Raphael DeLeon experienced a brain hemorrhage at age 54 because he neglected to take his high blood pressure medication thinking he would be fine.
Highlights:
01:10 Introduction
01:48 How the stroke happened
05:10 Using Siri to call for help
09:43 Coughing helps when you’re having a heart attack?
13:56 High Blood Pressure and Stroke
17:46 The out-of-body experience
26:49 The moment I met Jesus
34:09 Waking up in a hospital room
44:16 Going back to work after a stroke
53:51 What about cognitive fatigue?
1:10:25 The hardest thing Raphael ever had to do
Transcription:
Raphael De Leon 0:00
Something strange. When I was in the bed, my wife says that, you know, the doctor said, hey, you know, his feet are getting like really rough on the bottom. And they started bleeding. And they’re all like, does he have a condition? And she goes, No, he barely walks barefooted, he takes care of his feet.
Raphael De Leon 0:21
And then they’re like, well, that’s strange. And then one of the nurses in there she goes, she said, hey, you know what he’s walking. That looks like his feet are wearing out from walking. It is crazy okay? it is crazy, because my feet were worn out from walking barefooted, and I was laying on the bed. I was laying on the bed, and you know, nurses and doctors and my wife, they were all looking at my feet getting all worn out, all messed up, and I was just laying on the bed.
Intro 0:57
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.
Introduction – Raphael De Leon
Bill Gasiamis 1:10
Hello, and welcome once again to the recovery after stroke podcast, this is episode 243 and my guest today is Raphael De Leon, who neglected to take his medication that he was prescribed for high blood pressure. And as a result experienced a brain hemorrhage aged 54. Rafael De Leon, welcome to the podcast.
Raphael De Leon 1:32
Thank you.
Bill Gasiamis 1:34
Tell me a little bit about what happened to you.
Raphael De Leon 1:37
What happened to me? I was at work, you know, normal day. You want me to tell you the story?
Bill Gasiamis 1:45
Yeah, I’d love to know man.
How the stroke happened to Raphael De Leon
Raphael De Leon 1:48
All right. So I was at work normal day. I’m an operations manager. So I was making sure that everything was, you know, it was Friday afternoon, you know, I was making sure that everything was ready for the next week. You know, and it so happened that I was gonna have the parking lot painted.
Raphael De Leon 2:09
So I was making sure we have an electric gate. And I was making sure that the electric gate had the proper code to open for the painters on the next day. So you know, having said that, you know, I went to the back of the warehouse, there’s a guy that closes the, you know, in the warehouse, we are about 50 people and during the day on a Friday, so I went to go look for my friend Sergio one of the employees.
Raphael De Leon 2:37
He was nowhere to be found, I guess he had gone home already. So I went to my office. It took a breather, I sat down, you know, logged out of the system, close the lid on my computer. And then I put it in my backpack, but when I put it on my backpack, there was something going on on my torso.
Raphael De Leon 2:59
There was a little tingling and I sat down I was like, wait a minute, what is this because, you know, usually when you get tingles in your body is because you’ve been sitting too long, and you know, your body reacts right? But this tingling it started, like, you know traveling from my arm to my foot and I was like, Okay, this is odd.
Raphael De Leon 3:25
So I got up and when I got up, I immediately fell down, fell down to the floor under my desk. And when I was under my desk, I was like, Oh my God nothing worked on the left side of my body. And, you know, I started panicking. Like, oh my God, what is this? This is crazy. I mean, you know, and I figured, oh my god, I’m having a heart attack. I have never heard of a stroke in my life. Didn’t know what a stroke was.
Bill Gasiamis 4:01
Never had a family member ever knew anybody who had a stroke before?
Raphael De Leon 4:07
Never, never, you know, after, you know, like, I would say about three years ago, I was talking to one of my half sisters in El Salvador. And she told me, that my father died of a massive heart attack. But before he had the heart attack, he had a stroke. But I didn’t know that until about three years ago.
Raphael De Leon 4:32
And you know, when I went back to the doctor, I was kept telling him no, there’s you know, there’s cancer in the family. There’s, you know, heart condition, arrhythmia I mean, there’s all kinds of stuff but no one’s had a stroke. To my surprise my father died of a stroke and then a massive heart attack.
Raphael De Leon 4:54
So but anyway, so I closed the lid on my computer. I fell down on the ground and I was trying to reach for my phone, my phone, you know, my desk phone and you know, I couldn’t move, I couldn’t get up. And I was like, oh my god, what am I gonna do?
Using Siri to call for help
Raphael De Leon 5:10
And then it hit me. I’m like my phone. I was charging my phone on my desk, my cell phone, and I go, Okay, that’s it. I gotta get to my phone. So I tried again, threw all kinds of paper that were on my desk on the floor. And I couldn’t I couldn’t get to the phone. So then it hit me. I’m like, you know, Hey, Siri, you know?
Raphael De Leon 5:42
So, I use Siri.
Raphael De Leon 5:44
(Siri) Okay. Nevermind. But anyway, I said, Hey, you know, call 911. And I don’t want Siri to call 911 right now. Hold on, but anyway. So, I asked her to call 911. And then I got a computer answering and the computer said that it didn’t you know, this system does not take calls from Siri. And I was like, Oh, crap, you know, and then I called my wife and my wife, girlfriend at the time I married her after.
Raphael De Leon 6:34
I called and she was charging her phone. She was cooking and she had her phone on the bed. She was charging her phone. So this is what she told me right. And then I called one of my daughters. I have two daughters.
Raphael De Leon 6:52
I called her and Siri couldn’t make the call because I have a sister named Maritza and I was calling Marissa which is my daughter. Cancel Siri. Hold on okay? Sorry.
Raphael De Leon 7:14
So I was trying to call Marissa and Siri kept calling Maritza and then I said cancel. And then I call my youngest daughter and I you know, I said hey you know, Siri call Nicolette, who was my youngest daughter. And she picked up on the first ring.
Raphael De Leon 7:32
And I told her, Hey, mamas, you know, don’t freak out. But I’m on the floor. And I can’t move. And she’s like, What do you mean, you can’t move? I go, I don’t know. I think I’m having a heart attack. Because I can’t move, I can only roll on the floor. And but I can’t move. I can’t get up. Can you come and get me?
Raphael De Leon 7:54
She told me what do you mean, come and get you woman to call 911? And I go Yeah, call 911 tell them I’m on the floor. I’m under my desk, and I can’t move. And so she called. That was around 6:45 around 8pm? Or I think it was 6:45. Maybe it was you know, I was on the floor rolling I don’t know. The last time I looked at my phone it was 6:45.
Raphael De Leon 8:27
Maybe I rolled on for for a long time. But you know, the paramedics came around 8pm They knocked on my glass window. My office has a you know, a window in the back the whole wall is a window. Then they told me Sir can you move?
Raphael De Leon 8:50
And I go, No, I can’t. And then they asked me how do we get in? And I said I don’t know break something? Because it’s a it’s a high-security office, right. So they ended up going around and they on the receiving docks of the warehouse. They forced their way in in one of the roll up doors. And then they came in. And luckily the office one of the girls in the office left one of them windows open and that’s how they got into the office.
Bill Gasiamis 9:24
How dramatic man I can’t believe what you had to go through to get somebody to help you. It’s dramatic. I can’t believe that the phone doesn’t allow you to call emergency services.
Raphael De Leon 9:36
Yeah, 911 does not take calls from Siri.
Bill Gasiamis 9:42
That’s weird.
Coughing helps when you’re having a heart attack?
Raphael De Leon 9:43
It happened to me, but anyway, so well I was on the floor waiting for the paramedics and I forgot to mention that. I kept coughing because I watch TV, and I’m sort of a couch potato, but.
Bill Gasiamis 10:06
I know what you’re gonna say, cough it’s a good thing because it could help you if you’re having a heart attack, right?
