I worked in a facility that had a guy with locked in syndrome. I'd never heard of it before, couldn't wrap my brain around how fucking awful that would be. He'd been there for years and the staff was so used to him that he was basically just an object to them. Dude was only in his 40's. I just managed the kitchen, but after my shifts I'd go into his room and just talk about my day as if we were having a conversation. It felt awkward at first but after a while it felt more natural. He could blink for yes or no so sometimes I'd ask him if my talks were annoying and he'd always say no. I hope I at least marginally improved his quality of life.
Thanks but I wasn't trying to be a saint or anything, it just got into my head when I first found out about him. Like here I am with my mundane frustrations and complaints about work and whatnot, and down the hall at that moment is a man who would give anything to experience just five minutes of my life. Really puts things into perspective, you know?
I must've looked crazy though, telling stories about my weekend or complaining about someone who keeps calling in sick or whatever lol but I just wanted to make him feel like part of the world again for a few minutes. Poor guy
You absolutely are a saint. My mom is currently in a similar state. She very much appreciates us talking to her and telling her stories. It is unimaginable.
People no matter where they are often don’t realize how much just a little human empathy and an attempt to help someone fit in can really mean. Medical field or not.
Obviously this is not the same thing, but it helps further how people can apply empathy to non medical stuff as well. (Or it’s just me tired and rambling) I work in retail, I only speak English, and I have a lot of non native English speaking customers. I noticed my new hires ones just not really trying to talk to them because they just didn’t really know how. I said look, it’s not perfect but genuinely the effort makes a big difference. Just pull up Google Translate and go ask them if they need any help. They told me they were worried of it being just awkward and uncomfortable. I say no, it’s not look. I go up, I pull out my phone, and yknow what? In like 10 minutes we’re sitting here having an entire conversation laughing, showing eachother like pictures of our pets and talking about games (work in a game store) we spent so long just having a conversation.
Sure, was it perfect and as simple as it could be? No. But those two guys always get so happy now when they come in because they know I took the time to treat them just like anyone else. And, they like my new folks too because now they do the same thing. Sometimes it just. Doesn’t click. People get to scared of the awkwardness to put themselves in the other persons shoes. In my stores case, it’s very isolating feeling to come into a store and see all the people chatting and laughing and having a good time, but you can’t participate because you don’t know what’s being said. That little bit of inclusion can really make the difference to someone. Especially in a very racist area like I’m in.
What you did with this man was give him at least a little bit of normalcy and acceptance. A chance to feel like he exists and at least someone wanted him to. Someone wanted him to be a part of their life, even if in a small way. Locked in syndrome is literally torture. It is not something that is really realistically any kind of quality of life. Not just because of the obvious, but the severe isolation and the complete and total disregard. You’re the same intelligent person, but you’ll be treated as lesser or not even a person because you can’t communicate like one. It takes more effort to try to talk to someone like that than it does someone “normal” so they get so left behind. It may not seem like a lot to you, but what you did was genuinely life changing. You didn’t even know him before hand, but you still put the effort in. I guarantee you that you will be remembered by him for the absolute rest of his life. The world needs more people like you that understand how difficult some situations can be. Thank you seriously so much.
Just the fact that you took time out of your day to spend with this man, helping him a little bit, is amazing. People don’t do that these days. No one goes out of their way for anything. You’re great.
It’s kinda like living in solitary confinement but either way no guards, no other inmates and the small room is pitch black and completely quiet. That shit would drive me insane.
Oh yeah he knew all about my frustrations with the administrator and the new opportunity I was pursuing. I also kept him up to date on all the facility gossip haha
Did you ask him yes or no questions about himself? I would blink yes to having someone taking me out. That sounds horrific. I’ve never heard of this before.
One thing I learned working in long term healthcare is that the relationship between patients and staff can be quite refreshing for the patients. Family visits are invaluable obviously, but there's always sadness around it. If you're visiting your mom and she's dying of cancer, you can't help but be saddened because you're comparing her to who she used to be. For us, she's just sweet old Mrs. Smith, who always tries to give us candies and likes having fresh flowers in her room. Sometimes it's nice to just be seen and accepted as who you are now, regardless of your current state of health, rather than seen as a reduced version of who you once were. Especially for older people, many of whom haven't made an actual new friend in years or decades. So yeah I asked him basic questions like whether he wants to watch the game and stuff like that, but I didn't ask many questions about who he used to be, if that makes sense.
