My story is a little strange - I've told it before but sometimes I need to just get things out and writing is my only avenue for doing that. Ignore if you've read this before.
A little over a year ago, I started to get mysterious nerve damage in my toes and my fingers. Lost my ability to balance and walk, and also my fingers started balling up in to fists, so I can barely use my hands. Since I was now in a wheelchair, my wife of 24 years started to become my caretaker - driving and helping me get in to my office, etc. I went from surfing, playing the drums, riding motorcycles, etc., to now needing someone to help me button my shirt, etc.
Last August I woke to go to work, called out for my wife - no answer. I looked in to the back bedroom and she was hanging by an extension cord. Gone.
I had nobody to call for help - her family lived on the other side of the world and I don't have any family. As I had no way to get to my office, I lost my business as well. Not knowing what else to do, I went in to the hospital for 5 weeks while they tried to figure out what was wrong with me. Said I needed to go to assisted living. Since I'm still in my 40's, the govt doesn't pay for something like that (only the medical side - you are responsible for "room and board" which is anywhere from $5000/mo and up here in San Diego, CA). I don't have that kind of money, I don't own a home or anything like that and now with no income, what the hell could I do?
So I was discharged with 13 different medications - antidepressants, anti anxiety, PTSD meds, nerve medications,etc etc etc).
One of those prescriptions was a muscle relaxant called baclofen. Because of all the other meds, and my state of mind, I wasn't sleeping hardly at all. The only thought that brought me any comfort was joining my wife. I started researching ways to CTB - my physical limitations make viable methods hard to come by.
After a few weeks of very little sleep, what I did not know at the time is baclofen can cause hypnagogic hallucinations (HH). Usually, you don't hit REM stage of sleep until you have been asleep for several hours (and fully unconscious). However, with HH, you immediately fall in to REM sleep while you are still CONSCIOUS and aware. The painter Dali, Thomas Edison, Albert Einstein, all used HH for creativity purposes. Dali would stay awake for a week straight and when he got to the point of nodding off, he would hold a metal key in his hand. When he nodded off and his muscles relaxed, he'd drop the key which would wake him back up. He would then paint what he saw in his vision (hallucination). It has been proposed that HH could be responsible for religious experiences, the Bible, NDEs, etc.
At least 60% of the population will experience this at least once in their lifetimes.
For me, I had just laid down and immediately my vision faded. I was in a dark, foggy world and was completely aware that I was lying down on my couch in my home. I thought I had died. All my senses were in tact. I could feel a breeze in this other world and it felt just as real, just as legitimate as this world. It was actually kind of frightening because I didn't understand what was happening. There was this buzzing sound in my ears, so I thought I had laid down on a live electrical wire and was being electrocuted. I kept yelling for someone to just push me (off of the wire), but I knew nobody was around to hear me (I live alone). I saw a dark shadowy (like a shadow person - no features) figure approaching me. It was scaring the shit out of me. At that moment, I moved my arm and came out of it.
I immediately went to call 911, thinking I was losing my mind. Instead I started researching. Stayed awake for several days as I was scared to fall back asleep. Found out that this is completely normal, and the hospital wouldn't do anything about it other than schedule me for a "sleep study". I was more concerned that I would be stuck in that other world and everything I had been reading was that most people's experiences were extremely frightening - feeling like you are falling, or the prevalence of seeing witches (don't know why). If you go on to Reddit and search hypnagogic hallucinations and pictures or art, you will see pics of people attempting to re-create their experience and it's not exactly comforting.
You have to remember, this "hallucination" feels more real than real. It wasn't like a dream or anything - it was exactly like this "reality".
I couldn't stop thinking about it. I didn't want to go to sleep. I eventually found out that it was the muscle relaxant that can cause this effect (messing up your REM). It can cause narcolepsy - which I had always assumed was harmless - I always just thought that narcolepsy is when someone falls asleep in the daytime, or has trouble staying awake. Not that easy. Narcolepsy messes with REM, and HH are a feature of narcolepsy. The hallucinations can happen when you are falling asleep (immediately going in to REM while still conscious), or when you wake up (you become conscious to wake up but are still in REM). Either way, you are conscious during REM.
