Not only did Jason DePetris experience a stroke because of a brain aneurysm, no less than 9 months after the first incident he also experienced an ischemic stroke due to a previously undiagnosed genetic condition making him more prone to clotting.
Highlights:
02:35 Introduction
04:28 Ischemic Stroke
11:52 Embrace Life
14:55 Be Here Now
22:44 The Caregivers
29:13 Writing The Book
36:15 Taking Time To Recover
51:52 Reinventing Yourself
1:03:49 Chapters In The Book
1:14:44 The Be Here Now Collective
Transcription:
Jason De Petris 0:00
The book originally started out as a journal, it originally started out as me just journaling my own thoughts and I realized I have a lot to say. And I kind of decided to turn it into the book because early on in the recovery, it was really hard to find anything positive, especially about brain aneurysms.
Jason De Petris 0:23
Everything that I could find a read was really scary and negative, I couldn’t find anything positive really. And so the book was sort of my effort as well I wish there was something like this available for me when I was going through it.
Intro 0:41
This is the recovery after stroke podcast. With Bill Gasiamis, helping you navigate recovery after stroke.
Bill Gasiamis 0:54
Hello, and welcome to another episode of the Recovery After Stroke Podcast. Thanks to all the listeners who went along and have already left the show a five-star review.
Bill Gasiamis 1:03
It’s really heartwarming to see and read the many positive comments about what the show means to you. And it makes spending a lot of time putting each episode together so very worthwhile.
Bill Gasiamis 1:15
Now, I want to share a couple of the reviews left recently by a couple of listeners. Scam Destroyer left a review that says such a huge help. This is so far the most helpful podcast regarding stroke recovery and better healthy living.
Bill Gasiamis 1:32
So much appreciation for this. Thank you. Thank you. Well, thank you Scam Destroyer, I really appreciate the feedback. And I’m glad that you’re getting a lot out of the episodes.
Bill Gasiamis 1:42
Shannon Lavery also left a review and said such a great resource. Thank you for having this podcast. And for all those on the show, who are courageously sharing their stories and making a difference through education and connecting.
Bill Gasiamis 1:56
And that’s exactly why I did this podcast, I set it up because I wanted to connect with other people learn from them, and hopefully impart some of my knowledge on them as well.
Bill Gasiamis 2:06
So, yeah, it’s a really amazing thing to read all the reviews, they’re making a huge difference. And they’re making the show more visible to people who are looking for this kind of content.
Bill Gasiamis 2:18
Now also, thank you to the person who left me a one-star review without comment. That’s really curious as to why this particular podcast might deserve a one-star review. I never expected it, but everybody’s different. So fair enough.
Introduction
Bill Gasiamis 2:34
And the majority of the reviews are fantastic. So it really makes up for it. And it’s all good. Now, this is episode 195. And my guest today is a two-time stroke survivor, Jason De Petris.
Bill Gasiamis 2:48
Not only did Jason experience a stroke because of a brain aneurysm about nine months after the first incident, he experienced an ischemic stroke caused by a previously undiagnosed genetic condition that makes him more susceptible to flooding of the blood.
Bill Gasiamis 3:04
Now recently, Jason launched his book, Be Here Now, and has joined me on the podcast to chat about his journey so far, and how his book came to be. Jason De Petris. Welcome back to the podcast.
Jason De Petris 3:18
Thank you. Good to be here.
Bill Gasiamis 3:20
You know, you were on episode 110 previously. And that’s more than 80 episodes ago.
Jason De Petris 3:31
Wow.
Bill Gasiamis 3:33
And it’s about a year and a half ago, it doesn’t feel that long since we last spoke, and I’ve been following your progress on Instagram. And I’m really excited to be able to share a follow-up interview with a stroke survivor.
Bill Gasiamis 3:52
And really dive into the before which was, you know, a year and a half ago when we first spoke and now give people a good insight into what happens or what’s possible or what occurs in that time after stroke. And how long things take the happen or you know how far you get.
Bill Gasiamis 4:15
So, can you give the people listening the ones that haven’t listened to Episode 110 yet, give us a little bit of an insight into what it was that brought you and me together? What happened to you?
Jason DePetris Had An Ischemic Stroke
Jason De Petris 4:28
Yeah, It’s interesting. You say it was only a year and a half ago feels like a lifetime has passed during that year and a half. So yeah, just a brief timeline. In October of 2019. I experienced an ischemic stroke.
Jason De Petris 4:44
It was the day before I was scheduled to run the Chicago Marathon. I was in Chicago. And luckily the stroke occurred before the race did not during the race. While having breakfast in a restaurant, I had a stroke, was rushed to the hospital when they did a CT scan to confirm their suspicion that I was having a stroke they discovered a large brain aneurysm behind my right eye.
Jason De Petris 5:09
And basically I was told this aneurysm needs to be repaired yesterday. And so I was in the hospital for a week or so once it was safe for me to travel home, I came back to California.
Jason De Petris 5:26
After lots of testing and conversations, I had a cerebral bypass in California, which entails taking an artery from my arm, grafting one end of it onto my carotid artery, a full craniotomy, they opened up my skull grafted the other end in my brain.
Jason De Petris 5:46
That surgery was unsuccessful for a variety of reasons. I was on the operating table, more than double the amount of time I was supposed to be I had a seizure during the operation, almost didn’t survive the operation.
Jason De Petris 6:01
And when I finally woke up, I was told oh, yeah, and that operation didn’t work. So 32 days after that, I went to a different hospital in California, and I had a stent and coiling of the aneurysm.
Jason De Petris 6:18
And recovery was progressing nicely, I think somewhere in that timeline was when I connected with you over Instagram, and you allowed me to be on the podcast, it was kind of mid recovery, if I remember correctly.
Jason De Petris 6:34
And then about nine months after the first stroke, I experienced a second stroke. And after a lot of testing, they did just about every kind of test that you can imagine, to figure out why I had this second stroke, because as far as everybody knew, including the doctors, my healing was progressing normally.
Jason De Petris 6:57
All of that testing led them to discover that I have a genetic condition related to my bone marrow, that makes me extra prone to clotting. And so essentially what happened we didn’t know that I had that condition there was no reason to think that I had that or to test for that if the second stroke hadn’t happened.
Jason De Petris 7:16
So essentially, what happened was the stent that had been placed in the aneurysm, clotted and blocked. And through are very strange twist of fate, the bypass that originally had not been successful originally hadn’t worked. When I had the second stroke, it started working.
Jason De Petris 7:37
Essentially, as I understand it, the stent clotted up was blocked, the blood had nowhere else to go. And so it forced its way through the bypass, which up until then had been useless. So ironically, that bypass that we thought was not successful, probably saved my life, that’s probably why I survived the second stroke.
Bill Gasiamis 7:57
So I’m not laughing. You know, that’s that nervous, kind of weird, strange thing that happens when people hear something like that. And then they realize the complete ridiculousness of what you just said. And then it’s also amazing that you just said that, and that you’re here this much time later.
Bill Gasiamis 8:21
And what you’re going to share today is going to be amazing. It’s going to be the amazing kind of what’s possible. After all of this drama that occurs, you know, these are the notes that I had, on your original podcast was I had the notes where you spoke about, you kind of avoided or didn’t recognize the signs of stroke.
