you in by the time the kids came? How did you handle that?

Alan Durnwirth (20:48)

I was feeling a lot better. I mean I still physically I was stronger, mentally,

I was feeling a lot better.

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

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

Bill Gasiamis (21:05)

Yeah. What

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

Alan Durnwirth (21:10)

No, it wasn’t emo it was like my brain cut off for a second. I was trying to trying to find the words, trying to you know

Bill Gasiamis (21:20)

Yeah.

Alan Durnwirth (21:21)

get back to the cowards

Bill Gasiamis (21:22)

the sentence.

Alan Durnwirth (21:23)

yeah, ca get back to the damn.

Bill Gasiamis (21:26)

Okay, that’s interesting. How do people react to that? So I know what was happening. I just needed to hear you explain it in your words. I kind of understand, because I’ve interviewed 400 stroke survivors and I went through the same trouble that you’re going through. Your

Alan Durnwirth (21:42)

Mm-hmm.

Bill Gasiamis (21:42)

wife’s probably very comfortable with what happens. She knows exactly what’s happening. She knows you better than anybody. But

Alan Durnwirth (21:48)

Mm-hmm.

Bill Gasiamis (21:49)

how do people react to seeing you?

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

Alan Durnwirth (21:56)

I I I say can you give me a second?

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

The gaps, you know, covering up

And using that as like a pause.

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

You know, it looks really normal. You know.

Bill Gasiamis (22:16)

Yeah, I love it.

Alan Durnwirth (22:19)

At least to me it feels, you know, like it’s intentional. You know, d just

Bill Gasiamis (22:23)

Yeah.

Alan Durnwirth (22:24)

give me a just give me a second. And

Bill Gasiamis (22:26)

They think you’re more intelligent and deeper thinking.

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

Alan Durnwirth (22:52)

Mm-hmm.

Bill Gasiamis (22:54)

you know, it co-exists in a world which is perhaps much more faster paced, especially in conversations or meetings or,

Alan Durnwirth (23:02)

Mm-hmm.

Bill Gasiamis (23:03)

negotiations or things about work or all that type of

Alan Durnwirth (23:07)

Right.

Bill Gasiamis (23:08)

stuff, you know, and always meeting new people. You don’t have the ability to educate them on your past and how your brain works. And I imagine that would be

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

Alan Durnwirth (23:22)

Mm-hmm.

Bill Gasiamis (23:23)

preempt your pause in your thinking or in your conversation.

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

Alan Durnwirth (23:36)

Mm-hmm. With my work, I I don’t talk on the phone much anymore. I don’t think anybody does really. It’s mostly email. And even if I do have a conversation on the phone, I ask them to recap and send me the email or something like that. Because then I have it in writing, I can go back to it. or if it have an email exchange is always in writing, I can go back and I don’t, you know.

It’s nice to have a paper trail.

Bill Gasiamis (24:06)

physical database of the conversation so that you can just refer back to it anytime you want.

Alan Durnwirth (24:14)

Right, exactly.

Bill Gasiamis (24:16)

I love it. So technology has been good to you. Imagine, has AI helped in that space as well, or is that?

Alan Durnwirth (24:22)

I haven’t used

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

Bill Gasiamis (24:27)

Yeah, that’s okay.

Alan Durnwirth (24:28)

I would say the the the biggest thing is yeah, no, I don’t use AI. It it hasn’t

Yeah.

Bill Gasiamis (24:35)

It hasn’t come up as a thing that you need to use. That’s perfectly fine. So what was it like being a dad with all of the challenges that stroke causes? For me, my children were teenagers and it was really difficult when I was going through all the acute phase of my bleed and recovery. It was challenging

Alan Durnwirth (24:55)

Mm.

Bill Gasiamis (24:56)

because teenagers are really annoying human beings and

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

Alan Durnwirth (25:04)

Mm-hmm.

Bill Gasiamis (25:05)

dealing with a, know, brain bleed and brain surgery and all that kind of stuff. But little babies, they’re little babies too, you know? And if you’re

Alan Durnwirth (25:13)

Sure.

Bill Gasiamis (25:13)

getting overwhelmed by your computer monitor, I imagine that all of the hustle and bustle around children will be a challenge as well. How did you manage that?

Alan Durnwirth (25:25)

Well, when I started my own business and then when it started going fairly well and we had our first child, my wife left her job, so she was home and I was home as well. And so I didn’t have the hands on as much during the day. My wife took care of, you know, our first and our second being at home.

But I was able to

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

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

Bill Gasiamis (26:13)

Hmm.

Alan Durnwirth (26:13)

I was very fortunate to be able to be home with my kids.

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

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

Bill Gasiamis (26:36)

Mm-hmm. You guys had that unique gift that occurred because of the necessity to work from home, start your own business, work at your own pace. That just

Alan Durnwirth (26:48)

Mm-hmm.

Bill Gasiamis (26:49)

also then became, well, now I’m at home working at my own pace and around the children. Your wife’s able to be at home. So it was a very unique opportunity to go into parenthood and to manage.

the very early years of raising the children. Such

Alan Durnwirth (27:08)

Mm-hmm.

Bill Gasiamis (27:09)

an unbelievable outcome. All things considered from where you guys started off five months before you were married.

Alan Durnwirth (27:16)

sure. Exactly. Yeah. Well, at the time I had my brain surgery, you know, my wife could have still left. She had we didn’t have kids. We weren’t married yet. You know, she had every opportunity to to to run the opposite direction, but she really became closer when I couldn’t find my words. She was there to to help me out.

Bill Gasiamis (27:42)

She may have had the opportunity, it doesn’t sound like she even contemplated it.

The medication change nobody tapered

Alan Durnwirth (27:46)

I don’t believe she did, no. And that that’s just you know, the kind of person she is and and and I knew that

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

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

Bill Gasiamis (28:06)

Yeah, it’s a great outcome. How old are the kids now?

