Trapped in a Coma: Fully Aware but Unable to Move

Summary

Podcast Summary: "Trapped in a Coma: Fully Aware but Unable to Move"

Podcast Information:

• Title: We're All Insane
• Host/Author: Devorah Roloff
• Episode: Trapped in a Coma: Fully Aware but Unable to Move
• Release Date: February 3, 2025

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Introduction

In the poignant episode titled "Trapped in a Coma: Fully Aware but Unable to Move," host Devorah Roloff delves deep into the harrowing yet inspiring journey of her guest, who shares an unfiltered account of battling addiction, a rare and terminal brain disease, and the subsequent fight for survival while being fully aware yet physically incapacitated.

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Guest Background and Early Struggles

The guest begins by recounting a troubled upbringing marked by parental divorce and the devastating loss of his mother to breast cancer at the age of 19. These early traumas set the stage for his descent into drug dealing as a means of survival.

[00:16] Guest: "I wasn't too happy about that. And then when I was nine years old, my mom was diagnosed with breast cancer..."

Struggling with insomnia and mouth pain, he experimented with painkillers, which eventually led to heroin addiction. Despite achieving professional success as a head executive chef, he concealed his addiction from his close circle, presenting an outwardly successful persona.

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Descent into Addiction

His narrative paints a vivid picture of his life as a double agent—balancing a respectable career with the clandestine dealings of drug trafficking. The guest explains how the opioid epidemic in Massachusetts influenced his path, escalating from selling weed to heroin.

[06:04] Guest: "...went to hospice and then oxy's got kind of banned or tamper proof and went to heroin basically. So, yeah, it's just like progressed and next thing you know, I'm like a heroin addict."

Despite his outward success and new marriage, the guest's addiction remained a concealed battle, leading him to a state where he was physically present but mentally trapped in a body ravaged by disease.

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Onset of the Brain Disease

At 27, the guest began experiencing alarming symptoms—changes in his voice, balance issues, and impaired motor functions. Initially dismissing these as normal effects of his substance use, he soon realized the severity when his wife insisted he seek medical attention.

[09:29] Guest: "Right. And I know I'm in the back of my head, I'm like, what the fuck?"

An emergency room visit led to the diagnosis of a rare and terminal condition: Acute Toxic Progressive Leukoencephalopathy. Faced with a prognosis of six months to live, he grappled with disbelief and the crushing reality of his imminent decline.

[17:12] Guest: "...they said it was a change in medical status... Six months to live, and I felt, like, great relief because, back to, like, MGH is good hospital teams of people."

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Life in the Neuro ICU

Locked in a state resembling a coma, the guest describes his experience as being fully conscious yet unable to communicate or move. This "locked-in" state was marked by intense pain, contractures, and a deep sense of isolation.

[34:06] Host: "You're literally trapped in your own body." [34:31] Guest: "Trapped in my body."

He shares the profound psychological torment of knowing he was alive but perceived as brain dead by medical staff. Efforts to communicate were met with disbelief until a breakthrough occurred through nonverbal communication techniques.

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Breakthrough and Rehabilitation

A turning point came when a specialist introduced a letter board system, enabling the guest to communicate through subtle blinks and movements. This breakthrough shifted his prognosis and initiated an intensive rehabilitation process.

[72:42] Host: "Felt like a normal." [72:44] Guest: "Do my job. You know? And I was like, wow. Like, someone just sent me an angel."

Through persistent effort and innovative therapy, he regained limited motor functions and began rebuilding his ability to communicate and perform daily tasks. His resilience led to significant progress, eventually allowing him to walk with assistance and engage more fully with the world around him.

[83:23] Guest: "I was in the headspace of like, this is the best rehab in the world and I'm gonna get every bit I can out of it. Like I'm gonna get better."

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Personal Relationships and Emotional Toll

The guest candidly discusses the strain his condition and addiction placed on his marriage. His ex-wife's initial departure and subsequent attempts to reconcile highlight the emotional complexities intertwined with his physical and mental battles.

[56:21] Host: "So if you're comfortable talking about this aspect with your relationship, I guess the toll that it took on that." [56:34] Guest: "Yeah, we can go into that a little bit."

While his relationship succumbed to the pressures of his condition, he emphasizes the enduring love and the importance of understanding and support in overcoming such profound challenges.

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Launching "Blink" and Sharing the Story

Motivated by his experiences, the guest has embarked on a mission to share his story through a new podcast titled "Blink Tell All." This venture aims to illuminate his journey, the mysteries surrounding his survival, and the broader implications of covert consciousness in medical science.

[89:34] Guest: "This has been three years in the making. It's finally coming out. And also I've been waiting to tell this before I could blink."

"Blink" is poised to offer a comprehensive exploration of his trials, featuring interviews with medical professionals, legal experts, and personal testimonies, all curated to provide a multifaceted view of his extraordinary ordeal.

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Overcoming Fear and Embracing Life

Despite ongoing fears about potential regression and the haunting memories of his past, the guest remains optimistic. His continued participation in physical therapy, commitment to his tech startup "Ahoy," and dedication to public speaking underscore his determination to rebuild and find purpose beyond his trauma.

[104:57] Guest: "But going back to, like, fear of progressing. I do. And I get really down on myself. I mean, I've been down on myself for like the last couple weeks." [105:39] Host: "Exactly, exactly. So how long have you been using the walker now?" [99:47] Guest: "And now I would say for the last year I've been like, you know, going to, like, getting in and out of an Uber by myself with this thing."

His story is not just one of survival but of transformation, illustrating how enduring the darkest times can lead to profound personal growth and a renewed appreciation for life.

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Conclusion

"Trapped in a Coma: Fully Aware but Unable to Move" is a profound testament to human resilience. Through raw and unfiltered storytelling, the guest illuminates the depths of addiction, the enigmatic nature of rare brain diseases, and the unwavering spirit required to overcome seemingly insurmountable odds. Devorah Roloff masterfully guides this narrative, ensuring that listeners gain not only insight into his unique journey but also inspiration to confront their own challenges with courage and hope.

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Notable Quotes:

• Guest [00:16]: "I wasn't too happy about that. And then when I was nine years old, my mom was diagnosed with breast cancer..."
• Guest [06:04]: "...went oxy's got kind of banned or tamper proof and went to heroin basically. So, yeah, it's just like progressed and next thing you know, I'm like a heroin addict."
• Host [34:06]: "You're literally trapped in your own body."
• Guest [34:31]: "Trapped in my body."
• Guest [72:42]: "Do my job. You know? And I was like, wow. Like, someone just sent me an angel."
• Guest [89:34]: "This has been three years in the making. It's finally coming out. And also I've been waiting to tell this before I could blink."

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Additional Information:

For those inspired by this episode and wishing to share their own stories, "We're All Insane" encourages listeners to reach out via email at [e-mail] or through the provided Google Form.

Transcript

[A]

I can say to my new Samsung Galaxy S25 Ultra, hey, find a keto friendly restaurant nearby and text it to Beth and Steve. And it does without me lifting a finger so I can get in more squats anywhere I can. 1, 2, 3.

[B]

Will that be cash or credit?

[A]

Credit.

[B]

4 Galaxy S25 Ultra. The AI companion that does the heavy lifting. So you can do. You get [e-mail] compatible with select apps. Requires Google Gemini account results may vary based on input. Check responses for accuracy. So I, you know, was born outside of Boston, parents got divorced at a young age. I wasn't too happy about that. And then when I was nine years old, my mom was diagnosed with breast cancer, which metastasized fairly quickly and things weren't looking good for her. And I was very close with her and distraught. So on the outside I'm like, you know, this like fun life of the party class clown type guy. On the inside I was hurting a lot. And anyway, my mom ended up dying when I was 19, so my high school life, you know, also thinking about when she dies, you know, what am I going to do for a career? How am I going to take care of myself? So drug dealing, you know, seemed like the right move at the time. So I became a hustler. Grew up in like a blue collar town, but then, you know, parents divorced, moved to a very wealthy town and I was like, oh, I can make some good money off these kids. And I was, you know, hustling weed. But that escalated to a lot of it. And there was a pain pill epidemic going on in Massachusetts around that time. And I was really against them actually. Like kids I knew, friends of mine were doing them dabbling. I was like, you guys are crazy. Until I got my wisdom teeth out, I had never done that. And then, you know, I was also so distraught from my mother, I developed being sick, I developed some sleep issues, some insomnia. So my teeth are hurting. I have insomnia and I'm just like, you know, call my buddy. I'm like, hey, you know those like oxygen guys do. I'm like, would that like help my mouth pain? I'm probably sound like chipmunk look like chipmunk. And it's like, oh yeah, totally comes over, brings me one, shows me how they do them. They like licked off the coating and they, you know, there's like foot callous things on cvs. They, they would just like grind a little the pillow on tin foil and smoke it with like a hollowed out Bic pen.

[A]

Okay.

[B]

And I Was like, wow. Okay. Took one hit of this with like my mouth swollen, immediate relief. And I got like the best night's night of sleep I've had since I was like 12. And I was like, wow, I like this.

[A]

And were you living with your dad?

[B]

I was living with my mom. My dad had moved away. I believe he was either living in Maine or Texas.

[A]

Okay, got it.

[B]

So I'm living with my sick mother who, you know, she always put on a very good face in everything I went through. I've. Which I'll get to. I look back and I'm like, wow. She was, you know, champion. Dealing with like two kids, step, step kids and going through chemo and just right, you know, cooking dinner and doing fun stuff for us. So I liked it a lot, but I didn't do it like all the time. It was, it seemed to be like a Friday night thing. And also one pill anoxiety would last me like the entire weekend. So it wasn't like. And I was still like dealing. But next thing I know, I'm like selling bees now. I'm like, wow, I can make good money. So then my mom dies or goes to hospice and my levels of, you know, drink, whether it was drinking, smoking weed or doing oxy or like whatever, it was never like really tough fun. It was like to get fucked up and like escape and. Yeah, that went on for a while and then she died and then it, you know, progressed and then oxy's got kind of banned or tamper proof and went to heroin basically. So, yeah, it's just like progressed and next thing you know, I'm like a heroin addict. I never injected, I smoked it. Which, like, I don't know, I thought was better, I guess. You know, I thought that I wouldn't like OD and die, I guess from smoking it. And I also thought, you know, I'm scared of needles anyway. But I also, you know, new friends that would shoot it and they would get like weird abscesses and like there's all kinds of.