Bill Gasiamis 8:44
You were saved by a stroke, you were definitely worried about deficits and concerned about what you might have to recover from or deal with. You were dealing with the uncertainty of exactly that second stroke or another stroke and what life’s going to be like, you know, at some point, you started to take responsibility for your recovery.
Bill Gasiamis 9:06
And you started dealing with your emotions, which is a very common thing that comes up, you changed your diet. And then we spoke about Be Here Now, which is your whole kind of philosophy now. Your Instagram, it’s your book.
Bill Gasiamis 9:28
It’s everything you know, it sounds like it’s the topic or it’s the way of being that you’re building your life around, you know?
Jason De Petris 9:40
Absolutely.
Bill Gasiamis 9:41
So I think most people who listen to this podcast caregivers, or stroke survivors, and the ones who watch on YouTube will relate to all those things that you said they’ll relate to all those issues, concerns, and everything that you said.
Bill Gasiamis 9:57
And what they often don’t get is this whole if specially if they’re very early on, and they find the podcast early on in their stroke experience or recovery, they need somebody to ease their mind. And that’s what the whole purpose of the podcast is. Hopefully it does that.
Bill Gasiamis 10:14
And then some, you know, it eases the mind. How did you start to notice that even though you were worried about deficits, and even though you were dealing with uncertainty. How did they take like a step back from being at the front of your mind? Because I’m feeling like you’re not at that place now?
Jason De Petris 10:43
Yeah, that’s an interesting question. It’s interesting, you say that you’re feeling like I’m not in that place. I mean, I definitely have my moments. Ironically, and I still kind of struggle to figure out where this has gone mentally.
Jason De Petris 11:01
Ironically, the second stroke, I mean, when it happened, when the second stroke occurred, I mean, it was my worst fears. It was basically confirmation of everything I had been afraid of.
Jason De Petris 11:12
And I was shocked, and along with a lot of other emotions. And, you know, the days and weeks after the second stroke, that was some of the darkest moments I’ve ever had. But when I climbed out of that, which happened thankfully, relatively quickly.
Jason De Petris 11:31
It almost gave me this gift, so to speak of you know, I wish it hadn’t happened. But when the second stroke happened, I sort of realized, I’m like, Okay, well, I’m not going to live my life in fear. I’m not going to spend all of my energy being afraid of what might or might not happen.
Embrace Life
Jason De Petris 11:52
Because that was kind of proof to me that you can do everything, right. You can eat healthy, you can be fit, you can exercise, you can take all your medications, you can follow all the doctor’s orders, and it can still happen.
Jason De Petris 12:08
And if that’s the case, if you can do everything right and tick all the boxes, and you can still have another stroke, well, then there’s no point in me worrying about it all the time. Like I’m gonna live my life. And so that was a weird sort of positive thing that came out of it. I don’t know if that’s going to make sense to people.
Bill Gasiamis 12:29
It makes sense to me, it’s the whole okay, I’ll be blunt, we’re all going to die, no matter what happens, we’re all going to die, that’s where we’re headed. Instead of being afraid of death, which is stopping you from living your life, it’s not embrace death, but it’s like accept that that’s where we’re heading and just embrace life.
Bill Gasiamis 12:53
Embrace the opportunity to live fully, as much as you can. And then you’ll have no regrets if the inevitable comes sooner rather than later or whatever that is, you know, we don’t know.
Bill Gasiamis 13:11
And just because you’ve had one and two strokes doesn’t mean the third one has to be the worst one or the one that gives you death it just there’s another one that you get to recover from, it may not mean anything, so let’s not necessarily apply meaning to what anything may mean.
Bill Gasiamis 13:29
I had the first stroke than I had a second one than I had a third one three times bleeds in the brain from an AVM and not once did I fear the fourth one or the third one or the second one I never feared them.
Bill Gasiamis 13:43
I kind of accepted early on that I’m going to make the most of whatever happens after that. I’m just going to make the most of it. I don’t know what the future holds.
Bill Gasiamis 13:54
But I’m not going to predetermine in my head and make myself the block to me living a proper life. I had done that before stroke, before stroke I was the guy that had all the reasons why life wasn’t possible to live the way that I wanted it to. I’m not doing that now.
Jason De Petris 14:15
I absolutely get what you’re saying and again I wish the second stroke hadn’t happened but I almost feel like it gave me that gift because I had been sort of saying Be Here Now and I’ve been preaching be here now.
Jason De Petris 14:31
Now I get it now it’s like all the more reason to live in the moment and another piece which maybe I’m skipping ahead here but the second stroke happened three days after I finished writing the rough draft of my book, I had finished the book. I finished the first draft three days later I had the second stroke.
Be Here Now
Bill Gasiamis 14:55
Wow. So tell me what is Be Here Now? The concept what does it embody? Tell me.
Jason De Petris 15:04
It’s all about for me, it’s all about living in the present moment. That’s being here, present mentally, physically, spiritually, however you want to look at it, being present in the present moment, not worrying about what happened in the past, not, you know, regretting what I have or having done or what has or hasn’t happened.
Jason De Petris 15:27
And not ruminating on the future, what may or may not happen, it’s all about living. In the moment right here when the first incident happened, when I was in Chicago to run marathon, I was there with my best friend that I had grown up with, we no longer live in the same part of the United States.
Jason De Petris 15:46
But we grew up together since birth. And we spent a lot of time talking about my anxiety after the first stroke, she has a phrase that she uses called Future tripping.
Jason De Petris 15:58
Meaning, you know, she’s your future tripping again, like I would go off and my mind would spin on these Oh, well, what if this? What if that what if this, and she kept saying, future tripping, which really stuck in my head, and I was like, I need to stop doing that I need to be here, I need to be right here. For this moment. That’s where that comes from.
Bill Gasiamis 16:16
I love that, because anxiety is exactly that it’s worrying about something that hasn’t happened yet. Yeah, that you’re expecting to happen. And if you get good at worrying about things that haven’t happened yet, you can come up with frickin endless number of things to worry about that haven’t happened yet.
Bill Gasiamis 16:33
And what we know is that 95 or more percent of the things that we worry about, don’t actually ever happen. And what we’re doing is putting energy into trying to avoid something that we don’t need to avoid, we actually don’t need to avoid it.
Jason De Petris 16:51
Well, and really when you do that, and I find that that concept translates to so many areas of my life. I mean, obviously, my recovery, but everything else, too, into my business, into my marathon running, which I’m fortunate to have recovered enough that I can do that, again.
Jason De Petris 17:07
It translates to all of that if I’m worrying in my business, I have a small business, if I’m worrying about oh, my gosh, well, what if this? What if that what if this, my business appointments that I have right now are not going to go well, because my mind’s not in it.
Jason De Petris 17:26
If I’m running a race, if I’m running a marathon or half marathon, and I’m like, Oh, I still have nine more miles to run. I’m not focusing on what I’m doing. And I’m less likely to do a good job you know what I mean, so it just translates everything.
