We're All Insane - Trapped in a Coma: Fully Aware but Unable to Move

Episode Date: February 3, 2025

#podcast #coma #neardeathexperience #survival Imagine being trapped in your own body—unable to move, speak, or respond—while everyone around you believes you're gone. This is the terrifying reality one man faced after being diagnosed with a terminal brain disease that left him in a coma. Doctors thought he was brain dead, but inside, he was fully conscious, aware of every conversation, every tear, and every moment slipping away. Jake's Links: Personal socials: • YouTubehttps://www.youtube.com/@miraclman31 • Instagramhttps://www.instagram.com/miraclman31/ • TikTokhttps://www.tiktok.com/@miraclman31 • Facebookhttps://www.facebook.com/jacob.haendel.94?mibextid=wwXIfr&rdid=BkEx13Vt9kk5XuBi&share_url=https%3A%2F%2Fwww.facebook.com%2Fshare%2F1FfuUP7LHF%2F%3Fmibextid%3DwwXIfrBlink • YouTube- https://www.youtube.com/@blinkthepodcast • Instagram- https://www.instagram.com/blinkthepodcast/?igsh=MW11dGRoeXhjamozbw%3D%3D&utm_source=qr • TikTok- https://www.tiktok.com/@blinkthepodcast?_t=ZT-8tELuCcmL86&_r=1 •Facebook- https://www.facebook.com/people/Blinkthepodcast/61571822866998/?mibextid=wwXIfr&rdid=1HhRJ2XWh3QlPyND&share_url=https%3A%2F%2Fwww.facebook.com%2Fshare%2F19kFuLWJB2%2F%3Fmibextid%3DwwXIfr • Spotifyhttps://open.spotify.com/episode/1f8xqkipaynS2uqYJp1lUM?si=M27r_nWaT8Kwwp8JhwGzuw&nd=1&dlsi=6d632f5d7d014e90 • Apple Podcastshttps://podcasts.apple.com/us/podcast/blink-jake-haendels-story/id1779813806 If you have a unique story you'd like to share on the podcast, please fill out this form: https://forms.gle/ZiHgdoK4PLRAddiB9 or send an email to [e-mail] Business Inquiries please contact: [e-mail] Topics: Coma Survival, Locked-In Syndrome, Drug Prevention, Medical Miracle, Brain Trauma, Disease Learn more about your ad choices. Visit megaphone.fm/adchoices

Hey guys, it's me Devorah. I just dropped an all new bonus episode inside my new subscription channel, We're All Insane Plus. This week's bonus episode is called My Brain was slipping into my spine. Listen now by subscribing to We're All Insane Plus inside your Spotify or Apple Podcasts app or go to we're all insane.com. So I was born outside of Boston. Parents got divorced at a young age. I wasn't too happy. I wasn't too happy. about that. And then when I was nine years old, my mom was diagnosed with breast cancer, which my testifies 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. I 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 of 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 oxies you guys do? I'm like, would that like help my mouth pain? I'm probably, I sound like Chipmunk, look like Chinmunk. 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, a foot callous thing. Uh-huh. And CBS, they would just, like, grind a little of the pill on tinfoil and smoke it with, like, a hollered out big pen. Okay. 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 of sleep I've had since I was like 12.

And I was like, wow, I like this. And were you living with your dad? I was living with my mom. My dad had moved away. I believe he was either living in Maine or Texas. Okay, got it. So I'm living with my sick mother who, you know, she always put on a very good face.

And everything I went through, which I'll get to, I look back and I'm like, well, she was, you know, champion. Dealing with like two kids, step kids and going through chemo and just, 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 seemed to be like a Friday night thing. And also one pill, anoxyated 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 and smoking weed or doing oxy or like whatever, it was never like really to have 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 oxies got kind of banned. um or tamper proof and i went to um heroin basically so yeah it's just like progressed and next

i 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 um 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 in 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 shit 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.

and, you know, being a drug dealer and everything and the connections I had, my, you know, my hookups, my plugs or whatever you're going to call them, were always like, you know, if you want to make the real money, you like, got to get a real job or else you're going to go to jail. So, you know, I became like a head chef, culinary school trained. I always, so I had like two lives. Right. You know, they intersected for sure, but I was like, it wasn't like I was just answering my three phones all day, like sitting under a 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 obias, you don't get high like that. You just are maintaining. Like you can like not at, band of the night.

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 dying that's what i'm dying and that's why it's so hard to get cleaned because like people go 48 hours and they're through torture and then they're like i can't take it anymore right they're right back to it so um 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 I had all the people like, no one really know. 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 really, I just know it started with my voice being a little off. Okay. And it was like higher pitched. It was just, it's weird.

And I know, like, at work and some people I knew would be like, what's up with your voice? I'm like, I don't know, you know. And, but in the back of my head, I'm like, oh, 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 seven of the morning. I'm going to work.

