E3: We are live for the second time! Here is the link for part 2: https://www.youtube.com/watch?v=BldjoPQ8tl0

Edit2: We've taken our first break. We will be back at 8 pm EST to answer questions live


He was referred to as a 'vegetable'.

Jacob Haendel, a talented 28-year-old chef from the affluent suburbs of Boston, developed stage 4 toxic acute progressive leukoencephalopathy (TAPL) from smoking heroin. TAPL is a fatal disease that damages your brain's white matter - cells that make a substance called myelin.  This protects your nerves and losing it can make it harder for you to move, think, and feel sensations. Within a month he could no longer walk. Within 4 months he could no longer eat. Within seven months, he was locked-in: a comatose state you are conscious through. He is the only documented case to recover from this disease and is here to do an epic, live AMA.

We will be going live from 12 - 1:30 pm EST and 8 - 9:30 pm EST today! In an effort to stay organized, we will be reading the most upvoted questions so please take a look at the comment section to see if your question has been asked, and upvote that so it gets to the top! All answers will be transcribed here in the comment section underneath the question!

Part 1: https://youtu.be/6JIKPZhPK14

If you want to hear more about Jacob's story to hell and back, you can check out the interview from yesterday here: https://anchor.fm/themountainsweclimb

Comments: 273 • Responses: 107  • Date: 

miraclman31442 karma

Q: Daniel (YouTube)

What was the reaction of the doctors once they noticed you were still in there--how did it change from then on?

A: That’s um, it was really a “holy shit” I mean they had no idea. At first, when I started to blink, they were saying this was an involuntary response, but then I blinked rapidly to say “no no no” and they were like, I think he is really listening to us. That’s when they tried to establish me sticking out my tongue for yes and then when they realized I was following along with their conversation, they were shocked. They were basically talking about me needing Spaulding rehabilitation hospital in Charlestown, and saying around me that I could not qualify because I could not do the required 3 hours a day of therapy. I started blinking and freaking out. Luckily the speech therapist there was like “Do you want to say something using the letterboard?” I said “I can do 3 hours a day!” And they were all like, “Not only can he comprehend, he is actually really engaging with what we are saying”. They were shocked. They were like, we need to get him to Spaulding no matter what.

What changed is um.. There were no more negative comments I would overhear. Everyone was very conscious about ‘this guy is aware’ so we gotta like engage with him. We gotta you know there weren't that many at this point (negative comments) it was more when I was fully locked in in the ICU so I was being acknowledged a lot.

Q: How did that feel?

A: AMazing, I had no ability to really converse beyond the point of basic needs, but that was enough at that point. It felt like a huge victory and at that point i knew i was going to talk again, and make it back.

Q: Where did that belief come from?

A: From everybody saying I would die and this was impossible. And no one could break through that level of being virtually locked in. I was like, I’ve already done the impossible, so just give me the hope and drive to carry on, and the optimism that I could do this.

TrumpsPissSoakedWig56 karma

Dude that's an amazing outlook and even more amazing perseverance. Congratulations for working through that man. You are a true inspiration and I just wanna send hugs and good vibes your way. Thanks for being awesome and I'm really glad you're doing better and sharing this, thanks man.

miraclman3110 karma

Thank you 🙏

kogeliz11 karma

Fascinating. Great positivity

miraclman313 karma

Thank you 🙏

miraclman31330 karma

YouTube comment: what was it like being in your own head for so long in a coma?

A: sigh ….. I had every emotion imaginable. I went through periods of extreme sadness, um, peace, uhhh, let’s see… I would just really have this ongoing monologue with myself about everything, and I would you know, I remember when these autonomic storms would happen, i would say, “Hey jake calm down.” And the other part of my brain would say “Don't worry you will be okay,” and i would respond “Okay I think I’m okay.” Then I would be like “Oh no I’m freaking out”. I also had visions of the future of me actually recovered. One that overplayed in my head was having a picnic on the beach actually more specifically, in Chatham, MA which is Cape Cod, a very beautiful area. And just having a picnic with a female drinking some wine, you know. Watching the sunset, and that played over and over in my head. Everything you could probably think of happened during that 6 months that felt like 50 years

januaryfebruary74 karma

Have you had that picnic yet?

miraclman3120 karma

That will be a mile stone very soon

miraclman31316 karma

YouTube question: While locked in, did you follow a “normal sleep schedule” like sleep at night and awake during the day?

Jake: it did not really work at all. I really didn't get what someone would call a ‘regular sleep cycle’ or any sleep. It was almost as if I passed out um, and so that could happen at 2pm and I would wake up at 6pm. There was really no, I had no sense of time, so I just, I passed out when I did, I was awake when I was, never any restful sleep. Definitely not normal.

I wouldn't quite say I was tired all the time, but I was overly exhausted from pain, medical issues, my deep thought process of like “OMG I will be trapped like this forever!” that was um, that was what was tiring. But it was never like, “oh I’m exhausted I need a nap.”

sophisha205 karma

What are some things you wish nurses would have done for you while you were locked in that they didn't know you needed?

miraclman31452 karma

Okay this is a very good question. Scratching itches would be one thing. Eye drops for my dry eyes would be another. Repositioning me more often would be another. Also, kind of embarrassing, but there were times where I would have the worst wedgie imaginable. I’d be stuck that way for hours! I would be like, if someone could just come pick my wedgie that would be awesome! I’m sure there's a lot more; let me think about that for later.

vonWeizhacker137 karma

Good to hear you are better now. I am a nurse. Is there anything you think I should know or think about? What bothered you with nursing etc..? Thank You! (:

I am interested in every possible detail. Positioning in bed, skin/hair related things, heat/cold, noises/entertainment like TV/musik. What was annoying like itching, bright lights, dry lips/mouth, breathing etc. Did explaining what was done to you help or was this annoying? Where you in pain? Did you get a weird feeling from an active matress (that pumps air in different sections). Did you see weird stuff because you were looking at a blank wall all the time? How did you try to communicate and what should one look for?

miraclman3126 karma

Well thank you first off. There are many things, and I think it’s really different from case to case, but a main point is that you should be very mindful and assume every patient can hear you. When it comes to positioning, there's never too much. They should be aware of skin sensitivity, blankets really bothered me, even sheets. Not to mention I was hot and certain material would drive me nuts. There's so much I could say on this. I feel like you should probably message me, and I could give you a better response.

crimson1175 karma

Blank walls, yikes, did they not keep music or a TV on at times?

miraclman314 karma

Pretty much but the TV was not in my line of sight

crimson1174 karma

I'm glad you made it and are with us today!

miraclman316 karma

Thank you so much I am very privileged to be here

dannydrama38 karma

Damn man, getting stuck with an itchy ballsack or a wedgie so bad I can taste it is my worst nightmare. I had a verrry small taste of it after I had a seizure and couldn't move for about 20 minutes afterwards, the most fucking scared I've ever been.

miraclman3112 karma

Yeah, I can imagine, I mean, yeah the way you phrase having a wedgie so bad you can taste it, is exactly what was happening. It was almost like I was choking on hot sauce.You got a glimpse of what I've been through for months, and I don't wish that on anyone for even one minute.

i-invented-sex-699 karma

Or when one of your balls falls out of your underwear. I HATE WHEN THAT HAPPENS.

miraclman314 karma


miraclman31201 karma

Question: What was the hardest thing to overcome?