Alan Durnwirth (28:08)

twenty two and twenty six. Twenty three and twenty

Bill Gasiamis (28:10)

What’s it like

Alan Durnwirth (28:11)

six.

Bill Gasiamis (28:11)

and what’s it like for them to experience your version of processing and thinking compared to their mum?

Alan Durnwirth (28:17)

I don’t know if they notice it.

or they’re used to it.

Bill Gasiamis (28:21)

Well, that’s just dad has always been that way.

Alan Durnwirth (28:23)

Dad’s always been that way. Yeah.

Bill Gasiamis (28:25)

Yeah,

standard, normal, whatever.

Alan Durnwirth (28:28)

Yeah.

Bill Gasiamis (28:28)

Yeah. And how old are you now?

Alan Durnwirth (28:31)

fifty seven.

Bill Gasiamis (28:32)

So you’ve been on a really long journey. I don’t think I’ve interviewed anyone who’s been that many years out from stroke. So 24 when it happened, 57 now, so 33 years.

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

Alan Durnwirth (28:59)

yes. And some days are more than others. And I’ve learned to slow down and rec I recognize it.

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

Bill Gasiamis (29:16)

Mm-hmm.

Alan Durnwirth (29:17)

And that really calms my mind.

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

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

Because actually several years ago I had a a mishap with

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

Bill Gasiamis (29:44)

in a bad way.

Alan Durnwirth (29:45)

in a bad way.

Bill Gasiamis (29:46)

Mm-hmm.

Alan Durnwirth (29:48)

And I was taking both medicines at the same time. They didn’t say the taper. And it basically had a a psychotic disorder.

Bill Gasiamis (30:00)

breakdown.

Alan Durnwirth (30:01)

Yeah. I mean nothing I didn’t know I I didn’t know how to tr I didn’t trust my mind anymore.

Bill Gasiamis (30:07)

Hmm.

Alan Durnwirth (30:08)

and then when I went off of it, they didn’t say to taper, he just said reverse course, go back to your old regiment. And so going off

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

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

Bill Gasiamis (30:42)

So the interesting scenario, so you’re on a certain medication for a period of time and then they switch it. Why did they switch it?

Alan Durnwirth (30:49)

Well, was on the one medicine for so many years and after fifteen years they said there’s better medicines now, you know.

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

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

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

Bill Gasiamis (31:31)

And then you’ve changed your medication. You’re taking a new one in conjunction with the old one now. So they added one.

Alan Durnwirth (31:37)

Exactly. They didn’t say it.

Bill Gasiamis (31:39)

They added one. Did you guys miss the instructions or something? Or is that how you instructed to add this one rather than take that one out?

Alan Durnwirth (31:50)

As far as I remember and documentation, it was just the for the first week take this an additional additional medication, the next week you double it, then then triple and then so by the f you know, a month out I was taking double what I was taking, what my body was used to. And

And my my my mind was just

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

Bill Gasiamis (32:21)

Did anyone link it to the new medication? If everything was stable before that for a certain amount of time.

Alan Durnwirth (32:27)

Of course, my wife was around me the most, you know, and she she made the connection. and it wasn’t until I went back to my neurologist that it got sorted out. But

Bill Gasiamis (32:39)

how long

Alan Durnwirth (32:39)

There is quite

Bill Gasiamis (32:40)

had lapsed between when you started taking it and when it was sorted out.

Alan Durnwirth (32:44)

Couple months.

Bill Gasiamis (32:45)

Wow.

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

Alan Durnwirth (32:50)

I did not. No. I was I was spending my days alone

Bill Gasiamis (32:56)

Mmm.

Alan Durnwirth (32:57)

and you know my wife was at work, the kids were at school and

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

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

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

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

Bill Gasiamis (33:44)

Mm-hmm.

Alan Durnwirth (33:46)

and where when it was probably the worst is when I got thoughts of burning my house down to save my family. Because

Bill Gasiamis (33:57)

from

Alan Durnwirth (33:58)

I because I thought my house was gonna kill us from the mold spores or the gas leak or whatever.

Whatever there was yeah.

And that was the low that was the lowest

Bill Gasiamis (34:08)

That sounds intense,

Alan Durnwirth (34:10)

point. Of course that didn’t happen.

Bill Gasiamis (34:14)

Because you’re in the house

right now, thank God.

Alan Durnwirth (34:16)

I’m in the house right now. Yep.

Bill Gasiamis (34:20)

my gosh, that’s just crazy

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

Alan Durnwirth (34:27)

yes.

Yes.

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

Bill Gasiamis (34:38)

It’s

Alan Durnwirth (34:39)

like this? And when has it been when have you, you know, when did you start getting worse and I see what’s happening now? Let’s let’s go talk to your doctor again and and see what what we can do.

Bill Gasiamis (34:54)

So then after that was sorted with the doctor, the walking became an embedded thing that you had to do or that you choose to do. How does it play a role in your life now? Other than being exercise and good for you, how else does it play a role?

Alan Durnwirth (35:11)

Essentially it’s kind of maintenance for me. You know, I take my medication, I I walk and I eat well, and it’s all maintenance.

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

Bill Gasiamis (35:31)

And it’s somehow

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

Alan Durnwirth (35:36)

Yeah. Sh she she she recognizes it and she’s very very good about saying, do what you need to do. Yeah.

Bill Gasiamis (35:50)

My wife

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

do something. What do you need to do?

Alan Durnwirth (36:17)

Sure.

Bill Gasiamis (36:17)

I don’t know. Well, don’t do chores now. I want to go to bed. I don’t need you running around like a crazy woman doing

Alan Durnwirth (36:22)

Ha ha ha.

