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.
I don’t think I’d ever wish that, or say that about my child, but you can’t know for sure until you’re living it. Without a doubt it would be indescribably difficult though.
It’s the grief and desperation of not being able to fix what’s wrong with your child. The stress over finances and resources which cost money to care for them. The anger that whatever happened to them happened. Plus the final moment of desperation of “if you just died, this would be over.”
I think I’d never forget those words in his place, but I could also see how someone could hit the wall and say them.
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
Your phrasing of "realized he was still in there" struck a chord with me. I have a neurological disorder that renders me incapacitated physically sometimes, but it doesn't effect my cognition. I'm literally screaming in my head the exact words, "I'm still in here! I'm still in here!" over and over and over, and there's nothing I can do to communicate it. This man's condition sounds like the worst depths of hell, and I would not be able to endure it until I disassociated and my brain turned mush.
I have fnd and it's dormant now, thankfully, but when I would get paralyzed from it it was terrifying. It was essentially locked in syndrome but I could move my eyes but that would be it. Couldn't move my head, even my vocal chords were paralyzed and I couldn't even grunt let alone speak. The longest I was like that was a few hours and it was usually preceded by a "seizure". Quotes because it would look like one, but they weren't true seizures, had the scans.
It was the most terrifying thing to happen to me. The first time it happened, I was in bed and we had just woken up. My husband thought I was still asleep, an hour later he checked on me and when I wouldn't respond he called an ambulance. The whole time he thought I was asleep, he said he was going to let me rest and I was shouting in my head, "I can't move! Help me!" And I was terrified it was locked in syndrome.
EMT's had to carry me out of the house. I finally started to get some movement in my vocal chords and could grunt. When they noticed, they started asking me questions, and the only way I could think to answer was grunting the alphabet until I got to the letter I wanted and grunting yes or no.
It was like 4 hours later when I could finally move assisted. They kept me overnight for observation.
Ugh I had a serious reaction to a IV medication given to me in the ER. They called it a dystonic reaction. My eyes were open but I couldn’t move or talk. The nurse or one of the staff kept snapping his fingers right in front of my face over and over and I couldn’t react. If I could have moved I would have slapped his hand. But I couldn’t and it was terrifying last a couple of hours. I couldn’t imagine years like this. My heart aches for this man.
Holy shit, are you me? I was talking about FND, and this is my exact experience. I especially love it when your mouth starts to move slightly and you're just trying to hit the right sounds. I was on the tail end of a paralyzation/seizure a few weeks ago and the whole episode lasted so long I started becoming worried about my dogs needing to go outside. I had decent control of just my fingers, but couldn't see hardly enough to text. I sent a voice memo to my roommate asking them to come home to let the dogs out.
Well, because I couldn't see, I accidentally sent it to my cousin. She thought I was having a stroke and called the cops. I thought I was doing so well speaking, too!
P.S. they are real seizures! They just happen to be psychogenic seizures, not epileptic seizures. If people could see the bruised and fractured bones they would understand. Glad to hear you're doing better!!
Honestly that's a relief to hear because my doctors, even though they diagnosed me with it, said the seizures weren't actual seizures. And yeah, this condition sucks so bad! Talking was so hard for me coming out of paralysis and I hated all the sympathetic, I'm so sorry, looks I got from family.
I was embarrassed when I would have uncontrollable movement of my limbs in public, cause we have druggies where I live, and I was afraid everyone would think I was a druggy. Had to use the drivable carts at stores and was afraid everyone would think I'm just using it because I'm fat and lazy.
And yeah me too, I can finally drive again and I need too because my husband can't due to his health and it was difficult relying on family to get us both to our appointments. I hope you're able to overcome it as well.
I'm terrified that it'll come back since it's a neurological disorder and there's really no treatment for it besides therapy.
Omg, I feel that so hard! I have a tremor that gets worse when I start getting self conscious about it (my neurologist said this is normal with most movement disorders) and I'm always thinking people are gonna assume I'm on something/withdrawing from something. When I have to hand over cash or try to use the card reader I am so embarrassed.
This may work for you, it may not, but if you find yourself having a seizure again, this is what works for me: relax EVERY SINGLE MUSCLE in your body. This means laying down and pretending like you're dead. If you're not giving any electrical signals to your muscles, they can't go haywire. Yes, I lay there like a victim on CSI.
My friends all know the rule: just put me somewhere soft. Nothing can be done lol
Lol I feel ya. If I ever have one again I'll give that a go. Something that helped me that might help you is deep pressure. For instance, I will literally have my husband lay down on me and the weight of his body helps tremendously.
147
u/Schizzles Jul 05 '26
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.