There are so many things. It was really, well one of them, was making the first sound that was the hardest part. And I was actually trying so hard to make a sound that I would hurt my feet, so my speech therapist was saying, this doesn't make sense, no one's feet would ever hurt from speech therapy but I was like, trying so hard, I would cramp my feet and um, literally pushing so hard that I would give myself wounds inside my serial cast. That’s how hard I was pushing to initially make a single sound. I didn’t realize this.

kenos1112 karma

Holy shit you are amazing. You’re literally fighting from the inside out to be heard. I feel like the exhaustion would have won and I would have given up a long time ago. You’re a fighter in every sense of the word! Seriously inspiring.

miraclman3110 karma

Thank you 🙏

miraclman31185 karma

Q; What advice would you give to Jacob 4 years ago?

Jake: Um 4 years ago lets see. Well I was a full blown addict. Bouncing in between trying to get myself clean and then relapsing. Really making myself dope sick for like the 4 day worse period and then bouncing right back. Um, my advice for Jacob back then would be “slow your role, calm down. Enjoy everything you have. Font be in a rush, and just you don't need these extra things you may think you need. Meaning substance. ALl you need is good food, good love, shelter, you know the essentials.”

Q: Why do you think you felt the need for substances?

A: Uhhhhh lets see… it all comes back to the root problem of anxiety and depression. Which was really caused by my mother being terminally sick with breast cancer. And as she was getting sicker, it pushed me over the edge and then I really got out of control when she died. Well I was out of control before that but it was just a whole new level of self-destruction, alcoholism, drug addiction, like a mess.

miraclman31141 karma

Q: Has that has become easier for you, do you have to still consciously think about speaking and pushing the air out? Or has that become more natural

Jake: That's a bit more natural but it’s definitely still an ongoing issue. I really have to think about coordinating every movement. Not only with speech but with everything. In order to like, properly articulate i gotta think about how I'm making each sound. It’s wild.

miraclman31133 karma

Youtube Question: Did anyone change the TV channels while you were locked in? Did you keep up with the news?

A: While I was in home care hospice, um, basically my television would be on TNT constantly showing reruns of law and order which I did enjoy, but definitely got sick of. Every morning at 5am, it was switched to the evangelist infomercials. Unfortunately my care ivers obviously i was in crisis and this was in like the 2-3 hour window they were asleep. So there was no one that I could tell non-verbally or even, I wasn’t even non-verbal then. I couldn't do anything to get this off. I have a feeling if someone woke up they would have known to change this because I don't think many people enjoy that! If you do that's okay too, but I don’t.

And um, how did I keep up with the times? I did not at all and honestly the last thing I would want to hear about during that period would be the news.

miraclman31122 karma

YouTube Question: Do you have any advice for somebody who might be struggling with addiction?

A: Yeah, I do. You really need to look at like, what the problem is that led you to this addiction. Once you can pinpoint that, you can actually start to beat the addiction. The process of detox is awful. Trust me, I know. But I also know it can be done. I feel like you should have whoever is struggling with this issue contact me by email on the about section of my YouTube page. I would love to share my insights with you.

SirMrDuck72 karma

Do you have anything you look forward to doing once you recover more? And did you ever feel the tendency to use drugs again?

miraclman31149 karma

Even the thought of using drugs sickens me. So no, no way. And I have a large, almost too large, list of things I want to work on. I want to help with substance abuse issues for people of all ages. I want to motivate people in physical recovery. Really all types of recovery, even depression. I want to be a motivational speaker. I want to help with patient advocacy.

I don't know where you are from but, you know, some places in the world are definitely harder to navigate the healthcare system and others, and I am so privileged that I have my mind and I am able to advocate for myself. But being on a brain injury unit, there are so many in every town in America and across the world that do not have this ability, so I want to advocate for them. Also, the Boston Marathon in 2025! That is a huge goal of mine, even if I gotta do it with a walker, Im doing it! (laughing) :)

j0nny_a55h0l3104 karma

i have quit heroin not too long ago and used to chase the dragon myself... now i am terrified. i have a bad cough, but thats about it. i last used like 4 days ago, do you think i will be ok?

miraclman3112 karma

I do think you will be okay. Um, however, it’s a risky game. You really never know what youre gonna get, but a cough had to do nothing with my initial symptoms. You are probably safe, but you should carefully assess if it's worth it because, looking back, it’s not.

j0nny_a55h0l39 karma

Thank you

miraclman314 karma

Your welcome buddy don’t hesitate to contact me if you need to talk

miraclman3167 karma

Youtube Question: Hi we have chatted on Reddit before on the OT sub. What are your current goals in OT (occupational therapy)?

A: Uhh I want to be able, I’m in the beginning stages of learning to put my shirt on. I've already been able to shower myself not independently because I can’t reach my feet or my back but I’m getting there. So working on tht, also working on opening up that little soap container and doing all of that by myself. So dressing. I would really love to learn how to be able to put on my braces on my feet which for those who don't know I constantly have to wear these, almost robotic looking legs to keep my ankles from losing progress, so those are my goals, along with feeding myself all different types of food. I got the finger foods down, I need work with a spoon, things that are like soup. But um, yeah, so a variety of things.

peacebypiecebuypeas60 karma

What are your goals for July and August?

Thank you for sharing your hard work and incredible recovery with us. You are an inspiration!!!

miraclman3199 karma

Well first off thank you so much for listening or watching or reading. I really appreciate it.

My goals for July and August are to be transferred out of long-term care, back to acute care, where I can be in a more intensive rehabilitation hospital and a very advanced walking program. So I believe my transfer is imminent--maybe in the next week or so. And then, I believe i would need 100 days of intensive, 3 hours a day, 6 days a week therapy where I could be back on my feet, literally! Maybe walking, unsupported with a walker. I'm not really sure but that's a goal.

rabidnz27 karma

You are one tough cookie, thanks for sharing this hardcore mode journey.

miraclman313 karma

Thank you 🙏

miraclman3159 karma

Youtube Question: Because of your experiences with locked in syndrome I have put in my living will: If I am in a coma or vegetative state please play my music library and subscribed podcasts with headphones. Would this have been helpful in your situation?

A: Um, well first of all let me say everybody should have a living will. It’s really important. I Don't think many people think of that. I can only speak to my experience but I was so sick at this time that I'm not sure i would have enjoyed my music library. Maybe on a very low volume, it's hard to say. Um, I think at times I would have enjoyed other things really soothing, melodic sounds, at a low volume would have helped me at time of locked in. As I began to recover, I started listening to a lot of my core music which is jam bands, stuff like Grateful Dead, Phish, that stuff. I also really like hip-hop, but in the beginning of my recovery, it was honestly too violent for me to enjoy. So I went through stages, but definitely make a living will! It’s hard to say what you would really like in whatever condition you are in but I recommend it being at a very low volume. Again, this is just my experience. I had a lot of headaches and I really did just want silence. But I couldn’t talk so, yeah.

Followup Q: Would you recommend that is put in the will?