[A]

Yeah.

[B]

That can come from that. Okay. So, you know, I've been doing this for, let's see, started. I've been doing this for like six years. At this point. I'm fast forwarding. Oh, I'll also mention, you know, being a drug dealer and everything and the connections I had, my, you know, my hookups, my, my plugs or whatever you want to call them were, were always like, you know, if you, you don't make the real money, you like, gotta get a real job or Else you're gonna go to jail. So, you know, I became like a head chef, culinary school trained. I always. So I had like two lives, you know, they. They intersected for sure. But I was like, it wasn't like I was just answering my three phones all day, like, sitting in the trap house. I was like, running the kitchen. But also, if I could sell at work, I definitely would. Yeah, I would have people sell for me. It was. It was crazy. So Anyway, I'm now 27, I'm newly married. I'm working as a head executive chef of a private country club, and I'm a full blown addict. But nobody that is not, like, on my inner circle really knows that I'm an addict. So, like, you know, I could be high out of my mind. By the way, when you're doing, like these hardcore opiates, you don't get high like that. You just are maintaining. Like, you. You can like, nod at the end of the night. Like, it's really about maintaining just like keeping that feeling. Keeping that feeling. Okay, Right? Because you get sick if you don't do it, you actually get sick. And dope sickness, for us to explain it, it's like, imagine the worst flu you ever had. Like, or Covid, but with like, the worst mental feeling of like, impending doom, right? Ever. It's like in those two things combined are just like, you're like, oh, my God, I'm done. That's what. I'm dying. And that's why it's so hard to get cleaned. Because, like, people go 48 hours in through torture, and then they're like, I can't take anymore.

[A]

Right?

[B]

Right back to it. So I'm like that, you know, But I'm a dealer, so I never really get sick because I always have it. And like, I can be smoking it and walk out to, you know, the dining room, my private club. How was food glad to handle the people? Like, no one. No one really knew, but it was getting kind of more and more out of control. So. I'm 27, newly married, and I feel weird one day and, you know, I can't really. I just know it started with my voice being a little off.

[A]

Okay.

[B]

And it was like, higher pitched. It was just. It's weird. And I know, like, at work and people I knew would be like, what's up with your voice? I'd be like, I don't know, you know? And. But in the back of my head, I'm like, what the fuck? You know? And so my wife at the time, now ex Wife, you know, it's like seven in the morning. I'm going to work. And she's like, are you drunk? And I'm like, no, it's 7 in the morning. I'm going to work. Was I high? Short, but I was high. Like, every.

[A]

That was the norm.

[B]

I woke up. That was the norm. And she was like, you should, like, go to the hospital. And I'm like, yeah. Like, I'm fine.

[A]

Did you feel okay? Like, normal?

[B]

I did. I did at that point. Just my voice. I did, like, I. I did sound drunk. So, like, I'll give her that for sure. It's. It sounded definitely off. And I remember, actually, I would try and talk less for about, like, a week because I was like, it's really weird. Next thing you notice it's, like, my balance. I would say five days later, it was like, the voicing, but when I'm walking through the halls, put up my hands, like, hold the walls to make sure, like, I could still walk good. And then my driving, I noticed that that was the next thing I noticed.

[A]

And it all happened fairly back to back, would you say?

[B]

I would say within two weeks.

[A]

Okay.

[B]

Yeah. And it was never like, something like, the voice got better, and then it was a balance.

[A]

It was just, like, progressing.

[B]

Yeah. But I didn't, like, think of it that way at that time. Looking back at it, like, yeah, if you were to ask me this, like, as it was happening, I'd be like, what do you.

[A]

But also seem like you keep yourself pretty. Or you kept yourself pretty busy at that point. So to be aware of all those things, I feel like it was easier just to be like, yeah, I'm fine.

[B]

Yeah. Also, like, you know, your typical guy that's like, I don't want to go to the er, you know, I can handle it. I'm all good.

[A]

Yeah.

[B]

You know, so. So then it was my driving, and I was somebody that. Yeah, I'm gonna say I was a good driver. Did I have a lot of speeding tickets and lose my license for that? For sure. But, like, you know, pretty good driver. I just noticed I started swerving, and it was like. The way I'll describe that swerve is like, if 18 wheelers come and pass you, like, and that wind, like, hits your car and it, like, jerks. It was like I did that out of nowhere. And I kept saying to myself in this time, like, what the hell is wrong with you? And I still didn't put it together. So anyway, the wife is like, you know, Ellen, you're going to the hospital. And she actually called the paramedics and get me. And my thought is like, okay, better get high before you go. So I would like duck in the bathroom, I'd smoke it off. And I couldn't even undo like, bag of drugs that I've bagged up and undid virtually my entire life, right? Because my fingers, like, won't work. And I remember I spit like, you know, 5 grams, which was like a thousand dollars worth on the floor. And I was like. And then the paramedics come back, come in with the gurney, and like, I like hopped right on the thing. I was still like, relatively like functioning. Yeah, like, you know, you saw me walk in here, which is like, you'll hear how that's a miracle. But yeah, that was like, I didn't require like a gurney to go to the hospital. So anyway, I get. I go through like triage, they bring it right in and I'm in the emergency room and they're like, we think you're having a stroke. And I still had like the cognition to be like, I don't think so. It's kind of been happening now for like a while. A stroke. Like, you know, from what I understand, it's like, happens and they're like, well, yeah, like, we don't. We don't know. We're going to run some tests, we're going to give you some IV fluids, like, hang tight. They run the tests or whatever. I don't know what they did. And they were about to discharge me. And then my ex wife comes in and she was like, you cannot discharge him. This is not. My husband takes up my phone and plays my voicemail and it's like my voice. I've been talking to these ER staff, totally different than my voicemail. And they're like, oh, that's weird. So they admit me and they give me an emergency mri. I also want to say that when I went to the hospital, I assumed it'd be like every other time, you know, you go there, you like spend six hours, you go some meds and you go about your life. I never left. Like, life was never the same after this. So they give me this mri. I remember feeling kind of dope sick and like passing out and I wake up in the morning or like, whatever. I don't think anyone woke me up. But there's like eight doctors in white coats in the room, like a nurse and one guy's sitting on my bed, hand them and eat and. And like, I immediately know, I'm like, oh, this isn't good. And they're just like, we're. We're so sorry. You have this extremely rare, terminal, progressive brain disease. And I'm like, terminal? And they're like, yeah, I'm like, how long am I? Like, like, probably six months. But like, it's progressive and it's going to get worse really fast. And I'm like, I'm. And I'm like, how did this happen? And they're like, well, they're like, thanks for being so honest with us about, like, you know, the, the drugs you've done and do. They're like, this can only be caused by inhalation of a toxin. And I'm like, so something pretty thin. And they're like, yeah, most likely, you know, a pesticide in. In the heroin, since you smoke that, like, on a daily basis. And I'm kind of like, like, why? Like, why is no one else sick? And they're like, well, that's because people that do heroin inject it. And here I am like a guy that sells this and I'm like, well, I know like 40 people that have smoked the same stuff, and I've been getting the same stuff for three years. Like, exactly. They're like, well, it's probably a pre genetic disposition. They're like, but if you have any. If you have any left, bring it in. You won't get in any trouble. We can test it and can look further in. So I look at my wife and I'm like, can you, like, go to the safe and bring that in? She's like, no. And she was so pissed. And, you know, I'm like, all right, I have six months to live. It's going to get worse. I'm dying. She's mad. This woman I love. Not worth arguing. Whatever. Like.

[A]

So did you guys ever bring it in?

[B]

No, she wouldn't bring it. And I didn't harp on it too much.

[A]

Okay. But if you guys would have brought. Or if she would have brought it in, you would have known for sure if it was from the heroin? Potentially.

[B]

Potentially.

[A]

Okay.

[B]

I mean, I. I don't know.

[A]

But you can there. But the doctors told you at this time you could only get this terminal.

[B]

Brain disease from inhaling in inhalation of a toxin.

[A]

Okay.

[B]

But like, I'm also like, okay, I like, smoke cigarettes of the time. I smoked a variety of things. Like, it could have been any, like, adjacent.

[A]

Yeah.

[B]

To heroin. And then also I'm a head executive chef. I'm breathing in, like, sometimes to shut the hood fans on, off, off, on Us. And then end of the night, I'm scrubbing down with these weird chemical. I mean, I'm breathing in right. God knows what for my whole life. And I'm kind of like. But also when you're given a terminal progressive diagnosis, like, you're kind of like, you know, full life review. And like, oh, I went so wrong. And like, all these hopes and dreams I had, like, I'm 27, you know, at the time. And I'm like, Jesus. Like, so I'm like, yeah, I. I think looking back, like, we really should have figured out what the hell this is. Also, like, from my understanding, there's only like 500 cases of this disease in the world and there's very limited research out there.

[A]

You would also think, like, it would be more common if it was from something that was. That you were doing in your everyday life. As far as common in the sense of, like, other people getting this.

[B]

Right?

[A]

Because it's not like, I mean, yeah, like, you were smoking heroin, but it's not like you said, it's not like you didn't know anyone else doing it.