Raphael De Leon 10:14
Yeah. Okay. So back in the days I was watching this. I forgot what program it was, but it was red fox red fox was being interviewed by somebody. And then, you know, red fox had a heart attack, and he was on the floor. And then he said that his best friend was a cardiologist.
Raphael De Leon 10:33
And he told him, keep coughing, because that brings oxygen to your brain. And then you can, you can wait until help arrives. So I remember that when I was on the floor, and I kept coughing and coughing and coughing. So when the paramedics came, I was coughing, and they were like, are you alright?.
Raphael De Leon 10:50
And then I go, Yeah, I mean, I can’t move. I don’t know what I have, then they said, Oh, and then you know, and then I stopped coughing because I’m like, Okay, finally, someone that’s gonna help me. And then they took me to the hospital, you know, and I was alert until the minute that, you know, they were deciding, what they were going to do with me i until about midnight, I was awake.
Bill Gasiamis 11:22
What was the cause of the stroke?
Bill Gasiamis 11:26
Just a quick break, and we’ll be right back to the interview. As a stroke survivor, I understand the difficulties of finding the right information about post-stroke nutrition. That’s why I developed the course five foods to avoid after stroke. While most people are talking about what to eat, after a stroke to support brain health, and recovery, very few are talking about what you should avoid eating after a stroke.
Bill Gasiamis 11:49
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Bill Gasiamis 12:12
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Bill Gasiamis 12:26
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Bill Gasiamis 12:45
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Bill Gasiamis 13:10
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Bill Gasiamis 13:37
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High Blood Pressure and Stroke – Raphael De Leon
Raphael De Leon 13:56
It was a mixture of so I have high blood pressure and I used to take my medicine on and off. You know I thought hey, I’m exercising. I you know I’m lifting weights I I’m you know I’m working out and eating healthy but I was overweight but so I figure No nothing’s gonna happen to me.
Raphael De Leon 14:20
You know, I don’t need the high blood pressure medicine. So, I will stop for a while and then I will start taking it. So it was I wasn’t taking care of myself okay? And finally, it got to me, I guess I had an aneurysm and a blood vessel burst and then had a major bleed.
Raphael De Leon 14:48
You know, when I woke up from a 22 day coma, you know, the doctors were you know, they were telling me as soon as I was able to talk to people that you know that I was some sort of miracle because no one. My girlfriend, my wife now, she fought the doctors. She fought the surgeons because they didn’t want to operate on me. They said, Oh, it’s useless, you know, no one survives this.
Bill Gasiamis 15:15
Wow. So you went to hospital? You were awake the entire time until really late in the evening. And then you fell into a coma?
Raphael De Leon 15:26
Actually, the coma was induced, because they said that they needed for my brain to rest. And they were going to do an operation, you know? The craniotomy, and they needed for, you know, because my, my brain was swollen from the bleeding, and it was a major bleed.
Raphael De Leon 15:54
And they said, you know, and they kept telling my wife, you know, they kept saying, you know, he’s is not going to survive, you know, we’re going to do it because, you’re pushing us, you know, she was gonna have me transferred to UCLA. I was in Presbyterian Hospital.
Raphael De Leon 15:54
And she was going to have me transferred to UCLA because they didn’t want to do the operation. So they finally said, they agreed, they said, Okay, fine, we’re gonna operate him, but you know, just so you know, that he might die, and, you know, on the OR, and she said, I’ll take those chances.
Raphael De Leon 16:37
And, and then the doctor said, okay, just so you know, the survival percentage is very low. I don’t know what percentage that was, I think it was between 10% and 20%. And, she said, don’t worry about it.
Raphael De Leon 16:55
I already asked God to bless your hands. And if she said that, the doctor rolled his eyes and he said, like, I’ve been doing this for 30 years, Lady and I don’t need God, and she goes, Okay, that’s fine.
Bill Gasiamis 17:09
So I asked him anyway.
Raphael De Leon 17:10
So 22 days later, I woke up, you know, I woke up I was in a room. First of all, I had, the craziest experience while I was in a coma, I went into a different place. You know, but that’s another story.
Bill Gasiamis 17:34
No, let’s talk about it. Let’s talk about it Rapha, tell me where did you go, man, what did you see?
Raphael De Leon 17:39
Where did I go? Okay.
Bill Gasiamis 17:43
If you don’t mind talking about it, that is?
Raphael De Leon had an out-of-body experience
Raphael De Leon 17:46
Oh, no, of course not. I don’t mind. So, I know, it was 22 days, they said that I was out. But in the place that I went to that I traveled to. It was months. It was months, I wouldn’t go to sleep. But it all started out. Like you know, like waking up every morning. And walking and walking and walking.
Raphael De Leon 18:19
And I was in the streets of Los Angeles. And, all the buildings were at the same height. No, no building taller than I would say 10 storeys high they were all brick buildings. And I knew the place and I walked and I walked for miles. And, and I was barefooted and I don’t like working barefoot, to me, it’s gross.
Raphael De Leon 18:48
I just don’t care for it. You know, I always have to have shoes on even when I go to the beach. I have my water, you know, my water shoes, I don’t like the feeling of the ground. You know? I mean, that’s just me. But anyway, so I was walking on the streets of Los Angeles right, day after day after day.
Raphael De Leon 19:07
And I would walk for my I mean for like, I will take like 30 blocks at a time and I awlays ended up on the same spot. And I will be looking around and looking at the buildings and I’m like, Oh my God, I know this place. So why can’t I get back to where I’m supposed to go? So I walk and walk and walk and you know, something strange.
Raphael De Leon 19:30
When I was in the bed, my wife says that, you know, the doctor said, hey, you know, his feet are getting like really rough on the bottom. And they started bleeding. And they’re all like, does he have a condition? And she goes, No, he barely works barefooted he takes care of his feet.
Raphael De Leon 19:51
And then they’re like, well, that’s strange. And then one of the nurses in there she goes, she said, hey, you know what he’s walking. He’s you know that looks like his feet are wearing out from walking.
Bill Gasiamis 20:05
What the hell man? What an amazing story.
Raphael De Leon 20:12
It is crazy, okay. It is crazy because my feet were worn out from walking barefooted and I was laying on the bed. I was laying on the bed, and you know, nurses and doctors and my wife, they were all looking at my feet getting all worn out, all messed up. And I was just laying on the bed.
Raphael De Leon 20:36
But anyway, so that went on, I walked for many, many, many, many days, I would say months, I would wake up. Or I would like start up every time. Like I said, it felt like waking up every morning. And I would look at the sky, the sky was brown, brownish, like a sepia color on a photograph.
Raphael De Leon 21:03
And the sun was always like, it was always like an afternoon. It was never morning. I looked in the sky, there was no signs of the sun. It was a bright, brownish day. And I would walk every day. And I wanted to get back home.
Raphael De Leon 21:24
And I remember having this you know having a stroke or having something right. Well know what a stroke was. I remember having a heart attack, but I was on the floor. And I was like, oh my God is this hell, I don’t want to say it. But I thought you know if I say it, it can become hell. But I will look up and I will look everywhere. There was no sounds of anything. It was all mute. But I would walk and walk and walk and trying to get back home.
Intro 21:57
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, doctors will explain things. But obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 22:21
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 it’s called seven questions to ask your doctor about your stroke.
Intro 22:41
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.
Raphael De Leon 23:01
And then one day I noticed that there was another road. And I and I looked at the road and I was like okay, that’s different. That’s a different road. They haven’t seen that road before. So I walked through that road. And then at the very end of the road, I saw something like look like Dodger Stadium like the baseball you know, stadium.
Raphael De Leon 23:28
Like, what is that thing, so I walked towards it on the way there, you know, it was a long straight growth, too, to the stadium, right. And I saw this guy with long hair going across the road and, and there was like it was a truck, but it was not really a truck. It was like one of those tandem trailers, you know, with a fifth wheel up and down like a little hill.