Bill Gasiamis 17:39
Imagine people that are listening and watching imagine, Jason and I are having a conversation, and all of a sudden, I pick up my phone, and I start checking my messages all my notifications, right? And what’s happening is, Jason’s going on his merry way and talking about his book and his experience and all that kind of stuff.
Bill Gasiamis 18:05
And I’m not there, you don’t want to be that guy, you don’t want to be the guy that picks up the phone and starts checking notifications and starts doing things like that, while the other person is engaged, because your mind is worrying about the future, or expecting some notification to come or whatever.
Bill Gasiamis 18:25
It’s like you’re the worst person to be around as well. And you just haven’t. And you might not have realized, like how much you impact that other person that’s with you in the room, at the cafe, at the kitchen table, you know, wherever they are, you’re not realizing how much you’re impacting them in a negative way by not being able to just ease your mind about stuff that you can’t control.
Bill Gasiamis 18:52
And just being in the moment and enjoying every single moment of that interaction with that person. That’s kind of my way to bring attention or give people an idea of what that looks like. That’s what it looks like. Like, as if I did that to Jason right now.
Jason De Petris 19:11
It’s like you’re doing that to your own life. I mean, that’s a really good analogy. Is that because everybody’s been across the table from somebody who was checking their phone, but it’s like, you’re doing that same thing that that person with the phone is doing to you. You’re doing that to your life.
Bill Gasiamis 19:25
To yourself. So then you’ve come out of hospital, and you’ve written a rough draft. And what were you thinking at the time at that moment, what were you thinking about like all the steps that you had taken and all the things that you had achieved to that point.
Bill Gasiamis 19:55
And now you’re dealing with another stroke, it did turn out to be a blessing in disguise. But what were you thinking right at that moment about the book and releasing it and all that stuff?
Jason De Petris 20:06
Well, okay, so I’m gonna go a little bit before the book. And I’ll tell you just in the immediate moment when the second stroke happened. I knew exactly what was happening. So the first stroke, I didn’t know what was happening, I didn’t realize I was having a stroke.
Jason De Petris 20:21
When the second stroke happened, I knew exactly what was happening because it felt, looked, sounded, it was identical to the first one. So I knew exactly what was happening. And it was absolutely terrifying because I thought, okay, I dodged the bullet the first time. What is this one going to do to me?
Jason De Petris 20:42
And it was absolutely terrifying. And I was in intensive care for I forget how many days it was right in the middle of the pandemic, so nobody can visit me. I mean, I basically waved goodbye to my spouse from the curb as the ambulance drove away.
Jason De Petris 21:04
So that was really rough. The first couple of weeks after that stroke were really rough, I was in a very, very dark place. Because I was thinking, is this what my life is now? And you know, am I going to recover from this one this time?
Jason De Petris 21:23
I’ve been lucky with both strokes. My deficits are relatively minor, but they were made worse by the second stroke. And so I thought, okay, am I going to recover from this?
Jason De Petris 21:35
And then, getting back to the book, when it became clear that I was recovering, and I was going to kind of bounce back. And I thought, Well, what do I do with the book, I just finished the book, I ended the book on a very positive note, you know, I was very happy with the way it ended.
Jason De Petris 21:53
And I thought, Well, what do I do now? Do I include anything? Do I add? Like, do I add something to the end? Do I tell people that I had the second stroke? Do I you know, does that negate all the positivity that I was trying to build up to in the book.
Jason De Petris 22:07
And I ultimately decided I have to include it, I have to say something because of the book is all about recovery. Recovery is ugly, recovery doesn’t happen the way you want it to it’s not linear, it’s not clean.
Jason De Petris 22:22
Sometimes it’s two steps forward, three steps back. So I thought, you know, if I’m gonna publish this book, I gotta be honest, I have to say what actually happened. So I did decide ultimately, to talk about second stroke.
Bill Gasiamis 22:35
And you added that to the end of the book, so to speak, was it?
Jason De Petris 22:40
Yeah.
The Caregivers
Bill Gasiamis 22:44
It’s already the second iteration of the book, and the book hasn’t even come out yet. Usually, you hear about somebody releases their book, and then they update it, you know, five, six, ten years down the road, and they tell you they have a recently updated version, and it goes out. You did that all in one go. How does your partner deal with the second stroke? What is going on there?
Jason De Petris 23:19
Gosh, I mean, yeah, that’s a hard one to answer. So I can’t even imagine what was going on in my family’s mind when this was happening. Because like I said, it was in July of 2020. It was at the height, at least in Los Angeles, it was at the height of the pandemic.
Jason De Petris 23:41
So I was allowed no visitors to the hospital. So I was so focused on my own at that time, but I’m sure it was rough. And up to that point, he had been such a constant caregiver. And I’m sure it was like, Oh, here we go again.
Jason De Petris 24:04
And I was not in a good place mentally when I came out of the hospital I was not in a good place mentally. The whole poor me thing didn’t last very long. Because that’s just not really my personality. That didn’t last very long. I came out of that pretty quickly.
Jason De Petris 24:22
The feeling sorry for myself, but I was in a very negative headspace. And it set off a whole nother spiral of things of anxiety, which took a while to gain control of so yeah, I’m sure I was not fun to be around for a while there.
Bill Gasiamis 24:42
And, you know, we’re gonna give you a bit of a break for that. We’re going to give you a little bit of a break and say, Look, you know, your heads been messed up because of this thing that happened and it’s second time and it’s like, yeah, fair enough and some self-compassion in that moment when people are doing it tough.
Bill Gasiamis 25:00
Because they’ve been through a really tough time is really important. You know, I was pretty terrible as well, in my behavior to my wife, and I was no saint beforehand, but it was like, a little bit next level, idiotic, you know.
Bill Gasiamis 25:16
And it was really important for me to just realize that I didn’t need to beat myself up about that, and I needed to then apologize about that part of not beating myself up about it was that I could make it right by apologizing.
Bill Gasiamis 25:29
And by trying to be the best I could be most of the time, but I’m human and most of us are, so we’re going to act up and misbehave and, and also have negative thoughts and also have positive ones and then be balanced and then be completely unbalanced and nuts.
Bill Gasiamis 25:50
And that’s all normal, you know, that’s part of our style, our spouses. Well, that’s how they normally are, but then they’re dealing it from the filter of this person I love nearly died or might have died or whatever.
Bill Gasiamis 26:06
And it’s completely, again, different level of experiencing us because they want to make sure that we’re okay, caring for us and the rest of it. And maybe they’re getting frustrated, and they don’t know how to help and how to be because they’re not caregivers.
Bill Gasiamis 26:24
They’re humans, who are moments before the strokes, were just normal, regular people, and now they’ve got to be caregivers, they’ve got to know everything about stroke, and how to deal with their own emotions as well as help you out of it. And it’s like, so much to ask of them.
Jason De Petris 26:42
It really is, it is a lot to ask. And I think and Jeremy and I’ve had many conversations about this, about how, you know, obviously, he knows more about the situation and more about how I feel about it than most people do.
Jason De Petris 26:58
But I don’t care how close you are to the person like you. I don’t care how much you think you understand you don’t, unless you’re the patient and you went through it, I don’t care how much you think you understand. You don’t completely understand.