[B]

Right? And like, they're like, oh, it's probably a bad batch. I'm like, the guys that I get this from, like, right. Bring in enough for the entire east coast of America. Like, yeah, like, weird. But also, I got other to think about right now. Okay, so the disease is called acute toxic progressive leukoencephalopathy. And they wrote it on a whiteboard and they explained each word to me and they were like, acute means is happening right now. Toxic. In this case, toxic toxin. You inhaled progressive. This will only get worse. And leukoencephalopathy is disease of the white matter viewpoint. So, like, apparently the MRI just showed like, massive damage in this. And I guess it sent it off and they showed characteristics of this rare disease. So then they talked about what I can expect and it was like, well, within the next two weeks, you're not going to be able to walk with support of people. Within the next month. Month, you'll be confined to a wheelchair, you'll become contracted, you'll be in a lot of pain. I wish they warned me how much pain I was actually going to be in. Well, I. I don't know if that made a difference, but they didn't prepare me for the pain that I was about to endure. I mean, I'm sure I didn't think it was going to be roses, but this was worse than that. Yeah, and then they were like, yeah, and like stage four month, month Three and four, you're gonna be bed bound. You're gonna lose the ability to eat, swallow, talk. You'll end up on a trach feeding tube until you slip into a coma and likely die. And a mic. So there's no chance of getting better. And they're like, no. And I'm like, I'm like, so comb and death. And they're like, well, you know, you could make it. No one else has, but you're not gonna get better. So I'm like, oh, jeez. So I went through. I went through a bunch of grief really fast. Yeah, like within a day. So this was Memorial Day weekend, 2017. I think it was diagnosed like Friday or Saturday morning. I went through all this grief in stages of the grief within like an 8 hour, 12 hours. So like, real quick on that. I immediately was like, I'm fucked. Called connect of mine and was like, can you bring me a bag to the hospital? They're like, what happened? Kind of told them. They're like, oh, don't make me do that. I'm like, doesn't matter, I'm dead anyway. Got high in my hospital bed. Just. I didn't give a shit. Nurse walked in, she's, oh my God, what are you doing? You know, we're so done with new Year.

[A]

New you this year it's more youe on Bumble. More of you shamelessly sending playlists, especially that one filled with show tunes.

[B]

More of you finding Geminis because you know you always like them.

[A]

More of you dating with intention because.

[B]

You know what you want and you know what, we love that for you.

[A]

Someone else will too.

[B]

Be more you this year. And find them on Bumblebee.

[A]

Live in my last days.

[B]

Yeah.

[A]

What are you doing?

[B]

And the doctors came in. They're like, maybe we're gonna make this clear. Like, if you stop right now, like, you might have six months. You know, you have to decide how you want to live your last days. And we're gonna leave that up to you. And so that's what I mean by I went through all this grief super fast. So in that day, I went from like. And they left me and I kept getting high. And then after a few hours, I was like, you know what? I'm gonna like, try and fight this and I'm gonna do it, like, for me and my family. And. Yeah, so, you know, stop doing drugs on day one of it pretty much. And just made the decision to do everything I could. There was no treatment for this. I recommended three extremely high doses of vitamins that Showed some. I don't know what. And there was nothing really else, but I was just like, I'm gonna do whatever they recommend. So anyway, I stay at this hospital for two weeks. They put me in this rehab hospital, which I was, like, confused why. I'm like, now. Now I get it. It's like, to prolong your abilities. But I rapidly declined, I would say within the first month, I was in a horrible nursing home. 27. And I was just losing abilities day by day. My fingers. So when you're, like, bedridden for a while, you become contracted, and that's, like, your tendons just, like, so my fingers would curl in until my fingernails were stuck on. My palms hurt so bad. My ankles. I look like ballerina. They're just stuck. They. They're like bricks, you know? Yeah. I had a variety of, like, medical complexities. I don't. Do you want to, like, ask me anything about this before I move on?

[A]

I'm very intrigued. I think you're doing an amazing job. So unless you want to go into more. I mean, like, it's not.

[B]

Yeah, no, it's. I can keep going. So anyway, I'm like, you know, I kept saying to myself, well, can't get any worse, you know? And sure enough, the next day, something else would happen that was. Felt worse. And then the next thing to go was kind of the ability to go to the bathroom, the ability to. You know, I could talk, but I was talking like that. They're like, are you okay? I'm like, oh, yeah. And, like, that's how my voice started. Just.

[A]

Yeah.

[B]

Until it was nothing gone.

[A]

And how long until it got to that point without being able to use the bathroom and losing your voice?

[B]

So I'm diagnosed end of May, and by October 31st, my birthday, I'm like, that was my last day outside. My. My wife tried to do something very nice, have this, like, day going out. They were gonna get me on a boat. There's actually, like, video. Like, only very little video evidence of my existence before this disease, which I'll get into after on why. But, yeah, there's, like, video of this day. Right. And they try and, like, and succeed get me on this boat. But, I mean, I was in so much pain that I was being, like, dragged.

[A]

It was now with the pain was just full body, like, all over pain.

[B]

Yeah. I've learned a lot about pain. So it was. There are, like, many different types of pain. So it was like, what I was saying about, like, that would hurt. That felt like my bones and muscles and tendons were, like, almost in a vice grip, being, like, twisted and contorted. I would also have, like, neuropathy. I would have autonomic storming, which is like this constellation of, like, bizarre symptoms. I would be. I would have these extreme temperature swings where I'd be like 106.2. And then in like, a flash, I'd be hypothermic. I'd be like 95. And my heart rate is in, like, triple tachycardia. I'm, like, sweating. I'm burning. I have sensory stuff. So. Like that. That boat ride. Damn. Talking about, like, a hot day. It was Halloween in New England, but the sun was out. And I could feel the sun on my skin. It felt like I was being cooked in an oven. It's just like all this stuff, you know, and then.

[A]

Except you wouldn't even think of.

[B]

Yeah. And then, you know, like, just hypersensitive to light, to. To breeze. Like, my nails would hurt, like, so bad. I found out in my recovery from the pressure, they started growing sideways. So, like, through the sides of my fingers. That's probably what was hurting. I've had to have three surgeries to correct that. So, yeah, that was my. So from. How long is that? From end of May, so June, July, like five. Yeah. So within five. I guess it was longer than I thought. But I mean, it was. It was pretty bad. And by November 1st, I can no longer speak. I need a feeding tube. I may have needed a feeding dupe. There's another thing, the ability to, like, swallow. So they. They like, thicken water for you. It's like whole. Whole thing. There's like, honey thick, there's nectar thick, there's pudding thick. And like, on the way downhill when you're losing ability to swallow, that's how, like, you know, they. They have this stuff called thicket. It's like, good. I guess that exists, but it's so disgusting. Yeah, but it's the same way of relearning how to swallow. You know, I had to do it in reverse. So, yeah, like, you know, feeding tube is necessary trach for breathing. And then come November, I'm like, in the neuro ICU of Mass General Hospital in Boston. And. Yeah, you know, I can't talk. I'm essentially fully paralyzed. I can't even, like, turn my head. So I have a positional eye gaze. And I'm kind of just there waiting to die. Right. And I know I'm in, like, stage four of this disease, so I'm still like, the same Guy inside.

[A]

Right.

[B]

Like mentally, like fully there, the same talking to myself. Because when you're in a state like that, I don't know if people like talk to themselves. I don't know if you talk to yourself.

[A]

I do quite often.

[B]

So I was always someone who talked to themselves. But in this, you know, this is a whole new level of talking to yourself because it's the only communication I got. So I would like kind of talk to myself. So same voice, same memory, same cognition level. Like, I'm not saying I'm super smart, but like, I think I'm fairly smart. And that, that didn't change. That's the point of it. Right. So like.

[A]

And mentally in this moment, did you just feel like, done? Like, were you ready to die?

[B]

Yeah, yeah, I was. I was. Yeah. I didn't want to, but I was certainly ready. And. And I was in so much pain and it sucked so bad that I was.

[A]

And I mean, they told you that it. Yeah, it wasn't going to get back.

[B]

Impossible.

[A]

Right.

[B]

And even if they told me there was like 1% chance of hope, I think I'd still be ready to go at that point. Yeah, I mean, it was.

[A]

Cuz you didn't really have any like signs or glimmers of hope at that point.

[B]

It's just unimaginable. And I'm like talking to myself with my. I'm like so bad. I'm like kind of talking to myself out of a panic attack constantly. And you know, like, I can't signal for anything I need.

[A]

Like, so would they just come in and check on you?

[B]

Like, yeah, whenever. And do things. And I didn't necessarily know what they were doing. Well, for a while, most nurses would come in and be like, Good morning, Mr. Handel. Like, I'm Debbie, I'm here to change your IV. Like, how are we doing today? And then like, and I'm looking kind of at the ceiling and I'm just like, ah, this sucks.

[A]

You're literally trapped in your own body.

[B]

Trapped in my body. And I didn't realize to what extent I was trapped in my own body or. No, I did, but. Okay, I'm just gonna say the next thing. So all these medical people that would come into my room, like that whole like, good morning, I'm here to change your feet. That would stop and they would just come in and they would like, do whatever. Not that I could see. I could see like my line of sight. So if they put me up in bed, I can see like you. If they put me down, I Could see, like, your. Your lights up here, but all this, like, talking kind of stopped. And I was just like, that's kind of like. To myself, I'm like, that's weird. So the way I kind of figured out how. I was about to say how bad this was, but, like, it. It still was so bad, but, like, I didn't know how I was perceived. 2. Two nurses come in and they're like, working on me in teams. I have no idea what they're doing. This one nurse just says, I gotta tell you about this real awkward hookup I had last night to the other nurse. In my head, I'm like, this is like the best thing I've heard. I can't wait to hear this story. I think my pain, like, actually stopped in that moment, waiting in anticipation. And this other nurse, she's like, kind of giggling and she's like, well, maybe we shouldn't talk in front of the patient. And I'm like. I'm like, oh, no. And she's like, oh, like, don't worry, he can't hear you. He's brain dead. And I'm like, what? I'm like, they think I am brain dead. And I start freaking out. I'm just like, freaking the fuck out.

[A]

That's insane. So your eyes, right? Were your eyes open or like, you.

[B]

I could see the ceiling.

[A]

Okay.

[B]

So the only thing I had, apparently, and I knew this after the fact, was involuntary vertical eye movements. So essentially my eyes would do whatever they wanted to do. But most of the time I could see positionally for sure. I heard they fluttered, like sometimes. Sometimes I look, I hear it was quite scary to look at me. Yeah, but.

[A]

So they just saw you're completely brain dead at this point. Probably because, what, you just couldn't respond to anything anymore? I guess.

[B]

I mean, I guess. I mean, I just hear this and I'm like, oh, my God. Like, they. They have no idea.

[A]

Oh, my God.

[B]

That I'm in here. Like, I'm the same guy. But then I'm like, wait, am I branded?

[A]

Right?

[B]

And then I'm like, is this like a bad dream? I'm like, is this. Yeah, that. Or is this what happens when you're, like, about to die? Is this a hallucination?

[A]

Right?

[B]

Am I dead?