Raphael De Leon 24:01
And, and the guy that was going across the road, he was, you know, he was picking up people and telling them to get on the truck. And I looked at him and you know, I asked him I you know, I looked at him and I was like, Oh, we’re weird.
Raphael De Leon 24:15
All right, you know, but this is the first time that I was actually I saw people and so I just kept going to Dodger Stadium or whatever look like that they’re saying so when I got there when I got the place that it looks something like I don’t know if you remember MySpace, you know, the program MySpace, or in the background.
Raphael De Leon 24:42
It looked like one of those MySpace backgrounds, you know, and there was music and in the guide that it was like, like a swap meet like, you know, a place where they sell knickknacks and stuff. And then I I looked at the guy and they look like my balls, right? And I was like, what was he doing in here? But, but I didn’t talk to the guy.
Raphael De Leon 25:06
And there were two gypsies. And they had like this, you know, this stand and they have pictures on the on the stand. And then I, one of them approached me, she goes, what do you need? And I said, You know what? I’m trying to get back home, but I don’t know how. And this is the first time that I’m actually talking to anyone.
Raphael De Leon 25:29
And she goes, she goes really, and she goes, wants to take something from the, from the store. So I just went and grabbed two pictures of, you know, the Virgin Mary. Okay. And then I looked at them, and I gave them to her. And then she goes, Oh, okay. And then she gave me a marker.
Raphael De Leon 25:50
And when she gave me a marker, she goes, Just break something in the back of the picture. I go, What do you want me to write and she was anything anything that comes to mind? So I, I, you know, I flipped it picture. And then I wrote my name and my middle. My wife’s name on it. Right, Ralph. And then on the bottom, Cindy.
Raphael De Leon 26:12
And then I gave the pictures back where I only brought in one with pictures. She looked at the picture. And then she goes, Oh, you still have business up there. You go, oh, business up there. Where’s up there? And she goes, Oh, the place where you need to go, you know, you saying you say that you want to go back home.
Raphael De Leon 26:30
That’s where you need to go. And I go, Yeah, how do I get back there. And she will see that guy over there. And then she pointed out that the guy told you the crazy guy that was running across the road, from you know, on one end of the street to you know, across the street, from one side to the next, and picking up people put him in the truck.
The moment Raphael De Leon met Jesus
Raphael De Leon 26:49
And then I go, okay, so what do I tell him? She was just showing the picture. From the picture, go tell him that you need to go back home from the picture. I go okay, thanks. So I went down the road again. Stopped the guy, the guy smiled at me. It was like, you know, the greatest smile in the world. And I was like, Oh my God, you know, that’s cool.
Raphael De Leon 27:14
This guy is really cool. Right? And he had a face. Like, I’d seen him before, you know, this greenish, brownish eyes, you know, hazel eyes. And for some reason, I trusted the guy. And I looked at him and I was like, oh, yeah, they told me that that I should ask you, you know, the Gypsy back there told me that I should ask you, I should show you this.
Raphael De Leon 27:39
And you will tell me how to get back home. Then and then he looked at the picture. And then he goes, You know what? You still got business up there. And I go where is up there? He told me that I got business out there. But where’s up there? I just want to go home. He goes tell you what, just get on my truck and see that hill, but then he put it down on the road. And there were no more buildings. You know, it was just the hills. You will see that hill over there.
Raphael De Leon 28:10
He pointed at a little hill. He goes, I’m gonna take you halfways I’m gonna drop you off on that hill over there. And, you know, and then you can go back home. I’ll tell you how to get back home. I’m like okay, so I got on this truck. And when I got on the truck, I fell to the floor.
Raphael De Leon 28:34
You know, I was like, what a dummy, right? And then, he just looked at me and picked me up. He just picked me up from you know, from up there way up there and I was I freaked out because I was like, Oh my God, this frickin guy is strong. And I realized, man, how did his arm gets so long to pick me up from the floor, but didn’t think anything of it.
Raphael De Leon 29:00
When I was telling one of the guys, you know, and after I woke up from my coma, I told him the story about this one guy. And then he’s very religious. And then he goes, Dude you don’t realize who that was? And I gone no. And then he goes to your stupid, don’t you know that you met Jesus?
Raphael De Leon 29:21
And then I, you know, I was like, Oh, my God, my whole life. I said, you know, we used to kid around when we’re kids. What if you see Jesus was one day, what would you tell him? And I had all this things in my head. I would tell him this, I would ask him this, I would have that.
Raphael De Leon 29:39
And then when, you know when Peter, my friend, you know was telling me that that I had seen Jesus. I was like, Oh, I said, How do I get back home? You know, that’s all I had in my head. I had all these things to tell him and that’s what they said.
Bill Gasiamis 29:58
But that sounds like it was your mission. Any way. And it sounds like everyone was on board with your mission and your wife was on board. Everyone was on board. So I think you asked him the right question if Yeah, yes. That’s an amazing story, from the perspective of you just you’re telling it so vividly.
Bill Gasiamis 30:20
You’re explaining it in a way that’s so dramatic. You’re a great storyteller. And it’s really engaging. It’s like lovely to hear. And, you know, whatever it is, what it is to you, whatever it means, it seems like it means a lot. And if it helped you get back to be where you are right now. I think that’s an amazing thing, man.
Raphael De Leon 30:44
Yeah. So so he puts me back on the truck, right? But somebody’s back on the truck. And then, you know, then he starts going, we get to the Hill, he goes, Okay, this is where you’ll get off. My go, okay. And then he said, he said to me, you know, it was a fork, he goes, see that road right there, and it was a straight road.
Raphael De Leon 31:10
He goes, you’re gonna walk 22 Miles 20, exactly. 22 miles. And when you get to the very end, that’s where you need to go. Do not look to the sides. Because there’s gonna be a lot of a lot of distractions. And I’m sorry, I forgot to mention when I was in Dodger Stadium, I had the same thing. You know?
Raphael De Leon 31:34
Yeah, my wife, my, my brother, who passed away in 2005, came and told me, Hey, let’s go, let’s go down there, because it’s happening. And they were having a party, you know, downstairs on the ground, and Dodger Stadium and, and then he had a couple of friends who passed away too. And I looked at both of them, and I look at all three of them.
Raphael De Leon 31:58
And I’m like, no matter the schedule, they’re not gonna follow this guys. Because if I go down there, I’d say I’m dead. But, and then when I got When, when, when this guy was telling me to not look to the sides, because there were gonna be a lot of plantations, just to work 22 Straight miles.
Raphael De Leon 32:17
I was like, okay, so I started walking, he, he left, went on the other road. And then, and then I started walking. And the first thing that I saw that I that I did was look to the sides, because, you know, people like to disobey. And then it sounded like there was parties going on.
Raphael De Leon 32:36
So when I looked to the left, you know, all the guilty pleasures of in the world were happening. And it was very tempting. And, you know, I wanted to join in and I was like, Oh, wow, this is cool. I look to the right, same, the same thing. But then I remember, this guy told me to work 22 miles.
Raphael De Leon 32:59
And at the end of the road, I was going to find, you know, my way home. I said, Forget it. I’m like, I’m not joining, I’m not going. So I walked and walked and watch what seems like an eternity, you know, days, I walked that road. And finally, when I got to the very end, there was a chapel, very illuminated chapel. It was bright, almost blinding.
Raphael De Leon 33:25
And I looked at it, and I was I stopped, and I thought, oh, no, heck, no, I’m not going in there. Because I don’t know. If you remember when they say if you see a white light, don’t go in it, because that’s. But then, but then the guy said to go, you know, to go to go to the very end, because that was my way home.
Waking up in a hospital room
Raphael De Leon 33:49
So I just looked at it. And then the doors were wide open all doors, like, you know, like 12 feet tall, or, I don’t know, 20 feet tall, really, really tall doors. But they were open. So I went into the chapel. And then the chapel was all illuminated, it was all bright. And then I looked and I was like, Oh God, what is this? What is this place?