Jason De Petris 27:15
And, that can be frustrating from the patient side as well. Especially because stroke, I mean, it is a brain injury, and it does affect your emotions. And it does affect certain things.
Jason De Petris 27:29
And it is from what I understand it is common after a stroke to have a short temper, and to get irritated quickly and you know, get anxious easily. And I definitely exhibited those symptoms, and I definitely would bite his head off when I shouldn’t have. So yeah, it’s a really tough position for a caregiver to be in.
Bill Gasiamis 27:51
Yeah, my heart goes out to all the caregivers in the family members and their loved ones it does. And it goes out to the stroke survivors as well, there’s no doubt about it. There’s no one’s winning out of those experiences at that time in that moment, at the most acute phase of the experience.
Bill Gasiamis 28:12
And then the very early parts of the recovery. No one is equipped enough to handle it all and to be perfectly fine. And that’s part of our growth and our learning, right.
Bill Gasiamis 28:26
You know, what’s really, really interesting to me, is the amount of stroke survivors that have gone from that experience. And then gone, you know, what, I am going to learn, grow from this. And then I’m going to tell everyone else about this as many people as I can. And I’m going to reach as much as I can.
Bill Gasiamis 28:52
And I was even shocked that I did it myself that I started a podcast and looking back on it. I don’t even know how I got to here and what I was thinking other than I think I need to share stories or learn from people or something and I need to create a community for me, and then became about other people.
Writing The Book – Be Here Now
Bill Gasiamis 29:13
And so it’s an amazing thing that I reflect on that I did and I never was that way before I never was that generous with giving my time and my knowledge, you know? How do you get to that point where you have a stroke? The first one and then you think I’m gonna write a book about this.
Intro 29:43
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be. You’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse.
Intro 30:00
Doctors will explain things that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com, where you can download a guide that will help you.
Intro 30:22
It’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery, head to the website now, recoveryafterstroke.com and download the guide. It’s free.
Jason De Petris 30:45
The book originally started out as a journal, for me, it originally started out as me just journaling my own thoughts, and I really have a lot to say. And I kind of decided to turn it into the book because early on in the recovery, it was really hard to find anything positive especially about brain aneurysm.
Jason De Petris 31:11
Everything that I could find a read was really scary and negative, I couldn’t find anything positive really. And so the book was sort of my effort as well, I wish there was something like this available for me when I was going through it.
Jason De Petris 31:26
And I don’t know if you Bill, have experienced this, but I know in the thick of it, I forget how crazy my story is sometimes until I’m introduced to somebody new and it comes up and that you know, I try not to make that the first thing I talk about.
Jason De Petris 31:43
But you know, you know comes up and I forget how extreme my story is until I’m telling somebody who hasn’t heard it before. And I see their face change. And they’re like, holy crap, you know, and, and they’re fascinated, they always want to know more, they have more questions, they want to know more.
Jason De Petris 32:02
I thought well, and I very, very often get the question, what is a brain aneurysm? I’ve heard that term, but what did they don’t know what it is. So it kind of came out of all of that it was you know, it was kind of me getting my thoughts out.
Jason De Petris 32:02
It was me, thank God, I wish there was something that could give some people a path through the recovery or something positive. And it was, hey, people want to know about this, especially if you have to be a caregiver or whatever. So it was kind of a combination of all those.
Bill Gasiamis 32:32
Yeah. I get the opportunity to share my story once a year with the third year occupational therapy students at the Australian Catholic University here in Melbourne, as part of one of the modules that they’re doing, which is in stroke recovery, so occupational therapy, as, as a tool support talk for stroke survivors.
Bill Gasiamis 33:01
And I tell it, and every time the professor who invited me to speak there, or doctor, I think she’s a doctor. Anyway, when we first started, she was just somebody that was there now, she’s moved through the ranks and become either a doctor or professor. I’ve known her for about seven or eight years.
Bill Gasiamis 33:23
And every time she says to me, oh, my gosh, I learned something new that I didn’t know, since the last time you told the story. And, and it what it is, is always it’s one of those shocking moments or amazing moments or fantastic moments.
Bill Gasiamis 33:38
And I didn’t realize there’s so many of them that are limited in the story. Yeah. And it’s what you said is they come out every once in a while. Right? It’s like, wow, gosh, that also happened. And then you realize on what a dramatic roller coaster ride it has been and how much you’ve overcome to get to the other side.
Bill Gasiamis 34:04
It’s what you’re talking about, right? It’s like you’ve overcome this, the dramatic dips. And I My experience was the high highs, very high highs. And I was never really at the middle ground for a long time. Afterwards, it took a while to get to the smooth end of the roller coaster ride, which was as it takes off, whereas it ends and there’s just a very small amount of time of that. Is that what you felt as well as that you’ll take?
Jason De Petris 34:38
Yeah, that’s very similar to what I felt and I feel like I’m just now it’s interesting that we’re reconnecting now because I feel like I’m just now kind of settling into that middle like I’m, I feel the most like myself, so to speak that I have felt since this journey began.
Jason De Petris 34:56
You know, for a long time I felt like I mean, the easiest way I could think of just ascribe was I didn’t recognize my life. And I feel like I’m just now within the last couple of months, I feel like myself again. And with some positive improvements, I hope, but I have found joy again, because there was a long this was not a fun process, as you know.
Jason De Petris 35:21
And there was a lot of time, there was a lot of the journey where I was just unhappy and angry. The and it wasn’t even really, like, why did this happen to me? That stuff happens to people all the time. It wasn’t even really like why me it was it was more like, I gotta deal with this crap. Now, you know what I mean? And I feel like I’m out of that. Now. I feel like I’ve cleared that hill.
Bill Gasiamis 35:54
Yeah. So I had a lot of joyful moments at the very beginning, that they sort of kept coming, maybe because of my tendency to focus on the positive and see light, where there’s a lot of darkness. So that’s just me, that’s just who I’ve always been.
Taking Time To Recover
Bill Gasiamis 36:15
And my experience with stroke, one, two, and three, and then brain surgery that was over three and a half years. By the time I got out of recovery, and finished outpatient occupational therapy and rehabilitation, it was nearly four years. It was gonna, it was definitely three and a half years.
Bill Gasiamis 36:37
So it took a really long time for me to start to feel like myself again. After the rehabilitation ended, I kind of sort of started going back to my regular life. But it was a lot of interruptions with hospital visits, or I’m having a major headache, or I don’t know what it is, I’m afraid it might be a stroke, let’s not muck around and just go and get it checked out.
Bill Gasiamis 37:06
Although the surgery removed the blood vessel that was potentially going to bleed. Yeah, I still had all that stuff to do. And I was still in these weird Twilight Zone places in my head where I couldn’t really grasp the the reality of where I was like I was just in this weird sort of haze or fog and strange places.
Bill Gasiamis 37:33
And it took about eight years since the first stroke for me to start to feel like myself again, properly, fully, even with my deficits, even with my left side numbness and why wonky balance when I get too tired, and my inability to concentrate a lot after say 12 or one o’clock in the afternoon. I still, even with those things start to feel.