Was it high? Sure. But I was high, like, every time I woke up. That was normal. And she was like, you should, like, go to the hospital. I'm like, yeah, like I'm fine. Did you feel okay? Like normal?

I did at that point. Just my voice. I did, like, I did sound drunk. So like, I'll give her that for sure. 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.

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 to, like, hold the walls to make sure. Like, I still walk. And then my driving, I noticed that. That was the next thing I noticed. And it all happened fairly back to back, would you say? I would say within two weeks. Okay. Yeah.

And it was never like something like the voice got better and then it was a balance. It was just like progressing. 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 talk about? But it also seemed 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.

Yeah. also like you know you're typical guy that's like I don't want to go to the ER yeah I can handle I'm all good yeah 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 um I just noticed I started swirving. And it was like the way I described that swerve is like if an 18 wheeler is coming past you, like, and that wind like hits your car in 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, some get me. And my thought is like, okay, better get high before you go. So I would like duck on the bathroom.

I'd smoke it off. And I couldn't even undo like a 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, five grams, which was, like, $1,000 worth on the floor. And I was like, geez.

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 see. some we walk in the air, 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 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. and she was like, you cannot discharge him. This is not my husband.

Takes out my phone and plays my voicemail. And it's like my voice that have been talking to these ER staff, totally different than my voice. 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 would be like every other time, you know, you go there, you like spend six hours, you go and some meds and you go by your life.

I never left. Like life was never the same effort of this. So they give me this, I'm right. 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 and white coats in the room, like a nurse. And one guy's sitting on my bed, hand on my knee.

And like, I immediately know, I'm like, oh, this isn't good. And they're just like, 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? And they're like, like, probably six months. But like, it's progressive and it's going to get worse really fast.

And I'm like, fuck. 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 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 the heroin since you

smoke that, like, on a daily basis. And I'm kind of like, I'm 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. And 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 any trouble. We can test it and can look further. And 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, if six months live, it's going to be worse. I'm dying. She's mad. This woman I love. Not worth arguing. Uh, whatever like um so did you guys ever bring it in no she wouldn't bring it in and i didn't uh harp on it too much 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 potentially okay i mean

i don't know but you can there but the doctors told you at this time you could only get this terminal brain disease from inhaling inhalation of a toxin but like i'm also like okay i like smoked cigarettes at the time i smoked a variety of things uh like it could have been any like adjacent to heroin and then also i'm a head executive chef i'm breathing in like sometimes they shut the hood fans off on us And then end of the night, I'm scrubbing down with these weird chemicals. I mean, I'm breathing in, 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 of view and like, oh, fuck, I went so wrong.

And like all these hopes and dreams I had. I'm 27, you know, at the time. And I'm like, Jesus. So I'm like, yeah, I think looking back, like, we really should have figured out what 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. 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 right 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 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 shit to think about right now okay so the disease is called acute toxic progressive local encephalopathy and they wrote it on a whiteboard and they explained each word to me and they were like acute means that's happening right now toxic

in this case toxic toxin you inhaled progressive this will only get worse and luco encephalopathy is disease of the white matter

of your brain so like apparently them or I just showed massive damage in this and I guess 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 weeks, you're not going to be able to walk

with support of people. Within the next 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 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 next level. Yeah. And then they were like, yeah, and like stage four, month, month three and four, you're going to be bedbound. You're going to lose ability to eat, swallow talk, you'll end up on a trache, feeding tube until you slip into a coma and likely die. And I'm like, so there's no chance of getting better. And they're like, no. And I'm like, so coma and death. And they're like, well, you know, you could make it.

No one else has, but you're not going to get better. So I'm like, oh, geez. 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 eight or 12 hours. So like real quick on that, I immediately was like, I'm fucked. Called connect to 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, it doesn't matter. I'm dead anyway. got high in my hospital bed just i didn't give shit nurse walked in she's oh my god what are you doing

you know hey i'm jeremy schwartz from american criminal on this season robbery gone wrong or cold-blooded murder either way boston will never be the same listen to american criminal the murder of carol stewart wherever you get your podcasts or to get early ad free access subscribe in apple podcasts, Spotify or at Americancriminal.com. Living my last days. Yeah. And the doctors came in. They're like, maybe we're going to 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 going to 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 going to 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 occurred. 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 going to 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 I get it. It's like to prolong your abilities, like, 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 why I've 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'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? 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 great. No, yeah. No, I can keep going. So anyway, I'm like, you know, I kept saying to myself, well, can't get it worse, you know. And sure enough, the next day, something else would happen that was felt worse.

