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.
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?
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.
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
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
Were you able to move your eyes at all to communicate during the coma?
How are you now?
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.
How did you stay sane? Where did you place your mind, to keep from losing it?
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.
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?
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
If given the opportunity, would you have preferred to have been euthanized? I hope this isn’t overstepping, I’m genuinely curious.
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
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.
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
How are you doing now?
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
Did you slowly gain back control and alert those around you that you were conscious, or did it all come back at once?
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
Were you awake the whole time? Did you dream at all? Did you feel any pain or felt any physical touch?
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
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.
Yes in the ass but there was no medication for this feeling
So like sleep paralysis but for 2 years???? wtf i had that shit for like 3 mins and thought i was going to die.
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
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...
Yes slurred speech
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?
I could absolutely think. I was very active in my own head
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.
Was a even Mix
What did you see, while in comas?
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
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.
I did but I kept my mind busy and knew that I would recover. I refused to believe what everyone was saying
Did you hear anyone trash talk about you?
Edit:Thank you kind stranger for gold! Holy shit 3.7k updoots! ;) I'm shaking lmao
What was it like “waking up” and finally communication, and people realizing you were no longer in a coma?
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
How did other people realize you were conscious?
No one realizes for way too long. some of my family realize I was in there by my eyes some doctors begin to agree
Are you turned off from heroin or do you still crave it?
Turn off 100% it is the devil
How long after you stopped chasing the dragon did this happen to you?
I was off and on, The bad batch got into my system and slowly I got sick
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.
Yes that is one of my many plans
What was the initial reaction to you telling people you've heard everything they said? Also, How long were you in this pseudo-coma?
They where are shocked. That’s when we realized I was never in a real coma
As a nursing student: What behavior of the nurses helped you getting trough this mess? What did not help?
Nice relaxing tones, taking the time to learn the communication system, patient’s
Ok, I know this probably won’t get answered, but hoe did you get out of it? I know you said in one of your other comments that your wife noticed your eyes moving, but did you just wake up one day and realize you could look around? Did you slowly start being able to look around? What was it like when they first realized that you were still in there and had been the whole time?
I’m not sure only my eyes were able to track nothing else moved. When people finally started to believe my wife it was a oh shit moment. I felt relief and excitement I thought just maybe it will get out of this prison
Who talked the most shit when you were in your coma?
Random emergency room people
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?
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
Was the talk of being brain dead ever definitive, to where there was talk of pulling life support or insurance giving your family a hard time?
There was talk about withdrawing life-support because there was nothing else they could. Nothing about insurance
What was the first thing said/ wrote when you had the ability to?
Verbal or nonverbal? After I learn the vowels I said I love you
What country/hospital were you in ? Because brain dead / pvs / and pseudo coma should be easily differentiable with proper examination. i would like to avoid them as hell.
Spalding rehabilitation hospital also save my life
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! (:
Hello nurse, Be patient with nonverbal patients. Hey Caring calm and nice Most people are having the worst time of their life, try to understand that and sympathize and do everything you can do to make it better
Do you think the first movements that you managed to do in order to communicate were possible due to your will power ?
I've always been curious where lies the border of the mind's power in paralysis situations, for example, would a person like Wim Hof; extreme body control specialist (sat 2 hours in ice water, climbed the dead zone of Mt.Everest in shorts) be able to "overcome" paralysis relatively fast, thanks to his mind-body connection and sheer will power ?
In another thread, you noted people trashed talked about you. Did you confront any of them or just let it go? If so, how'd it turn out?
I let it go
How are you writing this AMA? Have you recovered partially from paralysis, or are you using an assisted writing device? Also congrats on making it out :)
A culmination of Siri as well as my right hand
Did your wife ever try and be sexual with you?
Yes, I will go into more detail later
This is a weird question but did you get erections?
Funny you should ask that that was the only other part on my body their work aside from my eyes and ears so yes I did LOL. Not weird at all for you to ask
How are your relationships with others after essentially no communication with them for months?
I would say really good. I am being the best person I can possibly be and I am enjoying every moment I can converse
What drugs did this to you?
We don’t know for sure something I smoked which was a lot of different things, Best guess heroin
Are you American? Who paid for all of that care? What did it cost? I've always wondered how anyone in the US could afford to survive that long. Legit question if you're in the US.