[A]

And I'm just like, that's terrifying isn't even the word.

[B]

I don't know what the word is. If you think of the word, let me know. I'm working up. I mean, it's just like unbelievable, unexplainable with, like, Definitely insanity in there. And like the worst. But I'm.

[A]

I'm just like, at least tell me the story. That's probably what you were thinking the moment. Like, damn, let me hear this.

[B]

You know, and a lot I've said that in social media. A lot of people are like, did you ever hear right story? And I'm like, no, I never heard the story. Maybe they even said it. But I was in so much panic in my head that I didn't hear it right. Because I actually, now that I think about it and we're talking about it, if. If they say, no, don't worry, he's brain dead. Logical next step is to tell the hookup story. Yeah, but I think I was in panic. Like, straight up. Like that feeling of going down a roller coaster, even though I'm paralyzed at this point, like, that feel, I was just like, oh my God. Like, it was just a surge of like, panic, right? So I go through all these thoughts of like, wait, am I. And I. Somewhat quickly. It's hard to see how much time this was because I had no clock ever, by the way. I was in this state for 10 months, which is also insane because 10 months of that felt like 50 years.

[A]

So 10 months from the start or 10 months from this point where they thought you were brain dead?

[B]

10 months from hearing, okay, yeah, no fast forward. But anyway, fairly quickly, I was like, no, I know who I am. I know where I am. I know what's happening. I'm not brain dead. And they think I'm brain dead. And holy fucking shit, how do I let them know I'm not brain dead? And then the next thought, because I know where I am. I'm like, how many other people in comas are screaming in pain inside and fully aware like, I am. I can't be the only one. And I'm like, I gotta. I gotta let him know. I gotta let him know. And it became a little bit of a mission to let them know. I don't think that's why I made it through. I definitely wanted death many times during that 10 months of this.

[A]

Now, during this time too. Was there. Why. Why did they keep you in that state for 10 months? Like, was somebody. Could somebody have made the choice to pull the plug?

[B]

So that, that's, that's coming up.

[A]

Okay.

[B]

Yeah. But yes. Yeah, so I don't think they were keeping me though, in this. Like, it just, like, happened. And like, yes, I was on a trach. So, yeah, I guess there were. That was breathing for me. So, yeah, I Guess, you know, so they definitely. If I was to, like, gauge timeline, I would say I heard this mid to end November. And then some point in, I want to say December again, hard to gauge, like, for Christmas. I know it was before Christmas. My wife's in the room again. I'm looking at the ceiling, and I know a bunch of doctors own the room, and they're like, we're. We're really sorry, Mrs. Handle. Your husband's not gonna make it to Christmas. It's time for us to think about withdrawing life support. And I'm like that. And. And I've been wanting death now for what felt like a while, you know, like, not. I didn't want to die, but I was tired of this state. And when I heard them say that, I was like, no, don't do that. I'm here. Even though I wanted that, you know, I was tired. I was ready. But when I heard that, it made me be like, I gotta let you guys know I'm in here. It felt important, I think. And, you know, my wife said. My ex wife. I keep calling my wife.

[A]

It's okay.

[B]

What should I call. Should I just call her name?

[A]

Whatever you want.

[B]

I'm gonna call her name.

[A]

Okay.

[B]

I do. The hell that I'm speaking. My wife.

[A]

Well, because I feel like it's very. In the moment.

[B]

It's in the moment.

[A]

Yeah.

[B]

All right, so I'm gonna keep doing.

[A]

Yeah. Have you written a book?

[B]

Yeah.

[A]

Okay, good.

[B]

Because I was gonna say it's not published, but.

[A]

Because you need. You need to.

[B]

Right.

[A]

Like, I really feel like I'm like, I have.

[B]

I have this.

[A]

I feel like they'd make a movie out of this.

[B]

I have the sole plan, which. Which.

[A]

Okay, good.

[B]

Maybe towards the end of the second.

[A]

Okay, you'll let us know about the plan?

[B]

Yeah, you know, the plan. So my wife in the moment was like, no, I don't want to do that. And I felt, like, relief even. But right after the relief, I was like, fuck, more this. And then I made it through Christmas, and I know from, like, records and everything that I was referred to as a Christmas miracle. But then I heard them say, well, he won't make it past New Year's. I made it past New Year's. And then they said it was time for hospice because now I got better not dying. Can't say there forever in the trauma center. So time for hospice. So I went on home hospice and six months of that.

[A]

At this point, were you feeling any pain still or. Yes. Okay.

[B]

It was getting worse. And Worse, I was. I was really actually quite ready. And as time went on, I was just like.

[A]

Like, it makes me wonder, like, if. And I'm sure you will probably answer this, but if the doctors knew that you were still feeling any type of pain.

[B]

Well, they know now, right? I know that, but I don't know if they knew. And granted, in this time of hospice, I was on 55. Zero medications, and I want to say 10 of those were more related to pain and anxiety.

[A]

So you were still getting medication for that?

[B]

Extremely high doses. Okay. But was it helping? Not in the slightest.

[A]

Okay.

[B]

Now, if they took it all away, probably would have just died. I don't. Or maybe not. I actually think on hospice, when you're putting on comfort measures only, that's like part of the protocol. It's like, let's load them up so they peacefully float away.

[A]

Yeah.

[B]

Which they were doing. And that did not happen. I have no idea why I'm alive, by the way. I mean, I should be dead for numerous reasons. And then even within this medical crazy episode. I mean, I had hundreds of near death experiences within this.

[A]

Yeah.

[B]

Which I'll tell you about a few, but. So my hospice is probably second week. And again, positional ag is mainly looking at the ceiling. I. I overhear hospice nurse say he's got hours left. And in my head, I was like, I was kind of angry and frustrated when I heard this. Like, or in Be in the mo. Like in that hour. And then I heard this. So I was in my. I said to myself, like, I've heard this before. Like, I don't, you know, I don't buy it.

[A]

You're wrong.

[B]

Yeah. And I get like, sadly, you're wrong. Cuz, like, jeez, how much more that's gonna take? Right? So I remember I get propped up, someone gives me like a pillow. And this was the first time in a long time I could see my chest and my. Again in the moment my wife knew I was like, really hot, which I was. So I. I don't think I had any clothes on. I think I had like a towel, like, anyway, propped up by a pillow. First time I can see my chest, right. And it was like blue. And I was like, oh, maybe I am dying. Actually, it was very blue. And it's funny that I, like, smile.

[A]

The way that you explain it.

[B]

I know, I know.

[A]

Kind of funny. It's. I mean, it's. Honestly, I think that there's a positivity in humor.

[B]

I wonder because. No, like, I do talk sometimes. Sometimes it'll just like be. It's just so ridiculous that I don't. It's just.

[A]

Right. That's what I'm saying. It literally sounds like a movie.

[B]

Yeah. It's insane.

[A]

Like a up weird ass movie.

[B]

It's super up.

[A]

That somebody would make up.

[B]

Yeah. That somebody would make up something you would say in lifetime and be like, yeah, right. Okay.

[A]

So you look down.

[B]

So I'm close. I'm like, okay, maybe now is actually. Maybe I'm dying. He's got hours left. And this story, but tell you, is a near death experience. But I think this is the closest that is humanly possible to come. Like to almost die, not die and come back.

[A]

Come back. Yeah.

[B]

And I know people have actually died before and come back and I've heard a few of their stories and I did not. I think everyone's experiences can be unique. Like for sure. It's just like brain chemicals. Who knows? So this is like what happened for me. So I remember there was arguing in the room. And there's very complex family dynamic that will be talked about in blink that I've not yet publicly talked about. But anyway, they're just arguing. And I'm like hearing all this arguing. I can't see it, but I know it's like from this side, this side. And they're getting loud. Someone's upstairs yelling. And this starts to like their volumes, like lower. Not because they lowered their volumes, but it was like my brain lowered their volumes. And simultaneously I start hearing a hum like a fluorescent light can make. I don't know if you ever heard like lights humming. So it was like this humming getting louder, their voices getting lower. And until it was all hum, no more voice. And right when it was no more voice, it was like this chronic pain I've been in for so fucking long starts to like float away. So I'm in no pain. I hear hum and no voices. And I'm like, wow, I think this is dying. And I just got like goosebumps. I wish you could see him. Because it gave me like a bunch of peace in that moment about my mom. Cause like, I basically watched her die in hospice. And I know she was in a lot of pain. Even though she put on a really good face for it and never really, you know, complained about it. But I knew it. And I just remember thinking as this is happening, I was like that. I don't know. Gave me a bunch of peace. It felt good to know that perhaps death is like this. Right? And okay. And then I just looked up the term. But I Think it's called the Irish shot. Do you know what Irish shot is? So if you ever saw, like, an old school cartoon, and you know how it, like, at the end, it, like, kind of circles around and it goes to black. Yes, that's an Irish shot.

[A]

Okay.

[B]

And that's as the hum got louder and the pains going away. This Irish shot's happening. And then I was like, wow, this is definitely death. I was convinced, until darkness, black, no pain, hum stopped. And I literally said, I think I just died. And then I fell asleep. And then I woke up in horrible pain.

[A]

And you were right back there. Damn.

[B]

Yeah. Crazy, right? So I didn't see the bright light, you know, that you hear about.

[A]

Bounced right back.

[B]

I. I actually woke up in so much pain. And, like, I don't know if this. Like, there was no night and morning for me. It was just, like, time. Like, I don't know if this four hours later, six hours later, and 30 minutes later.

[A]

So do you think. And you might not even know, but do you think in this time that you were getting decent sleep or. Probably not because of all the pain?

[B]

Yeah, that's. That's a. That's a really good question.

[A]

Or like, did you just feel like it was all in one?

[B]

I don't think I was getting decent sleep. And people have asked me, did you sleep? And, like, no, but I did pass out.

[A]

Okay.

[B]

And I passed out from my heart rate beating too fast. But otherwise it was just like, I was daydreaming.

[A]

Yeah.

[B]

Thinking about being stuck like this forever. Oh. And after this thing, I woke up from this I don't know how many hours later, and I was just like. And I was, like, kind of convinced. I was like, I'm not sure I'll ever die. Like, I. Not saying, like, I'm immortality or anything, but I'm like, I don't think I'm gonna die, but I'm gonna be stuck like this for, like, the next 40 years. Which, like, freaked me. And that's when I realized there's much worse things than that.