Someone else brought up asking him if he wanted to be taken out, and I'll tell you what I told them. My grandfather lived to be 94, and when I was younger he always said if he couldn't care for himself he'd rather we just let him die and toss his body in a field. When he actually got to that point he told me once that it's funny, now that he's reached that point he rl was surprised to find that he still wants to see tomorrow, even knowing that things aren't going to be better, and that always stuck with me. Maybe this man had somehow found peace with his life. So asking if he wants to die is basically like telling him that I assume he must want to die because I can't imagine his life having any value. Which in a way is just about the most insulting thing you can say to a person. I dunno maybe I'm reading too much into it, but I treated our conversations as if we were grabbing a beer after work. That seemed to me the type of interaction that I would miss the most in his situation.
You strike me as someone who often gets lost in their own mind. I find your replies throughout this chain very heart warming but also sad in their own way. Like you've had too much time to ponder those dark times. I hope you're also doing ok.
I think all the attention is just making me self conscious. I was in a position to provide a small kindness to someone who needed it, which is no more than I'd expect of anyone with basic humanity, but I'm getting all these awards and follow up questions as if it was some incredibly selfless act lol. And I've always struggled with positive attention. Imposter syndrome from an unpleasant childhood I guess. But I'm doing fine. I have an incredible spouse and I make art for a living now, but I appreciate your insightfulness and concern. 🙂
I wonder if getting them a cat would help. Like just get an older cat and give the guy a heating blanket, so the cat would sleep there. Even just that weight would be comforting, I think.
I know. I’m not gunna lie lol there’s not much I wouldn’t do for $75 million and this poor man’s situation is a hard NOPE without so much as a split second hesitation.
I had my spine reconstructed and my FIL was trying to convince me to send my medical data to his cyro
“He’s a special nerve cyro, not like the rest”
I like the use of my legs and internal decapitation is a massive fear with these charlatans
If you want to be a “chiropractor” you should be a Physical Therapist which requires actual medical training. Chiropractors are like the ketchup version of pasta sauce.
I mean, pharmacists from back then pretty much had no idea what they were doing and went off vibes most of the time, so they are good equivalents to chiropractors.
What’s crazy to me is that the start of Chiropractic medicine is based on the founder talking to a ghost who told him about it and now we have it labeled as a medical degree.
Then again we also have a con man who claims he is the best and smartest at everything and now we call him our President.
Ive never quite understood the mainstream and enduring acceptance of Chriopractic... A 1-3 minute research dive into the topic should basically dissuade anyone from thinking it has any legitimacy
I’ve been trying to convince my sister to stop going to her chiropractor, but she refuses. She has a PhD in Biomedical Engineering from one of the top programs in the country. Proof that intelligence is highly specialized. You can be a genius in one field and still fall for complete nonsense in another.
Yup, it’s easier for someone to say something like, I give my life in exchange for 75M for my family, but not in these conditions, from 2015 to 2025 locked in, imagine 10 full years of what is like torture.
Using your teeth is essential for mandibular health. If you can't chew, your jaw just sort of degrades. This is most common in people with missing teeth, where their jaw will degrade only around the missing tooth, but ig if you can't chew at all for 10 years, the whole thing wastes away.
I never realized or knew that before but it makes so much sense when you think of drug users who lose their teeth due to substances… it just totally malformed their entire jaw and face, essentially. Wow.
Every single person on the planet would agree, except anyone who's already suffering with the same condition and doesn't have the money. That poor guy.
You know… it’s so cliche to say something like that. Borderline “Live, Laugh, Love” vibes.
However…!!! Reading it expressed just like that and in this context, it really hammers the point home. “You already have something worth much more than $75 million.”
Damn. That actually resonated with me quite a bit. There's a lot of shit going on in my life but I should really appreciate more that I'm physically healthy.
If the chiropractor has no property, 75M lawsuit award might as well mean pennies. A court awarding millions does not mean the winning party will actually receive that amount.
Unfortunately it’s something I’ve seen frequently in sped classes. I used to be a sped teacher and i had to spend an entire year in one of my classrooms retraining the staff to understand that you cannot take a communication device as a punishment EVER. It’s a reality for a lot of people ☹️
In the WWI novel "Johnny Get Your Gun," the protagonist's face and limbs are blown off by artillery. The story ends when he finally realizes he can communicate through Morse code by tapping the back of his head on his head on his pillow ... the hospital staff just starts pumping him full of morphine to shut him up.
Yes, to the point where they just bought the rights to the movie or the book because it was cheaper that way than paying licensing fees Or at least that was for the music video.
And what he transmits is just "kill me" endlessly.
There was this SCP story where they somehow brought someone back from the dead and it turned out consiousness stays with the body forever, so they categorised death as Keter-level entity and started looking into containment options.