Bill Gasiamis 38:02
I’m still feeling like I’m the most, quote unquote, myself that I’ve ever been. Yeah. And I say that because what I want to demonstrate is for you, you got there after about, you know, two years to somebody there. I got there after eight years, you know, it takes different amount of time for different people.
Bill Gasiamis 38:22
The key part of the story is we get there, everyone kind of does get there in this new way. And they start to upgrade their identity, even though they’ve had a stroke. Stroke is not their only identity, they start to add all the layers back into their identity that they’ve been missing, or they’ve been put on hold or, you know, they put to the side for the moment where they were really unwell.
Jason De Petris 38:53
Yeah, no, that’s true. And I think you bring up a really good point there where the stroke is not your identity. It’s one thing that happened to you in your life, but it’s not your identity. And I relay back to in a previous career, I used to be a special education teacher.
Jason De Petris 39:10
And it’s always been a pet peeve of mine you commonly hear and it’s not. People don’t mean this in a negative way. But you hear people say, Oh, that Down’s kid or so and so has a downside. And that was always a pet peeve of mine. I was always like, Well, no, it’s a kid who has Down syndrome.
Jason De Petris 39:31
It’s not a Down’s kid. Because you’re reducing that person, you’re reducing their entire identity to that one element. And it’s the same kind of thing. It’s like, I’m not a stroke patient. I’m somebody who had a stroke once and starting times in the right and I’m starting to find my identity again. Outside of that one thing that happened or two things that happened.
Bill Gasiamis 39:53
Yeah. I really love that what you said because I’m a stroke survivor, not a stroke victim and a lot. And a lot of the people that we interact with on Instagram and through the podcast and knew who you’ll start interacting with through the book, often are referred to by other people as stroke victims, or stroke patients.
Bill Gasiamis 40:17
But the stroke survivor, I think, is something that we take and run with. That’s something that we identify with that we describe ourselves as. And it’s really empowering of the first person to tell me that was my counselor after episode number two.
Bill Gasiamis 40:41
And she leaned in and said, You know what you are now, I said, I don’t know what I am. She said, You’re a stroke survivor, you can start using that label. And I didn’t realize what she was saying what she was doing. I know now.
Bill Gasiamis 40:55
But that was a really empowering description of me. And I think it was a real big key to the way that I then went about relaying my story to people and actually turning into a positive and then getting them to do the whole, what you experienced the whole Wow, or amazing or that’s unbelievable.
Jason De Petris 41:21
Well, and words matter. I mean, words do matter, the way you choose to express it does make a difference in how you see yourself. I mean, obviously, it makes a difference in the way that other people see you too. But more importantly, I think it makes a difference in how we see ourselves the way you choose to express that story or not.
Bill Gasiamis 41:43
So going forward, what’s the how are you managing the condition that you discovered after the second bleed? How is the medical world and you managing that?
Jason De Petris 41:58
That’s been a little bit of a journey in itself. So I’ll tell you what I know about the condition. But I’ll start by saying I don’t know a lot about the condition. One of the things that Jeremy my spouse laughs about a little bit, is, I’m not interested in doing a lot of technical research on my conditions, it was bad enough to live through it, I want to get through it and move on.
Jason De Petris 42:25
So I kind of take the attitude for good or bad or whatever, I take the attitude, okay, doctors, tell me what I need to do, I’ll follow your orders. But I’m not going to sit here and read the textbook, I frankly, don’t care, like, tell me what I need to do to not die and I’ll do it.
Jason De Petris 42:43
So so I don’t know a ton about the condition. As I understand it. It is a genetic condition in my bone marrow that the way it was explained to me. I think it what happens is my bone marrow doesn’t know when to stop producing red blood cells that just continues producing, producing, producing, producing. So I clot over very easily.
And that condition is most frequently seen in patients who have either leukemia, or sickle cell anemia. So the treatment for that condition is a medication that is technically it’s a form of chemotherapy, it’s a pill, I don’t have any I don’t get infusions or injections or anything like that. It’s a pill. And it’s a mild chemotherapy.
But technically, it’s chemotherapy. I mean, it says on the pill bottle, do not handle these pills with your bare hands. So it’s a very, it’s a very harsh medication, and it does have side effects. It took about took over a year for the doctor to adjust to get the dosage right.
When they first put me on that medication, I was going every two weeks, I was going for blood tests every two weeks, every two weeks. And it was because it was throwing all my levels off. And it was created some unpleasant side effects. We now have it at a level that I’m stable. So but yeah, it’s I’ll have to be on that medication or some version of it for the rest of my life.
Bill Gasiamis 44:15
And it’s not something that’s able to be impacted by blood thinners or anything like that, because it’s not a type of condition.
Jason De Petris 44:26
Correct. So I do take aspirin, which I guess is technically a blood thinner, but I’m not on a blood thinner medication. I take aspirin and that I take the medication for that other condition.
Bill Gasiamis 44:36
Yeah, that sounds like the aspirin is kind of the sort of support mechanism to help the blood flow a little bit. therefore reduce the possibility again of potentially clots or anything like that. That’s
Jason De Petris 44:50
That’s my understanding. But like I said, I mean my understanding I mean, I go to a cancer doctor, I go to an oncologist for that condition. I don’t have cancer, which when they feel was told me we’re going to put you on this medication, I was a little alarmed because we looked it up. And I was like, that’s a cancer medication. I do not have cancer. But it’s because of the nature of my condition. That’s the medication that’s used for but I haven’t researched it much more than that. I go to the doctor, I love my oncologist. She’s, she’s great. She really explain things explain things in a way that I can understand. And I don’t ask beyond that. Because I’m like, Well, I just want to live my life.
Bill Gasiamis 45:27
That’s so good. There’s nothing wrong with that. I mean, I totally get it. I’m the opposite. I need to know all the gory details. Yeah. And it just that what that does is it gives me the same experience that you get, it allows me to live my life. Yeah. So weird ways, completely different ways of getting to the same outcome. Yeah. But then what I think about is, if I know, every single thing that there is to know, then I know what I need to do, then I have all the information that I need to do what I want to do. So I just need to go a bit deeper than you. But you seem like you have all the information that you need to do what you need to do next, which is perfect.
Jason De Petris 46:09
That’s interesting, because I can absolutely see from your side, I can absolutely see how that would accomplish the same thing for somebody. I think for me with my you know, I have a tendency towards anxiety anyway, even before obviously, it was made worse by the stroke, but I have a tendency in that direction anyway. So I think with my personality, if I spent too much time and energy researching, and I think what that’s going to do is give me a whole bunch of other reasons to be scared. Right? So So for me, I’m like, Just tell me what I need to do. And I’ll do it.
Bill Gasiamis 46:43
Like that. You’ve worked out how to hack your anxiety and don’t go, I love it. Yeah. Yeah, that’s such a great skill. I mean, to know what not to do. A. Okay, so first, like, now you know what to do to stay alive. And now you also know what not to do to trigger anxiety for no reason.
Jason De Petris 47:05
Right, exactly. I mean, if there’s anything that I’ve learned from this experience, it’s I’ve learned about my own personality.
Bill Gasiamis 47:14
Everyone else knew your personality, and they judged you because of it. And you just worked it out. How old are they?