Bill Gasiamis (36:24)

chores and fixing things and tidying things up and all that kind of stuff. I was just trying to work out like what’s behind that. What happens? Cause I don’t know. I just have some energy. I need to burn. said, well, go for a run or something. You know, just, just go outside.

Alan Durnwirth (36:36)

Sure.

Bill Gasiamis (36:37)

Just leave me alone. Stop fussing around the house.

Alan Durnwirth (36:39)

Well that’s probably what she feels like. my

Bill Gasiamis (36:42)

Yeah.

Alan Durnwirth (36:42)

wife feels like, like, okay, your energy is too much for me right now.

Bill Gasiamis (36:48)

Yeah,

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

Alan Durnwirth (37:10)

Mm.

Bill Gasiamis (37:11)

at 10 30 PM. Tell me about

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

Alan Durnwirth (37:23)

Okay.

Bill Gasiamis (37:23)

us the book is silent fuse living with the undercurrent that shaped my life. So I imagine, you know, that means living with the condition or the brain injury or the AVM

Alan Durnwirth (37:35)

Exactly, yes.

Bill Gasiamis (37:37)

that kind of shaped your life after the age of 24. There’s a cool photo on the front. Who’s on the front of the book? You and.

Alan Durnwirth (37:43)

This is my my brother Brian, my dog Pepper, and myself back in the 70s on the the 40 acres of land that we grew up on. And the book starts back when I started having seizures and then and didn’t know about it and how it

Bill Gasiamis (38:01)

how old?

Alan Durnwirth (38:02)

shaped. My first seizure I remember is six years old.

Bill Gasiamis (38:08)

Okay.

Alan Durnwirth (38:08)

Yeah. and then it goes through you know, some school my school years and how it affected me up until I had my my bleed and then after. But what happened is that

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

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

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

Bill Gasiamis (39:40)

you

Alan Durnwirth (39:40)

through my life and they’ve seen it but they didn’t realize it. They didn’t realize what was happening before and the reason why I’ve done things now when they were kids and I was home and and and doing things with them that I felt I missed. I got to live my childhood over, basically, you know.

Bill Gasiamis (40:03)

Yeah.

Alan Durnwirth (40:04)

Because in some ways when I was, you know, after I had my brain bleed, I felt like I had a new lease on life. Like, okay, I’m gonna I have another chance. I need to do this. I need to get through this as as well as I can. And

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

Bill Gasiamis (40:34)

Yeah, mindset and attitude play a massive role in recovery because it helps to create a foundation for a good recovery. If

Alan Durnwirth (40:43)

Mm-hmm.

Bill Gasiamis (40:44)

you’ve got a bad attitude, well, it’s not gonna be a good foundation and if it’s gonna be shaky, so it’s gonna be hard.

Alan Durnwirth (40:49)

Right.

Bill Gasiamis (40:49)

If you can manage your attitude and your mindset, by manage it, mean, keep it.

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

Alan Durnwirth (41:02)

Mm-hmm.

Bill Gasiamis (41:03)

then that’s a good way to go. The book becomes a thing that occurs just because it was the next step, because everything else that came before it was a short memory, then an elaboration on that memory, and then somehow a structured story that went into the next one that kind of just…

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

Alan Durnwirth (41:28)

It’s about my story, yes. and it’s it it initially it was just putting perspective to my life and understanding that

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

Bill Gasiamis (41:58)

So it’s helped you come

Alan Durnwirth (41:58)

Until

Everybody has an undercurrent

Bill Gasiamis (42:00)

to terms with every single thing that you’ve been through up until you had the bleed and then after the bleed.

Alan Durnwirth (42:06)

How did I come to terms? Well, I had to

Bill Gasiamis (42:09)

Did it help you come to terms with it or?

Alan Durnwirth (42:12)

It did. It did. I I learned not to blame people and situations on my outcome or what happened. Because when I was younger I could have been on on

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

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

Bill Gasiamis (42:51)

Hmm. And when did you start writing the book?

Or actually, when did you start jotting

Alan Durnwirth (42:53)

Well, I

Bill Gasiamis (42:55)

down the notes for? Okay. So it’s

Alan Durnwirth (42:58)

Several years ago. Yeah.

Bill Gasiamis (43:02)

been like a really long therapy session.

Alan Durnwirth (43:04)

It has, and I d it’s only been a few years that I

started compiling it. it was very difficult to

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

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

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

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

Bill Gasiamis (44:07)

Yeah. Nobody gets away with going through life scot-free. Everyone has something going on.

Alan Durnwirth (44:13)

No, no.

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

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

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

Bill Gasiamis (44:50)

Is the jotting down of those stories the first time that you started to contemplate you and yourself and why you are you and who, are you really you or are you parts of your parents and parts of the other people that you were living with? Was it the first time that you started contemplating that or had you been on that self-reflection and introspection journey years earlier?

Alan Durnwirth (45:17)

No, it wasn’t until I had the the went off the drug mishap that I really started the and it and it was because of the walks. I was more of like a meditative meditative situation in a walk that your

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

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

Bill Gasiamis (46:02)

Mmm.

Alan Durnwirth (46:02)

So

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

Bill Gasiamis (46:11)

Hmm. So what is it like to rediscover yourself?

Alan Durnwirth (46:16)

I feel it feels great to rediscover yourself.

I can honestly say that I I love myself now.

I’ve let so much.

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

that I can just move forward.

You know.

Bill Gasiamis (46:38)

Are we getting

in the way of your life?

Alan Durnwirth (46:41)

Yeah, yeah.

Bill Gasiamis (46:42)

In what way? What were they stopping you from doing? Do you have a sense of that?

Alan Durnwirth (46:45)

Not necessarily

stopping, but there’s kind of

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

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

to fruition. I don’t know. I

Bill Gasiamis (47:08)

Has it just made it possible for you to contemplate things that perhaps before you would have just brushed off as that’s not possible or not doable or I can’t do that? Has it just opened yourself to more possibilities?