[A]

Yeah.

[B]

Yeah. But going back to your. Your question, I don't. I don't think I. I don't think I slept well. Yeah. Well at all. I never felt. Breathed I could. I never felt good. Good. It's just a pain. The. The heart rate, the sweating, the discomfort. Oh, my God. You know what the worst thing was? And I had an itch.

[A]

An itch you just can't scratch.

[B]

That's, like, bad in itself when you can't reach it. But this Was like an itch where I'm like, oh my God, oh my God, I'm frozen. I can't tell anyone. And the edges, the itches were the only thing that diverted pain away and I could only focus.

[A]

It was like a distraction.

[B]

Yeah, yeah, yeah. That was different. Pains diverted from my other pain. It's like on my foot hurts. But then an itch would be like, you know, so what else is going to tell you before I get you? Okay. Do you have any other questions for me about the lock in?

[A]

So if you're comfortable talking about this aspect with your relationship, I guess the toll that it took on that.

[B]

Yeah, we can go into that a little bit.

[A]

Yeah, whatever you're comfortable sharing.

[B]

Yeah, yeah. And there's like a lot more to come and like perhaps we'll do like follow up. Yeah, yeah. So my Ellen, my now ex wife, was a party girl. We, you know, our first date was at like not like a hardcore rave, EDM type thing.

[A]

I mean, you were still young too.

[B]

Still young. So she wasn't like, wasn't like, she was a goody two shoes. It was like, whoa, you do drugs? Like, ah, that's crazy. But she did not like the drugs I did or like my favorite drugs, opiates, heroin, that stuff. And when I got diagnosed, she was so mad at me. She was like, you did this to yourself. And she was like, I'm getting out of here like this, like, we're done. And I was kind of like, you should get out here. Actually, I, like, not that I want you to, but, you know, I watched my mom died and that was, that's what fucked me up in life to begin with. I may have been already fucked up, but added to it. So it was like, you should, you should. Yeah, you should do you, you know. And long story short, within two weeks, she did leave. Within two weeks she was like, can I come back? And I was like, there's nothing to come back to. And it was, it was really hard for me because I was like, I want her back, but if I say come back, I know what that means for her. Again, I knew by I loved her. I still have love for her. I. Yes, I knew it would be like probably good for me if she came back, but I knew it, like fuck everything up if she did.

[A]

Yeah.

[B]

And it's kind of like there's nothing come back to. And she was like, I really want to. And I was like, okay, if you want to, but I kind of regret doing that. So going back to your like, what type of strain. I mean it, you know, it me up with how much I her up.

[A]

Yeah.

[B]

I think it was very, very hard on her. And we're getting into, like, stuff I can't talk about yet, kind of. Yeah. But I'm gonna, I'm gonna say something at the end, kind of plugging Blink that will.

[A]

Yes, that's a good idea.

[B]

Allude to.

[A]

Yeah.

[B]

And then I definitely want to talk to you again about it.

[A]

Okay. It's insane.

[B]

Mm.

[A]

But, like, during this time, you were still married. Okay, Got it. I'm going to leave it there then.

[B]

Still married.

[A]

Okay.

[B]

And I'll get to when. Yeah, we got divorced.

[A]

Okay. And then for more details, people need to tune in to Blink. Which one is Blink Releasing.

[B]

I meant to ask you before we started.

[A]

We're posting this February 2nd. Right.

[B]

Which is when. So today.

[A]

Okay.

[B]

So is out today.

[A]

Okay, that's perfect then.

[B]

And do you know what February 2nd is? I feel like you, you'll kind of get the humor and why I chose the release of Blink. Do you love this logo?

[A]

I, I, I do. Pretzel does.

[B]

Pretzel loves it. I was. What's the other one?

[A]

Meatball.

[B]

I thought that was a mix. Pretzel, Meatball. It's all, it's all the name pretzel loves. So February 2nd is Groundhog Day. Do you get the humor?

[A]

Yes, I get it.

[B]

Yep. I think it's fun.

[A]

I do, too.

[B]

I like a little dark humor.

[A]

I think that's great. I do, too.

[B]

So, yes. Releasing today, then.

[A]

Perfect. So people can go right on over.

[B]

Yes. That was the whole plan.

[A]

So now are we jumping to.

[B]

So, yes, we're married. Okay.

[A]

Okay.

[B]

I know where to go.

[A]

Okay, go ahead.

[B]

Survived six months of hospice.

[A]

Okay.

[B]

I didn't know this, but you can only be in hospice for six months. I climbed out of hospice because typically you go to hospice to die. I think if you look at, like, the average, you know, it's like three months. So. Yeah. You know, I don't know if you want to hear these details of what happens when you time out of hospice.

[A]

Yeah. Tell it.

[B]

It's just. It's fucking insane. So, you know, I'm just, like, not getting better, but not dying. Same state as discussed. And, you know, kind of like a big box truck shows up to the house, then I'll come the door, and I, you know, again, I just hear everything. So I hear my wife arguing with these men, and they're just like, look, it's their job. Or here, like, hospice is over. We're Here to pick up the equipment. She's like, well, what the are you going to do with them? Like where's it going to go? What about the oxygen? What about the. Like what. What are you talking about?

[A]

Yeah.

[B]

And they're like, man, we need the hospital bed. We need the hoyer lift. Like we need the stuff. Like we're. We're sorry. And so they, they took off the equipment.

[A]

Where did they put you?

[B]

Like on bed of pillows?

[A]

The nuh.

[B]

I had. Yeah, I had to be. I don't know if you know what a hoyer lift is, but it's like essentially like a hammock thing and they roll you into it and that's how you transfer somebody who's kind of paralyzed. And I have one of these and they need the hospital vet. They needed that. They needed Friday. But like they took the oxygen. I thought that was crazy. I don't think I was actively using the oxygen.

[A]

Okay.

[B]

No, I was because I was off the track. They took the oxygen. Crazy. So literally I got out of the bed, hammock, hoylift lowered to like a floor or bed of pillows and off they went and they took all the stuff. And I just remember hearing my wife storming around the house and. And also I have no doctor anymore because you got a special doctor for hospice. Yeah, I got no meds anymore because I need to find like new doctor.

[A]

And then technically, did your wife think that you'd have to be placed back in a hospital?

[B]

I mean, this is what I overheard her trying to navigate. And I'm thinking in my head, I'm like at this point just like put me in the garbage. This is way too much here.

[A]

That is not.

[B]

Cause she's like crying and hyperventilating. Rightfully so. But I'm like, I'm like, if I could be like, like on the loudspeaker. But hey, hello. Listen, like not a big fucking deal. Like I am tired. I'm done. Like put me in the trash or shoot me in the head. Yeah, like, right. This is crazy. So my mother in law at the time, God, I've really got a. Learn what to call people nowadays.

[A]

I think I feel like that's the best way to do it.

[B]

So, you know, luckily, thankfully, and I will attribute her, Cindy to saving. You know, one of the many people who saved my life. She worked for MGH and not as a doctor, but more in the. It's called people that do paperwork.

[A]

Hr. Is that what it is?

[B]

She wasn't hr, but she more administrative role, but fairly High up. I think she had, like, big lists of contacts and made a call, explained the situation. And, yeah, I overheard that call. I don't know the details she went through, but next thing I know, getting picked up by a big ambulance to take me to Mass General Hospital. I get brought in on stretcher to this office, which, ironically, is, like, very close to where I live now. And I go there all the time and see the people and, you know, I just, like, kind of see his face because I think I was propped up a little bit. Can't talk, can't blink, can't do anything. And I just remember him saying these words. He was, okay, look, like your. Your husband's case is, like, very complex. Like, I'm the head of a complex care here for MGH. You know, I take care of the 1% of the sickest. We can't really figure out. I am retiring, like, very soon. I'm. I'm going to take him under my care. We're going to get him situated and comfortable, but somebody's going to take over his care because I'll be here for like, a month or two. And I felt, like, great relief because, like, back to, like, MGH is good hospital, teams of people, and my wife can finally have a break, you know. Right. Well, not great, that. Yeah. He also said he's, you know, he's not dying. Obviously, he's not getting better either. So, like, I don't really know, but we're gonna get him comfortable. So I know. Now I'm placed in this floor called Philip's house. And that's where the ballers go, like, you know, if you're like David Ortiz and get shot, that's where he goes. You know, it's like the concierge medicine floor. It happened to be this doctor, Dr. Levinson's floor for the rare cases, too, and for about hard to say time, but I want to say two months. It's kind of like no changes. So they would do these large rounds every morning. It'd be like, Dr. Levinson and like, specialists from most areas of medicine and a couple of nurse practitioners. It was like, big team. And, you know, they've been doing this for a while, and they come into my room. It's like any. Any other day, you know, before. They've been doing this for a while, and all of a sudden I hear, hey, do you guys see that? You guys say that? And they're all like, oh, yeah, no, that's involuntary. And he's like, hey, I don't know if you can hear me, but if you can do that again. And I'm like. I'm like, oh, my God. It's the first time I've been acknowledged in like 10 months.

[A]

Right. Because so within that 10 months, no one was directly, like, talking to you, Only my.

[B]

My wife.

[A]

Yeah.

[B]

And a few family members have visited to say their goodbyes.

[A]

Okay.

[B]

It's really heavy, but, yeah, no one's. No one's, like, talking to me. So just like. And again, I'm looking at the ceiling.

[A]

And when he said this, did you mentally know what he was talking about?

[B]

No idea.

[A]

Okay.

[B]

And I'm like, please let me do this again. Yeah. And I'm like, so your one shot to escape this thing I didn't even know was possible. And I tense on my whole body and I'm like, I don't know what it moved, but, like, do anything. And I've been trying to move for quite some time. Obviously everything I could do. And as I'm saying to myself, shit, I can't do it. I hear, wow, he's actually doing it. And then I hear cross talk right away of how it's involuntary and it's impossible because, like, I just brain scan right here and there's no way. And I'm like, so even the brain.

[A]

Scan was basically showing that you were brain dead.