Very good question yes I am a American I am fortunate enough to live in the state of Massachusetts where we have excellent health care
How did they deduce you were in LIS and not braindead? I saw in House that they attached a machine with lobes to your head and could answer yes/no questions with it. Was that what they did?
My body begin to wake up i Had minor movement in my right wrist Also Simultaneously I could blink
Could you move in your dreams? What did you dream about? Was there anything good that came out of this for you?
Sobriety and a great appreciation for life also in my dreams I could run on the beach
How did they figure out that you weren’t actually brain dead?
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?
Cherish the little things in life
Much more of a appreciation for everything now
Have you seen the movie Awakenings, with Robin Williams and Robert De Niro?
I don’t believe so
Was there any sense of time? Did it feel like forever or fast or the same?
There was but even one day feel like one year
How is it possible they thought you were braindead if you were conscious? A brain scan of literally any kind would have revealed activity.
I am only today confused by this I know they did say that to my wife but I think they meant there was no way my brain could function to Think. But maybe it still had oxygen and blood flow. I also do know they said there was no activity. I am seeing more information on this my neurology team said this is unreal no one will even believe it.
Really weird question: did you control how you pushed your poop out? Or did it just come out on its own or was it liquid or what? They obviously have a catheter in for pee but they can't really do that for poop.
My main issues are ordination believe it or not it is hard to push poop out when you’re on uncoordinated only weekend control over my bladder and bowels six months ago thank God for that
Were you able to keep up with world news based on what your wife talked to you about? If not, what was the most surprising thing to learn happened?
Also I'm glad you're doing a lot better!
Not so much with the world news. Family fighting that took place
What would you advise to say to a close person who is in this condition?
Talk to them as if they are there... calming tones
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.
I had a caretaker who walked into my room and said I don’t feel like brushing your teeth today and then walked out
Have you ever used psychedelics? I have heard people in comas describe the out of body experiences as similar to some psychedelics. Did you experience this?
Yes I have and yes I did at times more craziness than the most intense hallucinagine
Late to the party. So 24 hrs a day you were conscious? There wasn’t any period where you went unconscious as in some sort of a sleep cycle?
There were times where I was “sleeping“ or unconscious but overall I was awake
What was it like when you first became aware and realized you were "locked in"? I can imagine feeling extremely anxious about wanting to do something, but not being able to.
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
What was the most shocking thing you remember hearing while locked in? Very glad u ma3d it out to tell your story.
With drawl of life-support He is brain dead and only has hours to live
Is there anything satisfying about being in a coma or is it truly like a prison sentence filled with anxiety?
The worst prison imaginable also it felt like I was getting tortured with the amount of pain I was in
Can't believe no one has asked this (at least I haven't seen it). Did you ever feel an itch or a sudden need to move/stretch or something like that?
Yes unimaginably uncomfortable
Sorry if asked but would an MRI or brain scan or some kind show activity that would rule out being brain dead?
There is something there are learning “their are brain cells they cannot detect
Do you have anxiety or PTSD following that experience?
Anxiety yes but I can now calm myself down in those times, no more than I used to have and I have far less issues then
Could you sleep? Did you experience any dreams, and what were they like? How long do you think you slept per day?
Six hours or so but it was not relaxing sleep at all
They have specific tests to make sure someone is actually brain dead. Did they perform these?
Yes they did but there is so much they don’t know about the brand so I am not sure how reliable those tests are I copied a link to a new downs article somewhere in previous comments about covert brain activity
Are you afraid of falling asleep and not waking up or being locked in again?
I made a decision that I would not be scared of anything did you with my health what will be will be. I believe that I am here for a reason so I think I’m good
Was it like you were acutually awake or more like a dream?
I had both extremes
Wow! Such an amazing story. For about a year I would periodically black out and wake up with stroke symptoms. The blackouts lasted under 5 mins (Thank God bc I wasn't breathing during them) but I was completely conscious and aware of what was going on while I was "unconscious." It was terrifying and made me absolutely aware that Locked in Syndrome is a real, terrifying thing. Every time I blacked out I was super afraid I would not wake up like I had the previous times and either die from it or be "in a coma" like you were. It also made me realize that most people probably have 3 mins+ of consciousness after they "die." It also convinced me that something akin to a "soul" exists- I was stripped down of a lot of brain function during the blackouts, but there was still some sort of conscious "me." It's hard to explain.