Alan Durnwirth (47:19)

It has. It has opened myself to more polic possibilities. And I have more time now. My kids are, you know, my wife and I are empty nesters and so but you have more time to think and and you don’t have, you know, kids at home that are demanding your attention at times of the day.

Bill Gasiamis (47:40)

find that a huge benefit like being an empty nest, so to speak, just the amount of extra time that’s allocated to an idea. For example, if I have an idea, you know, that

Alan Durnwirth (47:52)

Mm-hmm.

Bill Gasiamis (47:53)

I want to work through or develop, or I can do that in a shorter amount of time. Previously, you know, it would be interrupted by sports or pickups or drop offs or have you done your homework or

the usual stuff, you know? And now

Alan Durnwirth (48:10)

Exactly.

Bill Gasiamis (48:11)

it’s like, if I’m not working, if I’m at home and my wife’s at work, I have got nine hours that are all mine that I can just throw myself into whatever it is that I’m working on. And it’s so, it’s such an amazing thing to have time to do, to do a deep dive into a topic, you know?

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

Alan Durnwirth (48:47)

Right.

Bill Gasiamis (48:48)

But also my brain has healed much more in that time compared to where I was when I was writing the first book.

Alan Durnwirth (48:56)

Sure, yeah. I understand.

Bill Gasiamis (48:57)

And then, you

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

Alan Durnwirth (49:09)

Yeah. Yeah.

Bill Gasiamis (49:11)

it, you’ve got something because you just had the opportunity to go back again and again and again and just keep chipping away, keep chipping away. And it’s that long game, you you’re playing the long game. It’s like, if I

Alan Durnwirth (49:22)

Mm-hmm.

Bill Gasiamis (49:23)

go to do this every single day,

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

Alan Durnwirth (49:38)

Exactly.

Bill Gasiamis (49:39)

done and accomplished and habits that we’ve formed and challenges

Alan Durnwirth (49:43)

Mm-hmm.

Bill Gasiamis (49:43)

we’ve overcome. So I know what you mean. I can really relate to that empty nesters.

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

Alan Durnwirth (49:58)

One thing without the kids at home, of course, like you said, you miss but I feel like I’ve gotten to know my wife again.

Bill Gasiamis (50:07)

Yeah.

Alan Durnwirth (50:07)

And that’s you know, I’ve seen I’ve seen couples that when the kids leave then they split, like we don’t have anything at left. You know, but we have such a rich history that we just you know, you find a way and you you know

Bill Gasiamis (50:24)

If you’re curious about each other rather than sort of judgmental, you will find a way. I believe you’ll find a way. And it’s for us, we went through something similar. Okay, so the fussing over the kids and all that stuff has ended. We’ve been doing that for 20 odd years.

Alan Durnwirth (50:42)

No.

Bill Gasiamis (50:42)

What do we do now?

Alan Durnwirth (50:43)

Exactly, exactly.

Twenty minutes to live

Bill Gasiamis (50:46)

And what was really

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

Alan Durnwirth (51:00)

yeah.

Bill Gasiamis (51:00)

do, you know, finish her studies from when she was in her twenties, which she intended in her twenties, but we became young parents. So parenthood and all that stuff was what,

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

Alan Durnwirth (51:20)

Right. Yeah. Yeah.

Bill Gasiamis (51:25)

finishing her studies and fully qualified at 57. And then she’s gonna set up her own practice. And

Alan Durnwirth (51:32)

Great. Yeah.

Bill Gasiamis (51:33)

it is possible to rediscover and continue on with something that you’ve put on hold and…

Alan Durnwirth (51:41)

Mm-hmm.

Bill Gasiamis (51:41)

and start living the other part of your dreams, that part that you had to pause for a little while. It’s

Alan Durnwirth (51:50)

Right.

Bill Gasiamis (51:51)

a long game and stroke recovery is often that, it’s often a long game. And while the acute phase can be hard, you can get some kind of consistent movement forward if you practice little things that make your life better.

whatever they are for you. And

Alan Durnwirth (52:09)

Exactly. Yes.

Bill Gasiamis (52:10)

I love that you’ve sort of healed from the past by going on this journey, the book, what isn’t just a story about somebody who lived through all this difficult time, but it’s also become a tool. like the thing that healed you almost.

Alan Durnwirth (52:27)

Exactly. Exactly. It’s it’s essentially

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

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

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

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

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

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

Bill Gasiamis (53:26)

Yeah, would have taken a bit too long.

Alan Durnwirth (53:29)

Yeah.

Bill Gasiamis (53:29)

Sometimes I remember many, many years ago, the first person I ever met who had a brain hemorrhage due to an aneurysm was the friend of my wife. She was 21 years old at the time. So I’ve been with my wife for 30 or more years as well, 32 years or something like that. Before we were married, we would hang out and a mutual friend of ours was 21 and had a brain hemorrhage. And her brother,

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

Alan Durnwirth (53:59)

Mm-hmm.

Bill Gasiamis (53:59)

because the alternative of waiting with her for an ambulance to be dispatched, even though the hospital was nearby, that ambulance may have been anywhere. And

Alan Durnwirth (54:09)

Exactly.

Bill Gasiamis (54:10)

he realized the quickest path to the hospital, which was maybe five or maybe two or three kilometers away, was from his house.

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

Alan Durnwirth (54:33)

Right.

Bill Gasiamis (54:33)

it wouldn’t have happened. So I know what you mean when you say that, I can relate to that. What an amazing decision under duress for somebody to make.

you know, in a difficult time.

Alan Durnwirth (54:48)

Mm-hmm.

Bill Gasiamis (54:48)

Alan, it’s been amazing chatting to you, getting to know you and learning a little bit about your story. Where can people get in touch with you if they wanted to reach out and where can I get the book?