[B]

Yeah. So clarification on that. So actual brain. That being brain dead is actually death, which I didn't know at the time. Okay. But my brain scans were showing, like, slow theta and all indicators to be like, he's gone. So, like, brain dead, I guess, was being used in a derogatory sense to explain like an adjective. To be like, he's vegetative. He's.

[A]

Yeah.

[B]

Gone. I heard other phrases like, he's disconnected from all reality. Which I wish it was, in a way.

[A]

Yeah.

[B]

It was a gift and a curse, I think. Um, so he says, yeah, thankfully Dr. Levinson, who my mother in law, found who. And he is the man who definitely saved my life without a doubt. He goes, no, this is a change in medical status. I want our best person who specializes in nonverbal augmented speech therapy to come in here and teach him how to blink. Blink. And thank God he said that. I thought that was crazy. When I heard that, I was like, wow, there are people who teach people how to blink. Like, that's crazy.

[A]

Especially.

[B]

This lady, Jen comes in probably next day. Certainly didn't feel like moments later, but who knows? And she just comes in and she puts her hand on my chest and looks Over. And she's like, hey, Jake, I'm Jen. I'm here to teach you how to blink. And she said it in this, like. Like, way where it felt like. So she. She. I just, like, believe, like, she. It felt like she believed that I was there, and she was just like, hey, I'm here.

[A]

Felt like, normal.

[B]

Do my job.

[A]

Yeah.

[B]

You know? And. And I was like, wow. Like, someone just sent me an angel, you know? And within two weeks, she taught me how to do a slow blink. And that process is crazy because it's kind of like she's so good at her job. She was like. Like, I know you're so tired. I know you're so tired. I know. It's so hard. She's like, I want you to scrunch. Scrunch. Scrunch. Scrunch. His eyes. Close them. Close. Close. Now shoot him up. Shoot them up. Shoot them up. Good. I know it didn't feel like. It's working. I promise you, it's working. It's working. I know you're so tired, but we got to do it again. We're doing it again.

[A]

Every day.

[B]

This is every day. From what I know now, I have no idea how long she did this for, but from what I know now, these sessions typically go for one hour. That's what insurance pays for. So I think it was between 10 and 14 sessions, one hour until I had a slow blink.

[A]

Okay.

[B]

And it got to the point where she was like. She was like, that's so good. You're doing it. You're doing it. She's like, all right, now I want to ask you something. Like, do you know where you are? And I would do, like, a very slow blank. And she'd be like, do you know, like, who the president is? I would do a slow blank. Blink for me. If you're hot. I would do. I would do a slow blink. Blink for me if you're cold. I wouldn't blink. She brings in the team, Dr. Levinson, all the other dudes. I think he's in there. Kind of shows them. We did it again, maybe some different variation and still wasn't good enough for them. They wanted a fermius and no system. Some people were like this. You know, there are levels to consciousness. I guess so. Like, they wanted to be sure. I guess. So the next step was finding a yes. And that was sticking out my tongue. So I want to say that was about a week. And it was kind of like a sick dog, you know? And she's like, that's good. That's good. Then. Then they asked me some yes and no questions and the whole team's in the room. And then Jen is like, I want to introduce you to a letter board which is like color coded rows. They start with the vowels. Basically if I want the row A, I say on my tongue. And then she go down. Is it A? Is it B? Is A? C? Is A D, D? Say I went down. Then it's like we start over. So it's like this two is multi step system where I can spell it letters. She's explaining it to me and I'm like, yep, got it. Like let's get the show on the road. Like fully, fully understood how it worked, like right away and probably took me 10, 10 plus minutes. But first thing I spelt out is I can hear you. And they were all like, what the fuck? They were like, that's crazy. So then Dr. Levinson and the team are talking about next steps for me all in front of me. And he's like, so I want him to go to Spalding rehab, which at at the time was the number one rehabilitation hospital in the world, also in Boston. And he's like, they're the best in non verbal communication. We got to know what was in this guy's head. And then I hear other people saying, well, he won't be accepted because he cannot participate in the three hours of mandatory therapy a day. PT O. T and speech. He can only do speech. So I hear this and I'm freaking out. And I know about spaulting because I had been transferred there several times on my road downhill. They are the best. And I could never make it. I was too sick. I only lasted like 10 hours there at a time. And I was like, yeah, this will be great. So they're saying that I can't make it there or I won't qualify or whatever. And I start freaking out to the point my heart machine starts going off. And Jen is like, calm down honey, I got the letter board. Do you want to say something? And I spelt out I can do three hours. And that was the moment that changed everything. Because they were like, wow. Not only is he like somewhat with it, he's listening to us, right? And next thing I know is that Spalding like felt really fast.

[A]

And at this point pain was the same.

[B]

But I'm like motivated. Yeah, very pumped.

[A]

And then at this point, did they have any idea or answers of why this terminal brain disease didn't kill you?

[B]

No. And at this point in my head I'm like, I'm probably still terminal.

[A]

Okay, Right. Yeah. Right. Because no, you didn't get any answers yet. They were just trying to rehabilitate you to get you to a point where.

[B]

You can kind of communicate non verbally communicate.

[A]

Okay.

[B]

Or like whatever. Right.

[A]

Okay. So you still, at this point didn't think that there was like a survival still?

[B]

I only dreamed that I'd be doing something like this one day. Trust me, I thought about it. Yeah. So all I know is I'm like, well, I can't get any worse than it was. But I caution myself to. To say that because every time I said that it got worse. But I was like, yes, like, pump stepped in the right direction. I get spalding very intensive rehab. I was exhausted. But they quickly, you know, the speech lady quickly figured out how cognitively intact I was and she was kind of freaked out. I know her now from like talking to her. She was like. It was really heavy for me.

[A]

Yeah.

[B]

Like, she was like, you know, you get patients that just like have, you know, aren't fully with it and don't fully understand. And she was like. And once we started, she taught me this new speech board called the Megabyte, which is like two steps, is basically. It's like letterboard, but much faster. I can now talk paragraph form, like very fast with her. And she was shocked at how I was able to do it. She was like, honestly, like, we never use this because, like, no one really has the cognition to use it. And like, I had to learn it really well to keep up with you. And we're having heavy nonverbal communication. So I'm talking to her about like, she was like my therapist in like seven different ways. Like, not only speech, but I'm like. And yeah, just laying out these like, questions for her that, you know, I don't think she was prepared to answer. She was like, we gotta get neuropsychologists in here. Which they did. But I'm also doing PT and ot and you know, I was there for three months.

[A]

And how was your body responding? Like, were you. Did you start to be able to do more things than the tongue in the eyes?

[B]

Yeah. So it was slow, but from what I hear from the state I was in, it was actually really fast. Okay. And a lot of what they did was really painful. They started trying to reverse my contractures and they do that by system called serial, serial casting. So they'll get like, for, you know, my. My ankles that were kind of like ballerina angles. They would get like three physical therapists and A foot plate. They would stretch it like crazy, which would hurt. And they would like jam it in this foot plate and hold it as someone lays a cast and lock her there for two weeks and then do it again and again and again and again. And every time you just get like a little more and a little more. Well, that's a hope. It's also like quite dangerous because you can get these really bad pressure wounds which can lead to like amputation. Yeah, I just remember I couldn't talk, but I could scream and cry at this point. And it was bad. Yeah, everything was, was bad. But I was in the headspace of like, this is the best rehab in the world and I'm gonna get every bit I can out of it. Like I'm going to get better. And so there for three months. To answer your oppression, I think I, you know, I couldn't get out of bed or anything, but like they would start to like hold me in seating and then like let go and see how long I could last like sitting up before like falling over or something. I hope these mics aren't picking up my stomach around.

[A]

No, I, I don't think so. It shouldn't. If it does, it just.

[B]

Be funny. So. Yeah. So like I, I did make progress, but it felt. Felt minimal aside from non verbal.

[A]

And were they doing research about this brain disease during.

[B]

I didn't know.

[A]

Okay.

[B]

If they were. I think they were. Yeah. But yeah, I didn't know at the time.

[A]

You didn't know.

[B]

Then I get moved to a different hospital, which I knew was going to happen. And I stayed at Western Mass State Hospital for 15 months. Went there because I had a very. Speech therapist was recommended. And during those 15 months, that's when I became unparalyzed, started moving like individual fingers in the slightest, raising my arm to this point and making baby sounds which then led to vowels and sound blends. I had to relearn everything and there are some really funny videos I put on like social media of me my first times relearning how to feed myself, making a mess. Just. It's really, really fun. I'll show you. After this moved up. Okay, I'm kind of gonna go fast with the rest and then we can do so. I lived in the hospitals for about four years, a long time. Spalding, Western Mass. Dr. Levinson, this guy who noticed me, who I attribute my survival and kind of where I am today too, who was supposed to retire in three months after taking me on. I like to think he never retired because my case I do not know if that's factually true. So Dr. Levinson hit me up. I want to know. But 15 months after being at Western Mass, that's why I started my YouTube channel. Ashley wasn't to like show the world. It was to show my doctors on the complex care team my progress. And there were such big files. I created like private YouTube links to send to them. And they were like following me and seeing this and they were like, wow. Like. So he called me one day. I can like verbally talk to him. I have a very rough voice at this point. I should I mimic what it sounds like? Sure. Some people think that's offensive, but no.

[A]

I mean, it's your life. Yeah.

[B]

So you know, like this. It was like kind of like my first converse with Dr. Levinson and he basically was like, look, we never really thought, you know, you would get to this point and you've outgrown this hospital. And I'm bringing back to MGH and we're going to figure out next steps. Like you're doing amazing and you're leaving like in the morning. So like two hour ambulance ride back to mgh. So I go back to Philip's house and it was crazy. The same people that took care of me, like nurses that noticed like were there for that minor wrist movement and the blinks. I went back like 16 months later and like I can now like kind of talk and show personality and it was, it was like trippy for me. It was trippy for them. I was like, although I was in so much pain still, I was having a blast. I really was. And just I remember like knowing that this was like bougie as floor at this point. I didn't know back then, but my neighbor was actually David Ortiz when he got shot, you know, and it was just crazy.

[A]

Yeah.

