Memorial Day weekend 2017, I was diagnosed with a very rare disease called Toxic Acute Progressive Leukoencephalopathy. There is no way to prove what caused my illness. The only thing they know for sure is that it was from inhaling a toxin. This disease is nicknamed Chasing The Dragon Syndrome. I used to smoke heroin on tinfoil — odds are it was a cutting agent.

This is my recovery journey from Locked-In Syndrome (LIS), also known as pseudocoma. It is a condition in which a patient is aware but cannot move or communicate verbally due to complete paralysis of nearly all voluntary muscles in the body except for vertical eye movements and blinking.

Everyone thought I was brain dead but I could hear and see the entire time. People thought I would die hundreds of times, but I slowly came back to life. There has never been a recovery like mine from this illness.

Proof

Comments: 2053 • Responses: 48  • Date: 

TitanLucifer123794 karma

Did you hear anyone trash talk about you?

Edit:Thank you kind stranger for gold! Holy shit 3.7k updoots! ;) I'm shaking lmao

miraclman314064 karma

Yes sadly

Oghier2924 karma

How did you stay sane? Where did you place your mind, to keep from losing it?

miraclman314147 karma

Very good question.... it was very hard but I had A lot of love for my wife and I tried to keep looking to the future even though I had little or no chance. Also I have a very good sense of humor I tried to keep that alive the entire time in my own head.

Sunshine_Breeze1858 karma

That was genius to keep a sense of humor

miraclman312019 karma

You have to it’s really help me with my entire recovery. It is one of the reasons I’ve been able to accomplish the impossible

CaptainC0medy700 karma

Was there anything you found uncontrollable? Like you would really wanna laugh but couldn't? It's strange, when I try

miraclman311105 karma

My laugh is absolutely ridiculous now I breathe in instead of out. You can see a example on my YouTube channel

Ideologicartist1599 karma

Were you awake the whole time? Did you dream at all? Did you feel any pain or felt any physical touch?

miraclman312138 karma

I was in there and out but yes I could feel pain and that there were times where I felt nothing and times I felt everything

lime-cake1507 karma

Can you share some interesting attempts to wake you up? Did people try bringing food you love in an attempt to see if you move? Or deliver some shocking news in hopes of jolting you awake?

miraclman313825 karma

My wife had a very good feeling that it was really there... she would read to me and tell me about what was going on in her life. She tried to heap things very calm for me.

There is one very distant memory I have of my mother-in-law coming to see me and talk to me. Because we are 99% sure this was caused by drug use and she knew nothing about this... she said “I forgive you for everything and every day don’t worry I will take care of your wife” she was crying and I felt like crying.

Since I’ve been able to talk again we have discussed this. I told her in that moment I felt like I shed a tear. She actually told me she thinks she could tell I was sad and was almost caring.

JALKHRL1469 karma

Can you tell us how was the moment you finally communicate with another human after being trapped inside your body? who noticed? how did you "speak"? tell us, please.

miraclman312222 karma

My wife she could tell by my eyes. Eventually stuck out my tongue for yes and then blink my eyes for no. That led to a letter board

WinterText994 karma

wow...so you were able to see and hear but not able to move your body?

miraclman311064 karma

Hear and see nothing else

partyinplatypus511 karma

No smell?

miraclman31988 karma

No not until I began to recover then hypersensitive

will9630951 karma

If given the opportunity, would you have preferred to have been euthanized? I hope this isn’t overstepping, I’m genuinely curious.

miraclman311499 karma

Not overstepping at all this is AMA. The honest answer is there are times where yea if I had the Choice in that moment I would have taken it but I had those feelings rarely so overall no

TheNASAUnicorn670 karma

Were you able to move your eyes at all to communicate during the coma?

How are you now?

Thank you!!

miraclman311148 karma

No not then but by the time I was put on hospice care I was able to communicate with my eyes only. After about 16 months in rehabilitation hospitals All things considering I am doing remarkably well and continue to. I have a long way to go and I am beginning to really learn how to walk.