A: Yeah I would recommend it in times of not medical crisis. Granted when you're locked in it's hard to tell if you're actually in crisis or not. So yeah I would say as a general rule, that would be a good idea. WHat you don't want to happen is that you are going into cardiac arrest and some really joyful music is blaring, that may be annoying! (lol!)

WilfordsDog7 karma

PHISH!!!! I hope you're catching the Tuesday night dinner and a movie!

miraclman315 karma

Fuck yeah

miraclman3148 karma

Jordan: Self talk is so important, the way we speak to ourselves, How has your self-talk changed after being locked in and ONLY having self talk?

Jake: Definitely for the better and i'm not sure anyone could even relate to this um, you know, i was definitely in therapy before all of this, and now it’s like i don't even need therapy. Um, I am able to ust literally talk it all out by myself. I got really good at listening to myself.

Jordan: Do you think the skill of self-talk would improve people's lives?

Jake: I do. All of your core issues come from inside. I mean, obviously if something bad happens to you, that's like not in your control, but how you deal with it is. And if you can talk it out if you need help obviously get help, but you are really the one that can talk it out and make yourself at peace with this issue.

Jordan: Do you still have negative thoughts and if so how do you approach those?
Jake: I do. Um, there is obviously like so much going on in my life aside from this recovery there is the personal side of things, there's the health insurance side of things, there are lots of constant ongoing battles and I do at times have negative thoughts but they are brief and um, I really self talk them away or speak to a friend or a family member and just have to be reminded just to calm down, ‘you have been through worse, you will get through this.”

helloscribblair36 karma

Is there any food that you loved before your injury that you simply cannot stand now?

miraclman3161 karma

Hmmmm, you know um, I would do a lot of cooking with whole peppercorns and um, I had a dish just last night that had whole peppercorns. I bit into one and like, that was bad. That almost made me choke! But I still like spice. I still like heat. There was definitely a time when all my senses were going crazy, and I couldn’t stand anything for a few weeks. Everything had to be really bland. But I’m better now!

helloscribblair35 karma

Have any of your old party friends / customers reached out to you since your injury and recovery?

miraclman3168 karma

Yes, a surprisingly majority of them have gotten clean and um, are inspired by me. The recovery was obviously hard, but they can’t even imagine what I went through and they um, they are inspired by it. Uhh I do have some active users, they are still in contact with me, and they look for advice and um, they want to get clean. The ones that are really in full blown active use have not really reached out so far.

Lovefriedchicken33 karma

Would you ever get horny while locked-in?

miraclman3174 karma

Oh boy, I would! Um, there was not much you can do when you're fully locked in to satisfy an urge. Um, strange fact that I want to share with the world. The only things that functioned properly on my body while locked in were my ears, and my dick. Very strange. I don’t have a medical reason for this. You know some doctors have joked with me while the male brain knows his priorities but im like, yeah okay i get that, but seriously why? And I never got an answer! I can't really go into details, but um, yeah we will just leave it at that lol.

Cryptokarma17 karma

Not a doctor but we did learn in nursing school that your dick is operated by your spinal cord and not ur brain, so while the brain can influence the process, the spine is in charge and doesn’t need the brain at all! Obviously this isn’t super specific and an anatomy expert can go into your detail. Feel free to correct me school was long time ago and that isn’t used in my specialty,

miraclman314 karma

As we said live you know of any dick doctors we would love to talk to them LOL.

In all seriousness if I was fully locked in how could my spine play a part in this

helloscribblair28 karma

What kind of moisturizer do you use? You have great skin!

miraclman3131 karma

Well thank you. I use Eucerin. I just get it from your local CVS um, or online. Because of COVID-19, I use a lot of Amazon so everything is available on Amazon, obviously.

miraclman3127 karma

Youtube Question: As someone from MA who has seen countless lives lost from OD, how heavy has the opiate use in the USA played into your substance abuse?

A: sigh..A huge deal. Aside from like, the stereotypical average high school drinking and smoking pot, the opiates, that was my next step. I wouldnt even say the alcohol or the weed was a gateway drug leading ot this, but it was so prevalent and popular. It was almost like it was normal to be smoking this shit. I was kind of the guy who had a core group of friends, but also was in many other cliques. And yeah, in my group, majority of these individuals were definitely dabbling in drugs/alcohol. It was very popular. As you know MA is overrun with opiate culture. A big problem here and probably all over the world.

miraclman3124 karma

YouTube Question: What about fear?

A: Um…. fear….. I do not really think about fear anymore. The reason, the fear of like, because I’m so uncoordinated, there is a fear of falling when I’m doing unsupported sitting or standing with contact assist. I do have this feeling of falling but i just gotta trust myself that I won't let it happen. And i'm getting better at that, but in like, outside of the rehab world of fear, I’m not really scared of anything anymore.

Jordan follow up: If you don't fear things now, what did you used to fear?

A: hmmmm a lot. I was really obsessed with um, being on time, and i would always be late, mainly because of my heroin addiction. So I had a fear of like, you know being late to work, having to deal with that. Um, also being caught doing my shady business. Obviously that is no longer a concern. I can even openly talk about this stuff now. Um, what else? That’s about it really!

miraclman3120 karma

YouTube Question: Glad u are recovering. How did you manage to start communicating and how did someone notice??

A: Well it all started with “Blink if you can hear me. Blink if you're thirsty, cold, etc.” They were convinced this was involuntary, and there was no way I could actually be following along with them. I uh, then you know they established my “blink” would mean “no”. Sticking out my tongue (but I could barely do that) would mean “yes”. I can’t even mimic it now, like a dog with his tongue barely out. Then they introduced what is called an A-E-I-O-U letter board. Basically they would point to each letter, I would stick out my tongue, when I got to the proper letter, it would spell things out (this is on my YouTube channel under AEIOU board). Then I went to the “Megabee” (also on my YouTube).

Follow up Q: Did you hear people talk to you about being a “vegetative state” or talking bad about you?

A: (laughing) uhhh yeah! I heard a variety of things, everything from “don't worry he is brain dead anyway he can't hear you” to a family member saying “the problem will work itself out any day now” meaning that I would die, so don’t worry about the finances. Things like “he is a fucking drug addict, he doesn’t even deserve the bed.” Those were some of my highlights, granted there were also a lot of beautiful things I heard. The bad ones tend to stick out more.

Some of the beautiful things I heard was a nurse's aid or assistant would come really close to my face, this is when I was fully locked in, and they could tell my heart was racing by the monitors. They would rub my chest and say “it’s okay baby, you’re gonna be okay, calm down.” There was a lady who sang opera to me and talked about her day as if I was really there. This made a HUGE difference. It really brightened up my horrible day. One other thing, during the height of my autonomic storming, someone said to my father, I think it was a nurse “well at least he doesn't look bad. He kind of looks like a Greek god” (lol! I liked that).

helloscribblair19 karma

What is the most challenging part of physical rehabilitation?

Do you ever get post-traumatic growth burnout? Do you ever have days where you just don't want to perform, and you'd rather just do a lot of nothing?

It seems like you've got many medical professions, friends, and supporters all over the world cheering you on. I imagine there are some days where you might would rather not have to go through all the motions. Do you ever have those days where you simply just want to be still? What do you do on those days?

miraclman3119 karma

-Sigh...um, the motivation and also pushing through the pain. So like, it’s obviously better now (the pain) but in the beginning of my recovery, you know, you can barely move, you're really depressed, you don't know if you're going to recover, and it's really hard to find it inside yourself to keep on going when things look so bad, and like, not positive at all.