Alan Durnwirth (55:01)

Well they can buy the book on Amazon or Barnes and Noboro and hopefully soon at your local bookstore. But Amazon is the the easiest at this point. and they can get a contact me at silent hyphenviews dot com or

Hello@silenthyphenfused.com for an email.

Bill Gasiamis (55:27)

All right, I really appreciate your time. Thank you so much for reaching out.

Alan Durnwirth (55:30)

Well thank you, Bill. Thank you for the time. I

Bill Gasiamis (55:33)

Well, that’s it for another episode of the Recovery After Stroke podcast. A massive thank you to Alan for being so open about a story he spent most of his life covering up. Now, what stays with me is that thirty-two years after stroke, it’s definitely not the finish line for Alan. It is a maintenance program that he’s got in place now to continue being fit, well and healthy.

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

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

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

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

Post-Traumatic Growth After Stroke: Why “Ready” Isn’t a Feeling You Wait For

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

The Sentence That Sounds Responsible, But Keeps People Stuck

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

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

What 26 Studies on Growth After Trauma Found

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

Why Growth and Distress Show Up Together

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

Life Doesn’t Queue Its Disasters

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

What the Stroke-Specific Research Shows

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

What This Research Doesn’t Yet Tell Us

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

Two Small Things to Do Before You Feel Ready

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

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

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

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

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

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

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

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

Growing Up Believing a Stroke Meant You Were Gone

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

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

Why His Arm Seemed to Move Then Stopped

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

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

The Physio Who Promised Him He’d Walk Again

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

Learning to Cry Again

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

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

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

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

A New Normal, On His Own Terms

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

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

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

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

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

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

Bobby Chaggar: Learning to Cry After Stroke (Interview)

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

Highlights:

00:00 Introduction

02:00 Life Before the Stroke

09:28 Rehabilitation Journey

12:00 Crying After Stroke

14:52 Reflections on Recovery and Growth

26:33 The Promise of Recovery and Writing a Book

29:37 Cultural Identity and Personal Beliefs

37:28 Relocation and Its Challenges

41:44 The Importance of Caregiver Self-Care

44:10 Adjusting to a New Normal

51:09 The Journey of Riding Again

57:09 Bobby’s Journey of Unlearning and Grief

Transcript:

Introduction – Crying after stroke

Ramandeep (bobby) chaggar (00:00)

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

in the hospital, I thought my arm started moving.

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

Bill Gasiamis (00:19)

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

Physiotherapist whose promise

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

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

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

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

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

Bill Gasiamis (01:56)

Bobby Chaggar. Welcome to the podcast.

Ramandeep (bobby) chaggar (01:58)

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

Life Before the Stroke

Bill Gasiamis (02:00)

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

Ramandeep (bobby) chaggar (02:10)

Ha ha.

Bill Gasiamis (02:11)

did the animals come first?

Ramandeep (bobby) chaggar (02:14)

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

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

Bill Gasiamis (03:08)

I

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

Ramandeep (bobby) chaggar (03:09)

Yep. Yep, yep.

Bill Gasiamis (03:12)

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

Ramandeep (bobby) chaggar (03:22)

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

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

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

Bill Gasiamis (04:23)

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

Ramandeep (bobby) chaggar (04:26)

Yep, yep, yep.

We were just looking forward for the bike. Yep.

Bill Gasiamis (04:29)

I love it.

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

Ramandeep (bobby) chaggar (04:34)

Mm-hmm.

Bill Gasiamis (04:35)

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

Ramandeep (bobby) chaggar (04:47)

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

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

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

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

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

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

So we called

Bill Gasiamis (07:10)

Yeah.

Ramandeep (bobby) chaggar (07:11)

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

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

Bill Gasiamis (07:27)

Yeah.

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

Ramandeep (bobby) chaggar (07:42)

Yeah, that’s where I was. Yep.

Bill Gasiamis (07:43)

Yeah, good

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

Ramandeep (bobby) chaggar (07:52)

Yes.

Bill Gasiamis (07:53)

vets surgeons? Do they all operate on animals?

Ramandeep (bobby) chaggar (07:56)

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

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

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

Bill Gasiamis (09:05)

Yeah, understood. Understood.

Ramandeep (bobby) chaggar (09:08)

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

So things like that. Yep.

Bill Gasiamis (09:17)

amazing how far things have come. So

Ramandeep (bobby) chaggar (09:19)

yes, definitely. Yeah.

Rehabilitation Journey

Bill Gasiamis (09:20)

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

Ramandeep (bobby) chaggar (09:28)

Yep, yep, yep.

Bill Gasiamis (09:30)

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

Ramandeep (bobby) chaggar (09:42)

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

Bill Gasiamis (10:06)

Mm-hmm.

Ramandeep (bobby) chaggar (10:07)

so

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

Bill Gasiamis (10:22)

Yeah, that’s fascinating. I love it.

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

Ramandeep (bobby) chaggar (10:43)

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

Bill Gasiamis (11:09)

your

left side your whole left side was gone.

Ramandeep (bobby) chaggar (11:11)

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

Bill Gasiamis (11:18)

Hmm.

Ramandeep (bobby) chaggar (11:18)

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

Crying After Stroke

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

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

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

Bill Gasiamis (12:47)

What was the cause of the stroke?

Ramandeep (bobby) chaggar (12:48)

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

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

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

Bill Gasiamis (13:39)

Yeah.

Ramandeep (bobby) chaggar (13:42)

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

Bill Gasiamis (13:51)

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

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

Ramandeep (bobby) chaggar (14:26)

I think it was twenty five it was I think.

Bill Gasiamis (14:28)

voluntary voluntary movement first, first, yeah.

Ramandeep (bobby) chaggar (14:30)

Yeah, correct, correct.