Thank you!

Os2099489 karma

So like sleep paralysis but for 2 years???? wtf i had that shit for like 3 mins and thought i was going to die.

miraclman31562 karma

My “comas” went on from October 2017 two February 2018. Then I went to home care hospice for six months where I was virtually locked in.

Yeah it was awful

rules4all442 karma

Good to know you are recovering. When you say, that you facing challenges with regards to physical movements, did it also affect your verbal communication? Did your voice get altered a bit? Etc...

miraclman31486 karma

Yes slurred speech

rules4all221 karma

Oh... Is there any improvement on that front as well? And all the best on your recovery!!💐

miraclman31355 karma

Yes in every area thank you very much

lazykid346 karma

Are you turned off from heroin or do you still crave it?

miraclman31941 karma

Turn off 100% it is the devil

crudcrud320 karma

Really curious where your mind goes for months on end? To what degree was it boredom, anxiety, acceptance of situation, etc? I've sat in a dark room by myself for hours, but I can still scratch if I have an itch, or get up to get a drink if I'm thirsty. Really wondering how your mind adapts to the situation, and how your perspective changes? Any thoughts on consciousness that arose from your perspective? thanks

miraclman31585 karma

There are so many adjectives to try describe this, I have been searching but there is not one word that can captivate everything.

I mean there are several adjectives that can describe it but I have been searching for one that can really captivate it with no luck yet. It is unbelievably alone, sad, scary, depressing, and it feels like time standstill. It’s so helpless to have people talking to you and saying if you can hear me blink or Signal and then not be able to it is so helpless.

Humans adapt you do to some degree what other choice do you have

Advo96311 karma

Where you fully awake or in a dream-like state all or some of the time? I cannot imagine how torturously it has to be to be immobilized but fully conscious.

miraclman31272 karma

Was a even Mix

OversteerCentral297 karma

I want to give you a big hug for beating this. Onwards and Upwards.

How did you realize you were going into lock in syndrome. Also, what were the first signs that you were coming out of it?

miraclman31368 karma

Thank you for the hug!!

This thing was a very fast rapid decline. I went from a able-bodied 28-year-old highly functioning to bed ridden in three months. It was not until the end of October 2017 right after the picture was taken of me that Picture was taken of me with the van the later that I realized no one knew I was still in there

sexygoat69420181 karma

What did you see, while in comas?

miraclman31353 karma

Seemed to have a view of the entire room, at times I actually had a view as if I was on the ceiling. When I came out of the coma and just was locked in I could only look at the ceiling

soulfulbutton166 karma

How are you doing now?

miraclman31427 karma

Medically I am great same with emotionally. The physical part is where I need a significant work. Relearning how to walk is my biggest thing. Due to the inactivity experience from My coma and hospice if left me severely contracted. Getting my hands and feet back to a functional position is the biggest challenge. They did not even think this would be possible but so far so good

ParaIlax165 karma

Did you slowly gain back control and alert those around you that you were conscious, or did it all come back at once?

miraclman31253 karma

I was always alert but I cannot express it The muscles to work and my face took six months to work somewhat normal I still have a long way to go

ittlebittles118 karma

Did you have panic attacks? I feel like I would have them so bad my heart might just stop. Did they keep you sedated in any way or meds to keep you calm? I’m getting anxiety just thinking about what you went through.

miraclman31279 karma

Yes in the ass but there was no medication for this feeling

prettybunnys483 karma

I'm sorry you are saying you had panic attacks in your ass?

miraclman31428 karma

No LOL I meant to say yes and yes damn Siri

miraclman3198 karma

Sorry yes and yes

slightly_mental73 karma

excuse the blunt question. how did you not go insane after spending a long time immobilized but aware? i would think that i would lose my sanity very quickly.

miraclman31111 karma

I did but I kept my mind busy and knew that I would recover. I refused to believe what everyone was saying

googlyIs65 karma

Did you experience depression while in your coma like state?