-No. I’m so motivated. Not only in my recovery but to share my experience with everyone. Um, and uh, you know just like edit youtube videos, emails, my own patient advocacy, so no i never get burned out. I’m worried that I will one day, but i've been going for about 6 months like this with no signs of burnout. Yeah and also, not many have post traumatic growth, they have the opposite, um… so yeah it’s all about mindset.

-Yeah you know even before I was in recovery, I could never sit still, and it’s even more amplified now. I gotta keep moving forward.

lilwhiskygirl12 karma

How are you managing the pain? I hate the thought of opiates and relapse for you. You've come so far.

I work with probation and parole and it amazes me how much people are in denial of the drug problem when it's right under their noses.

miraclman313 karma

Thankfully I have A new tolerance for pain. I actually rarely take Tylenol I am off all other heavy meds.

I will not I can assure you

lilwhiskygirl4 karma

That's awesome.

You are amazing to power through this and remain positive. Very much an inspiration.

Best of everything to you..... You've already seen a side of hell, nowhere to go but up from here.

Do you have a website or anything that I can keep up with your progress..... And show offenders to show them the absolute hell they are (could be) facing.

I deal with so many addicts that I've watched escalate, bright, caring people go to shit. They still have time to turn their lives around.... Jail is not the place for them. Mental health and drug treatment is scarce here. We are trying to do everything we can to save these kids... Yeh, kids!

miraclman313 karma

Thank you so much 😊

Best way to follow me is my YouTube for now


miraclman3116 karma

Keep the questions coming we will be back for more at 8 PM standard eastern time live

Prokkkk9 karma

Looking forward to it!

miraclman313 karma

Thank you

peacebypiecebuypeas15 karma

Since you are a chef, what would/will be what you make for your caregivers to show your gratitude for them (assuming they didn't specify something, and that you still want to cook)?

Suggestion: not PB&J ;)

miraclman3141 karma

Well one of my um, one of my really, i don't know if i would call it my signature dish, but something i did really well. A few things i will mention. I did braised short ribs really good, and then I would shred the meat and incorporate them into a pasta, So braised short rib. A freshly made fettuccine pasta, i would use a smoked gouda cream sauce, all homemade, artichoke hearts and grilled shrimp. Toss it all together, sprinkle some chives on there, um, and then the thing I would do really good is a grilled rack of lamb with salt, pepper, rosemary, olive oil, garlic. My dad taught me how to make a raspberry demi-glaze which would really compliment the lamb. I would definitely ask, what they would want just because I’m a well-rounded chef. I will get back in the kitchen one day, but not professionally, only for myself and others. Thank you for that question!

Orthriophis18 karma

Oh my god, that pasta sounds phenomenal!

miraclman314 karma

So yummy 😋

miraclman3115 karma

YouTube Question: Did the sleeping change once you could communicate. Did you ask for a clock in your field of view?

A: Yes, it was very unfortunate while i was locked in, the clock was JUST out of site. So i never really knew the time. When I could communicate, there was a clock in my view that I did not even need to ask for. And then the sleep changed as I began to be more active in my recovery, even in the initial stages. I would do this physical therapy--I would push myself so hard that I would be exhausted and I would sleep really well. It's ironic because my entire life I dealt with sleep issues and insomnia, but that seemed to disappear as I started recovery.

Follow up Q: DId the autonomic storms lessen?

A: They lessened but they were still there, I’m sure it played a factor. I mean, they went from like 16 hours a day to like 5 hours a day and not as intense, and um, I would no longer just pass out from the storming. As I became more active.

miraclman3115 karma

Question (from host): What do you spend most of your time thinking about?

A: The future. Mainly my recovery. I've been thinking a lot about this transfer lately. What I mostly think about is when I’m good enough, when I'm out of my own living environment, I’m still going to need intensive outpatient therapy for who knows how long, but I think about what I can really do in my off-time when I’m not focused on my recovery. And all the talks I can give, and how I can visit these rehab hospitals and provide motivation for someone who might be giving up. That's like, I plan on doing my outpatient treatments at Spaulding again and I also plan on visiting the traumatic brain injury floor where I lived. And I will volunteer my time by just helping those who want, obviously if they dont want me in the room I don't want to be there. I know how difficult it is. But if they want someone to talk to, I can tell them how far I've come, maybe I will give them the boost they need to push on. So I'm really looking forward to all the good I can do when I'm back on my feet. That's what I think about all the time.

miraclman3113 karma

Youtube Question: DId they treat you for pain?

Oh yeah, just so you know before leading up to locked in syndrome, I was fully detoxed from opiates, and they saw what was happening to my body, they knew I was in extreme pain and I was on a variety of heavy narcotics. Liquid methadone, all for pain, liquid narazian and diazepam for anxiety. Sleeping meds, I was on over 50 scheduled meds and additional 24 as needed, 3 times a day. This was all obviously not orally, this would be injected into my stomach by a feeding tube. So they would crush every pill and put it in a liquid solution and take a plastic syringe and just flush it into my stomach. And honestly nothing seemed to help.

Follow up Q: did anyone try to give you an opiate pain killer or was that clear that was off the table?

A: That was actually not off the table. Methadone typically used for detoxing from opiates; however, that was the best thing they could give me for pain. So nothing was off the table then. It was really life saving measures, comfort measures only--they were just trying to get me comfortable before my death, which nothing worked.

miraclman3111 karma

YouTube Question: Do you play video games or board games? Are there adaptive controllers you can use? Or do they help with coordination skills and past problem solving skills?

A: Okay so i was never really into the whole video games, even in my earlier life. And I'm still not so much into them. Um, there are adaptive controllers out there. Especially with 3D printing, they've been making all kinds of stuff. I really don’t have much experience in this because i'm not that into it. In terms of board games, I used to love scrabble and I still do. As i became verbal, i did not have control over my hands, recreational therapy would assist me in placing the pieces i wanted. Having said that I am more at a point where I just began playing cards in OT last week and um, I used to love gambling. That’s a vice I am not going back to by the way! But being cards would be fun, I like black jack, poker, all kinds of stuff. Being able to manipulate cards in my own hands is not only therapeutic but will lead to fun.

Follow up about motion games like Wii and Connect: Very good point, there is a Wii that they use in the treatment center at the rehab hospital I am at. More for patients with a lot more mobility than me but it does help. One thing they do it Wii golf, and you know since COVID-19 theres been no treatment centers. That’s something i think finally I may be at the level to do, so maybe some Wii bowling or golf is in my future.

pygmy9 karma

Gday Jacob, how are you answering these questions? Are your responses verbatim & dictated, are you typing etc?