Right. And then the next thing to go was kind of the ability to go to go to the bathroom, the ability to, you know, I could talk, but I was talking like, are you okay? I'm like, hi. And like, that's how my voice started just until it was nothing. Gone. And how long? until it got to that point without being able to use the bathroom and losing your voice. So I'm diagnosed end of May. Uh-huh.

And by October 31st, my birthday, I'm like, that was my last day outside. My wife tried to do something very nice, have this day going out. They were going to 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, I didn't succeed get me on this boat. But I mean, I was in so much pain.

I was being like dragged. It was. Now, with the pain was just full body, like all over pain? Yeah, I've learned a lot about pain. So it was, there were like many different types of pain. So it was like what I was saying about contracted. 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 consolation 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 tech cardio. I'm like sweat. I'm burning. I have sensory stuff. So like that boat ride day I'm talking about. It wasn't even 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. Yeah. And then.

Like stuff you wouldn't even think of to happen. Yeah. And then, you know, like just hypersensitive to light 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 obviously yeah so with them five months I guess it's longer than I thought but I mean it was it was pretty bad and by November 1st I I can no longer speak I need a few

feeding tube. I may have needed a feeding tube. That's another thing, the ability to like swallow so they like thick and 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 have this stuff called thick. It. It's like good, I guess, that it exists. But it's so disgusting. Yeah. But it's the same way of re-learning how to swallow.

You know, I had to do it in reverse. So, yeah, like, you know, feeding tube is necessary. Trache for breathing and then come November, I'm like in the neuro, I see 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 for this disease. So I'm still like the same guy inside. Right. 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. I do quite often. Yeah. 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 didn't change. That's the point of it, right? And mentally in this moment, did you just feel like done? Like were you ready to die?

Yeah. Yeah, I was. I was, yeah, I didn't want to, but I was certainly ready. And I was in so much pain and it sucked so bad that I was like. And I mean, they told you that it wasn't going to get back. Impossible. Right. 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. Because you didn't really have any like signs or glimmers of hope at that point. It was just unimaginable. And I'm, like, talking myself with my eyes. 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.

So would they just come in and check on you? Like, yeah, whenever and do things. And I didn't necessarily know what that. they were doing well for a while most nurses would come in and be like ah good morning mr handel like i'm debby i'm here to change your i v 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 you're literally trapped in your own body trapped in my own 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 going to say it 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 review, that would stop. And they would just come in and they would like do whatever, not that I could see, I could see like in my line of sight. So if they put me up in bed, I can see like you. If they put me down, I can see like 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 kind of weird. So the way I kind of figured out how I was about to say how bad this was, but like, it still was so bad. But like, I didn't know how I was perceived.

Two nurses come in, and they were like working on me in teams. I have no idea what they're doing. And I saw a nurse just as, I got to 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. I think my pain actually stopped in that moment waiting in anticipation in 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 brained it? and I start freaking up. I'm just like freaking the fuck up.

That's insane. So your eyes, right. Were your eyes open? Or like you... I could see the ceiling. Okay. 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'd look. I hear it was quite scary to look at me at times. So they just saw you're completely brained at this point. Probably because what, you just couldn't respond to anything anymore, I guess.

I mean, I guess. I mean, I just hear this and I'm like, oh, my God. Like, they have no idea. Oh, my gosh. That I'm in here. Like, I'm the same guy. But then I'm like, wait, am I branded? Right.

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? Right. Am I dead? And I'm just like... That's terrifying isn't even the word.

I don't know what the word is. If you think of the word, let me know. I'm working. I mean, it's just like unbelievable, unexplainable with like definitely insanity in there and like the worst. But I'm just like. At least tell me the story. That's probably what you were thinking of the moment.

Like, damn, I mean, can you just have me hear this? You know, and a lot of people, I've said that in social media, a lot of people are like, did you ever hear this 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 they say, no, don't worry, is 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 feeling, I was just like, oh my God. Like it was just a surge of like panic. Yeah.

So I go through all these thoughts of like, wait, am I? I somewhat quickly, it's hard to say 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. So 10 months from the start or 10 months from this point where they thought you were brain dead? 10 months from hearing that. 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 are screaming in pain inside and fully aware like I am.

I can't be the only one. And I'm like, I got to let them know. I got to let them 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. 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? So that's This coming up Okay 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 trick. So, yeah, I guess 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 at 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 in the room. And they're like, we're really sorry, Mrs. Sandel.

Your husband's not going to make it to Christmas. It's time for us to think about with drawing life support. And I'm like that 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, oh, 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 got to let you. you guys know, I'm in here. It felt important, I think. Um, and, you know, my wife said, my ex-wife, I keep calling her my wife. It's okay. What should I call? Should I just call her her name? Whatever you want. I'm going to call her name. Okay. I do that all the time speaking my wife. Well, because I feel like it's very in the moment. It's in the moment. All right. So I'm going to let's Keep jumping. Have you written a book? Yeah.