Raphael De Leon 34:16
And then I saw one of my co-workers, you know, who doesn’t work for the company anymore. He was there. And I had looked at him, you know, and he was sitting in one of the benches. And then in the altar, that was my, you know, my wife had a rosary and she was kneeling down and she was praying.
Raphael De Leon 34:34
And, and I walked up to her and I’m like, Oh my God. You know, finally, I think I made it home. So when I was gonna talk to her, the lights went on. The lights went on and there and I heard in the background, hey, he’s waking up. He’s waking up. And then I looked, and it was the room.
Raphael De Leon 34:54
It was the room in the hospital and they’re like, Oh, he’s waking up is waking up. And everybody’s like, You know, they’re coming towards me in the bed. And I looked and I was looking around and I saw their legs in the room. And I was like, where am I? And then there was like, hey, hey, and they kept talking to me.
Raphael De Leon 35:14
And they’re like, you know where you are? And I go, No. And, and then they said, Well, you’re up here. Ah, and we’re here, California. I don’t know. I’m in Australia somewhere. And I will. I will, I kept saying that I was in Australia. And they said, don’t know. This is Whittier, California. europea age. Do you remember you had a stroke and I?
Raphael De Leon 35:38
And then it hit me, right? I was like, Oh, yeah. And then my wife comes up to me. And she goes, Hey, it’s me. It’s Cindy. And I looked at her and I’m like, I don’t know you. I don’t know who you are. It’s me. It’s me. No, I don’t know who you are. I don’t know how you are. And then I saw my mom. And I was like, you know, I cried. And I was like, Hey, I’m back.
Raphael De Leon 36:04
I don’t know where it went. But I’m back. And then. And then, you know, she comes up to me, and she goes, Hey, it’s me. We’ve lived together for nine years. You know, it’s me. It’s Cindy. And, and I’m like, Oh, okay. And I go, What’s your mom’s name? And she goes, my mom’s name is Gloria. And they’re not and then I remember something right.
Raphael De Leon 36:29
And, and then, and then she goes, and I go, do you have good kids? And she goes, Yeah, I have two sons, remember? And I go, yeah, daylon and Ammy. Right. And she goes, yes, yes. And then I go, okay. Okay, I remember you’re now that’s how I woke up, man. That’s from trippy. To when I woke up. That’s
Bill Gasiamis 36:56
really trippy story. You know, I, I could just see somebody turning that into, into a short movie, you know, 30 minutes or 22 minutes, where you’re just you opens with somebody just walking, CPR, dark, bright, just walking, meeting all these people having a conversation, going to the light. And then waking up in a hospital going, Whoa, where am I? What am I doing?
Raphael De Leon 37:23
What are they? They told me? Hey, you better write down that story before you forget it. Forget it. Yeah, I was there. I learned. How can you forget something? So? So we’re from nice at the same time?
Bill Gasiamis 37:42
Yeah. So you. So you were in, in hospital for 22 days in a coma after the surgery, and then you woke up? What kind of deficits did you have? What did you have to learn to do again?
Raphael De Leon 37:59
So, so I stayed in the hospital for two months. And between those two months, I had therapy. The whole left side of my body did not work. I couldn’t move. My arm was swollen my arm, you know, my hand was like, really swollen. I couldn’t move it. You know, one day I woke up and I was I was moving my thumb.
Raphael De Leon 38:25
And they were all excited. Oh, my God, he was moving. He was moving. But I was alert. I was talking to people, they were asking me dumb questions. I’m a computer programmer. And they were asking me what two plus two is and I got so frustrated. I go guys, I do algorithms i i write code, or you know, I write programs for the company I work for.
Raphael De Leon 38:50
And you’re you guys are asking me simple math. No. And I asked my wife, can you bring in my laptop? Can you show him what real math is? And, you know, she caters to me and she brought the laptop and I showed him a few of my formulas and they were like, what is that I go that is my not two plus two.
Raphael De Leon 39:11
Everybody know that two plus two is five, you know, sarcastically saying and then they started laughing. Because as far as I know, it’s for I just wanted to want to make you laugh. They asked me if we threw a rock in water will it sink? And I’m like, Come on, guys, you know, unless you throw it and you know in the Dead Sea, it’s gonna sink but it’s gonna go like this. It’s gonna go slow. And they started laughing they’re like, Oh my God, this guy. You know the answers is guys.
Raphael De Leon 39:40
This guy’s good. This guy, you know, because they were testing my cognitive abilities. Right? Yeah, well, like and they left pretty much left me alone after that. You know, the end. It was just the physical therapy. I couldn’t move my arm. I couldn’t move my leg. They got me out of bed. They tried. You know They put me in this cage.
Raphael De Leon 40:02
You know this Walker, I couldn’t do the walker. So then they gave me something called the Hemi the Hemi Walker, which it had its four legs. It’s it’s like it’s like a little thing like a cage. And then you put it to the right. And then I started walking. And one of the guys one of the deputies said that this guy’s strong, he can do it.
Raphael De Leon 40:28
He doesn’t need you know, he doesn’t need to walk here the full body Walker, he can stand on his feet. And then I started walking. I mean, not walking. started moving. Sorry, moving. Yeah.
Bill Gasiamis 40:43
What does your left side feel like now? What does it feel like?
Raphael De Leon 40:48
It’s painful and daily basis. You know, it’s been three, almost three and a half years. It’s painful every day, different pains. It tingles. It’s limp. But it’s, you know, I can move my you know, my hand now I can. I can move my leg. I mean, I went back to work. See, I had the stroke in May of 2019. In October of 2019, you know, when I went, when I went home, I was in a wheelchair. I was in a wheelchair for almost.
Raphael De Leon 41:24
I went I went home on July 19 of 2019. And, and then then I was on a wheelchair for about a month and a half. And then one day I woke up and I and I told my wife, I’m not getting on a wheelchair again. I’m not. And I you know, and I haven’t really been working with fourpoint cane.
Raphael De Leon 41:50
And you know, in the house, I would never stop I would always be on the move. You know? So far, in three and a half years, I have only fallen four times to the ground. And to me, that’s a record.
Bill Gasiamis 42:07
That’s good man. Well done.
Raphael De Leon 42:11
times I failed because I was freaking exhausted because I myself, no, no. And the first time I went to I went to my neurologist after I came out of the hospital. He said, What are you doing here? My God, what do you mean? What am I doing? Here? He goes, Yeah, you’re supposed to be dead. You don’t know.
Raphael De Leon 42:31
But you cheated death. You know, let me show you your brain. And then he showed me the MRI, some of the picture of my brain. He goes, Look, see all that that’s all blood. You will have the fact that you’re here. You know, standing in front of me with a four point cane. It’s unbelievable. You know, you’re supposed to be there. But you know, here you are.
Raphael De Leon 42:57
Who you are arguing with me because I was like arguing with them and telling them why did what did they get a stroke? I mean, what happened? I exercise my whole life never drank. I mean, I used to drink socially. I never smoke. I never use drugs. I was always like, you know, I’m a workaholic. I love to work.
Raphael De Leon 43:19
I would wake up at four in the morning, 430 in the morning, you know, work out at 630. I will hit work from 7am until whatever time I was at work.
Bill Gasiamis 43:31
And high blood pressure was an issue for a long time. It
Raphael De Leon 43:36
was when the doctor said that it was a mixture of high blood pressure and the stress that I had gone for many years at work. Yeah. Yeah. And being an operations manager. Its stability. It’s a big it’s a big company.
Raphael De Leon 43:54
I work for Goya Goya foods, you know, I am in charge of California, you know, I’m second in command in California. Yeah, and, you know, and we were responsible for the whole company in California, you know,
Bill Gasiamis 44:14
How quickly were you able to return to work? And how did that go?