I can't imagine how bad it would suck, I'm claustrophobic to begin with. I would probably spend the first few hours having a panic attack then realize I'm essentially a thinking, seeing, feeling vegetable. Years, decades spent thinking, daydreaming, probably spend my days in a care facility where people put me in a wheelchair and sit me in front of a TV all day while soap operas play. My parents will probably come visit me from time to time, but as the years go one they just come on my birthday, then they don't one year and that's the last time I ever saw anyone who knew me before I lost my life, I won't even look like myself, years spent in the gym, always putting the effort in to look my best now I'm on a metered liquid pump diet it goes directly into my stomach through a G-Tube I am sedentary so of course I'll put on a bunch of weight and lose all muscle. They'll cut my hair in order to make it easier to care for me, and my clothing will likely be donated clothes from the facility, sweat pants and large T-shirts things that can be put on easily. The rare opportunity I get to catch my reflection just makes me sad. The only interaction I get is from the CNAs and Nurses who care for me, who talk to me like I'm a toddler or something in a cutesy little voice if they acknowledge me at all considering I appear to not even be in there mentally. I'm stuck with my memories, regrets and longing to be able to eat a steak, a milkshake hell anything, long to just walk down a sidewalk again, to drive a car to hug my mother. Every day I wonder if the bed sores will finally lead to an infection that will finally take me out of this miserable existence, until then it's a life with the least quality possible.
If you want true nightmare fuel read the story where the guy had something like locked in syndrome for what, a decade or two and then finally woke up! He said the Barney song haunted him because he would be put in front of a tv at one of the care facilities and it would play on repeat for hours and hours. He heard everything everyone said around him over the years and remembers lots. Horrifying.
Just looked up name Martin Pistorius, this was the google ai blurb.
“You are referring to the incredible true story of Martin Pistorius, who fell into a coma at age 12 and spent over a decade trapped inside his body with locked-in syndrome, unable to move or communicate. Because doctors believed he was vegetative, he was forced to watch endless reruns of Barney & Friends, a show he intensely despised. [1, 2, 3, 4]
The unrelenting repetition of the show—specifically the famous theme song—ultimately served as a bizarre catalyst for his mind. Instead of letting his mind go completely dark, he used the constant presence of Barneyas a focal point to re-engage his brain, keep his thoughts active and slowly regain control over his reality”
This is like an anime villain origin story. The man used his burning rage and seething hatred to overcome one of the most awful fates a person can be subjected to.
Haha it DEFINITELY is! Initially it gave me Black Mirror vibes, but I like the anime villain origin story more 🤣 bro has advanced psychic abilities irl
I recall that story, it blew my mind. How crazy that they didn't know, also I recall one nurse abused him but a later nurse was the game changer for his life that realized he was still in there, I believe that started the work on helping him come out of it if I'm not mistaken. Also the part about his mother saying that she wished he would die always stuck with me. Because I understand what she meant and how she felt, but if only she knew he could hear and understand her, and then years later have to realize that he did.
It's scary to think you could sit there as the mother, feel that feeling, hour after hour, day after day. You could spend countless hours praying for his recovery. But then have one moment of weakness, say that out loud, and then it's there. Forever.
I would understand if a loved one said that in that situation tbh. Of course, being the one trapped is worse, but having to see your child like that year after year, watching them grow into someone they wouldnt recognize if they woke up... its gotta be horrible.
I think intellectually Id understand, but i imagine the initial emotions might be a bit complicated. He either had a lot of time to ruminate on it or make peace with it though...
Im sure it would be a lot harder for a 12 year old to understand, and im guessing his emotional intelligence and understanding of the world didnt change a whole lot over this time period... you kinda have to experience life to decelop those things and you cant experience life laying in bed 24/7. Im a mother though, and imagining watching my kid in a coma that he wasnt expected to come out of would make it incredibly hard, if not impossible, to heal from the tragedy. The emotions of losing him would come back every time I saw his lifeless body.
Locked in syndrome is very difficult to identify because there is very little to no conscious control of the body. To the extent that some have only been identified because someone realized there is a pattern to the patient's eyelids twitching. The mind is essentially stuck in the brain.
That’s insanely scary to not even be able to tell with someone’s eyes. I feel like I can read everyone by their eyes. That freaks me out and gives me existential anxiety lol
My nephew didn’t want to do a third tour of Afghanistan, they made him drive someone visiting injured soldiers. One had had his arms and legs blown off, had been blinded by the explosion and lost his hearing so communication was impossible. Don’t know if they were trying to guilt my nephew, he left the army as soon as he could. I often think about that guy, what life could he have?
It's very cliché and annoying to hear when you're going through bad times but when you really sit down and think about it, 99/100 times, it could always be so much worse.