So here are my questions, and I'll read through to thread to see if you answered them elsewhere- Has this experience changed you in anyway? Personally, spiritually, etc? Have your relationships with close friends and family changed?
I am still rehabbing from my ordeal- what has your rehab journey been like? Do you have any lasting deficits? What was physical rehab like, after being in a bed for months, and are you done with that?
Thank you for sharing your story! Good luck on your continued recovery!
Yes it has changed me in many ways for the better I do have physical deficits that I will overcome. It takes a lot of work and dedication but I will get there
I hope your recovery goes well thank you
Did you ever have a song/songs stuck in your head, if ao which? And was it a blessing or a burden?
Yeah a railroad earth song called long way to go
You’ve been in a coma for 2 years?!
Three comas over four months been in recovery since July 4, 2018
When you cycled through sleep and wake states, was it a new shock every time you woke up? Like would you “sleep” good enough that you’d forget when you became conscious again and have a panic attack the first few seconds after waking?
That would be the worst to be that way but still able to sleep and wake only to realize it wasn’t all a dream and you’re right back in that bed.
Additionally this changed my entire outlook on pulling the plug. I couldn’t imagine pulling the plug on someone I love and living with the idea that if you had waited maybe 5 more minutes they would’ve come back. Glad you made it through!
Yeah during this time I was always freaking out. Thank you yeah whenever i came to it was a reminder that this was really happening
Where you itchy?
So itchy oh my god it’s unreal how much A itch can cause discomfort in pain
Did you have any moments of feeling happy? Like what someone said, or a funny conversation you heard? Even if it was for a few seconds while being in a pseudo coma?
Not until I could communicate with the letter board I was very lonely scared and sad
Dude, could you laugh while locked away? Like in your head?? Also, did you feel like you REALLY needed to yawn, but couldn’t?! What about a stretch, was that bugging you?
When I was truly locked in there was nothing but when I could use a letterbored all i could do verbally is laugh or cry
I'm a recovering heroin addict myself. First it was off tinfoil then got married to the needle. I had a relapse last November then had a siezure after 2 months clean(been straight since January) they can't find anything that may have caused after multiple CT MRI EGG. Was that the case for you too? Like did you have any symptoms from before? Or were you just blindsided. By this all?
Yes sorry to hear about all this. Nothing aside from waking up with a balance issue and you a different voice I really cannot believe it
I’m very happy that you’re doing better. Can you describe how you felt? My mom was said to be brain dead and we let her go after a week, I’ve read stories like yours and it makes me wonder if she really was...
I am very sorry to hear that... it is so hard to say... they don’t know everything but they do know a lot. It also depends on how immense the suffering is the thing that’s odd but my case is thatvfor some reason I would not die
How did you pass time?
That was very challenging I was stuck in my own mind. I would do things like math and geography. I would listen to doctors and nurses very closely abut my medical status
I’m a little confused. If you were able to see, but couldn’t move how did you open your eyes to know you were able to see? I’m sorry if that sounds rude I’m genuinely curious!
For some reason when you are locked in you can only make vertical eye movements. No not rude at all
Were you hella bored while being locked in?
Yes and I was sad and I was in pain
How bad was the physical atrophy? Did it effect you psychologically? What are some things that you had to not just rehab in order to be strong enough to do again, but had to totally re-learn? Were you able to talk/how long did that take to regain?
Basically how’s the physical recover going?
The worst imaginable my ankles were -65° my hands were clenched into my palms so bad that my nails dug in. I could not move anything at first within appeared from July to December I had minimal movement and was making unintelligible sounds. I begin to say words in February of this year
I just read the book "Johnny Got His Gun" and it changed my life as a healthcare worker. We are always taught to assume everyone is listening even though they may not be able to reply back in any way. At what point (s) did you feel the most frustrated?
When I began to use a Ledger board a lot of people would not take the time to really understand me. Also during this whole process they were specific ways I would need things done in order to not care they would do it their own way because it would be faster but that would end up hurting me
So when people are in comas do they just see darkness or do they have long dreams or different dreams?