Going back to work after a stroke
Raphael De Leon 44:17
Oh, yeah, that’s where I was going. That was where I was gonna get to. So I went home in July of 2018. In October of 2018. I drove for the first time again, you know, like a few months after I had the stroke. I was like, Well, you know, I convinced my wife that I was able to drive and then she was like Okay, let’s go in the parking lot.
Raphael De Leon 44:42
Let’s see how you doing in the parking lot and I drove and then she was like, Okay, fine. So I went to a Christmas party to and for the company in December of 2019. And then the year after 2020 I will fit up Being up at home. And then I asked the doctor, hey, I need to go back to work. And he was laughing.
Raphael De Leon 45:07
He goes, you don’t want more time. And I go, Oh, because you’re the opposite to all my other patients, you want to go back to work, everybody beats me for more time at home, and I go, No man because I, I wanna, I want to, I want to be, you know, I don’t want to be one of those guys that that that milks the system, I want to go back to work, I want to, I want my life to mean something. And he was I respect that. So I was gonna go back in March of 2020.
Raphael De Leon 45:37
But that’s when the pandemic hit. Yeah, and the thing got shut down. So I was gonna go back and then you know, and then they said, No, let’s wait it out, you know, because you know, something might happen to you, you already survived a stroke, we don’t want you to get over and get sick, and you know, and then that, and then that dying on us so. So a few weeks went by in August, I was gonna go back again, I called the doctor and I said, Hey, I’m reading it.
Raphael De Leon 46:05
So give me another letter, but I didn’t want to go back to work. So he sent a letter, he emailed it to me, and then I melted back to work and and then I said, I was going back, but that’s when the second shutdown happened. And, and I was like, Oh, my God, and I wanted to go back to work so bad that was, that was sick. I mean, as as much as I love my wife, and I don’t want to be who I am. I didn’t want to feel confined to nothing to watch on TV.
Raphael De Leon 46:37
I hated TV back then. And then finally, in September, again, I call the doctor said, You know what, I don’t care what, you know, I don’t care about COVID I don’t care about anything, I need to go back to work, I cannot stand here anymore. If I get another stroke, because I’m, I’m gonna get depressed of being and in this place, I felt like I was confined to, you know, to being home to watching TV and watch the world go by with nothing.
Raphael De Leon 47:09
So he was okay, finally. So So I finally went to work in September of 2020. You know, went back, you know, the beginning people thought, you know, no, he’s not gonna make it. He’s like, you know, he’s, you know, they saw me struggling getting you know, getting up the steps to the to the office and all that stuff, but I probably wrong. I proved them wrong, since
Bill Gasiamis 47:36
everyone wrong so far. That’s really good. Rafa, tell me about how it’s changed your life. I know it’s changed your life physically in the way that your body works and other how has it impacted you? On a, you know, on a deeper level, how do you see life now because you had this amazing 22 day? Trip ID journey as well. So, you know, are things different? Do you see things differently now? How do you? How do you see life now? Like, what’s it about?
Raphael De Leon 48:10
Okay, to tell you the truth. I never took life for granted. Okay. I always, you know, people who know me, they know that I I’m an easygoing guy, I’m very, I care about everybody. I care about life, I care about, you know, life in general. And for me to say that I have a better perspective or another perspective in life, I would be lying because I have the same perspective.
Raphael De Leon 48:41
The only difference is that I went through some experience that really made me realize that you know, that I don’t know if you guys are religious. I was not religious. I was very spiritual. But having gone through what I went through, made me and this is the only thing that actually I can say that that changed a little bit. It made me a bigger believer.
Raphael De Leon 49:16
Okay. It did it because I did go to another place. It was real. It was not a dream. It was physical. It was it was there. You know, I felt it. I walked it. I saw this people.
Raphael De Leon 49:39
I saw things that. I don’t know if it was another dimension. I don’t remember who it was. I asked a priest because when I woke up,
Raphael De Leon 49:51
there was a priest that had been going like on a daily basis because they said that I was that wasn’t my children to die. They were waiting for me to die on a daily basis. And this priest kept going and going. And when I woke up and I told him the story, first of all, I told him the story and he will all he wasn’t all he was like, wow, where’s displays, and I go, I don’t know.
Raphael De Leon 50:14
And I described it to him. And he’s like, Oh, wow. Even asked him to look for 22 in the Bible to use, you know, numbers are very important in the Bible look for
Bill Gasiamis 50:25
is any reference
Raphael De Leon 50:28
22 is actually, when I look, when I looked it up in the Bible, it’s the number 22. Other things that signifies is how God communicates with us with a human being. Right? That’s the only thing that I gather from, you know, when I looked it up, and, but, you know, my perspective, adult life now it’s like, even though I never took it for granted, that little bit more meaningful.
Raphael De Leon 51:01
Like, you know, it’s I don’t know, it made me respect everything more. You know, and, in that, because I’m in this condition, I’m very slow, you know, physically, cognitively, I’m the same person. I never loved one grandma, who I used to be, I’m still, you know, I can still, you know, reacting, I see people with Aphasia I see people with, with other conditions after they had their stroke, and thank God, I don’t have any of that.
Bill Gasiamis 51:42
And how, so your, did you go back to your work in the same capacity as you were before as the operations manager? And how has your physical condition impacted the way you deliver on your job?
Raphael De Leon 51:58
Okay, so when I went back, you know, first of all, you know, the CEO of the company, you know, reassure me at work, you, cuz I asked him, me, if I, if I get better, can I go back to work? And he goes, Yes, by all means, we need you, we want you back. Once you get, you know, better, you know, you don’t have to worry about the job is going to be there, just get better, just wait it out, get better and go back to work.
Raphael De Leon 52:31
So when I went back to work, chain, because I was slow, and went into my office, and I was like, Oh my God, you know, how do I Oh, and then the owner, the CEO, which is my boss now, you know, he told me, Hey, you know, now, the difference is the difference now, between back then, when before you had the stroke, is now that you have a bunch of people that are going to be helping you, you’re gonna have, you’re gonna have a bunch of like, you know, people that will assist you do the labor, you know,
Raphael De Leon 53:07
And I go, okay, so, I went in the same capacity, they didn’t block anything. They were just watching me. And I’ve, I felt, you know, and one day I overheard someone saying, hey, you know, he’s not, he’s just gonna be there for a few days, and then he’s gonna leave because it’s too much. And, and I was like, you know, I didn’t want them or to know that I that I eavesdropped on their conversation. And, but I but I thought, Nah, I’m gonna show these people that I’m
Bill Gasiamis 53:42
Gonna prove them wrong as well.
Raphael De Leon 53:45
I’m gonna show them that. I’m here, then I’m back.
What about cognitive fatigue?
Bill Gasiamis 53:51
What about fatigue? What about cognitive fatigue, a lot of stroke survivors do struggle with cognitive fatigue, especially, I did when I sat down in front of a computer screen for the first time after brain surgery. And that was hard and it was hard for about a year and a half, two years. So what was it like for you?
Raphael De Leon 54:10
The only fatigue I have as physical if I get in front of a computer, especially, you know, the whole time that I was in, you know, in my house, I you know, I love Excel. You know, Microsoft Excel is to me like the greatest program in the world.
Bill Gasiamis 54:29
Wow, it probably is true. There’s so many people who I know who like who love Excel and just do things. I look at Excel and I just want to go to sleep it just puts me to sleep I can deal with that kind of stuff too much cognitive effort for for me to use Excel right so I just I’ve never used that for what it’s for what it is designed to be used for.
Bill Gasiamis 54:56
And then I meet people like you who go oh my god Excel this next saw that, and I know that it’s powerful, but my God, what are learning? What a skill to learn, it’s such a hard skill to learn,
Raphael De Leon 55:09
I can draw and sketch and you know, and Excel draw, I can draw pictures I can do, I can create formulas that will, you know, draw a picture, I have created this crazy, you know, spreadsheets that they have been used, you know, I ran into the spreadsheet the other day, you know, that I created for, for an accountant, you know, for the accountants, you know, like 1516 years ago.