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

Reflections on Recovery and Growth

Bill Gasiamis (14:52)

Okay.

Ramandeep (bobby) chaggar (14:53)

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

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

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

Bill Gasiamis (15:41)

tears of relief. Yeah.

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

Ramandeep (bobby) chaggar (15:52)

Yeah.

Bill Gasiamis (15:53)

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

Ramandeep (bobby) chaggar (16:06)

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

Bill Gasiamis (16:11)

Yep. Right.

Ramandeep (bobby) chaggar (16:13)

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

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

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

Bill Gasiamis (17:17)

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

Ramandeep (bobby) chaggar (17:26)

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

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

Bill Gasiamis (18:02)

Hmm.

Ramandeep (bobby) chaggar (18:03)

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

Bill Gasiamis (18:18)

Yeah. So

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

Ramandeep (bobby) chaggar (18:47)

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

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

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

Bill Gasiamis (19:50)

Yeah, man. I’m the same.

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

Ramandeep (bobby) chaggar (20:06)

Which one is that? No, so no, I’ve

Bill Gasiamis (20:07)

It’s a

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

Ramandeep (bobby) chaggar (20:14)

More.

Bill Gasiamis (20:15)

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

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

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

Ramandeep (bobby) chaggar (21:16)

Yep, yep, yep, yep.

Bill Gasiamis (21:20)

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

Ramandeep (bobby) chaggar (21:25)

Two thirty news, huh? So

Bill Gasiamis (21:28)

It’s not uncommon, very, very common.

Ramandeep (bobby) chaggar (21:30)

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

Bill Gasiamis (21:34)

If the,

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

Ramandeep (bobby) chaggar (21:52)

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

Bill Gasiamis (21:59)

Yeah. Yeah, I

used to cry with the cat tripping over or something

Ramandeep (bobby) chaggar (22:05)

Ha ha ha.

Bill Gasiamis (22:06)

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

Ramandeep (bobby) chaggar (22:12)

Short short.

Bill Gasiamis (22:15)

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

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

Ramandeep (bobby) chaggar (22:39)

wow.

Bill Gasiamis (22:39)

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

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

Ramandeep (bobby) chaggar (23:14)

I understand.

Bill Gasiamis (23:16)

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

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

Ramandeep (bobby) chaggar (23:37)

No, because

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

Bill Gasiamis (23:47)

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

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

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

Ramandeep (bobby) chaggar (24:33)

Yeah.

Bill Gasiamis (24:34)

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

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

Ramandeep (bobby) chaggar (25:05)

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

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

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

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

Bill Gasiamis (25:41)

Yeah. Yeah.

Ramandeep (bobby) chaggar (25:42)

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

Bill Gasiamis (26:03)

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

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

The Promise of Recovery and Writing a Book

Ramandeep (bobby) chaggar (26:33)

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

Bill Gasiamis (26:39)

Yeah,

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

Ramandeep (bobby) chaggar (26:43)

So I think in that situation

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

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

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

So I thought

Bill Gasiamis (27:41)

Yeah.

Ramandeep (bobby) chaggar (27:42)

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

Bill Gasiamis (27:45)

Yeah.

Ramandeep (bobby) chaggar (27:45)

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

Bill Gasiamis (27:48)

Yeah.

Ramandeep (bobby) chaggar (27:48)

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

Bill Gasiamis (27:55)

I love it.

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

Ramandeep (bobby) chaggar (28:01)

Yes go.

Bill Gasiamis (28:01)

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

Ramandeep (bobby) chaggar (28:14)

Yeah, yeah.

Bill Gasiamis (28:14)

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

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

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

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

you seek right?

Cultural Identity and Personal Beliefs

Ramandeep (bobby) chaggar (29:37)

Yes, I’ve yep, yep.

Bill Gasiamis (29:40)

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

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

Ramandeep (bobby) chaggar (29:57)

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

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

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

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

Bill Gasiamis (31:37)

Yeah.

Ramandeep (bobby) chaggar (31:38)

Yep, yep, yep.

Bill Gasiamis (31:39)

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

Ramandeep (bobby) chaggar (32:00)

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

Bill Gasiamis (32:03)

Uh-huh.

Ramandeep (bobby) chaggar (32:03)

a shame of an uncovered head, nothing on the

Bill Gasiamis (32:06)

Uh-huh.

Ramandeep (bobby) chaggar (32:06)

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

Bill Gasiamis (32:25)

Yeah. Is

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

Ramandeep (bobby) chaggar (32:33)

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

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

Bill Gasiamis (33:10)

Uh-huh.

Ramandeep (bobby) chaggar (33:10)

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

Personally ashamed of not being able to do it.

Bill Gasiamis (33:23)

Yeah.

Ramandeep (bobby) chaggar (33:24)

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

Bill Gasiamis (33:34)

Yeah. Yeah.

Ramandeep (bobby) chaggar (33:36)

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

Bill Gasiamis (33:38)

Yeah.

Ramandeep (bobby) chaggar (33:39)

too eager. Yep, yep.

Bill Gasiamis (33:40)

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

Ramandeep (bobby) chaggar (33:43)

yes.

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

Bill Gasiamis (33:55)

Uh-huh. Is

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

Ramandeep (bobby) chaggar (34:00)

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

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

Bill Gasiamis (34:52)

Was it like also, I

Ramandeep (bobby) chaggar (34:54)

Mm.

Bill Gasiamis (34:54)

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

Ramandeep (bobby) chaggar (35:03)

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

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

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

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

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

Bill Gasiamis (37:00)

I love it.