miraclman3186 karma

Yes

TotallyNotAlex2063 karma

After seeing and hearing could you think? Could you make up stories and dream up random things? Is there a random joke or a story you could tell us what you came up while in coma?

miraclman3196 karma

I could absolutely think. I was very active in my own head

ssglicken59 karma

How long after you stopped chasing the dragon did this happen to you?

miraclman3189 karma

I was off and on, The bad batch got into my system and slowly I got sick

meetMayra40 karma

What is "slowly"? I'm slightly freaking out because when I used I also smoked it on foil. I'm coming up on 10 months clean so my mind is racing wondering if this could happen to me.

miraclman3172 karma

It only took one bad batch that made me sick over months until I was nearly dead

miraclman3171 karma

I can tell you from experience it is not worth it at all. There are so many awful things that can happen. Be happy and content with the simple Things in life

ezjoz55 karma

How did other people realize you were conscious?

miraclman31115 karma

No one realizes for way too long. some of my family realize I was in there by my eyes some doctors begin to agree

miraclman3141 karma

Remarkably I could Think extremely clear but it was so sad seeing my family don’t know if it was OK or even there. I had a general sense of time if that makes any sense my internal clock was still functional

joevilla136940 karma

Did you get itchy?

miraclman3181 karma

Oh my God all day every day

AllDayTimeToLowRemem39 karma

What was it like “waking up” and finally communication, and people realizing you were no longer in a coma?

miraclman3168 karma

Well it was not like I woke up one day it was just fine there was another eight months of not being able to communicate

shopcat24 karma

Have you seen the movie Awakenings, with Robin Williams and Robert De Niro?

miraclman3122 karma

I don’t believe so

shopcat13 karma

You should totally watch that.

Edit: oops, as others have pointed out it ends on a sad note. I should rescind my recommendation. I was just remembering the happy and heartfelt scenes. I'm totally cringing. 😬

miraclman3112 karma

Will do thank you

LethaCoast20 karma

As a nursing student: What behavior of the nurses helped you getting trough this mess? What did not help?

miraclman3122 karma

Nice relaxing tones, taking the time to learn the communication system, patient’s

TheBronzeAlpha20 karma

What was the initial reaction to you telling people you've heard everything they said? Also, How long were you in this pseudo-coma?

miraclman3126 karma

They where are shocked. That’s when we realized I was never in a real coma

JayBird954017 karma

Who talked the most shit when you were in your coma?

miraclman3145 karma

Random emergency room people

Lol_A_Gernade16 karma

Do you have any plans on being an advocate for people with heroin addiction? You have an amazing story and I’m positive your story alone will scare the addictions out of 90% of people. Props to you.

miraclman3122 karma

Yes that is one of my many plans

zebrapoodle239 karma

What drugs did this to you?

miraclman3113 karma

We don’t know for sure something I smoked which was a lot of different things, Best guess heroin

Inquisitive_Rainbow5 karma

First of all the fact that you had to add proof is a bit sad cmon internet. But was there anything you heard while you were in the coma that you just wanted to get up and scream at the people for saying.

miraclman3114 karma

I had a caretaker who walked into my room and said I don’t feel like brushing your teeth today and then walked out

eqleriq2 karma

How did withdrawal feel / get handled while you were in a coma, both on your end and the hospitals? were you locked in your head screaming for heroin?

miraclman313 karma

I had A four month downfall of getting to the point of a coma. My withdrawals lasted three months but I had much bigger things to worry about after the physical stuff

SharkDiver2 karma

Assuming you were not loving life before this happened ie. using heroin/other hard drugs. After this crazy thing happened to you do you have a different view on life? If you could go back and say one sentence to yourself pre coma what would it be?

miraclman314 karma

Cherish the little things in life

Much more of a appreciation for everything now

_selva_2 karma

How does it feel right before entering in coma?

miraclman313 karma

I was so sick by then nothing Felt good

macsta-25 karma

Unconvincing proof

miraclman3110 karma

What else can I tell you?