Good on you, you're a testament to the power of hope :)

miraclman315 karma

Thank you so much. Um, the way we are doing this is I am speaking to Jordan live, and we have a transcriber in another state working very hard taking every detail down.

peacebypiecebuypeas8 karma

Favorite Show and movie, before and after?

miraclman3110 karma

Favorite show would have to be Showtime’s Homeland about the CIA. That was, interestingly enough, that was def before um, also The Wire and The Sopranos on HBO. Homeland just had its final season which I was able to watch and um, the ending was just perfect. Since I watch everything, I mean it was the perfect way to end a 10-year show. For movies, I gotta list of um, funny ones I would watch with my brother David. We loved Happy Gilmore, we loved Home Alone, we loved 8 Heads in a Dufflebag, I highly recommend it, it's really funny. I don't even think it was ever in movie theaters but it's hysterical. Also South Park was a big favorite of mine. They really haven changed before and after.

pygmy8 karma

A Locked in syndrome case in fiction was terrifying.

Black Mirror (can be very full-on) has an episode called Black Museum, in which an unethical doctor in the near future documents his neurological experiments.

One such case was where a dying women's consciousness was preserved, uploaded into (digital memory in) a plush monkey. She was fully aware, but could only express using two phases: monkey loves you or monkey needs a hug Reddit discussion on this episode

Truely the stuff of nightmares, & glad you made it back mate

miraclman313 karma

I will check all this out thank you so much for your support

peacebypiecebuypeas7 karma

Is there something you've seen technology can (or you think might be on the cusp of) that might improve your quality of life, and do you have the means to pursue it? How might your online community/fans help?

miraclman3113 karma

-Sigh...yes there is all kinds of tech out there. Unfortunately they’re very expensive, um, and insurance, at least in America, will usually cover the consultation to be educated in this technology, but they wont cover the actual item. So there are things available but they are very expensive and they are up to the individual to purchase them. I do have minimal means, Well, maybe more than minimal. So like, for example, I do a lot of video editing as seen on my Youtube page, and i'm very limited with only having an iPad so something I just ordered is a Surface ProX which will act as an iPhone because I can insert a SIM card as well as speech recognition tech and better video editing software, so that's gonna improve my quality of life. When I move into my own apartment which realistically is probably within 6 months away, everything will be essentially a smart home meaning everything will be controlled by Alexa (the lights, thermostat, everything, the shades) so there is a lot out there.

-Uhhh, you can definitely help me by letting me know what you want (burp, excuse me!-- I have no control over that whatsoever!) Um, you can let me know what you would like to see in my recovery or like, other ideas of how I can reach out and help through my YouTube channel. Um, you know there may come a day in the future where I’m trying to fundraise for not even myself, but for like a greater cause and um, I will keep my followers up to date with that. I’m sure this will have to do with something around the marathon. I don’t know quite yet what cause, but there are many out there, and you know, my goal is really to help others and teach others from my mistakes. That’s why I believe I’m still alive.

aquariusBest7 karma

What makes you happy nowadays?

miraclman3125 karma

Ahhh lets see. Going outside is such a gift! Just like the basic even f its only for 20 minutes, Definitely speaking with family or seeing them. Being able to eat whatever I want. Um, really the little joys of life now. Everything really makes me happy, especially when I do something new in my physical occupational or speech therapy. When I reach a new milestone that is some of the best stuff ever.

Screwed_uk7 karma

Hey, 5 years ago I had an 8 week period of being locked in. I was taken to hospital as i woke up and couldnt walk properly. I got worse over a few hours and was admitted to the ICU. I was eventually diagnosed with Bickerstaffe Brainstem Encephalitis and Guillain Barre Syndrome. These also damaged my myelin sheath and left me paralysed and locked in. I made really slow progress but after 2 years in hospital I was discharged. I've been left with disabilities but have adapted my new life ok now.

How has your recovery been??

miraclman316 karma

That is amazing to hear that someone else has actually been locked-in like me for any period of time and got to come out of it. I congratulate you. And my recovery has been one hell of an adventure. I'm finally at the point where I’m really enjoying my recovery. So it’s good, thank you so much for sharing.

miraclman316 karma

Question from Jordan (interviewer): did you make progress because it was time to make progress, or were you capable all along?

A: I don’t think I was capable all along. Something changed, not sure what, I don’t think anyone would know, even my neurologist. He could not tell me. But I think that when that initial wrist movement happened, and I started to blink, the right people were there at the right time. I was in the right hospital, and that milestone gave me the drive to just make all of this possible.

helloscribblair6 karma

What is your favorite cheese?

miraclman3120 karma

Well, my favorite band is the String Cheese Incident, so they are in a way my favorite cheese, but they eat brie.

Michiganderinomaha8 karma

SCI family is with you buddy. Keep up the good work!

Greet everyday with full purpose, with passion and pride.

miraclman312 karma

Thank you so much 😊 we were trying to find your comment live on the air

jessica0828916 karma

What was the most frustrating thing you heard/realized was happening when you were locked in, before your doctors or nurses realized you could comprehend your surroundings?

miraclman317 karma

Sigh… I said this in our interview the other day. I've heard, “Oh he is brain dead. Don’t worry he can't hear you,” which was really devastating and really annoying. Also when I was in the ER I was being transferred back and forth to rehabilitation hospitals but I could never last. They would have to send me back to intensive care. And these doctors would come in and look at me and say “Oh god, look at this poor guy, he’s so contracted.” That made me feel worse about myself. They had no idea I was listening...but I was. It was almost like I was a specimen, and not a human.

XJamnJoshX6 karma

What was your first thought or reaction when you first realized you were fully locked in? And did you immediately know how fast you were going down hill?

miraclman315 karma

Fuck me... And then I was like, OMG, could I be like this forever? And then shear terror took over because I started having extreme anxiety and panic attacks. I didn’t even know this was possible for a human being to be locked-in. You know you think of like comas, really bad accidents, disease, or death. You don’t think about the in between.

XJamnJoshX5 karma

Roughly how long was it that you were trapped? And could you still feel everything, but weren't able to do anything about it?

miraclman312 karma

Six months

XJamnJoshX3 karma

Wow... one final question, and thank you for taking the time to answer mine! I'm a restaurant manager, I have hired people straight out of rehab and I have seen my fair share of employees have to go into rehab.... what is some advice you can give me for future struggling employees?

miraclman313 karma

Wow man. It’s a really hard subject you need to find the root of the problem The drugs are just the symptom. Also when someone is caught up in it they really need to detox in order to see things clearly. So much bad shit can happen from these stupid drugs. Email me maybe I can give you better advice

peacebypiecebuypeas6 karma

Is there anything you'd recommend or like to say to the speech pathologists out there?

miraclman317 karma

First off, thanks to every speech pathologist for what you guys do. It’s amazing, rewarding work. I would say, never give up on your patients, which I don't think they do, but um, just keep pushing them forward to better themselves. And I would also recommend for those who are motivated to work on their own, to download an app called “Constant Therapy”. Basically it allows you to work on all different types of speech on your own, if you have access to an iPad or computer. I have a YouTube video of using this app.

Prokkkk5 karma

How has your experience changed what it means to be alive? How has it changed your understanding of happiness and how do we find it?

While in your coma, were there any moments where someone showed you kindness that really stuck with you?

miraclman313 karma

I have learned from this experience that every little aspect of life is a gift and to be grateful for everything

There were lots of acts of kindness throughout being stuck in my own body and my recovery

bloodyicecreampizza5 karma

It's father's day in the US today.