[B]

So okay. From there I went to another long term like kind of nursing home type place. But I got to do outpatient therapy while I live there at Spalding until I was ready to do my second inpatient stay. Because they were like, it's rare to get people in there second time. We should maximize that for like when you're ready to walk. So we continued my serocasting. There's like a ton of stuff in there. Obviously went through like the whole Covid world in there.

[A]

Yeah.

[B]

But fast forwarding a bunch of that. I moved back to my area of Boston December of 2020 after having this kind of big surgery on my ankles on 24 hour care, you know, said round the clock, not nurses, but like personal care attendants, you know, because I couldn't do anything on my own. And then I went back impatient from my new kind of home. Spalding, say, April of 21. Kind of got a little head start on walking. My voice kept getting better and better. Everything keeps getting better. Currently working on, and I hope for, you know, Groundhog, say, launch of Blink. I plan on walking with Kane onto stage and make my little speech. We'll see if I actually make it. But yeah, yeah, that's my whole thing. And then I'll just say a little bit about Blink.

[A]

Okay.

[B]

If you don't mind. And I'll let you ask me whatever you want. So I wrote this down on the plane and see if I remember my vague bullet points. But, you know, there have been a lot of individuals in my life who have tried to silence me from telling my story. And I'm like, finally in a place and I'm ready to tell it. My heroin addiction gave me this disease. Likely gave me six months to live. But now there is new kind of evidence that something else or someone else may have caused us. I am a little scared to be putting this all out there. I'm letting everything out. I'm saying it all. And yeah, coming today, February 2nd, Groundhouse, I am launching Blink Tell all podcast. Not interview based, but this is the craziest story that has never been told before. And I'm putting it out in episode format where you have interviews from doctors, lawyers, we have court records, we have all this stuff. And this has been three years in the making. It's finally coming out. And also I've been waiting to tell this before I could blink. And the reason for the name, it all happened kind of in a blink of an eye. And I guess this should be called Wrist, but Blink sounds better. I'll start up with the Blink.

[A]

Yeah, it's amazing. Three years. Wow. So each episode. So are there episodes where you're telling your story and then there's episodes where there's the doctors and lawyers kind of being interviewed and talking or how.

[B]

Yeah. So it will all be mixed.

[A]

Got it.

[B]

It's curated, put together in a nice way.

[A]

Kind of like a documentary, would you say?

[B]

Yeah. I mean, this is gonna air exactly like a HBO series.

[A]

Got it. Okay.

[B]

Would be episodic. And it will. Awesome. And it will be, you know, Corinne from Two Girls, One ghost friend of mine, she will be narrating, doing the voiceover also. She's one who interviewed me. And then it's me with mostly storytelling and then interviews from everyone. Involved will be spliced soon.

[A]

Is your wife in it or ex wife in it too?

[B]

That's the hope.

[A]

Okay. Yeah. It would be interesting to hear her perspective for sure.

[B]

Well, it's. We've been investigating a lot and there will. They're obviously. I really hope she will.

[A]

Yeah.

[B]

Come on. I mean this is. We've reached out, you know, and.

[A]

And I think it's important too for people to hear that perspective. You know, somebody on the flip side going through that as well.

[B]

And. And I just, you know, I don't know if this will make it in or not. But like regardless what went down and there was like crazy you guys will all hear about. I do still have love for her. And regardless, want to hear your side. And you know, I got no time for resentment or anger in my new life whatsoever.

[A]

No, definitely not.

[B]

Yeah.

[A]

Okay. So should I ask my couple of questions?

[B]

Sure.

[A]

Okay. So my one question is the obvious. Do they have any answers yet at all?

[B]

Yeah.

[A]

Or understanding of how you have gotten to the point that you're at now?

[B]

No. So I am the only documented case of survival in the world from stage four, acute toxic progressive local encephalopathy. They have no idea why I'm alive. If people look at my brain scan, I should not be able to coordinate a single movement even now. Even now, let alone make a sound. They don't know why for me. They don't know why. Also something I didn't mention. I am no longer terminal. I.

[A]

And how did they make that determination?

[B]

So I didn't build up the courage for a long time to ask that.

[A]

Okay.

[B]

I asked them non verbally, but I was feeling kind of down one day or something and I was like, therapists I have a lot of love for too. I was just like, I felt badassing her. She almost started crying and she was like, no, honey, no one ever told you, like, you beat this, you're just like relearning everything like a baby. And I was like, oh. Because I was like thinking how horrible that would be if I only had three months left or something.

[A]

Right. Like you made all this progress, just. Yeah.

[B]

You know, I mean, I probably still would have gone for it anyway because what's the alternative? But yeah. No, no real answers. One other thing I'll mention though, just on that something that came out in 2019, which has been getting more buzz now, is covert consciousness. Have you ever heard that term?

[A]

I have, but remind me of.

[B]

Yeah. So there's now evidence to show that 20 to 30% of people that are quote unquote, coma, vegetative, brain dead, whatever, are likely experiencing what I thought I couldn't be the only one having locked in talking to themselves. So there is a lot of research going into this and some of my doctors are, you know, I would say the world leaders in and research for this. But yeah, I've, I've gotten no reasons from medical community whatsoever why I am where, where I am. So any medical people, it's just crazy. And I do also wonder why more people aren't actively researching my brain.

[A]

That too. Yeah. And maybe that'll change.

[B]

Maybe they are and they tell me. Okay, but I don't know.

[A]

Right. So are you still in any form of physical therapy?

[B]

Oh, yeah.

[A]

Okay.

[B]

So yeah, I'm in pt, OT choice week. I've graduated speech. My voice is, I would say, I would say not the same as it used to be. But there are definite like signs of my old voice in there. I mean, I'm, I'm the same sarcastic sense of humor, like.

[A]

Right.

[B]

Speech pattern guy. Just the voices. But yeah, PT and ot. I mean, as I said, I'm actively working in, in, in physical therapy, how to walk with no device, which I can do. But I have so much fear that I become shaky. I'm so scared falling and friends close to me at a friend the other week is like, what, like you're not scared of anything? And I'm like, yeah, not really. But until I'm about to fall.

[A]

Yeah.

[B]

Or have to do a task like getting on and off a treadmill or stopping it. It's like. But yes, I'm still in.

[A]

But you'll build yourself up past that.

[B]

Yeah.

[A]

You know, it's still, I mean. So when did you get out of the last hospital you were in or rehab center?

[B]

Inpatient.

[A]

Yeah. Was it 2020 or after that?

[B]

2021.

[A]

Okay.

[B]

I want to say it was April or May.

[A]

Got it. Okay.

[B]

I only went in again for. So I got out of my 40 year hospital. Long ride. December 1st, 2021.

[A]

Okay.

[B]

I went back in Spalding for three weeks. Inpatient.

[A]

Okay.

[B]

In April 21st. But yeah, and I've been out and all outpatient therapy. I also have like a big routine. It's been, it's been hard balancing work, life, podcast life. I also have a tech startup called Ahoy. We're kind of like Google Maps and Ways in Yelp for personalized accessibility. So, you know, take mystery out of accessibility. But I also have like all this therapy and like I try and go to the gym and I Do this. And then I have like homework from therapy. So balancing it all, especially in the last. Well, it's been like nine months of just going hard.

[A]

Non stop, non stop busy guy.

[B]

Because I got, I like it though. I don't it.

[A]

Right. It's like, it's, it's great. Your life literally, it's a. Mostly it came to a halt and then you were able to literally start fresh.

[B]

I'm making up for the last time.

[A]

Exactly, exactly. So how long have you been using the walker now?

[B]

So there are levels to it.

[A]

Okay.

[B]

But I, I mean, I would say I started being trained on the walker in April 21st. Impatient, but I could only do it with like two therapists on my side. Then 20 end of 21, 2022, definitely like no therapist on me could walk for a couple football lengths in turn. I still have trouble like opening heavy doors with this thing. Then towards like mid 2022, I believe I started like walking with it only in my apartment, home alone, which took a bunch of, you know, a bunch of work. And now I would say for the last year I've been like, you know, going to like getting in and out of an Uber by myself with this thing.

[A]

Yeah, that's great. That's amazing.

[B]

Yeah. Yeah.

[A]

And the next step would be a cane, hopefully, right?

[B]

Yeah. Which seems so like mind boggling and far in the future and I don't even know if I'll get there. But that was the same thing I was saying with this.

[A]

You don't know if you'll get there.

[B]

I know, I, I.

[A]

Come on.

[B]

I know that sounds crazy.

[A]

I mean, think about where you were.

[B]

I know, I know, I know.

[A]

It's wild.

[B]

It's wild. You're right. When you say that out loud, it's like, what are you talking about? Yeah.

[A]

I mean, everything takes time.

[B]

I think I'm like mentally stuck of fear. I wish I didn't have fear, which is surprising.

[A]

Like, I feel like you went through. I know the worst of it.

[B]

Part of it, I think is that I used to say this to my therapist where I thought if I hit my head one more time, it's like lights out. But I have like fallen and hit my head. I've only fallen from, I've fallen from sitting quite a few times. But you're probably like, how the hell do you do that? But I was on a train that had an emergency stop. I was like ejected from my scooter.

[A]

Oh my God.

[B]

Hit my head. I mean, the hardest I think I've ever hit my head in my life. And you'll find the story funny. I went to the hospital. I spoke on a Department of Transportation panel, and we went out for, like, beer after. And I was, like, feeling good. I was excited. I was like, I'm taking over. But I was like, you know what? I'm gonna, like, roll around the city, hop on the green line. I'm wearing my DOT badge. I get ejected on mbta, part of dot, and they're like, sir, oh my God, are you okay? Like, do you need the hospital? I'm like, my head. So I get to the hospital and I'm like, they're like, so tell us what happened? And I'm like, you know, they. They know my record and they get me writing in. I'm like, well, I was speaking on this DOT panel, and I got rejected from the train at Government center emergency stop. And they're like, that's really ironic. That's craziest thing I've heard.

[A]

Yeah.

[B]

And they did, like an mri. And you know what they told me? I actually left the hospital before I saw the results. I'm like, you guys will call me if something's wrong. And they were like, yeah, your brain actually looks better than before.

[A]

Maybe it just needs to get hit a couple more times.

[B]

Right. Wow.

[A]

Oh, my gosh. So it's just like a total. I mean, obviously, but it's totally unheard of. I feel like every aspect of your journey, it's mind boggling. Do you think that you have any fears of not progressing?