Okay, good. It's not published. It's not published. Because you need to. Right? Like, I really feel like I'm like, I have, I have this. I feel like they'd make a movie out of this. I have this whole plan, which.

Okay, good. Maybe towards the end of this. Okay. You'll let us know about the plan. Yeah. Did you know about 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, oh, fuck, more of 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 again better, not dying, can't stay there forever in the trauma center.

So time for hospice. So I went on home hospice and six months of that. And at this point, were you feeling any pain still? Yes. Okay. It was getting worse and worse. I was really actually quite ready. And as time went on, I was just like...

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, Well, they know now. Right. I know that. But I don't know if they knew. Granted, in this time of hospice, I was on 50-50 medications.

And I want to say 10 of those were more related to pain and anxiety. So you were still getting medication for that. Like extremely high doses. Okay. But was it helping? Not in the slide. Okay. Now, if they took it all away, probably would have just died.

I don't, or maybe not. I actually think on hostas 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. Yeah. Which they were doing, and that did not happen. I have no idea why in my life, 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. Yeah. Which I'll tell you about a few. But so my hospice is probably second week. And again, positional, I guess, mainly looking at the ceiling. I over here a 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 the moment, like in that hour and then I heard it this.

So I was in my head, I said to myself, like, I've heard this before. Like, I don't, you know, I don't buy it. You're wrong. Yeah. And I get, like, sadly, you're wrong because, like, Jesus, how much more that's going to take? Right. So I remember I get proffed 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 don't think I had any clothes on. I think I had like a towel. Like, anyway, propped up by 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. I don't know. The way you explain it. I know. It's kind of funny. It's energy. I mean, it's, honestly, I think that there's a positivity in humor.

I wonder if, because, no, like, I do talk sometimes. Sometimes it's just like, it's just so ridiculous that I don't, it's just. Right. That's what I'm saying. It literally sounds like a movie. Yeah. It's insane. Like a fucked up weird ass movie.

It's super fucked up. That somebody would make up. Yeah. That somebody would make up. Something you would say in a lifetime and you'd be like. Yeah. Right. Ah. Okay. So he looked down.

So I'm blue. I'm like, okay. Maybe now is actually the time. Maybe I'm dying. He's got hours left. And this sororan 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.

Yeah. And I know people have actually died before I 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. So I remember there was arguing in the room, and there's very complex family dynamic that will be talked about and blink that I've not yet publicly talked about. But anyway, there's 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. but someone's upstairs, they're laying.

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, honey. 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 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. Because like I basically watched her die in hospice. And I know she was in a lot of pain, even though she put it 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, giving 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 the 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. Okay. And that's as the hum got louder and the pain's 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. And you're right back there. Damn. Yeah. Crazy, right? So I didn't see the bright light, you know, that you hear about. Bounced your right back.

Bounds your right back. I actually woke up in so much pain. And like, I don't know if this looks like there was no night and morning for me. It's like time. Like, I don't know if this four hours later, six hours later, 30 minutes later. 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? Yeah, that's a really good question. Or like you just feel like it was all in one?

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

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, fuck. and I was like kind of convinced I was like I'm not sure I'll ever die

like I'm not saying like immortality or anything but I'm like I don't think I'm going to die but I'm going to 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 yeah but going back to your your question I don't think I slept well at all. I never felt rest. Did I get done with that? I never felt good.

It's just a pain, the heart rate, the sweating, the discomfort. Oh, my God, you know what the worst thing was? And I had an itch. An itch you just can't scratch. That's, like, bad in the Southland, you can't reach it, but this was like an itch where I'm like, oh, my God, it's fresh. I can't. tell anyone.

And the itches, the itches were the only thing that diverted pain away. And I could only focus on my age. It was like a distraction. Yeah. Yeah. Yeah.

That was different pains diverted from my other pain. It's like all my foot hurts. But then an itch would be like, you know. So what else I'm going to tell you? Before I get you, okay, do you have any, other questions for me about the locked-in state.

So if you're comfortable with talking about this aspect with your relationship, I guess the toll that it took on that. Yeah, we can go into that a little bit. Yeah, whatever you're comfortable sharing. 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, I know.

ex-wife was a party girl. We, you know, our first date was at like, not like a hardcore rave, but idiom type thing. I mean, you were still young, too. Still young. So she wasn't like, wasn't like she was a goody-two-shoes. So it was like, whoa, you do drugs? Like, that's crazy. But she did not like, the drugs.

drugs I did or like my favorite drugs, opiates, heroin and that stuff. And when I got tagged notes, 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 of here. Actually, I, like, not that I want you to, but, you know, I watched my mom died, and 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 a lot for her um I yes I knew it would be like probably good for me if she came back but I knew it's like

fuck everything up if she did yeah And I was kind of like there's nothing to come back to him. 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 fucked me up with how much it fucked her up. Yeah.