Can you see yourself as a father someday?

miraclman312 karma

I can. It’s actually one of my life goals. On the bucket list, priority list. I’m actually the last person of my name, so it’s like, on my grandmother's death bed, she told me to keep the family name alive. So it’s definitely important to me. I think I would be a good dad, even when I was in active use, I knew that I would get myself clean if I was gonna be a dad, and that was a priority.

Lovefriedchicken5 karma

Were there any songs or music you could hear in your head when you were locked in?

miraclman3113 karma

Oh yeah, um… there was this song by Railroad Earth which is kind of a bluegrass band called “A long road to go”. If you listen to this, there’s actually a link in my youtube playlist section. It just um, it really captivates what I was going through. I still got a long way to go (the chorus) I would play that a lot in my head. As I became unlocked, there was a Master P rap song I heard while I was in Mass General, i don't know where it was coming from. “They say I could’t do it but I did it, fuck the haters” And I heard this and was like, “perfect, thats my jam!”

FigureOfStickman5 karma

how did you pass the time? did you find any sort of ideas you really liked while spending so long alone with your thoughts? also, would meditating have some sort of PTSD effect on you now?

miraclman314 karma

Uhhh, that’s such a hard question to answer because there is so much um, ideas, lets see. Well I definitely got good at my geography. Ideas that stuck with me were really diving into myself. I figured out why I was depressed, why I abused drugs, and I learned a lot about myself during this time. But again, there is so much I can probably go on for 4 hours on this topic.

(On meditating) Absolutely not. I have a form of meditation I do, mainly deep breathing, and calming music. I dim the lights and um, it’s just very peaceful. I have post traumatic growth, which again is extremely rare, but fitting with my story.

themodernpirate5 karma

Are there any charitable organisations or support groups that you would like to help once you are able? Maybe be some of us could fulfil those good wishes on your behalf?

miraclman314 karma

There are a lot. I’m still working on figuring out the best, but one thing, particularly in Massachusetts, one group that I'm beginning to be involved with that totally revolves around opiate prevention, education, grief counseling for fatal overdoses -- is called The SAFE Coalition. There is also a variety of traumatic brain injury organizations I would like to support. I really want to focus.

I don't really know of one that exists, but something that helps people that are non-verbal, get access to iPads. I was so lucky to get one. It was from an organization, but I think they are stretched very think and there needs to be more of this non-verbal communication gear out there that’s either donated. Maybe I will start something I don't know. But even being non-verbal is almost as bad as being locked-in.

rothan225 karma

Jacob, hello 👋 my name is Jacob. I am also a chef in Louisville,Ky at the Seelbach Hilton. Did you use the H in the industry a lot? I’ve seen sooo many chefs go down that route, it hurts your body.

miraclman313 karma

I did. Definitely in the industry. As you know, you are on your feet for extremely long hours working really hard and, not only pain pills, but cocaine as well. There were a number of illicit drugs readily available from everyone: from the dishwasher to the head chef.

rothan223 karma

I miss Bourdain, he was a legend.

miraclman313 karma

Fucking true that kitchen confidential was the shit

Bad_Hum3r5 karma

This is going to be a weird question, but why have you been putting “umms” in your answers? Are you using a direct speech to voice or something? It’s just interesting to me

miraclman313 karma

Yes we had a transcriber and where it is right by the moderators to include every detail

bloodyicecreampizza5 karma

Are you able to independently use the bathroom?

miraclman313 karma

Sadly not just yet. Sorry you were downvoted that is a very fair question

igotbigbigplans5 karma

Hey Jacob! Your story is so inspiring. I have two questions for you!
The first is did you daydream a lot while you were locked-in?
My second question is did you ever have a moment while you were locked-in where you were like "oh fuck, I'm going to die?"

miraclman315 karma

-Yes I did daydream. I have this recurring image almost like a video that would play in my head of this picnic on the beach. And I would daydream about running. Also I would daydream about my past. I would think a lot about some of the darker moments and bad things I had done. You know I was never really like a bad guy, but I mean, I teetered on the edge of being a criminal. Never any like breaking and entering stuff but like drug dealing, etc...

You know there is a really good friend of mine that um, he was a fellow chef, and he kind of walked in on me “chasing the dragon” one day. I was like, ‘oh shit!”. He was technically an underling of mine. I really tried to keep my professional life and my ridiculous personal life separate. But then he was all like curious and wanted to try it. I wanted him like, you really do not want to do this. I really don't want to be the guy that introduces you to this. There was a back and forth for like 20 minutes. I don't know why I gave into this and let him try it. That was um, something I reflected on a lot. It’s like, how shitty of me to introduce someone to something I knew was really bad. We have since talked, and I apologized. He is sober now. He has been sober before I got sick thankfully.

-Of course, several times I thought I was going to die. Really every autonomic storming episode, when I would pass out I would be like ‘oh fuck here it is.’ but then I would wake up the next day. Eventually it was just like, I dont think I will ever die but maybe I wont get better… that was scary.

sixStringedAstronaut4 karma

What hobbies are you into now? In how many of the hobbies you had pre-locked in syndrome do you still participate in? I hope you're having a good day!

miraclman316 karma

Well thank you I am (having a good day). I’m here with you guys so it’s definitely a special day. Majority of my hobbies that I was into before, well the healthy ones at least. I am not physically well enough to participate in. Um, I still have new hobbies. Obviously video editing has become a huge one. Writing my different accounts of this whole disease and recovery, as well as really fucked up things from my past. Um, and then just my basic physical recovery. Eating good food is definitely still one. Every chance I have to go out to a nice restaurant is a gift. I’ve actually got to do that with my brother and my sister to my favorite location - the Liberty Hotel in Boston. Well the first time, I had a brie, brioche grilled cheese with fig jam and prosciutto with sweet potato fries. Such a treat.

Sampaguita19624 karma

Asking as a nurse! What are some things that health care providers did that helped you in your recovery? I’d want to know if there are any actions I could do to help someone in this position.

miraclman313 karma

There is so much here, but I would recommend speaking in soothing tones, calming affirmations. Be sensitive and aware that they may be really sensitive to touch or light. Keep it really calm and cool. Other patients with brain injuries are probably running really hot, even if they look cold.

Peachesx4 karma

I’ve probably missed the window on this one, but how do you afford your medical care? I’m assuming you’re in the US so that sounds pretty scary, how much have you racked up in medical bills thus far? I hope you continue to get well :)

miraclman316 karma

LOL yes! The U.S. healthcare system needs work. Um… it’s hard to say, luckily I have Medicare because I worked for 10 years so I have social security. In addition, I am very privileged to be in the state of Massachusetts which has MassHealth which really is the best health care in the country. So basically I have a combination of Medicare and Medicaid. Medicare is my Social Security. Medicaid is my MassHealth. Between them, they cover mostly everything. But if you were to really look at what something like this would cost with no insurance…. Last time I checked was July 2019. I was around $25 million! That makes me feel…… um… I ask myself…. Am I or anyone really worth it?? But I have to think, “Yes. We are all worth that amount.” It’s almost like this is a made up figure. Its obviously not the real cost. So I can't even contemplate where I am at now. Maybe $35 million. It’s a good thing I have insurance!

flymon684 karma

So being the first survivor maybe they don't know, but is any kind of relapse a concern or even possibility?