[B]

I do. Yeah. And I know I've come, like, so far. And like, honestly, like, I have a. I have a pretty good life. I do. Like, I got really good friends from. From all walks of life now. Some best friends I've made since I came out. And, like, I'm getting to do what I want, which is like. Like, honestly, just, like, doing cool stuff. And everything's, like, so much sweeter now in a ways where.

[A]

Yeah.

[B]

You know, like, holding this water, like, I couldn't do them. Like, drinking. It's another story. Which is why, you know, you need help. No.

[A]

Okay.

[B]

But I, you know, I'll drink after this. But. But, like. But everything's, like, so much sweeter now. Like, everything in life is way different than my. I've said this before too. Like, I used to live this, like, fast lifestyle, had a lot of money, could, like, do whatever I wanted to do whenever I wanted to do it, but I wasn't really happy.

[A]

Right?

[B]

Like, I could, like, go fly to Miami for a weekend, like, go to this, like, club and I'm at the club and then like, what are we doing after the club? Thinking about, like, what are we doing tomorrow? I always think about the next and the next and the next enough that that's like, would make me even happy. And now it's more about, like, what actually matters in life and like, you know, so going back to your quest. But, but, but to my point, it's weird that I could do things like that now. I. Struggles and limitations and I'm happier now in this life than I am in that life.

[A]

Yeah.

[B]

But going back to, like, fear of progressing. I do. And I get really down on myself. I mean, I've been down on myself for like the last couple weeks. Like, I was in Vegas for cs beginning of the month. It's like tech conference. I mean, it's amazing I'm able to do that.

[A]

Yeah.

[B]

But I feel like cancel bunch of therapy appointments, like, in advance. They're not upset or anything. Um, and then, like, I get back and I had to do this or like, I had to go to LA or something, and then, then I had like a cold one day and didn't feel good and I had to miss that one. And now I'm here and, you know, I'm just like, yeah. And I'm like. And it's fine. But going back to, like, fear of like. Yeah, like I am, you know, if I was done progressing today and like, someone told me that, like, you're, you're just not going to be able to, like, for whatever medical reason or whatever. I guess I've been through worse. I mean, I would survive and adapt, but, like, I really want to, you know, defy odds, defile odds, Be able to. Yeah. You know.

[A]

Right. Well, I have faith and confidence in you.

[B]

Yeah. Well, I appreciate it.

[A]

I just think that what tends to happen and the reason we get so hard on ourselves is because as a human being, it's like, I think sometimes even if we're very present in the moment, as a human, I feel like it's natural to want more, more, more. Nothing's fast enough. So I think that it gets to a point where you start to get frustrated because you're like, well, if I made it this far, like, let's go, let's go. You know, and that's not a bad thing. I think that's. It's good to have that motivation. But like you said, I think it is important when you get in those moments where you feel like you're being hard on yourself. You have to Kind of look back and see how far you've come and be like, all right, even if it takes another two, three years, like, who cares? Like, I've made it this far, you know? And you being able to share what you've been through is already, I mean, like you said, you're the only person. Person. Like, hello. You know what I mean? That's incredible.

[B]

On its own, I keep thinking, why. Why me? You know? You know, I saw a lot of people in therapy giving their all too. Like, there are some people who just give up for sure. Too painful. Some people giving it their all and not making progress and then come up to me when I could speak and be like, how do you recover so well? I'm like, I don't know.

[A]

Right.

[B]

I know you have to put in the effort. I know that you have to do your homework, you have to show up. But like, if that's not working, like, I. I don't have an answer on like why.

[A]

Yeah.

[B]

Anyway. But yes, I agree with all that. And also, yeah, part of the human condition, we always want more.

[A]

That's true.

[B]

And like, I guess it's like you said, not a bad thing.

[A]

Right. It's a. Like you said before too. In. In a way, it's a blessing and a curse.

[B]

I keep relating it in some ways when I think in my own head to like addiction. Right. Because like in that world, no matter what the vice is, you always want more of that. And arguably that's probably why I recovered so well.

[A]

And I think a lot of things are rooted to a sense of addiction for sure.

[B]

Yeah. I think I got addicted to my therapy and I was on mission and I was like. And helped.

[A]

Right. You couldn't. And in your life you can reflect on how the addiction. Exactly. On the more negative addictions and healthy addictions that you've had. So.

[B]

Yeah.

[A]

But I think this is amazing. And so. Okay, wait, back. My last thing was you said you have written a book, but it's not published. Do you think you're going to publish it?

[B]

Yeah. So. Okay. So I wrote. Yeah, I'm going to give you the long.

[A]

Okay.

[B]

I'm sorry.

[A]

No, you're okay.

[B]

I do that. I just never want to. I think I was misunderstood for so long, like non. Verbally and verbally. Verbally in this baby talk that I never want to be misunderstood. Which is why I over explained. I just had to explain over explain that. So you get it? Yeah. So I started writing immediately by eye, blank letter by letter. And it was like hard to do in Hospitals, like nurses would come in and I get like three words. And then a new nurse would come in and I get the next two words just about my experiences. And then as I got better and better, you know, I used to like type with this knuckle on iPad, then voice control. I started really formatting this stuff. And then an agency out in California hit me up and they were like, you should like write a book. And I'm like, yeah, I've been doing that. And then I got intro to like the publishing world where like, you know, if you want to make how you make like a real proposal to like go to the random houses and the penguins and bay players. And it really, I don't know, I had, I think there were too many cooks in the kitchen. And I valued everyone's advice as better than. Well, I mean, I don't really know what it takes, but I have a crazy story.

[A]

Yeah.

[B]

But all these people are giving me input, like, don't say this, do say that. And like, it's just writing became not as fun for me. And then I do have a proposal though.

[A]

I've always thought this is just my opinion. Anything you do, I think the best way to do it is just do it because you want to do it and do it the way that you want to do it even. Right. Even if it doesn't mean that. Like, I feel like everybody can give you an opinion. And you know, especially I, I think too, if, I mean this even goes for. I can compare it in the sense of this show. If I were to sign with a company, they might have more roles. But like, I don't want that. Like, people ask me all the time, is there anything that's off limits? And you know, YouTube is very sensitive. There's a lot of things you can't say and it gets limited or demonetized. Yeah, like everything. But I was like, I don't care. Like, that's not what this show is about. So it, you know, going back to you writing a book. Screw what people think and what you should and should not put in there. I think it should be as raw as possible.

[B]

So this goes back to why I'm doing blank.

[A]

Yeah, because you have more of that.

[B]

Yeah, and I guess I always did. But I valued these, you know, high end Hollywood type, you know, and they're probably not wrong. It was just like the situation. And also I honestly think they were too early to the party. I mean, this was like, I may have still been in the hospital.

[A]

Okay.

[B]

And the story is not over.

[A]

Right. Not at all.

[B]

Not at all. And anyway, I still write. I still have the proposal. I've changed it, made a new version, but we pivoted. I pivoted to podcasts. And I mean, frankly, what I really want out of life, I think, and you know, professional life and life with my, my story, I always wanted. I think I'm like, positioned well to be a really good public motivational speaker because of like, what I went through and the shift I kind of had with how I view life and how I live life. And I really want to help people have that shift without going through something traumatic, certainly as traumatic as I went through. I mean, I know there's tons of trauma out there, but like, there should be a way, and like I was a kid too, that if I was at a high school assembly and some, you know, NBA player was. Did crack or something and then like was like. And here's right, it doesn't, it doesn't.

[A]

Sink in at that age.

[B]

It wouldn't make me not do drugs.

[A]

Yeah.

[B]

So like, I don't know, but I feel like there's probably a way where. And like that's what I want to do. Like that's the end goal.

[A]

Right.

[B]

And I thought book is a way to do that. But now it's like, I think this podcast and the way we've done it.

[A]

Right. And you never know, things could, you know, everything.

[B]

I think it will become a movie.

[A]

I do too. I really, really feel that way. For sure.

[B]

Yeah.

[A]

And I think too, if you ever decide in your free time, like, oh, I want to write more or I. Or I would want to do this, then do it.

[B]

So the, the other thing is a lot of people are like, why don't you just like self publish?

[A]

Mm.

[B]

And I mean, there are people of self published who make a bestseller. I feel like it's more rare and I, I felt like my story deserves to be in a global audience, which now at this point, I think it is regardless. So maybe I will self publish. Yeah. But I think there's a lot to come with blink, I think. I don't know, I'd be surprised if HBO or Netflix don't like ever reach out. I mean, I had a tick tock that went like crazy viral and like I didn't even count. But I think Netflix was probably added like 200 plus times. Somebody there knows the story, right?

[A]

A little bit, yeah. It's just the beginning.

[B]

Craziest.

[A]

It is.

[B]

Maybe not ever. I know. I know you do. We're all insane. You.

[A]

No, this is. It's pretty insane.

[B]

It's up there.

[A]

It's up there for sure. And I swear to you, like, sitting here listening. You're such a good storyteller. Like, I was so invested. It felt like I was seeing it and watching a movie. And not everybody can captivate you with their storytelling abilities.

[B]

Yeah.

[A]

You know.

[B]

Yeah. Yeah.

[A]

But it was amazing.

[B]

I'm new to podcast, but not new did. Telling my story.

[A]

And that's all it is, though.

[B]

New Bets.

[A]

This is all. I tell people all the time. Like, this is all just props, you know?

[B]

Tavor, what are you doing? Groundhog say same thing over. Want to come to the launch party?

[A]

Yeah. Why not?

[B]

Come to Boston. You never been there.

[A]

That's true. I should.

[B]

Let me know what you need.

[A]

Okay. That would be cool.

[B]

We rented out the oldest bar in Boston. It was created in 1842.

[A]

Okay. Wow.

[B]

Bell in hand.

[A]

Wow. And it's not that far because I don't like airplanes.

[B]

I used to hate them. Fear of flying.

[A]

That's no longer the fear. No longer playing there. Yeah. Not bad anymore. We faced way worse. But, yeah, this was amazing. Seriously. And thank you so much for coming on here.

[B]

Yeah.

[A]

You did incredible.

[B]

Thanks for.

[A]

Of course, of course.