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 going to say something at the end, kind of plug and blink that will allude to. And then I definitely want to talk to again about it because it's insane. But, like, during this time, you were still married. Okay.

Got it. I'm going to leave it there then. Still married. Okay. And all got to when we got divorced. Okay. And then for more details, people need to tune in to Blank. Which one is Blink releasing?

I meant to ask before we started. We're posting this February 2nd, right? Which is when, so today. Okay. So it's perfect. Blink is out today. Okay, that's perfect then. And do you know what February 2nd is?

I feel like you'll kind of get the humor and why it chose the release of Blink. Do you love this logo? I do. Pretzel does. Pretzel loves it. I was, what's the other ones? Meatball.

I thought that was. I mixed pretzel meat. It's all the name. It's all the name. Pretzel loves a little. So February 2nd is Groundhog today. Do you get the humor? Yes, I get it.

I think it's fine. I do too. I like that. I have a little dark humor. I think that's great. I do too. So yes, we're leasing today. Then perfect.

So then people can go right on over. Yes. That was the whole point. So now are we jumping to... So... Yes, we're married. Okay. I know where to go.

Okay. Survived six months of five. Okay. I didn't know this, but you can only be an hospice for six months. I timed 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. Yeah, tell it. 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. And then I'll come the door and I, you know, again, since my life is 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 fuck are you going to do with them? Like, where's it going to go?

What about the oxygen? What about the, like, what are you talking about? Yeah. And they're like, man, we need the hospital web, we need the Hoyer lift, like, we need the stuff. Like, we're sorry. And so they took all the equipment. Where did they put you? Like on the bed of pillows.

Nah, uh. 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. I have one of these and they need the hospital that they needed that they needed a variety of up like they took the oxygen I thought that was crazy I don't think I was actively using the oxygen okay no I was because I was off the trache um they took the oxygen crazy so literally I got out of the bed hammock hoary left lowered to like a floor or bed of And off they went. And they took all the stuff.

And I just remember hearing my wife scrolling around the house. 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 a new doctor. And then technically did your wife think that you'd have to be placed back in a hospital? 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. Like, this is like way too much here.

That is nice. Because she's like crying and hyperventilated. Yeah. Like, rightfully so. But I'm like, I'm like, if I could be like on the loudspear, be like, 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 that yeah like right this is crazy so my mother-in-law at the time god I've really got to learn what to call people nowadays I think I feel like that's the best

way to do it 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 M.G.H. And not as a doctor, but more in the, it's called people that do paperwork. HR? She wasn't HR, but more administrative. Okay, yeah. But fairly high up, I think she had, like, big list of content.

and made a call, explained the situation, and, yeah, I ever heard that call. I don't know the details she went through, but next thing I know, I'm getting picked up by a big ambulance to take me to Mass General Hospital, and 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 goes, okay, look, like your husband's case is, like, very complex. I'm the head of 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 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 a late month or two. And I felt like great relief because, I'm like back to like MJ is good hospital teams of people and my wife can finally have a break. You know, great. Well, not great. 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 going to get him. So. I know now I'm placed in this floor called Phillips 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's 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 a specialist from most areas of medicine and a couple of nurse practitioners. It was like a big team and, you know, they've been doing this for a while. And they come in my room. It's like any other day, you know, before they've been doing this for a while. And I'll have some of my hair, hey, do you guys say that?

Do 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 he 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. Right, because so within that 10 months, no one was directly like talking to you? Only my wife, mainly. And a few family members that visited to say their goodbyes. Okay.

It's really happy, yeah. Yeah. But yeah, no one's like talking to me. Yeah. Just like, and again, I'm looking at the ceiling. And when he said this, did you mentally know what he was talking about? No idea. Okay.

And I'm like, please let me do this again. Yeah. And I'm like, see a 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. I've been trying to move for quite some time, obviously, everything it 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 I got this brain skin right here and there's no way. So even the brain scan was basically showing that you were brain dead. Yeah, so clarification on that. So actual being brain dead is actually death, which I didn't know at the time. Okay. But my brain stands 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 gone. I heard other phrases like he's disconnected from all reality, which I wish it was in a way. Yeah. That was a gift and a curse, I think. So thankfully, yeah. Thankfully, Dr. Levinson, who my mother-in-law found,

and he is a 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. Blank. 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 out of blank. Like, that's crazy especially. And 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 out of blank. And she said it in this like, like way where it felt like so.

she she I just like believed like she it felt like she believed that I was there and she was just like hey I'm here to do my job yeah you know 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, 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. And is this every day? This is every day. From what I know now, I have no idea how long she did.

this far, but from what I don't 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 blank. Okay. And it got to a 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. It should 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 a slow blink. Blink for me if you're cold. I wouldn't blink. She brings in the team. Dr. Levinson and 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 affirm me a synosis 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 at 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 letterboard which is like color-coded rows they start with the vowels basically if I want the row A, I say it on my tongue.