I think it is different for me because I was in something different when I was not hallucinating I just saw the room
I wonder about your insurance situation if you live in the US. How much has this illness cost you and will be be able to work again at your previous job?
I do live in the United States luckily I am in Massachusetts where the healthcare is top-notch. I am on mass health and Medicare it takes virtually all of my social security money I believe I owe only about $5000 so far. Are used to be a chef I plan on working again but not in the field
Woudnt brainscans reviel a lot of activity?
Surely responses would be measureable.
I mean, even if the signal isnt transfered to the limbs, telling the arm to move would show up on a scan, so such basic communication should be posible. Making asking yes/no questions and stuff like that.
Honestly I am unsure I know my wife told me this in there remember hearing them say there is nothing else we can do you will never come back
How does it feel right before entering in coma?
I was so sick by then nothing Felt good
If someone doesn’t have medical insurance how much would something like this set them back, money-wise?
Sadly I do not know the answer.
You claimed people (doctors I presume) thought you were brain dead.
Thinking, visual stimuli and audio stimuli would all show up on medical imaging of the brain and prove you were not not-brain dead.
Did nobody do medical imaging on your brain before making "brain dead" claims?
All I know is what Neurology had told me. One of my many doctors helped publish this article
Obviously I was not brain dead They told me they could not detect anything
Would you consider yourself a patient man?
In my previous life absolutely not but now as my former occupational therapist says you have the patience of a saint
Do you had to deal with the heroin withdraws symptoms while you were in coma?
No that was all pre-coma
When you say you we’re conscious the entire time, do you know if you “slept” at all?
No I did what I mean is typically I was coherent
I just watched an episode of House called LOCKED IN that sounds like what you went through. Have you watched this before? If not, you should. It's on Amazon Prime. I'm curious as to how well you think they portrayed the situation.
Wow I love that show
You said you could see the entire time, did this include night, did you blink at all? We're you able to sleep or just sitting there conscious 24 hours a day?
That is a good question yes I could see you at night, I had periods of going in and out
If you don’t mind what made you initially become addicted to opiates?
Your cerebral scans showed brain death even with you being cognizant??
I do not know where he exact details but I do know they told my wife this on Christmas 2017 and that I would be dead before New Year’s Eve 2017
You operate Reddit very well for having been comatose for so long. We're you on Reddit prior to your illness?
Thank you I try very hard
Did you feel calm and tired / was life like a movie you watched or did you have strong negative emotions like feeling trapped, suicidal thoughts, panic?
No I was not come at all, because I had autonomic storming I was in so much pain with a lot of serious symptoms. Aside from all that I was feeling panicked all the time and trapped. So many negative thoughts and emotions but not really thoughts of suicide. Eventually I got to the point where my attitude was like “no fucking way am I going out like this”
How did you stay sane? The boredom would drive me crazy.
Who is says I am sane lol... I do not know but you do adapt get used to living inside yourself
If you could blink, I wonder if it would’ve been possible to teach you Morse code while in the pseudo-coma state as a form of communication?If it is possible, it could be used to communicate in treatment and possibly spend up recovery.
What did you want to do most once you woke up?
Everything I really want to do do I still cannot do. Conversing mainly. I really want to go on a picnic when I am able
How did breathing work when you were under? How did you sleep?
do you have any form of PTSD from this? if its way to early to tell, do you think you have a chance to develop it? thats always been my personal fear of a situation like this.
No amazingly I am OK
if this took place in America then there is almost zero chance any doctor would think you are brain dead. perhaps you are confusing it with persistent vegetative state. brain dead IS dead by law. you would have no reflexes or blood flow in your brain. especially if your claim of being fully aware the entire time, any brain scan would have shown activity and blood flow, you would also have pupilary reflexes which would be tested.... every medic on every TV show shines a light in a patients eyes
Im not calling out your story as complete BS, but the part about people thinking you were brain dead is extremely unlikely. congratulations on the recovery though. you should read butterfly in the belljar . its written by someome who had locked in syndrome from a stroke.
HERE IS MY QUESTION : when was your official diagnosis of brain death? is there any proof of documentation of your claim?