Jason De Petris 47:21
44
Bill Gasiamis 47:24
I love it. Better late than never. Huh. Have you got a copy of the book with you? The deal? Show us throw it up in front of the camera. Okay. It’s Be Here Now by Jason de Petrus. Surviving stroke and brain aneurysm? Yes. Brilliant. It’s an awesome cover. I love the image of the head. And the brain and the tree all combined. Is that? How did you come up with that image? Is that an image that you just came across? or did somebody design that for you? And what does to you? So my,
Jason De Petris 48:07
one of my business clients actually is a graphic designer. And I’ve gotten to be friends with him over the years. And he’s done a lot of graphics for my business. So I immediately and he and he’s also an art visual artist outside of his graphic design business. Excuse me, I’ve always loved his art. And so I told him, I was doing the book. And I said, I would like to hire you to design the cover. And he was like, yeah, absolutely. So yeah, so he did that for me.
Bill Gasiamis 48:35
And did you have to give him a lot of guidance on how to come up with an image because that’s a pretty unique image.
Jason De Petris 48:48
No, I mean, he gave me I think like 12 or 13 potential options for the cover, and they were all very, very different. And that we narrowed it down to like two or three. And that was the one that I picked the other one. The other image that I liked it was an image you’re looking at the back of somebody and his head was sort of opening up and there was light coming out of it.
Jason De Petris 49:18
And I thought it was a really cool image but the reason I chose not to do that one was it was like a shirtless man and he was really buff. And I said well that’s a cool image but I look nothing like that. And I was like if I make that the cover of my own book, people are gonna be like, well you have a high opinion of yourself. So I was like, no, let’s let’s not do that. Let’s not try and pretend that the cover is me. Let’s just have like, you know, more of an artistic image.
Bill Gasiamis 49:48
So does it say anything to that did speak to you in a particular way is did you interpret that image as something that therefore made it the perfect image
Jason De Petris 50:01
Yes, I love the fact that the head is sort of blowing away in the wind. Because that to me is like, you know you do when you go through something like this, obviously, I’ve gained a lot from this. But initially, it feels like you’re losing a lot, it feels like you’re losing a piece of your life. And that’s what that image looks like to me.
Bill Gasiamis 50:26
Yeah, you’re losing a bit of your life, some of the losing some of the not-so-good stuff, the bad stuff, or you’re losing some of the good stuff as well in that whole thing. What are the some of the things? How has your life changed? Has it taken away some good things? Did it kind of give you like an insight into some of the stuff that you didn’t like? What did it do this whole stroke experience?
Jason De Petris 50:53
Yeah, I think I definitely gained more positive things from it than than anything else. Which is also why I like that picture, too, because it’s hard to see probably on the camera, but it’s also Yeah, it’s blowing away. But it’s also a tree, it’s growing, it’s continuing to grow. It definitely improved a lot of my personal relationships. It’s one really interesting, while I’ve improved my relationship with my spouse, I think we can withstand anything after going through what we’ve been through.
Jason De Petris 51:27
One really interesting one was it improved my relationship with my brother, which was not a bad relationship, but we became much closer, he became a really, really good support system for me, which kind of surprised I have a brother that’s 18 years younger than me. And so we’ve always had kind of like an uncle-nephew kind of relationship. But he, you know, he’s an adult now.
Reinventing Yourself
Jason De Petris 51:52
And, he was a really surprisingly good support system, for his age and for never having gone through that before. So that brought us closer, it definitely put a mirror up in front of me to learn about my own personality, and the things I like about my personality, and a lot of things I didn’t like about my personality, too. And you’re kind of getting, when you go through something like this, you’re kind of getting a chance to start over.
Jason De Petris 52:26
And you can be whoever you want to be. You know what I mean? Like, I don’t know if this is a productive way to think about it or not, but I sort of look at my life as like before the stroke and after the stroke. And, you know, I kind of got a chance you can make your life, whatever you want it to be. And you can do that at any point in your life, you don’t have to experience a stroke for that. But that definitely showed me I’m driving the bus here. I can do whatever I want with this time I’ve been given.
Bill Gasiamis 52:58
I completely relate to that. And I had to wait till I was 37 and have multiple brain bleeds. And not know my name, and not know who my wife was, and not be able to type an email and not be able to work not be able to drive. Have or not be able to walk not be able to move my left hand. All those things, I had to go through all of that to realize exactly what was definitely possible for us to realize beforehand, but somehow the profound trigger wasn’t there, I suppose.
Bill Gasiamis 53:35
I don’t know. I don’t know how else to explain it. And I definitely am a before-stroke guy and an after stroke guy, absolutely. 100% I mean, the before-stroke guy didn’t put this much time and effort into other people at all zero. I didn’t do that in my family. I didn’t do that outside of my family, the before-stroke kind of guy had you know, I felt like I was at the whim of other people’s demands on me requests and etc. And my business was being run by my clients rather than he was being run by me.
Bill Gasiamis 54:15
And the before me guy, before stroke guy, although we had a lot to say, never had the guts to say it. And if I did say I said it to the wrong audience and therefore it went down like a lead balloon. And therefore I felt discouraged about speaking up and speaking my mind and giving people an insight into the things about me that they didn’t see on the outside, you know.
Bill Gasiamis 54:52
And one of the scariest things for me to do was at the same time that I started this podcast I started another one because there were two very different audiences. And the other one kind of took off a bit quicker. And somebody contacted me and gave me really bad feedback, really bad negative feedback. And it put a hold on everything.
Bill Gasiamis 55:20
It made me recoil, and then go into this state of freeze and not put anything out there for a while, because I was afraid that people would tell me what I’m doing was no good, or it was my opinion, was not worth having out there, or it was going to be challenged. And I didn’t know how to deal with any of that stuff. I gotta say it took a good year before I really properly got over that and said, they stuff this, I’m going for it.
Bill Gasiamis 55:54
And I’m going to have these conversations regardless, now the other podcasts ended after about 20 episodes. And recently, I’ve taken down all proof that had ever existed. It’s been a number of years, and it’s just not me anymore. But then this podcast, when I accepted the possibility that I will be challenged, that I will be judged, and I’ll be all those things that you do.
Bill Gasiamis 56:26
When you put yourself out there. This podcast just took off. And it was because I enabled myself to be vulnerable. And to put myself out there so people can judge and heart and criticize and be harsh towards and whatever. And I thought well, you know, that I learned somewhere along the line that’s more says about more about them than it does about me.
Jason De Petris 56:54
Absolutely.
Bill Gasiamis 56:55
And for the first time, it also allowed me to experience different opinions and actually test my very narrow focus and my very narrow range of experiences that created this opinion that I had. And now my opinion has evolved. And my focus has evolved. And my, my knowledge has evolved. Everything has evolved. It’s grown, I’m a better person for it. When you were writing the book, did anything into your mind to stop you at the beginning, from this crazy idea that you had to write a book about stroke, your recovery.
Jason De Petris 57:40
Oh, yeah, for sure. I mean, yeah, I was definitely afraid my book is written in kind of a unique format. Which I’m not, I don’t want to go to off on a tangent. I want to answer your question. But, but yes, a lot of things stopped me because I realized pretty quickly that I had to write about more than just my stroke in my hospitalizations. Otherwise, the book would be completely unreadable.