Ramandeep (bobby) chaggar (37:00)

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

Relocation and Its Challenges

Bill Gasiamis (37:02)

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

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

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

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

Ramandeep (bobby) chaggar (38:10)

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

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

Bill Gasiamis (39:03)

Isolated,

Ramandeep (bobby) chaggar (39:03)

But

Bill Gasiamis (39:04)

you isolated yourself

Ramandeep (bobby) chaggar (39:06)

Yep, yep, yep.

Bill Gasiamis (39:07)

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

Ramandeep (bobby) chaggar (39:14)

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

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

Bill Gasiamis (39:36)

Yeah.

Ramandeep (bobby) chaggar (39:36)

So

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

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

Ha ha.

made me calculate and rethink.

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

Bill Gasiamis (40:38)

Well then.

Ramandeep (bobby) chaggar (40:39)

yep, yep.

Bill Gasiamis (40:40)

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

Ramandeep (bobby) chaggar (40:42)

Yep, yep, yep.

Bill Gasiamis (40:44)

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

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

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

Ramandeep (bobby) chaggar (41:43)

Okay.

The Importance of Caregiver Self-Care

Bill Gasiamis (41:44)

statement.

Ramandeep (bobby) chaggar (41:44)

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

Sorry.

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

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

Bill Gasiamis (42:46)

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

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

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

Adjusting to a New Normal

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

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

Ramandeep (bobby) chaggar (44:20)

I obviously didn’t like it initially.

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

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

What do you do?

Bill Gasiamis (45:11)

Dude, it

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

Ramandeep (bobby) chaggar (45:16)

Yep, yep,

yep.

Bill Gasiamis (45:18)

In a

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

Ramandeep (bobby) chaggar (45:46)

Are you going running?

Bill Gasiamis (45:46)

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

Ramandeep (bobby) chaggar (45:52)

Yeah.

Bill Gasiamis (45:53)

I’m not running. I can’t run.

Ramandeep (bobby) chaggar (45:55)

You can run either, huh? Yep, yep.

Bill Gasiamis (45:56)

Not anymore. No. My

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

Ramandeep (bobby) chaggar (46:15)

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

Bill Gasiamis (46:17)

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

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

Ramandeep (bobby) chaggar (46:37)

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

Bill Gasiamis (46:38)

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

it makes it more fatiguing, more exhausting.

Ramandeep (bobby) chaggar (46:44)

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

Bill Gasiamis (46:48)

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

Ramandeep (bobby) chaggar (46:51)

Yep, yep.

Bill Gasiamis (46:52)

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

Ramandeep (bobby) chaggar (46:56)

Hold on.

Bill Gasiamis (46:57)

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

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

the travel escalators. Yeah.

Ramandeep (bobby) chaggar (47:43)

Yep, the escalators. Yep, yep, yep.

Bill Gasiamis (47:46)

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

Ramandeep (bobby) chaggar (47:50)

my god, same, same.

Bill Gasiamis (47:51)

Yeah. It’s my rehab.

Ramandeep (bobby) chaggar (47:53)

Yeah,

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

Bill Gasiamis (48:02)

Yeah.

Yep. And

Ramandeep (bobby) chaggar (48:03)

Yeah.

Bill Gasiamis (48:03)

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

Ramandeep (bobby) chaggar (48:18)

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

Bill Gasiamis (48:20)

Yeah. Yeah. Yeah.

Ramandeep (bobby) chaggar (48:24)

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

Bill Gasiamis (48:28)

Yeah.

Ramandeep (bobby) chaggar (48:28)

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

You the flora and fauna rather than the just the

Bill Gasiamis (48:46)

Yeah.

Ramandeep (bobby) chaggar (48:47)

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

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

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

Bill Gasiamis (49:45)

Yep. Yep.

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

Ramandeep (bobby) chaggar (49:51)

Yeah, yeah.

Bill Gasiamis (49:51)

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

Ramandeep (bobby) chaggar (50:00)

Yep, yep.

Bill Gasiamis (50:01)

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

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

Ramandeep (bobby) chaggar (50:20)

Yeah, yeah.

Bill Gasiamis (50:21)

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

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

Ramandeep (bobby) chaggar (50:53)

I agree. Yeah.

Bill Gasiamis (50:54)

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

The Journey of Riding Again

Ramandeep (bobby) chaggar (51:09)

not not here, but I have it in Melbourne.

Bill Gasiamis (51:11)

That’s all right.

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

Ramandeep (bobby) chaggar (51:21)

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

Bill Gasiamis (51:43)

Yeah.

Ramandeep (bobby) chaggar (51:44)

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

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

Bill Gasiamis (51:57)

Yeah. I thought I walked.

Ramandeep (bobby) chaggar (52:00)

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

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

Bill Gasiamis (52:18)

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

Ramandeep (bobby) chaggar (52:37)

Plunge.

Bill Gasiamis (52:38)

the clutch, yeah, would be challenging to find.

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

Ramandeep (bobby) chaggar (52:52)

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

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

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

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

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

Bill Gasiamis (54:31)

I say they.

Ramandeep (bobby) chaggar (54:32)

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

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

Bill Gasiamis (55:02)

It is a truck. Yeah. Cool.

Ramandeep (bobby) chaggar (55:04)

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

Bill Gasiamis (55:06)

Cool.

Ramandeep (bobby) chaggar (55:07)

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

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

go onto the highway.

Bill Gasiamis (55:41)

yeah, yeah.

Ramandeep (bobby) chaggar (55:41)

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

Bill Gasiamis (55:44)

Yep, bit of fun.

Ramandeep (bobby) chaggar (55:45)

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

Bill Gasiamis (55:48)

Yep. Yep.

Ramandeep (bobby) chaggar (55:50)

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

Bill Gasiamis (55:53)

Love it. Love it.

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

Ramandeep (bobby) chaggar (55:58)

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

Bill Gasiamis (56:02)

Okay.

Ramandeep (bobby) chaggar (56:03)

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

Bill Gasiamis (56:14)

Yep.

