re: New research into people in a vegetative state

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Were your eyes ever open during your coma? I’m asking because my brother is in hospice now near the end. He had a major stroke three months ago that caused major brain damage and was totally comatose for three weeks.
For the past two months he will be intermittently awake. But he can’t communicate or move voluntarily. He did respond to verbal cues until recently with small gestures like blinks and quick hand movements.
I’ve been so sad seeing him trapped like that…Wondering how much he’s actively perceiving.

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Yeah, my eyes were open at times. I even occasionally responded to my mom. She’s the only one I ever responded to, like when she’d ask me to squeeze her hand. But I had zero awareness that I was responding from “inside” anything. There was no sense of being in a coma.

The people around me weren’t caregivers. They were part of the environment my brain built. A fully coherent reality where I was being betrayed and tortured, and I couldn’t understand why the people I trusted most were the ones doing it.

A few examples to explain it.

When they put in the PICC line, I believed I was at the dentist. I had a lot of dental-themed hallucinations because of the tube in my mouth. The nurse became a dental tech in that context. When she started inserting the line, I experienced it as being immobilized while she cut into my arm with a knife. She kept smiling, trying to be reassuring. That made it worse. In my head, she wasn’t kind. She was enjoying it.

My son stayed with me when they moved me around. In reality, he was just being there for me. In my version of reality, he was escorting me from one place to another to be tortured. Calm, present, even smiling. I couldn’t reconcile that. I didn’t understand what I had done to make him part of it.

When my wife was there during catheter procedures, talking to me and trying to calm me down, I believed she was participating in it. Not just present. Complicit. I thought she was helping them castrate me.

There was no separation between hallucination and reality. No “this feels wrong.” It was just reality. Complete, immersive, and internally consistent.

I figured out what actually happened later. But at the time, there was no outside perspective. No awareness of a hospital. No awareness of a coma. Just a sustained, coherent 24/7 month long nightmare that used the faces of the people I love most.

It was a complete mindfrick, and it still affects me ten years later.

I was in a medical induced coma for five days while on a ventilator as they were trying to find out what was killing me. I would be conscious throughout periods, and it was not enjoyable. Being on a ventilator, breathing felt like sucking air through a straw while drinking a McDonalds shake. I could hear everything going on but could not respond. I knew I was in a hospital and that my family was around me.

The funny thing was they noticed my right hand was constantly moving around. Knowing I was hospital bed I was searching for the remote to change the channel. What I found out days later was that was an impossible challenge as my hands and feet were tied to the bed. Hands to prevent me from pulling out the breathing tube.

"What I found out days later was that was an impossible challenge as my hands and feet were tied to the bed. Hands to prevent me from pulling out the breathing tube."

This was my biggest challenge while I was conscious in the hospital. I constantly tried pulling out my breathing tube in my sleep. They had to restrain me at night and I couldn't handle that. I felt so trapped having my hands tied down I couldn't stand that. I was the biggest pain while I was in the hospital, my injuries didn't cause me any real pain that I couldn't tolerate

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My God, that’s horrifying! I’ve been praying for the last few weeks for God to take him out of the prison he’s been locked in. We are ready to let him go so he can go to God and rest in peace.

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I thought about softening what I described because of your situation, but I didn’t. People tend to picture coma as passive and peaceful, and that assumption drives a lot of moral judgment about “pulling the plug.” That picture isn’t always accurate. Sometimes it’s the opposite, and I think people should understand that before they speak with certainty.

If it gives you any reassurance, I’ve looked into this a lot since then, and what I experienced is an edge case. It’s not the norm. The odds that your brother is going through something like that are low.

For me, if I take the coma as a given, the nightmare state was net positive. Once you get into multiple weeks, the odds of coming out without meaningful and significant cognitive decline drop fast. And the fact I was also fighting sepsis makes it even more likely. When you wake up, one of the first things they do is run you through a series of tests and puzzles to gauge that. My family had already been warned to expect damage.

Instead, I came out with little to no measurable decline. I was told I retained my cognitive abilities to a surprising degree.

The experience itself was brutal, and it still fricks with me ten years later. But I credit the lack of damage to the fact that my brain never shut off. It was fully engaged the entire time, even if the engagement was awful.

Now my body was another story. The combination of the coma and sepsis resulted in extreme loss of muscle and nerve and I could only move my hands for the first couple weeks and it took half a decade to fully regain the ability to walk.

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I thought about softening what I described because of your situation, but I didn’t.

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I appreciate your candor. And I definitely hope my brother’s experience hasn’t been as bad as yours. There’s really no way for us to know. But it should all be over for him any day or hour now. We are at peace with letting him go, though we are all missing him terribly. Thanks for sharing your experience and I’m glad you survived and recovered to enjoy more life.

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I figured out what actually happened later. But at the time, there was no outside perspective. No awareness of a hospital. No awareness of a coma. Just a sustained, coherent 24/7 month long nightmare that used the faces of the people I love most.

It was a complete mindfrick, and it still affects me ten years later.

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Wow what a horror show. You could get a ghost writer for a horror novel

Glad you recovered

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You can’t put all your faith in them because they really don’t know shite.

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They know a metric frick ton, they simply don’t know everything. And they do make mistake which is why second opinions are always recommended.

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Yeah, my eyes were open at times. I even occasionally responded to my mom. She’s the only one I ever responded to, like when she’d ask me to squeeze her hand. But I had zero awareness that I was responding from “inside” anything. There was no sense of being in a coma.

The people around me weren’t caregivers. They were part of the environment my brain built. A fully coherent reality where I was being betrayed and tortured, and I couldn’t understand why the people I trusted most were the ones doing it.

A few examples to explain it.

When they put in the PICC line, I believed I was at the dentist. I had a lot of dental-themed hallucinations because of the tube in my mouth. The nurse became a dental tech in that context. When she started inserting the line, I experienced it as being immobilized while she cut into my arm with a knife. She kept smiling, trying to be reassuring. That made it worse. In my head, she wasn’t kind. She was enjoying it.

My son stayed with me when they moved me around. In reality, he was just being there for me. In my version of reality, he was escorting me from one place to another to be tortured. Calm, present, even smiling. I couldn’t reconcile that. I didn’t understand what I had done to make him part of it.

When my wife was there during catheter procedures, talking to me and trying to calm me down, I believed she was participating in it. Not just present. Complicit. I thought she was helping them castrate me.

There was no separation between hallucination and reality. No “this feels wrong.” It was just reality. Complete, immersive, and internally consistent.

I figured out what actually happened later. But at the time, there was no outside perspective. No awareness of a hospital. No awareness of a coma. Just a sustained, coherent 24/7 month long nightmare that used the faces of the people I love most.

It was a complete mindfrick, and it still affects me ten years later.

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Hope you found Jesus, friend, cause you got a small preview of the wrong side of the other side....