Raphael De Leon 55:39
And then I looked at the formulas and 16 years ago was different, you know, you have to create these crazy formulas to make, you know, I spreadsheet work. And I looked at the formula that I created back then. And I was like, Oh my God, how the hell did I create that formula? And it was so weird, and they’re still using it to the day, you know, from 16 years ago, even though there’s so many other things, so many, you know, easier things.
Raphael De Leon 56:10
And what they said, when I went back, he goes over, it makes our life a little easier, because he makes everything dummy. Dummy dummy proof, you know that I give him a spreadsheet and everything is there. They don’t have to ask me for anything.
Bill Gasiamis 56:26
So the fatigue, man, that’s good that you get no,
Raphael De Leon 56:29
I don’t have any fatigue, cognitive fatigue. Fatigue, I don’t. That’s yeah. Now physically. Yeah, no, I don’t have and I had the, what’s it called the craniotomy, I had it, I have my scar right here. What happened? Because I don’t want people to see my scar. But I guess they say the right side of my brain is completely gone.
Raphael De Leon 57:07
Like a quarter of the brain is completely gone. And, but I think I had had been using the left side of my brain my whole life, because I woke up and I remember everything, and I’m like, I love it. I would
Bill Gasiamis 57:24
love to see your scans, I would love to see your scans, if you’ve caught them. It sounds like they are worth looking at.
Raphael De Leon 57:31
And that’s my job. I’ve been meaning to ask the doctor for them. But my wife always tells me, why do you want to see that?
Bill Gasiamis 57:38
I loved I’ve loved looking at my scans, seeing where the blood was, and try and understand what happened there didn’t bother me at all. It was really was really interesting. Thank you, it was really interesting.
Raphael De Leon 57:55
What do you have? What do you do? Did you experience
Bill Gasiamis 57:59
so had a brain hemorrhage as well, near the cerebellum, on the right side from about two inches in from my ear. And I had to learn how to walk again, use my left side again, I still have the tingles and numbness and the cold sensation on my left side and the tightness in the muscles. So I still have all of the deficits that was in 2014 was surgery.
Bill Gasiamis 58:29
So yeah, it’s been a bit of a and but then I experienced, you know, a lot of cognitive fatigue, physical fatigue a lot, a lot of issues there that took it took a long time, but they got better. As I started to get better and healthier, and more physically fit, everything came back.
Bill Gasiamis 58:49
But still all my deficits are there, all the things that I feel on my left side are all steel that are still there, you know, and that’s why I’m just when the MMA is that you that you got to be. And the damage in my brain is probably the size of a golf ball. And then at the most, you know, you’re telling me, a very large percentage of your brain is damaged, then I’m thinking well, that’s, that’s what I’m saying.
Bill Gasiamis 59:19
That’s a scan, I’d love to see because I’m speaking to the man. And then I want to see, I want to see what it looks like. And that’s maybe that’s why all your doctors are amazed. You shouldn’t be around. Well my nearer
Raphael De Leon 59:32
and nearer surgeon or you know, he’s he’s the he told me he goes, You know, it’s amazing that because you’re not you were supposed to wake up, not being able to talk, work, or even reason. And here you are arguing with me. I’ll tell you another story.
Raphael De Leon 59:52
So one day I’m going he told me he calls me on the phone and he tells me Hey, I you know Usually I have my nurses call my patients to tell them good news, but your special case, so I’m calling you personally, and I go what’s up? And then he goes, Well, you know that little, and I forget the name of it, but it’s like the beginning of an aneurysm.
Raphael De Leon 1:00:18
He told me, you know, that condition that we’re looking at, and we’re, we’re going to watch for years, and I told you that we’re going to you know what, we’re gonna keep an eye on it. I go, Yeah. He goes, Oh, first of all, let me tell you that I have a colleague here because I want him. You know, he wanted to, he wanted to talk to you as well. He wanted to get to know you. He wants to know you, too. He’s amazed at your story.
Raphael De Leon 1:00:41
And do you mind if I have him on the phone? I don’t know. I don’t mind. So they were both talking to me. And then he goes, you know, that, that, that aneurysm that we’re so worried about? And I told you, we’re gonna keep an eye on it. It’s not there no more. And I wanted to give you the news myself. They will. So congratulations is not there no more so we don’t have to worry about it. And I go, Oh, that’s great.
Raphael De Leon 1:01:04
You know, I was relieved because I don’t want to go through this again, right. And then, and then he goes, Yeah, and where are you at? And I go, Oh, I’m on my way to work. Legally, what do you mean, you’re on your way to work? Yeah. Well, I’m driving. I’m going to work right now. He goes, Uh, he has a party. My fingers get that fit here. You’re driving? Like, whoa, yeah, I try to work every day.
Raphael De Leon 1:01:32
Because No, but you’re driving and talking to me. And then I go, Yeah, you know, you call me. And then he like, didn’t and then I heard him say, didn’t I tell you about this guy? Then he goes, maybe and then I’m laughing. And I feel proud. I’m like, oh, man, they’re you know, they’re praising me. And that feels good.
Bill Gasiamis 1:01:54
You should be proud. And you should be proud. Whatever. The reason is that you’re here. It’s great that you’re here. It’s great that it worked out really well. It doesn’t often work out very well for people like us, man sometimes. Look nobody, the people on them on my podcast of the survivors.
Bill Gasiamis 1:02:11
It’s the recovery after stroke, podcast. Unfortunately, a lot of people don’t survive this stuff. And that’s the reality. So this podcast is for the survivors, so that we can encourage people to get back to life, chased
Raphael De Leon 1:02:29
by by Laura, I will do anything to encourage people because some people get sick because they get depressed. Yeah. And I understand I was depressed for a few days that I couldn’t move that I you know, I couldn’t. I went back to the gym and I tried lifting weights and I couldn’t.
Raphael De Leon 1:02:50
I couldn’t even lift one pound. And you know, when I was benching I one time I bench you know, I did five repetitions of 320 pounds on the bench and oh, that I was so you know, I mean, I’m only five, eight. And people in the gym were like, Whoa, wow, this little frickin guy can lift all that way.
Raphael De Leon 1:03:16
And now I wake up and I can’t even lift my own weight. So that was depressing. Press for I was I was not depressed at all. Okay, I was depressed for about a half hour. And my my thing in my head was like, I need to get up. I need to get on my life. I cannot stay in bed. I can lay in bed. Yeah.
Raphael De Leon 1:03:46
And that’s been my, that’s been, that’s what motivates me that I want to get on with my life. I don’t want to be in a wheelchair. I don’t want to be you know, not being able to do anything. I want to fend for myself, you know. And I’m lucky I have a beautiful wife and she’s helped me through the whole process.
Raphael De Leon 1:04:14
The people that helped me out the therapists, they were great. had like the greatest therapists in the world. And they were they were funny, too. They were like, oh my god, everybody wants to help you out because you know, you go to another person and they don’t want to get out of bed.
Raphael De Leon 1:04:33
I mean, you you’re always looking at the door, you know, and waiting for us to say hey, Ralph, let’s go. And that was my, you know, that was my thing. And and, and if anybody wants to hear my story, and if I can encourage people trust me, I will go and and I see you and you look normal to me and you Look, okay,
Bill Gasiamis 1:05:02
I’m far from normal. But yeah, I do. It doesn’t look like anything is wrong with me. But that that’s one of my challenges is, when you see me, you, you see the same person that I was before all of my three brain hemorrhages and brain surgery and learning how to walk again.
Bill Gasiamis 1:05:22
So the challenge that I had was because I looked so well, I couldn’t explain to people how I was feeling. And then that was very difficult for me frustrating. And people would have bigger expectations of me, because they they don’t understand. And then it’s like, I don’t know how to get the message across yet. It’s really, really difficult.