And then she'd go down, is it A? Is it B? Is it C? Is it D? D? 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 in the room 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. leavenson team are talking about next steps for me all in front of me and he's like so I want him to do go to Spalding Rehab, which 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've got to know what wasn't 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, P-T-O-T-N speech. He can only do speech. So I hear this, and I'm freaking out. And I know about spolting 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 every 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 Jan is like, calm down honey. I got the letterboard.

Do you want to say something? And I spelled 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's balding. Like, felt really fast. And at this point, pain was the same.

But I'm like, motivated, yeah. I'm very pumped. And then at this point, did they have any idea or answers of why this terminal brain disease didn't kill you? No. And at this point in my head, I'm like, I'm probably still terminal. 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 you can kind of communicate. Nonvergally communicate or like whatever, right? Okay. So you still at this point didn't think that there was like a survival still. Yeah.

I only dream 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 say that because every time I said that, it got worse. Yeah. But I was like, yes, like pumped, like stepped in the right direction. I get spalding, very intensive rehab.

I was exhausted. but they quickly, you know, speech lady quickly figured out how cognitively intact it 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. Yeah. 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 Megaby, which is like a two steps. Basically, it's like the 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 a 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 just laying out these, like, questions for her that, you know, I don't think she was prepared to answer. was like we get again neurosycologists in here which they did um but i'm also doing pt and o t and you know i was there for three months 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 yeah so it was slow but from what i hair 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 casting. So they'll get like for, you know, my ankles that were kind of like ballerina. Yeah. They would get like three physical therapists in a footplate. They would stretch it like crazy with your turk. And they would like jam it in this footplate 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. Um, yeah, I just remember, I couldn't talk, but I could scream and cry at this point. And, um, it was bad. Yeah.

Um, everything was, was bad. But I was in the headspace of like, this is the best way I've been in the world. And I'm going to get every bit I can out of it. Like, I'm going to get better. Um. And so there for three months to answer your question. 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 are picking up my stomach around. No, I don't think so. It shouldn't. If it does, it just like. It would be funny. So, yeah, so, like, I did make progress, but it felt minimal, aside from nonverbal. And were they doing research about this brain disease during? I don't know.

Okay. If they were, I think they were. Mm-hmm. Yeah. But, yeah, I didn't know. At the time, you didn't know. Then I get moved to a different hospital, which. I knew what 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 is like vowels and sound blends. I had to relearn everything. There are some really funny videos I put on, like, social media of me, my first time's relearning how to feed myself, making a mess. It's really, really fun.

I'll show you after this move time. Okay, I'm kind of going to go fast with the rest, and then we can do it. So I've 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 to, who was supposed to retire in three months after taking me on. I like to think he never retired because of 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. It 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 sound like? Sure.

Some people think that's offensive, but. No, I mean, it's just your life, yeah. So, you know, like, yeah, it is. It was, like, kind of, like, my first convo's with Dr. Levinson. And he basically was, like, 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 Phillips House. it was crazy. The same people that took care of me, like nurses that noticed, like, were there for that minor risk movement in 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 problem. I was. last. I really was. And just, I remember, like, knowing that this was, like,

bougiest 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. Yeah. 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 it lived 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 continue to my serial casting. There's like a ton of stuff in there. Obviously, went through like the whole COVID world in there. Yeah. But fast-for-in-batch 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, so I'd 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 ground dog say launch a blink I plan on walking with cane um onto stage to make my little speech we'll see if I actually make it um oh yeah yeah that's my whole thing and then um I'll just say a little bit about blink if you don't mind and I'll let you ask me whatever yeah So I wrote this, I don't know, I'm playing.

Let's 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. letting everything out. I'm saying it all. And yeah, coming today, February 2nd, Groundhogs Day, I'm launching Blink, tell all podcasts, 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 the stuff. And this has been three years in the making. Wow. 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 with a blink. Yeah. It's amazing. Three years. Wow. 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? Yeah. So it will all be mixed.

Got it. It's curated and put together in a nice way. Kind of like a documentary would you say? Yeah. Okay. I mean, this is going to air exactly like a eighth. HBO series would be episodic and awful awesome and it will be you know Corinne from two girls one ghost my friend of mine she would 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 Splice in. Yeah. Is your wife in it, or ex-wife in it, too? That's the hope. Okay. Yeah, it would be interesting to hear her perspective, for sure.

Well, it's, we've been investigating a lot, and there will, there obviously, I really hope she will. Yeah. Come on. I mean, this is, um, we've reached out, you know, and. 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. 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 shit you guys will all hear about,

I do still have love for her. And regardless, I want to hear your side. And, you know, I got no time for resentment or anything. or in my new life whatsoever. No, definitely not. Yeah. Okay, so should I ask my couple of questions? Sure.