Yes it did in Massachussettes mass General Hospital. They told my wife this in December 2017 and that there was nothing else they could be done they said there was no activity. Obviously I was not brain dead but I don’t think they could see anything.
One of my doctors was involved with overseeing this article
strange question and prob will get lost in the comments, but were u also feeling physical withdrawals while u were in the locked in state?
All that was prior to me being locked in
Did you question reality? If so how so? What did you learn about reality, life and all things from this experience but especially about reality as you now see it?
That there is more good than bad in the world I didn’t used to think. Positivity and willpower is a real thing
When you say "brain dead", did they do brain death tests? What do you mean by the statement?
Yes they did they said he found no activity earliest that’s what they had told my wife, they said there is nothing else that can be done
Prolly too late but...
What's the best thing VS the worst thing you heard during your comas?
The best news was when I found out I was going to Spaulding rehabilitation Hospital The worst news was when I was told I needed a trek
Welcome to the world again 😄 Do you experience any other sounds than your thoughts when you're in there?
Thank you it’s good to be back... The usual background noise also fluorescent lights had a nasty sound to them
Did someone touch your penis while you were in coma?
You mean other than my wife?
have you read "Lock In" by John Scalzi? you def should.
I am going to thank you
Did you have PTSD and how has it impacted your life now (if you have PTSD)?
Believe it or not I do not.. I think it’s just because of everything I’ve been through I am so grateful
This has probably been asked but were you ever worried you'd lose the senses you did have like sight and hearing?
Actually no I have never been asked that question before! At the time that never occurred to me! I guess I was scared of everything but I never really had that thought. As I begin to recover of my senses became out of whack. Like for example my sense of taste went from nothing I could taste was bland then for two weeks or so everything taste metallic and then like hot sauce.
What’s the most important thing you learned during that time?
Life is precious all aspects enjoy what you have you never know what can happen tomorrow
Does this prove that God exists, to you?
I am not sure but I think so I definitely believe in a higher power over some sort
Why did they assume you were brain dead when one would think they could monitor brain activity? My brother was in a coma a few years ago, and they did a brainscan while they were trying to wake him up. The scan found severe braindamage (dark spots on the brain, they said). Sadly he never woke up, needless to say.
Edit for spelling
Sorry to hear that. How long?
Sorry kind of late, but what was your day to day life like? Idk if this is a fair question because I have no idea what you've had to go through, but if no one even knew you were there then it was probably a pretty boring time with nothing to occupy yourself.
I’m not sure if I understand
So you have a wife and family and you were also a heroin junkie? Do you think a coma is karma for being a piece of selfish shit?
Not exactly.. just because I was a addict does not mean I was a piece of shit. I had a good job was good to my family etc..
We’re you able to close your eyes while sleeping?
How long would you sleep for to pass time?
Edit: also how were you able to use the toilet (idk what term to use) when you couldn’t move?
About six hours a day not sure I am looking into this
Did you ever lucid dream?
There were more like really intense hallucinations
Did you hear anybody say anything bad about you? What did they say and how did you feel about? Were they people you didn’t expect to say such things?
The percentage of hospital staff that said bad things Was not much overall considering I had so many people involved with my care for so long
I'm just wondering but how long were each of them? If you were told.
I was told they were each about one month I am seeking medical Records to confirm the actual amount of time
How could they think you were brain dead if you could move your eyes?
I have been told after the fact that they could not see any activity they could only move vertically
Another comment made a joke about "send nudes" so I'm wondering if you had any libido?
LOL yeah I saw that really funny and yes I did that never change for me
Did you ever sleep? I feel like that would be more boring than anything
I have times where I would pass out aside from being bored I was consumed with pain
After a lifetime of bad choices, irresponsible behavior, probably criminal activity to support your drug use...
How have you shown gratitude for the lucky break you got and how are you working on making sure you deserve it an earn it in a world where kids who never have the chance to huff heroin with their junkie friends die of starvation or horrible diseases that aren't their fault that western medicine and wealth won't swoop in and save them from?
What are you going to do with your time to earn this?
Help others not make the same mistake as me
May be a stupid question, but were your eyes open the entire time? Or would they close when you slept?
I am unsure I will need to ask some family
Did you try using the blinking as communication?