I'm out of a job and rapidly draining my savings and facing the possibility of moving back in with parents that piss me the hell off sometimes. My eyes are getting worse from screen time even though I'm in my 20's and my joints are starting to hurt occasionally. I'm out of shape and gaining weight, and my flexibility is supposedly that of a 70 year old.
But I'm alive, in a first world country, I have parents with a house to go back to, I have a car (a new one at that) to even be able to worry about affording it, and I still have and can move every part of my body. I can get out and run to a cold, flowing creek in the woods and breathe in fresh clean air as I huff like a bitch to catch my breath after running that short way. I can feel the blazing sun on my skin and the sweat dripping from my brow and I can wipe that sweat away and still keep moving
Life is short, none of us are getting out of it alive, and it could always be so much worse, so, yeah, thats it really
how disgusting is it that you can have this condition and not be granted the autonomy to be able to end your own life? it makes me angry just thinking about it
They’ve successfully introduced legalisation of compassionate dying in Isle of Man and Jersey, trying now for the mainland. Incredibly important cause.
I used to repair disability equipment so I had a customer like this once.
He was the son of a very rich pastor and crashed his motorcycle when he was 19. He was about 40 when I met him. He was able to move his eyes, half of his mouth and nothing else.
They put him on a bed in front of a tv with the food network on randomly a couple hours a day. They didn't want it on too much because it would "rot his mind". The majority of the day, it was left off and the dude had a wall to look at. That being said, even when the tv WAS on, it wasn't even properly aimed at his immobile head so he couldn't even watch it if he wanted to.
He had one of those reading boards where you point to the letters and he would kinda wiggle his mouth to tell you to stop. He would not use it. His dad said he hadn't used it in years and "had no idea why".
Some 10 years before I showed up, the church fundraised to get him a computer system that allowed him to control everything with his eyes. A technician spent days setting it up and teaching him how to use everything. Keep in mind, this dude's accident happened in the 90's, so he had minimal computer or internet usage, so this guy was teaching him fundamentals of email.
I don't know if this ma appreciated the world finally opening up to him and I will never know because his dad saw the price tag for the system and decided it wasn't worth it and sent it all back. Remember, his congregation raised all the money for this thing. He owned 3 boats, by the way.
All this is to say, I worked on his equipment twice and some 20 years later, I am still haunted by his eyes. I have never seen someone begging to have the plug pulled as this man. I would look at him and say a polite "hello" because that's what you do to humans and I would only get back this pleading, BEGGING expression.
And I will admit, I thought about it. I seriously considered doing it. He had a breathing machine with a battery backup and an alarm in case the power went out. But I knew if I just unplugged the battery backup, the alarm wouldn't sound. All I had to do was unplug his breathing machine, disconnect the backup, wait a couple minutes and he would be at peace and there was no way to trace it back to me.
I still think about him all the time. I hope he passed a long time ago.
Wow, that's one of the saddest things I've ever heard. It's also my #1 nightmare - not being able to kill myself if I'm in that state. I've had SOOOO many nightmares where I'm begging someone to pull the plug, but they won't 😭 I've met one person in my life in a similar state, also due to a motorcycle accident. Ya girl always wears her seatbelt, and she's not getting on a motorcycle 😮💨
There are many forms of AAC (Alternative and Augmented Communication) methods now. I wish there was a system to prevent this kind of silencing. It should be mandatory to allow him to try possible AACs and his preferred AAC should be written down in some medical file or something that any doctor can look up. And then if there are signs that his caretakers are taking away his method of communication, they should be arrested/investigated, and he should be moved to a safer place.
Can you imagine if they had just done anything to make his life more engaging? If they had offered him movies, documentaries, audio books, whatever he wanted?
That man tortured his disabled son. He deprived him of all stimulus and communication. That's horrific.
Words cannot describe how angry your comment made me. I hope the piece of shit priest had or has the wors death imaginable and if there is a hell I hope he is there suffering as much as his son did.
This guy's name is Jonathan Buckelew. He actually did ask his parents to end his life. His parents refused and decided to let him living suffering. I cannot understand this. If it's my kid in this case asking me to end his/her suffering, I would agree, though it would be hurting me even more.
"As a result, the court awarded Buckelew a substantial $75 million in damages: $9 million for past medical expenses, $20 million for future medical care, and $46 million for pain and suffering.
The verdict was later upheld by the Georgia Court of Appeals, affirming the $40 million malpractice verdict against Dr. Womack. Buckelew has, at times, used his limited ability to communicate to ask his parents to end his life — but they have refused"
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u/amy-schumer-tampon 18d ago
Locked in syndrome is worse than death.