Bill Gasiamis 1:05:45
So this morning, I woke up, my left side is hurting a lot today, I’m not sure why I didn’t sleep at all last night, that might be one of the reasons. And I don’t know. And that means that today, I’m going to be tired all day. And I’m going to be different all day. But I can’t explain that to somebody that just don’t get it.
Bill Gasiamis 1:06:09
When I used to be tired beforehand. Because I didn’t sleep, it didn’t really affect my day to day didn’t really impact me. I was just tired. But I was able to be fully functioning and fully productive and do all the things that I do. Now I can’t I can’t be productive when I haven’t had a good night’s sleep and when my left side hurts, or the whole left side hurts.
Bill Gasiamis 1:06:36
And then when you can’t see it, and I have to interact with people, then I can’t explain it to them. It’s just so hard. And it’s just it’s just one of those things. I don’t know. First trading, right? Yeah, it’s frustrating. And that’s one of the reasons for the podcast is because with a podcast, I get to speak to two people a week or one person a week, who gets me who understands me, I understand them, they understand me, it’s like my therapy.
Bill Gasiamis 1:07:06
My family, I don’t never want them to understand because there’s only one way for them to understand. So I kind of accept that. But I wish I could just get the message across just so that they could give me a break on the day. When I needed it. If I could just today’s the day I need a break because of that reason that you can’t see.
Bill Gasiamis 1:07:32
That’s bothering me that’s making me feel unwell. If I could just get that over the line easier would be fantastic. But I do what I can and they they do what they can we’ve come a long way it’s taken. You know, it’s a 10 year journey so far for me 11 years this year.
Bill Gasiamis 1:07:49
So we are we’re getting further along and I don’t do things the way I used to do them before we can’t we can’t do them the same. I can’t personally do them the same. So it’s a new approach to my day. It’s a new approach to my life. It’s a new approach to everything.
Raphael De Leon 1:08:12
So what about you? What in what way? Do you think you change that they’re having a stroke? What what what do you what do you treasure the most now or what’s more important to you now than, than before?
Bill Gasiamis 1:08:26
I used to believe I used to have bad beliefs of that I wasn’t capable of doing something or able to achieve something or that’s good for them to do that. But that’s not something that I can do. You know, I used to have that type of negative self talk. And I used to struggle to ask for help. And I didn’t, I didn’t really believe in myself.
Bill Gasiamis 1:08:48
I listened to the people who were negative in their approach to me, and I took their advice instead of the people who were positive and supportive. And it used to really make me angry and frustrated that I used to take my anger and frustration out on my family.
Bill Gasiamis 1:09:06
Usually my kids it was disguised as discipline. It was disguised as I was being disciplined and disciplining them and teaching them the correct way and all that but it wasn’t it was more anger me not knowing how to behave like a 37 year old evolved human being I was just behaving like a child you know, 18 year old child that never really grew up.
Bill Gasiamis 1:09:34
And after the first and second bleeds are really started to take notice that I might not be around. So what I need to do is an edge and make things right with the people that are important to me because I love them. I just didn’t know how to do to show love correctly.
Bill Gasiamis 1:09:54
Because I loved them and I didn’t want them thinking that dad was always an angry guy you know if he died If I died, and I didn’t want him to think that, that’s all they remembered, you know, I want him to remember better things than that. So I put a lot of things, right, apologized a lot of people.
Bill Gasiamis 1:10:12
And now I don’t know, now I sit in the struggle of not knowing how to do something. So recently, I finished the first draft of my book. And that was a year and a half of writing. And it was the hardest thing I’ve ever done. It was such a difficult thing. Because of those cognitive issues that I have, my brain gets fried really easily.
The hardest thing Raphael De Leon ever had to do
Bill Gasiamis 1:10:35
I have to find windows where I’m feeling really, really well. And then just sit down for as long as I can and write as much as I can. That that’s a guy who has never written more than maybe one or two essays in his life, didn’t study, didn’t do homework, or hardly set my exams, you know, actually made a lot of effort to fail at school and not do well, because I just hated it, I just couldn’t.
Bill Gasiamis 1:11:05
I’m not sure if it’s a learning. If it’s a learning thing, I don’t know what it was, but I could not sit in a classroom and obtain information from my teachers, and from my books and absorb it, and actually do anything with it. I have other ways of learning.
Bill Gasiamis 1:11:21
So YouTube, for me is a godsend, you know, listening to books instead of reading books is far better for me because I can’t the pages off the getting the pages, the words off the pages, and into my brain is really hard, I’ve got to often go back and double read and triple read that page and trying to absorb that information.
Bill Gasiamis 1:11:48
So even though I have all of those challenges, some of them are in my own mind, some of them I’ve created, who knows how I got to be that way. But even though that was that I don’t, it doesn’t bother me now that something is hard and difficult. I’ll sit through I’ll find a way I’ll ever commit. And the book I started writing in COVID, locked down.
Bill Gasiamis 1:12:13
In Australia, we had so many of the men in Melbourne, we were locked down for two years, properly locked down. I started writing it as a thing, something to do like you, I can’t be at home, all day, every day for months after month after month, which is what we were and not do anything. So I thought I’m gonna write a book.
Bill Gasiamis 1:12:35
And when we got back to work, I think we finally got back to work. All the lockdowns ended in September 2021, then the book started to take a backseat. And I started trying to find time on the weekend to write it. But it was always on my mind, I’ve come so far, I’ve done seven out of 10 chapters, you know, I’ve got to do the next one, I’m going to do the next one. And I’m going to do the next one. And it was never, it never left my mind.
Bill Gasiamis 1:13:10
The hardest thing I’ve ever had to do. For the first time ever, it was always on my mind that I have to do this, I can’t not do it. So it’s just that I’ve got this opportunity to be alive still. And I’ve got the support to write the books, I had a book coach, I had encouragement.
Bill Gasiamis 1:13:29
I knew the book chapters, I had people coming out of everywhere telling me how telling me that they were happy to support me, I wasn’t going to let the opportunity go, I was going to definitely put something in writing and get it out, you know. And what was also interesting was, the working title of the book is stroke, the unexpected way that a stroke became the best thing that ever happened to me.
Bill Gasiamis 1:13:56
And it’s clear that it is because I have a podcast where I talk to people around the world. You know, we get nearly six and a half 1000 downloads a month. We get feedback from people all the time who telling me why the podcast is necessary and how it’s helping them. I’m coaching people to overcome some of the challenges that they have with stroke. I mean, you know, there’s no, nothing bad has come out of this stroke.
Bill Gasiamis 1:14:28
If I with my body. Most of the days are days where I can manage and I can cope and I can overcome the pain and the numbness and all that kind of stuff, you know, so it’s all good. So when, when the opportunity comes to do something that I just take it, I just do it whereas before I would tell myself, it’s not for you, Bill, you can’t do this.
Bill Gasiamis 1:14:50
It’s for other people to write books. You’re not a book writer. I never used to be a podcaster either, but here I am. I’m a podcast and you know, so that’s kind of how my life changes my My perspective is completely different. And now I just go after everything, I just don’t really care how long it’s gonna take or what the obstacles are.
Bill Gasiamis 1:15:10
I’ve learned that the obstacles are the way to the solution. But once you reach an obstacle, that’s the path you must take, you must overcome that obstacle and keep going forward, you know. And what was interesting was when I asked the people on Instagram, my Instagram, recovery after stroke, has got five and a half 1000 followers. So when I asked them, Is there other people that tell me strokes, the best thing that ever happened to them?
Bill Gasiamis 1:15:39
You know, people put their hand up and said, Yeah, that’s me. And me, and me and me. So when I interviewed them, to find out what the things were, that we had in common, how did we get to say that what was similar about that? The 10 chapters came up, I saw that there was at least 10 common things that they did, which is what I did.