Eventually yes Blinking my eyes meant no, sticking out my tongue meant yes
Sorry i kinda am going full brain fart what is chasong the dragon syndrome?
It is smoking off tinfoil free base
GOD DAMN SON. DOCTORS NEED TO STOP SAYING SUCH THINGS RIGHT IN FRONT OF YOU. WTF...
Do you feel like you dodged a bullet?
There was a lot of talk in front of me because they thought I could not hear they really need to keep all negativity away
Do you dream in a coma, or does time just skip like a dreamless sleep?
Dreams and vivid hallucinations
Could you tell the passage of time while in the coma?
Each day feels so long each minute
Did anyone spoil your favorite show or a movie you were looking forward to seeing?
Nerf really I was preoccupied with other things
I have always thought that anyone who tries heroin wants to die. Am I wrong?
Yes you are wrong they want to get numb to ask you no more feelings and emotions to get less depressed for in the meantime
What caused you to turn to drugs?
Miami am other day when I was young that caused me do you have insomnia I tried everything one day a tried Oxy end it gave me the best sleep
During the time the doctors thought you were brain dead, did they do an EEG? If so, what did it show (as specific as you remember)?
The following is all MRI information:
Multifocal symmetric confluent T1 hypointense, T2 hyperintense, cavitation throughout the subcortacle White matter in the bilateral frontal, parietal, occipital lobes as well as in the bilateral cerebral hemisphere, putamen, cerebral peduncles and medulla. Similar signal change in the Corticospinal tracts into the medulla
I know you asked about EEG but this is all I have for now.
Did you have any residual problems for which you needed Physical Therapy?
Did the experience change you significantly afterward? (Not just physically, neurologically, etc., but as a person, as a husband, spiritually, your perspectives, likes/dislikes...)
Not that doctors may have had any way of anticipating this or diagnosing it — I mean, medicine in general still has many unknowns, and with brain injuries especially — but did/do you deal with a lot of anger about your experience? I can only imagine how frustrating, bewildering, and crazy frightening it must have been, feeling trapped with no way to signal for rescue. Guess it just took that much time for your brain to heal?
You really are a walking miracle. I’m so relieved for your family and happy for you that you’re still here to love and be loved by them!
Thanks for answering questions, and my very best wishes for you as you move forward. May God shower you and yours with His continued blessings every day, every month, every year. It’s so exciting, really! You were restored for a reason. Enjoy it, cherish it, appreciate it, and live it to the max!
Yes I need extensive physical therapy occupational and speech I have to relearn how to do everything which I am in the middle of You can see examples of this on my YouTube channel
This experience has not only made me sober but also have a big appreciation for all aspects of life. Even with all of the pain I’ve dealt with I find joy in the small thing.
Yes I had many emotions and there are many adjectives to describe them Anger, sadness, scared, lonely, depressed. Also excruciating pain and many more
Thank you so much I have a new mission in my life to help others in many ways
Have friendships or familyships been ruined because of stuff talked about you that they thought you’d never hear?
Not yet LOL. I’m just brutally honest I don’t think anyone has a problem with that
I have a couple questions: 1) was there ever a point where you thought you were going to die, or were dead, but weren’t sure? 2) was there any way for you to show reactions? Examples are like crying when your sad, or laughing a little when you’re happy, or was just completely motionless, even if you wanted to show it? 3) how did you feel when you were finally able to move and talk again? Did you and your family celebrate? 4) not a question but I’m SUPER happy for you. congrats!
There were times where I thought I was going to die in the beginning when I was in neuro ICU. Around Christmas 2017 he said I would die their night I was pretty sure they were right. A few months later I was sent on home hospice care, One night they told me that I had hours left they called my family in to say goodbye later that night my whole body turned blue, at that moment I felt like I was going to die. I eventually close my eyes to my surprise I woke up the next morning. After I survive all of this I realize I wasn’t going to die.
When I was in the ICU oh could not show any motion, later on hospice for some reason I could cry but that was it. No movement at all.
I remember when I first lifted my own arm, my occupational therapist almost cried. Reallylearning how to speak was a long process that is still ongoing but when I could say my first few words in my made my first sound, this was very exciting. There was celebration for sure.
Thank you, it is very exciting. I can’t wait to get back to “normal life“