Okay. So my one question is, the obvious, do they have any answers yet at all? Yeah. Or understanding of how you have gotten to the point that you're at now? No. So I am the only documented case of survival in the world from stage four, acute, toxic, progressive logo 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. And how do they make that determine? So I didn't build up the courage for a long time to ask that. I asked them non-verbally. I was feeling kind of down on day or something. And I was like, a therapist, I have a lot of love for too. I was just like, and I felt badass in 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. Right, like you made all this progress just, yeah. You know, I mean, I probably still would have gone for it anyway because what's the alternative? But yeah, 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 COVID. Over at consciousness, have you ever heard that term? I have, but remind me of... 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. Yeah. Having locked in, talking to themselves.

So there is a lot of research going into this, and some of my doctors are, you. You know, I would say the world leaders in research for this. But yeah, I've gotten no reasons from the medical community whatsoever, why I am where I am. So any medical people have us up. That is just crazy. And I do also wonder why more people aren't actively researching my brain. That too, yeah.

And maybe that'll change. Maybe they are and they don't tell me. But I don't know. Right. So are you still in any form of physical therapy? Wait. Okay. So yeah, I'm in P-T, O-T, 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 mild voice in there. I mean, I'm the same sarcastic sense of humor, like, speech pattern guy, just the voices. But, yeah, PD and OT, I mean, as I said, I'm actively working in physical therapy, how to walk with no device. which I can do, but I have so much fear that it become shaky. I'm so scared of 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 both fall. Yeah. 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. But you'll build yourself up past that. Yeah. You know, it's still, I mean, so when did you get out of the last hospital you were in or rehab center?

Inpatient. Yeah. Was it 2020 or after that? It was 2021. Okay. I want to say it was April 11 May. Got it. Okay.

I only went in again for, so I got out of my 40-year hospital long ride December 1st, 2021. Okay. I went back in to Spalding. for three weeks inpatient in April 21. But yeah, then I've been out and all outpatient therapy. I also have like a big routine. 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 and Yelp for personalized accessibility so you know take the mystery of accessibility but I also have like all the therapy and like I try to go to the gym and I do this and then I have like homework from therapy so balancing all especially in the last well it's spent like nine months of yeah just going hard nonstop non so busy guy busy guy I like it though I don't like it right It's like it's great Your life literally It's almost like it came to a halt

And then you were able to literally start fresh I'm making up for the last time Exactly exactly So how long have you been using the Walker now So there are levels to it Okay But I I mean I would say I would start

Of being trained on the Walker in April 21 Inpatient But I could only do it with like two therapists on a side. Then 20, end of 21, 2021, 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-20202, I believe. leave. I started like walking with it only in my apartment home alone, which took a bunch of, uh, yeah, a bunch of work. Um, and now I would say for the last year I've been like, you know,

going to like getting in and out of an over by myself with this thing. Yeah, that's great. That's amazing. Yeah. Yeah. And the next step would be a cane, hopefully, right? Yeah, which seems so, like, mind-boggling and far in the future, and I don't even know if I get there, but that was the same thing I was saying with this. You don't know if you'll get there. I know. I know. I know. That sounds crazy. I mean, think about where you were. I know. It's wild. It's wild. You're right. When you say that But I let it. It's like, what are you talking about? Yeah. I mean, everything takes time. I think I'm like mentally stuck of fear. I wish I didn't have fear. Which is surprising. Like, I feel like you went through. I know. The worst of it. 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 hell do you do that but I was on a train that had an emergency stop I was like ejected from my scooter oh my god like I hit my head

I mean the hardest I think I've ever hit my head in my life and you'll find this 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. And I was like, I'm not taken over,

but I was like, you know what? I'm going to 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, ah, 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 know my record. And they get me right. And I'm like, well, I was speaking on this DOT panel. And I got rejected from the train, the government center, emergency stop. And they're like, that's really ironic. That's the craziest thing of her.

Yeah. 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. Maybe it just needs to get hit a couple more times. Wow. That's funny.

Oh, my gosh. So. It's just like a totally, 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? 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. Um, 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 like you know like holding this water Like, I couldn't do that. I'm like, um, drinking, it's another sort of, which is like, you know. You need help? No. Okay.

But I, you know, I'll drink after this. But, uh, but like, um, 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. Right. 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 was saying about the next and the next and the next and the next. And not that that's like would make me even happy. And now it's more about like, what actually fucking matters in life. And like, you know. So going back here quite, but to my point, it's weird that I could do things like that.