Jason De Petris 58:08
Nobody wants to read 300 pages of this is what I went through and how much it sucked. I don’t want to read that. So I wove the, I realized pretty quickly, like, that’s not gonna work. So I wove a lot of flashbacks into the story. So the book kind of jumps back and forth between the present moment what I was going through when I was writing the book, and past moments in my life, and I sort of tied them together. So that each flashback kind of tied into one of the lessons I was learning in the present.
Jason De Petris 58:45
But where that comes into the answer, your question is, you know, they’re all real people in my life. And these flashbacks, it was people that I worked with, and people I grew up with, and friends and family members. And, you know, I thought, you know, I don’t necessarily know what they’re gonna think about me putting this in the book of it, you know? And do I want to share that much of my life and art, you know, are people going to get where I’m coming from?
Jason De Petris 59:08
And so yeah, absolutely, I wasn’t sure whether I was going to publish it or not. And I also, through that whole process, created a DBA for my business and open an office and I decided to name my business Be Here Now also. And I when I did that, I was like, Is that too much? Like, are people going to get that? Are they going to think that’s cheesy or whatever?
Jason De Petris 59:33
And I ultimately, you know, kind of came to the closer look, I don’t care either either people are going to get it or they’re not going to get it but like that’s where I’m at. That’s where my personality is. That’s where I’m coming from. And if you’re going to engage with me as a business person, or just as you know, as an acquaintance or whatever, you’re either gonna get it or you’re not gonna get it but I’m not going to change who I am to suit everybody else because no good book was ever written that way?
Bill Gasiamis 1:00:01
Absolutely 100% concur. It’s, that same feeling that I just spoke about. It’s that whole one where, as soon as I started putting myself out there and talking about these topics, I positioned myself as an expert in the field now, because I’m the podcast guy that talks about stroke. And I’m not an expert. But people see me as that. And they never would have if I didn’t have the guts to go down that route, and be me and talk about my story and my experiences, because they’re my truth.
Bill Gasiamis 1:00:39
And that didn’t have to be your truth. Your truth is your truth. And we can see where we’re different, but what I’d rather see is where we’re the same I would rather see where we’re the same. And I would rather be a beacon for encouraging you, hopefully, somebody’s listening to this podcast, right and going, if that idiot can do it, well, then so can I, you know, and what that’s doing is creating an abundance of stroke podcasts, so that our community has tons of places to go to, and not say the things that we say, which is there was not enough places for me to go to.
Bill Gasiamis 1:01:19
Because not everybody wants to listen to my version of the recovery after stroke podcast, because a lot of people don’t get me and they don’t want to, and that’s perfectly fine. And, therefore, we’re not competing with each other, which is something I’ve had to learn again, even more recently, because I made a massive error, about how I have responded to somebody who I thought was trying to manipulate me for their gain, we’re not all competing with each other, there’s a whole world of people, a whole planet of people, they’re in so many different parts of the world, there’s 7 billion humans on the planet, and one in four is going to have a stroke in their lifetime.
Bill Gasiamis 1:02:02
That’s more than enough people to support all our desires, to create content for them, or to support them, or to help them or to sell them a service or whatever it is, right? It’s just, that thing that you did, it’s like, that’s it, that’s me take it or leave it, and I accept whatever decision that you make, and I’m not going to judge you for it. I’m just going to live my truth.
Jason De Petris 1:02:31
And you are gonna get criticism, and I’m gonna get criticized, like, you know, you were you were talking about that you kind of froze in place after that first experience. You know, and it’s, it’s not like, Oh, if I do this, right, I won’t get criticism. It doesn’t matter how you do it, you’re gonna get criticism, people are gonna judge you. You know, and that’s, that’s just life.
Bill Gasiamis 1:02:53
And then you do it. Anyway, you do it, even despite or in spite, that whole fact that you will be criticized to do it anyway. Yeah. Yeah. So tell me what the titles of the chapters are. And then just give me an idea so that people listening can sort of have a good understanding of what the books about. Okay. So let’s see.
Jason De Petris 1:03:22
I’m wondering if, do you want me to read the kind of synopsis on the back that might help? Or do you want me to just go through the chapters.
Bill Gasiamis 1:03:33
No, if they want to know the synopsis, we’re going to send them to your website. So sorry, people that are listening, you’re not going to get it that easy. I want to know just briefly the name of the chapters and just to give people a good idea of what it’s about.
Chapters In The Book
Jason De Petris 1:03:49
Okay, so Chapter One is called How It Feels To Quit, Chapter Two is Blink of An Eye, Chapter Three is Looking Back Moving Forward. Chapter Four is Nobody’s Coming To Save You, chapter five When You Don’t Recognize Yourself, chapter six when Shit Gets Real, that’s a long one. Chapter Seven. It Takes A Village, chapter eight is Here We Go Again. Sorry, I didn’t have them put a table of contents in here in chapter nine Second Try. Chapter 10 Double Vision And Video Games. Chapter 11 Clouds Begin To Clear, chapter 12 is Haircuts Appointments And Coronavirus. Yeah. My, first haircut after the craniotomy that was an interesting experience.
Bill Gasiamis 1:05:16
Yes. Same.
Jason De Petris 1:05:22
Chapter 13 Birthdays Past And Present.
Jason De Petris 1:05:30
Chapter 14 Mile 20. That’s a marathon reference. Yeah. Chapter 15 meaningful gifts. Chapter 16 Relationships are hard. That’s all about the relationships that maybe did not come closer during the journey. 17. putting the pieces together. And chapter 18 is the last piece or the last chapter rather. And that is Another Chance For Success.
Bill Gasiamis 1:06:01
That sounds like an amazing transition, a book that shows the transition from beginning of this, you know, potentially short story to a really positive outcome and all the little bumps and all the highs and lows in between. You just said something, though, during that reading about the first haircut, so I wear my hair really short. So that’s a buzz cut, right? And I had a scar that was about four or five inches long on my head. And I was kind of gritting my teeth and holding on to deal life when they were buzzing. And I could feel it in a different way. What was it like for you?
Jason De Petris 1:06:45
Oh, God, I write about it in the book. And I give the give the guy who cut my hair a lot of credit here. So I was super, super nervous for a bunch of reasons. So number one, that was right in the middle of the pandemic. And for people who know me, I was a germaphobe. Before the pandemic. I was already a germaphobe. I already, you know, carried hand sanitizer with me before Coronavirus.
Jason De Petris 1:07:12
So I was scared because of that. Because I was like, Oh God, I don’t want somebody touching my face after they just touched a bunch of other people. My stitches from the craniotomy had not fully healed yet. So I was and I obviously I wear my hair short, too. So I was really worried about the stitches I was worried about, like the Clippers snagging on it or something, I was still in quite a bit of pain at the time. And the guy that cuts my hair. He’s a young guy like a surfer guy.
Jason De Petris 1:07:43
Superduper nice, but he’s let you know. He’s quite a bit younger. And you know, he’s like, Hey, dude, you know, one of those kind of people. And I was like, Oh, God, is he going to understand? Like, how delicate I am? You know? So I wrote about in the book because the night before the haircut, I almost canceled because like, I don’t really no if I want, so I texted him and I was like, just so you know, I’m really worried about germs. Just so you know, I’m really worried like my head still sore. Just so you know, like, I was like, I said to Jeremy like he’s gonna think I’m crazy.