Good luck on your recovery!

miraclman313 karma

Thank you very much! Not even a concern. I am so far past that part of my life which was a really huge part, like, when you think about it, it was over a third of my entire life. I was smoking opiates. But I am so far removed from even the thought makes me nauseous of getting intoxicated.

SolidParticular4 karma

I'm sorry if this has already been answered, I looked for it in the comments but couldn't find it. For how long were you locked in? And how much could you do? You could blink and you say you could stick your tongue out for "yes", was that all or could you like twitch your fingers or something?

miraclman316 karma

When I could blink and stick out my tongue I was considered virtually locked in. Before that, all I could do was involuntary movements. Roughly the time was 6 months of being able to do nothing, fully locked in.

DuckPuppet2 karma

Jesus Christ.

miraclman312 karma

Seriously... it felt like 50 years

DuckPuppet2 karma

I’m so sorry man, I’m really happy for you though, I’ve been watching your YouTube videos and the progress you are making is insane. My mom was a speech pathologist and I’m going to show her your channel tomorrow. Anyway, I subscribed and am looking forward to new content. That shit is badass.

miraclman313 karma

WOW please do I have many amazing speech therapy videos. I would be very interested to hear her opinion thank you so much for your support and your subscription. 💪🏼

yunghefner4 karma

What was your heroin use like? As in how much were you using on the daily?

miraclman313 karma

You know, I started with Oxy on 80mg pills known as “Jams” or “Green Monsters.” Then they made them tamper proof so you could no longer smoke them. I went to Perk 30s. They became scarce. Then in 2013, I began smoking heroin. It started with probably less than a ½ a gram a day. In my height abuse I was upwards of 2.5 grams per day. It costs astronomical amounts. I would essentially have a $500 USD per day habit. Obviously, that’s why I supplemented my income by dealing. And you know I always felt like such a scum bag for selling. These drugs make you rationalize crazy shit. And helping out other addicts who were equally addicted, I could give them a better price. I figured (this is a broad way of thinking, but it’s better getting it from me).

yunghefner3 karma

Holy shit man the fact that you survived $500 a day habit is incredible. Did you ever OD or anything of that sort? You’re a badass man your story is unique I’m sure you give lots of people out there hope, continue moving forward and staying positive!

miraclman312 karma

Thank you so much buddy! I was crazy never OD

Thisismydirtyalt691 karma

Found the heroin user

yunghefner2 karma

I’ve never used heroin before but opiates are my drug of choice, I use oxy casually but stories like these keep me scared straight

miraclman311 karma

Not trying to scare you straight but it is scary

miraclman311 karma

What do you mean?

justacoolbaby4 karma

How would you describe your religious beliefs/personal faith, and did these change during your locked in time or now?

miraclman316 karma

I know they did not change. I do have more questions now about what is really out there. I’ve always believed in a higher power. My religious beliefs, I identify as Jewish, but I’m not that religious, like, I never really was, but I identify that way. Everything is still the same, but I have more questions about what's really out there, because I think there's lots more than we realize.

haniblecter3 karma

So what path in life took you to smoking herion?

Asking for a friend

miraclman312 karma

Well, you know this was all the deep cause of depression and anxiety that rooted from my mother being sick, um…. I guess it was also popular where I grew up. Not only was I depressed and kind of putting on a facade of fun-loving happy going guy, it was just so popular where I grew up. It was just easy to get into opiates and then, that led to heroin. You know, just the road I went down I guess...

miraclman313 karma

Coming back live in one hour 10 minutes see part 2 link in the description to follow along live with us

miraclman313 karma

Last words: Thank you everybody for watching and for your support. Hopefully we can do this again in 6 months, both Podcast on The Mountains We Climb, and the AMA. Maybe I will be walking. I’ll probably be in my own apartment. It would be very interesting to follow up in 6 months. Doing this interview is more tolling on my body than any physical therapy which is strange but true. I am privileged to be talking with you and everyone else. Thanks everyone!

CptKirk20633 karma

What was the waking up like? Or the escape? Not sure how to word this? Like when you regained control? Or is not like that? I guess I’m imagining you literally being trapped and one day escaping from a cell, except the cell is your mind.

miraclman313 karma

So in a way you can look at it like that but it was really a much more slow, painful process.. It wasn't just like I magically woke up and escaped. The escape was really the “link” to establish that I can hear you! And when I started saying yes and no with my tongue and becoming virtually locked-in, i would definitely classify that as the first escape. That was, I mean, it’s so hard to put into words, it was such a little thing but it was so huge it was like…. Someone commented on my YouTube channel “That is some man on the moon shit.” That's what it was like, the initial yes and no stuff. It was even more of an escape when I uttered my first noise. I have these ongoing escapes--unlocking new levels and boundaries that no one would think possible. And it’s so exciting!

enchantedspoons3 karma

Did you come up with any good book ideas whilst just being there? Also just another one did you hear anything that really annoyed you

miraclman312 karma

LOL yeah. Aside from just my personal story, like honestly it could be good enough for even one of those far fetched lifetime movies, I would definitely qualify for that. But, there are some other horror story ideas revolving around my case that could be fiction or non-fiction that I’m working on.

7yeet73 karma

What was your biggest fear?

miraclman313 karma

(sigh).... Well, I mean ….. Drowning. I thought that would be the worst, but perhaps locked-in syndrome tops that. I still wouldn’t want either one!

Youareyou643 karma

Did you ever get "sick" (as in like a minor cold) while locked in? If so, did you cough or sneeze?

miraclman312 karma

There was no coughing or sneezing. Um, the only sickness I really got while being locked-in, were UTI’s (urinary tract infections). I don't even believe i was capable of making boogers, I was like, my sinuses were always clear...strange!

helloscribblair3 karma

What was the best concert you ever went to?

miraclman312 karma

Oh man there are so many I would have to say galactic during maradi gras! I have seen some epic phish and string cheese incident shows as well

helloscribblair3 karma

What is something you wish people would ask?

miraclman313 karma

(sigh) hmmmm. Well…. To be funny here. “How would you jerk off when you were beginning to recover?” That would be a good question! LOL! Okay, soooo I had minimal movement in my arm, both arms. And my fingers were so clenched, but I realized I could actually touch my dick and I was like, “Well this is like amazing!” I couldn't do that in, I don't know how long. But i couldnt open my hand, but just the friction alone of not being touched for so long was enough to kinda….begin the process. And then as I got better, I got no shame so I’ll just tell you guys. I got good at this as a disabled person eventually!

miraclman313 karma

YouTube Question: Do you have a bucket list?

A: It’s really about some personal goals I would want to achieve such as, opiate prevention, education, motivation, and all kinds of recovery. Motivational speaking… one thing I really want to do is walk the Great Wall of China. Definitely more travel as well, international. I used to travel more. I definitely got to renew my passport by now lol. Also my driver’s license as well. I’m sure they won’t give me one anytime soon lol.

lady_MoundMaker3 karma

You talk about looking forward to doing talks and getting involved, which is great! From your experience, in the midst of your addiction, do you think it would've benefitted you to hear someone talk about their recovery?

miraclman312 karma

Yes. But you know, I spent time in a detox once that was um, a personal choice of mine. And I had to talk about how I was an addict using needles, and there was nothing there quite relatable to me, and I always thought that I’m not that bad because I didn't use needles so I thought this did not apply to me. Oh boy was I wrong!

miraclman313 karma

Facebook Question (Sean) : Jake when do you think you could go home?