And now I have struggles and limitations. And I'm happier now in this life and I am in that life. Yeah. But going back to like fear of progressing. I do and I get really down to myself. I mean, I've been down to 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. Yeah. But I have to like cancel a bunch of therapy appointments. Like in advance, they're not upset or anything. And then like I get back and I had to do this or like I had to go to L.A. or something and then then I had like a cold one day

and then feel good and I had to miss that one and now I'm here and you know I'm just like ugh and I'm like and it's fine but going back to like fear of like yeah like I'm you know if I was done progressing

today and like someone told me that like 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,

defile odds, yeah. Defile odds. Be able to, yeah, you know? Right. Well, I have faith and confidence in you. Yeah. Well, I appreciate. 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. And that's not a bad thing.

I think 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. Like, hello, you know what I mean?

That's incredible on its own. I keep thinking, why? Right. 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 they're 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. Right. 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 don't have an answer on like why. Yeah. Anyway, but yes, I agree with all that. And also, yeah, part of the human condition, we also own more. That's true. And like, I guess it's like, like you said, not a bad thing. Right.

It's a, like you said before, too, in a way, it's a blessing and a curse. 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 device is, it was a little more of that. And arguably, that's probably why I recovered so well. And I think a lot of things are rooted to a sense of addiction. For sure. Yeah.

I think I got addicted to my therapy. And I was on mission and I was like in health. Right. And in your life, you can reflect on how. Healthy addiction. Exactly. On the more negative. addictions and all the addictions that you've had.

So, yeah. But I think this is amazing. And so, okay, wait, 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? Yeah. So, okay, so I wrote, yeah, I'm going to give you the long. Okay.

I'm sorry. No, you're okay. I do that. I just never want to. I think I was misunderstood for so long. like non-verbally and verbally in this baby talk that I never want to be misunderstood, but why over-explained? I just had to over-explain that, so you get it.

Yeah, so I started writing immediately by, like, letter by letter. And it was like hard to do in a hospital. It was like a nurse that would come in and I get like three. words and then a new nurse that come 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 an iPad and voice control. I started really formatting this stuff. And then, and Aiden and CEO 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 introed to like the publishing world where like, you know, if you want

to make a, how you make like a real proposal to like go to the random houses and the penguins and big 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. Yeah. But all these people are giving me input, like, don't say this, do sit there. And like, it's just writing became not as fun for me. and then I do a proposal, though. 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. Do it from the heart. Right. Even if it doesn't mean that, like, I feel like everybody can give you an opinion. And, you know, especially, I think, too, 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 rules. 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 demonetize. 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 shouldn't

should not put in there. I think it should be as raw as possible. So this goes back to why I'm doing blink. Yeah. Because you have more of that freedom. Yeah. And I guess I always did, but I valued these, you know, high-end Hollywood type. You know, they're probably not wrong.

It was just like the situation. And also, I honestly think they were tour to lead to the party. I mean, this was like, I may have. have still been in the hospital. Okay. And the story is not over. Right. Not at all.

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 podcast. And, I mean, frankly, what I really want out of life, I think, and, you know, professional life and life with 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, it was, did crack or something. And then, like, was, like, was like and here's right it doesn't sink in at that age it wouldn't make me uh not do drugs yeah 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 right and i thought book is a way to do that but now it's like i think this podcast and way we've done it right and you never know things could you know everything

I think it will become a movie. I do too. I really, really feel that way, for sure. Yeah. And I think, too, if you ever decide in your free time, like, oh, I want to write more or I would want to do this, then do it. So the other thing is a lot of people are like, why don't you just like self-publish? And I mean, there are people who are self-publish who make a bestseller. I feel like it's more rare

And I I felt like My Story deserves To be on a global audience Which now at this point I think it is Regardless So maybe I would

So publish 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

Every re-check I mean, I had a TikTok that went like crazy viral. And like, I don't even count, but I think Netflix was probably added like 200 plus times. Somebody there knows the story a little bit. Yeah. It's just the beginning. It's the craziest shit. Maybe not ever.

I know you do. We're all insane. No, this is pretty, it's pretty insane. It's up there. 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. Yeah. You know? Yeah. Yeah. But it was amazing. I'm new to podcast, but not new, did tell me my story. And that's all it is, though.

New bits. This is all, I tell people all time, I'm like, this is all just props, you know? Devor, what do you? you doing groundhogs say same thing ever want to come to the launch party yeah why not come to boston you never been there that's true i should let me know what you need okay that would be cool we rented out the oldest bar in boston is created in 1842 okay wow bell in hand wow And it's not that far. Because I don't like airplanes.

I used to hate them for flying. That's no longer the fear. No, I don't know. No longer the fear. I'm on that plane. Yeah. Not bad anymore. He faced way worse.

But, no, this was amazing, seriously. And thank you so much for coming on here. Yeah. You did incredible. Thanks for, uh, of course. Of course.