Jason De Petris 1:08:14
So we got there, we got to the shop. And I had I don’t know if you had this whole side of my head was still very numb. And I you know, occasionally I still get nerve pain down the scar or whatever. He could not have been better. He was like super, super careful and delicate. And he was very careful. But yeah, it was it was I had nothing to be afraid of. But it was it was pretty funny because I was like, Oh God, I’m like I regret having this haircut.
Bill Gasiamis 1:08:43
I remember I remember the same experience or similar experience. So I never used to wear my hair like this. And then it started the day before I had the brain surgery. And of course, I knew they were going to cut my hair so I thought I’ll just do it for them. But what I didn’t know was that I should have cut it a lot shorter. Because when they trim the area that they’re going to do the incision on they go right down to the skin while my hair was about this long when I went into surgery, because the first time and then I had this landing strip here, which they had done.
Bill Gasiamis 1:09:23
So I had to get my hair cut pretty quickly because as soon as the bandage came off about seven days later, I had two layers of hair. This one which had grown and the landing strip, which had just grown a little bit and it looked ridiculous, right and I already felt a little bit bizarre and strange and I thought let me just even out the hair. So I was I was getting a haircut maybe when I first was allowed to leave the hospital for day release type thing.
Bill Gasiamis 1:09:56
I was getting my hair cut within the first three or four weeks the fall for Last month or something like that, yeah. And then I was at, I was at my local regular hairdresser. And she didn’t get to cut my hair that one of the other ladies did. And she was telling the other lady, you know, be careful with the way that you cut his hair and make sure you don’t touch it didn’t ruin that and make it worse or something.
Bill Gasiamis 1:10:24
And they were amazing. And they really helped me as well. But now that time has passed since it was, that was November 2014, when I had surgery. Now that the faint scar is still visible when my hair is really short, because they can’t see it. That’s where the screws are that hold the flap in. Some of them go over really rough with the clippers. And I’ve got to kind of either mention that, Oh, don’t say anything, and just sort of hold on for a few minutes while it happens, and then just move beyond.
Jason De Petris 1:11:02
I don’t know about you, but I have it’s luckily you can’t really see it because there’s hair grown over. But I have like, an indent on this side. And it’s soft right there. And it’s I don’t like being touched. I mean, it’s a headache because it makes me really nervous. I don’t like being touched still. It doesn’t hurt anymore. But I don’t like being touched.
Bill Gasiamis 1:11:23
Because of the indent. The Clippers don’t go straight over the top. They’ve got to get in there.
Jason De Petris 1:11:33
Yeah I don’t know, I don’t remember exactly. Yeah, I can. In the right kind of light, I can see where the screws are and stuff.
Bill Gasiamis 1:11:41
So they’re the real quick and little things that I experienced that a lot of stroke survivors have had brain surgery, anyone who’s had brain surgery can really relate to, and I’m sure some people are cringing and you know moving like I like I am and just can’t cope with it in the form of it. Now the other thing that that’s done is that’s really made it difficult for me to watch those crazy sports like boxing and UFC, which I was a keen fan of beforehand. Oh, interesting. I just can’t do it. Now. I can’t bear the thought of somebody getting hit in the head. Yeah, in any way, shape or form repetitively, like the way they do in those sports. So I couldn’t really grasp the concept of jumping into a ringing, get beat up as a Korea anyway. But, but now even more, so it’s like, yeah, all power to him. But like, wow, they do that.
Jason De Petris 1:12:38
It took me a long time to get over. I had a lot of anxiety about crowds afterwards, because particularly crowds where there’s children running around. Because I was so I was in a lot of pain. And, and, and my head was I mean, my head was all swollen and whatever. And I was so afraid that somebody was going to knock into me or knock me over or I was going to trip over a little kid or you know, I mean, and I was like, I don’t know, I don’t want to know what’s gonna happen if I hit my head. Yeah. So it took me a long time to get over that fear of going out in public when after immediately after the surgery.
Bill Gasiamis 1:13:12
Yeah, I found myself those probably two months after surgery when I first started going back to do some chores, like pick up some stuff from the mall on my own or whatever, you know, for groceries. I found myself becoming a magnet for people to bump into all the time. It was like, what’s happening to me? Why am I attracting so many people to run into me right now when I’m so vulnerable?
Bill Gasiamis 1:13:39
And I don’t want my head touched and I don’t want to fall over. It was exactly the same feeling. And it kind of went away. But it did create that bit of experience of kind of, you know, phobia of crowds. You know that agoraphobia that people talk about it was kind of a mild version of that. Yeah, I didn’t enjoy it at all. So I would go when it wasn’t busy when it was a low numbers of people through there.
Bill Gasiamis 1:14:11
It’s been a really amazing opportunity for me to get an interview for the second time, especially since so much has happened between the first time and the second time and you’ve come so far, and you’ve released this book. Congratulations on the book and getting through and overcoming the obstacles you’ve overcome so far. And thanks for being on the podcast. I wonder if people are interested in connecting with you and getting a copy of the book. Where would they go?
The Be Here Now Collective
Jason De Petris 1:14:44
So I’m really easy to find on Instagram so my Instagram Well, I have two Instagrams. One is just my name @JasonDePetris. And then I have an Instagram called The Be Here Now Collective which is specific We for the book. So they can find it there. In my bio, I have a in the bio, I have a link the Amazon link to purchase the book. I have had a few people actually reach out to me directly that just saw a post or whatever.
Jason De Petris 1:15:16
Send me a DM, which I’m I’m always happy to answer those. Yeah, I mean, I hope that people get something out of it. I hope that I hope that there’s something positive they get out of it where they can see you can recover. It’s not all doom and gloom. I mean, everybody’s experience, obviously is different. But there are certain things that all of us have in common. And I hope that people see that you can get through this. And I am donating the proceeds to the brain aneurysm foundation.
Bill Gasiamis 1:15:46
Yeah, that’s really cool. Well, thank you so much for being on the podcast.
Jason De Petris 1:15:52
Thank you for having me back on again. It was enjoyable. I always learned something. And it was fun to kind of talk through it.
Bill Gasiamis 1:16:02
My pleasure. Well, thanks so much for joining us on today’s episode. I hope you really enjoyed the chat with Jason and you got a lot out of this episode and maybe learn something. Please comment, like and share. If you are watching on YouTube subscribe hit the notification bell to get updates of new episodes as they become available.
Bill Gasiamis 1:16:22
The more interactions the episode has, the more the algorithm will push the episode out to people that need to see it and the greater the impact that Jason and his book will make in the world. Go to recoveryafterstroke.com to check out the show notes and any links to Jason and his website and where you can find the book. Thanks again for being here. I really appreciate you and I look forward to seeing you on the next episode.
Intro 1:16:52
Importantly, we present many podcast designed to give you an insight and understanding into the experiences of other individuals. The opinions and treatment protocols discussed during any podcast are the individuals own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.
Intro 1:17:09
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