Bill Gasiamis 1:16:03
And those those things became the chapters. So how can you not write that book, people need to know that many people are early on in their journey, and they might not appreciate that. It’s shit. It’s hard. It’s challenging. It’s changed your life. It’s taken stuff from you. It’s done all these things.
Bill Gasiamis 1:16:25
But maybe, maybe down the road, maybe we can look back on it. And we can say that we’ve had some post traumatic growth, instead of post traumatic stress, instead of depression, instead of all that stuff, maybe we can look back and go, even though it took all this stuff, it still gave me all have this other other stuff.
Bill Gasiamis 1:16:51
You know, so I’m hoping that that’s what it’s going to inspire people to think to think that. Let’s focus on the positives. What else we can get out of that. I always think about Stephen Hawking, man, Stephen Hawking, that physicist, you know, he had motor neurons disease or something like that.
Bill Gasiamis 1:17:09
And from the his mid 30s, he wasn’t able to move any part of his body and do anything. And he still became one of the world’s greatest physicists. Yeah. And he’s written books. And he’s like, the most amazing person that we ever we’ve ever heard about that made movies about him. I always think about that guy.
Bill Gasiamis 1:17:29
And then I’m wondering if if stroke survivors just look at what Stephen Hawking was able to achieve, and they achieved just 1/100 of what he achieved. It will be an amazing story.
Raphael De Leon 1:17:44
Yeah, no, I you know, and like I said, you know, we struggle, you and I and everyone has had a stroke with struggle, but that it is just a struggle. It’s, we’re alive. Which you should keep going. You know, feeling sorry about yourself is not gonna take you anywhere. It’s not gonna leave you anywhere. Yeah, you know, it’s life needs to go on.
Bill Gasiamis 1:18:16
And you get to enemy alive once that that’s the one thing that I really learned. Rafa, it’s it’s only going to be one time I’m going to be on this planet, like this now, so you know what,
Raphael De Leon 1:18:28
exactly, you know, what the hell? That was just gonna say that to you. We only get one chance at this. Yeah, that’s it. And you know, one of the things that I, I mean, I always watch the Discovery Channel, the older Learning Channel documentaries. I mean, I’m, I was a nerd since I was a little kid, right.
Raphael De Leon 1:18:53
But now with the new telescope, you know, the pictures of the universe and how big the universe is, and how meaningful it is, you know, even a split second in the universe, as small as we are. Its second is very meaningful. Whether you’re in the universe, whether you’re on Earth, or whether you’re in a different dimension, you know, but every second counts.
Bill Gasiamis 1:19:24
It could be meaningful, and it could be deeply meaningful. You know, I’ve had people on here who have aphasia, and they can hardly talk, but they still came on my podcast. It’s technically having somebody who has aphasia on a podcast is not the right approach, because it’s a talking medium. What are you supposed to do with somebody who can’t talk on a podcast, but that’s exactly.
Raphael De Leon 1:19:52
You don’t even know what kind of effort they’re trying to communicate with you. And then they’re calling things different, you know? So, I met a gentleman with a aphasia at a Starbucks. And he was trying to tell me, you know, I gathered just maybe 80% of what he was trying to tell me. He was so happy to see me.
Raphael De Leon 1:20:14
And we had the same, you know, condition. And he was struggling on the left. And he saw me in any waved at me, he came, He hugged me. And then he goes, did you have your stroke? And I told him, and that’s about a year after my stroke, and he said that he had gotten his stroke 15 years before.
Raphael De Leon 1:20:37
And then he was so happy to see me. And then, you know, we kind of like, I teared up a little bit he did to kind of cried, and, we were, he’s still my friend, and, and I think Facebook and Instagram, and we follow each other, we make fun of each other. And I know, and then he sends me this text that I don’t know what he’s saying.
Raphael De Leon 1:21:00
But you know, but I was, you know, send them like Smiley’s that I know, he’s trying to tell me something. And
Bill Gasiamis 1:21:08
it’s awesome. That’s exactly. And that’s it. That’s my point, you know, that’s, you have a podcast and have somebody who has aphasia who can’t talk, or communicate the way they used to. That’s the perfect person to have on a podcast, I absolutely love it.
Bill Gasiamis 1:21:22
I mean, the fact that we’re just gonna have people on who can speak clearly, and all that is ridiculous. Everybody needs to be on the podcast, because that’s the whole point of it, the whole point of it is to give people a platform, and to allow them to express themselves and to find a way to express themselves, which is different from the majority of us.
Bill Gasiamis 1:21:45
But it’s, even if it’s unique to them, it’s still what you said, it’s still important, it’s still impactful, it still has a lot of deep, meaning it’s relevant. It’s necessary, you know, so it’s like, that’s, that’s, that’s kind of indescribable. That’s the ink that lights me up, to be able to be that guy where somebody had decided to have the courage to overcome their aphasia.
Bill Gasiamis 1:22:17
And to come onto my podcast to do that. And it’s like, fantastic, man. That’s brilliant. I love it. Can’t I can’t get over that just really feels my heart to know that that’s a possibility.
Bill Gasiamis 1:22:30
Now, for people with aphasia, you know, whereas before, all this internet stuff, zoom, and before we couldn’t connect, you and I would never have met each other. I mean, it’s the best time to be on the planet. I know there’s stuff going wrong, but there always has been, but it’s never been a better time to be on the planet.
Raphael De Leon 1:22:47
It. Yes, I totally agree. Where are you from? What part of the world are you in?
Bill Gasiamis 1:22:54
I’m in Melbourne in Australia. Awesome. When you were
Raphael De Leon 1:22:59
my I have an uncle who lives in Queensland. Oh, yeah. Yeah.
Bill Gasiamis 1:23:04
Maybe that’s why you were thinking that you were in Australia when you were when you won’t
Raphael De Leon 1:23:09
tell you what one of the places that are that I went to during my coma? Was that Australia? I thought it was in Australia somewhere. Yeah. Yeah. And I’m telling you, I was there for months. And I walked the streets of LA then I was living then it comes and goes that I remember things. I was living in a trailer in the wilderness, and there was a river and then it was Australia. And I was like, wow, this is who knows me?
Bill Gasiamis 1:23:43
Doesn’t know. Maybe we’re everywhere. You’re everywhere.
Raphael De Leon 1:23:46
You know, the mind is something beautiful. You know, we create these things with our in our head. And I guess I was entertaining myself while I was in a coma knows.
Bill Gasiamis 1:23:58
Perfect, Rafa man, I really appreciate you connecting and coming on the podcast. I love your story. It’s an amazing story. I’m so glad that you proved everybody wrong, and they’re gonna keep doing that. And thanks so much for being on the podcast.
Raphael De Leon 1:24:16
Thank you. No, thank you for having me. And good job. You’re doing a great deed.
Bill Gasiamis 1:24:21
Thanks for joining us on today’s episodes. To learn more about my guests, including links to their social media and other pages and to download a full transcript of the entire interview. Please go to recoveryafterstroke.com/episodes.
Bill Gasiamis 1:24:35
If you’d like to try out the course five foods to avoid after stroke, go to recoveryafterstroke.com/courses and get on board now. If you would like to support this podcast, the best way to do it is to leave a five star review and a few words about what the show means to you on iTunes and Spotify.
Bill Gasiamis 1:24:52
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Bill Gasiamis 1:25:09
The interviews are not scripted, you do not have to plan for them all you need to do to qualify his be a stroke survivor, or care for someone who is a stroke survivor or you’re one of the fabulous people that help stroke survivors go to recoveryafterstroke.com/contact fill out the contact form and as soon as I receive your request, I will respond with more details on how you can choose a time that works for me and you to meet over zoom.
Bill Gasiamis 1:25:34
Thanks again for being here and listening. I really appreciate you see you on the next episode.
Intro 1:25:38
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