Ramandeep (bobby) chaggar (56:14)

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

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

Bill Gasiamis (56:33)

Okay.

Ramandeep (bobby) chaggar (56:33)

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

This is one shot. So

Bill Gasiamis (56:53)

Yeah.

Ramandeep (bobby) chaggar (56:53)

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

Bill Gasiamis (56:59)

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

Ramandeep (bobby) chaggar (57:06)

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

Bobby’s Journey of Unlearning and Grief.

Bill Gasiamis (57:09)

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

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

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

Podcast.

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

Teenage Stroke: When Recovery Feels Like Losing Yourself

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

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

Who Was Benjamin Before the Stroke?

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

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

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

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

Why Teenage Stroke Is Different

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

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

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

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

When the Brain Heals Faster Than the Self Can

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

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

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

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

The Road Back And What It Actually Looks Like

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

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

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

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

Listen to EP422

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

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

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

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

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

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

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

Highlights:

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

Transcript:

Introduction – Teenage Stroke

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

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

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

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

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

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

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

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

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

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

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

Benjamin Miller (02:12)
It was 2017,

the fall of 2017. So

Bill Gasiamis (02:16)
Okay.

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

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

Benjamin Miller (02:34)
Yeah.

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

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

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

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

Bill Gasiamis (03:51)
Mm-hmm.

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

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

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

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

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

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

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

Bill Gasiamis (06:19)
Yeah.

Benjamin Miller (06:20)
just…

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

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

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

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

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

The Day of the Stroke

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

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

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

Bill Gasiamis (09:16)
What

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

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

Bill Gasiamis (09:54)
Mm.

And then at some point you wake up in hospital,

Benjamin Miller (10:00)
Yeah, I

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

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

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

Bill Gasiamis (10:36)
Mm-hmm.

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

Bill Gasiamis (10:49)
Mm-hmm.

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

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

The Loss of Identity

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

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

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

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

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

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

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

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

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

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

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

Bill Gasiamis (14:21)
Mm.

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

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

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

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

Bill Gasiamis (15:38)
Mm-hmm.

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

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

Bill Gasiamis (15:59)
Yeah.

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

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

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

Bill Gasiamis (16:12)
Hmm.

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

And kind of stopping from coming forward.

Coping Mechanisms: Alcohol and Escapism

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

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

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

Bill Gasiamis (17:51)
Mm.

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

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

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

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

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

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

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

Benjamin Miller (19:50)
you

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

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

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

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

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

Benjamin Miller (20:27)
Mm-hmm.

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

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

Bill Gasiamis (20:49)
Mm-hmm.

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

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

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

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

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

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

COVID-19: A Blessing in Disguise

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

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

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

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

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

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

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

Bill Gasiamis (24:02)
Okay.

Benjamin Miller (24:02)
pounds.

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

So

Benjamin Miller (24:15)
So.

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

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

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

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

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

Bill Gasiamis (26:08)
Mm-hmm.

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

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

Bill Gasiamis (26:33)
Yeah.

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

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

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

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

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

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

to

The Journey of Healing Begins

Bill Gasiamis (28:57)
Mm-hmm.

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

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

Benjamin Miller (29:26)
Mm-hmm.

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

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

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

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

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

Bill Gasiamis (31:19)
Never linear.

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

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

Benjamin Miller (31:48)
Yeah.

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

Facing Uncomfortable Emotions

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

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

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

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

Benjamin Miller (33:47)
Thank you.

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

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

Benjamin Miller (34:01)
Mm-hmm.

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

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

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

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

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

Benjamin Miller (35:30)
Thank

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

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

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

And then you get stuck behind something like a log that

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

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

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

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

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

Spiritual Awakening Through Adversity

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

Benjamin Miller (39:10)
Mm-mm.

Bill Gasiamis (39:11)
And

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

Benjamin Miller (39:27)
Thank

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

growth journey.

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

Bill Gasiamis (39:50)
No, tell

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

The Power of Breath and Movement

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

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

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

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

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

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

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

Bill Gasiamis (43:24)
I

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

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

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

Benjamin Miller (44:39)
Thank you.

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

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

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

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

Benjamin Miller (45:28)
Mm.

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

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

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

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

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

Bill Gasiamis (47:35)
Yeah.

Building Community in Recovery

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

Yeah, it’s so hard.

Bill Gasiamis (47:46)
I love

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

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

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

Benjamin Miller (48:50)
Mm-hmm.

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

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

Benjamin Miller (49:19)
Yeah.

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

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

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

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

Yeah, life is…

Bill Gasiamis (50:51)
I

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

Benjamin Miller (51:09)
I don’t,

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

Bill Gasiamis (51:17)
Yeah.

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

Bill Gasiamis (51:22)
Okay.

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

Bill Gasiamis (51:27)
Okay.

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

Bill Gasiamis (51:31)
I

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

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

Benjamin Miller (52:19)
Yeah.

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

Bill Gasiamis (52:37)
Yeah.

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

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

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

And yeah, I I don’t know what I’d

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

Benjamin Miller (53:47)
do, but.

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

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

Bill Gasiamis (54:03)
Uhhuh. Okay.

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

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

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

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

Bill Gasiamis (55:16)
What’s the

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

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

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

Finding Belonging and Understanding

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

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

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

Like all

emotional and

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

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

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

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

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

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

Creating a Path for Self-Healing

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

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

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

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

Benjamin Miller (1:01:00)
you

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

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

Benjamin Miller (1:01:20)
Enough.

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

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

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

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

Benjamin Miller (1:02:57)
Thank

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

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

Benjamin Miller (1:03:10)
Yeah.

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

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

This is an open ear.

Bill Gasiamis (1:04:13)
Yeah.

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

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

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

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

Counterintuitive, but it is better sometimes to say less.

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

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

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

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

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

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

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