The plan is for me to be moved to an intensive rehab center. It will have all my advanced therapies and a good walking program. They think maybe about after 100 days there I will be ready to move to my new OWN apartment, which will obviously require some visiting home care health aids. I don't even think I will need visiting nurses, but I will still need some help. I would say realistically within 6 months, maybe sooner. If this is the Sean I think it is…. What’s up buddy!

miraclman313 karma

Question from Youtube: With locked in were you conscious the entire time? did you sleep and dream?

A: I was conscious 99% of the time. I did not sleep. Did not dream (except daydream) but not real dreams. I would only pass out from autonomic storming. Never a restful sleep though. Never on a schedule. I could fall asleep at 6am or 2pm or 2am. It would make no difference. I would just pass out.

aquariusBest3 karma

Do you fantasize nurses, Aides, PTs or OTs? If yes do you develop feelings towards them?

miraclman313 karma

LOL!! Um…. yes this has happened. Not really fantasizing in a creepy way, but there have definitely been strong connections, both romantically and not.

miraclman313 karma

YouTube Question: When were you able to finally sleep?

A: When I was considered non-verbal. I would say my first real night of sleep was when I got to Spaulding Rehab Center in Charlestown, MA, probably around August 2018. A combination of being able to communicate with the MegaBee, and the intense rehab, made me finally relax and sleep. My first sleep was very relieving. It was, you know I used to be, when I was locked-in, even before hospice, I had these thoughts of like, you know, if I close my eyes and pass out this might be it... Not that I was even scared of death really at this point, but in the back of my mind I realized when I was passing out, I thought this could be my last moment alive. But when I was in rehab, it was finally like, I'm working so hard, and I was working so hard just to stay alive, but there was something about that I couldn't put into words. But it was very good it was like, I finally felt like I would accomplish things, even though they were so minor. And I guess it allowed me to get some rest.

miraclman313 karma

Question from Facebook: Hi Jake I listened to you and Jordan yesterday morning. If this is too painful or sensitive for you to answer, please say so. You mentioned at some point during your locked in state, you reached a place of beauty and peace. Do you believe it was a near death experience?

A: I do, I think it was the closest humanely possible to death without dying. I know that there are people out there who have died for a few minutes who were brought back. That did not happen to me. I was on the verge of death but never went there, was never like brought back with paddles. I liked to think I was passing over or beginning to.

Noice_cock3 karma

Will you be able to fully recover?

miraclman316 karma

Well, at first they were like “You won't even survive”. Then it was like “he’s gonna live a life paralyzed, quadropolegic and nonverbal.” Then it was like “Oh wow he is talking and moving. Let’s see how far he will take this until he plateaus.” When you just reach your close potential…. Anyway I never plateaued, and now they are expecting a full recovery or semi-full recovery. I’ll probably never be 100% but I will get damn close, and I will run that marathon one day!

Smorpaket3 karma

What was the best thing that happened to you recently?

miraclman314 karma

Hmmmmm getting on all fours was pretty epic (unassisted). Aside from that, because of COVID-19, well beating COVID-19 was pretty special as well! But because of COVID-19 there were no visitors still or going outside. My 20-30 minutes of fresh air in the sun was very special.

full_metal_nerd3 karma

is there a stage 4 besides progressive? i would guess if one was diagnosed stage 4 i would assume it’s pretty progressive hence why it’s stage 4

miraclman316 karma

Well, at first they were like “You won't even survive”. Then it was like “he’s gonna live a life paralyzed, quadropolegic and nonverbal.” Then it was like “Oh wow he is talking and moving. Let’s see how far he will take this until he plateaus.” When you just reach your close potential…. Anyway I never plateaued, and now they are expecting a full recovery or semi-full recovery. I’ll probably never be 100% but I will get damn close, and I will run that marathon one day!

Initially I was diagnosed as toxic acute progressive leukoencephalopathy. Stage 1 is when you are losing your coordination. Stage 2 is when you are losing your voice and all other abilities. Stage 3 is locked-in. Stage 4 is nearly death. That's why I am the only one to recover from Stage 4. I think I am not sure how many survivors from Stage 4 there are, but if there are any, they never recovered. Before hospice I was technically Stage 4 for like 1 month, and then in hospice definitely Stage 4, and then even after when I began to come out and be un-locked, I actually was leaving a terminal disease which I did not realize for a long time. I thought I was getting better, but I was still terminal so it took me a while to build up the courage to ask this. I finally did, at first to a very special physical therapist. It was very hard non-verbal discussion about how sad it was if I was trying this hard and was still terminal but they were like “I really don't think so.” and then about 6 months later, when I could talk, I asked my neurologist at Mass General and they were like, “oh no you are not terminal. You are like re-born. You just have to physically recover now.”

miraclmannumber1fan2 karma

I know you can’t walk (yet!) but will you run for mayor?

miraclman312 karma

I was thinking President! But yeah I will, I will run for whatever the people want me for. Thank you, the username means a lot!

miraclman312 karma

Q from Interviewer: What do you think needs to change in our approach to helping people with drug addiction?

A: A lot, I don’t know if there is any other place than Massachusetts, but one of the main things that needs to change is really addressing the key issue that makes you want to use drugs, because without that, yeah I could detox, but the odds are that you will relapse. So to stop that, you gotta find out what it is inside of you that makes you act out the way you are acting out. And it doesn't even need to be drugs, it could be a variety of different self-destructive behaviors.

areeghuda20182 karma

Do you regret ever doing drugs?

miraclman312 karma

Of course. I mean, who knows where I would be. But then again ….. Who knows if I would be in the position I am to help others if I didn’t go down this path. So it’s a very hard question to answer. But overall, yeah I regret dabbling in that shit. Even as socially experimenting, I regret that.

miraclman312 karma

Youtube Question: Do you have any numbness or tingling associated with your ataxia?

You are welcome! There is no numbness, never has been. I've always been hyper-sensitive, but there have been times of tingling, but luckily, I haven't had a tingle since 2019. Mainly it would be in my arms. I take that back, mainly in the fingers, but also in the arms. This is not like your arm falling asleep, it's hard to explain.

i-invented-sex-69-3 karma

What would you rather be referred to as, a vegetable or a fruit?

miraclman311 karma

Sorry you were downvoted is a very fair and the funny question. When you put it that way vegetable is just fine LOL

Environmentality1-3 karma

Living in a rehabilitation facility, how much privacy do you have? Do you ever watch pornography and get busted by the nurses?

miraclman313 karma

LOL!! Um… privacy is minimal at best. I mean, I still need help when I go to the bathroom or really to do, majority of ordinary daily tasks. In terms of the pornography question, I was never really into that too much. I prefer the real thing! Um, having said that, when I first could move I was capable of looking at porn so obviously I tried that. I hadnt really seen a naked woman in quite some time. So I looked that up and like, you know, I had no control of like my hands, so this was all done by voice control and I realized Siri could not understand me that well. I would be like, Siri Stop!! And she would be like “OK, I will make it louder.” I would get embarrassed about being caught. I was close to being caught ...