So I threw all 13 medications in the garbage. I figured I would happily deal with any side effects of not taking all those meds rather than get stuck in that other world. It was the absolute best thing I could do for myself. I felt clearer, not as depressed, more articulate, etc.
I still have moments where I would prefer to CTB. I literally do not have a single person to live for - I have no future to look forward to other than being crippled. My best friend, my wife, is gone. We were supposed to grow old together. We were literally attached at the hip. Never argued, got along like twin siblings. Unfortunately, she suffered from depression. She didn't leave a note, no warning signs, no arguments, nothing. I can't help but wonder maybe if I wasn't disabled, maybe if I had some family or friends, I could get on with life.
And I'm not saying life would be great. I'm just saying that maybe there could be a few moments where I could enjoy life again. Nobody's life is 100% happy 100% of the time. But when I have nothing to look forward to, it saps my energy and motivation, I try to remind myself that things could be worse, but that only works occasionally as I don't know how much worse it can get - I guess being homeless or completely paralyzed.
This is kind of a side note, but I've started a process of just writing without thinking about what I'm writing. When I was at a low point a few months ago, for some strange reason I got the urge to go on Youtube and staring me in the face as soon as I opened the page was a documentary called "A Journey Through the Darien Gap: The World's Deadliest Jungle".
If you've got 45 minutes to spare, watch it. And I thought my life was difficult. It really put things in to perspective for me, what other people will go through. Now, whenever I get frustrated or upset I can't do something, I remind myself that it could be worse. Much, much, worse.
A little over a year ago, I started to get mysterious nerve damage in my toes and my fingers. Lost my ability to balance and walk, and also my fingers started balling up in to fists, so I can barely use my hands. Since I was now in a wheelchair, my wife of 24 years started to become my caretaker - driving and helping me get in to my office, etc. I went from surfing, playing the drums, riding motorcycles, etc., to now needing someone to help me button my shirt, etc.
Last August I woke to go to work, called out for my wife - no answer. I looked in to the back bedroom and she was hanging by an extension cord. Gone.
I had nobody to call for help - her family lived on the other side of the world and I don't have any family. As I had no way to get to my office, I lost my business as well. Not knowing what else to do, I went in to the hospital for 5 weeks while they tried to figure out what was wrong with me. Said I needed to go to assisted living. Since I'm still in my 40's, the govt doesn't pay for something like that (only the medical side - you are responsible for "room and board" which is anywhere from $5000/mo and up here in San Diego, CA). I don't have that kind of money, I don't own a home or anything like that and now with no income, what the hell could I do?
So I was discharged with 13 different medications - antidepressants, anti anxiety, PTSD meds, nerve medications,etc etc etc).
One of those prescriptions was a muscle relaxant called baclofen. Because of all the other meds, and my state of mind, I wasn't sleeping hardly at all. The only thought that brought me any comfort was joining my wife. I started researching ways to CTB - my physical limitations make viable methods hard to come by.
After a few weeks of very little sleep, what I did not know at the time is baclofen can cause hypnagogic hallucinations (HH). Usually, you don't hit REM stage of sleep until you have been asleep for several hours (and fully unconscious). However, with HH, you immediately fall in to REM sleep while you are still CONSCIOUS and aware. The painter Dali, Thomas Edison, Albert Einstein, all used HH for creativity purposes. Dali would stay awake for a week straight and when he got to the point of nodding off, he would hold a metal key in his hand. When he nodded off and his muscles relaxed, he'd drop the key which would wake him back up. He would then paint what he saw in his vision (hallucination). It has been proposed that HH could be responsible for religious experiences, the Bible, NDEs, etc.
At least 60% of the population will experience this at least once in their lifetimes.
For me, I had just laid down and immediately my vision faded. I was in a dark, foggy world and was completely aware that I was lying down on my couch in my home. I thought I had died. All my senses were in tact. I could feel a breeze in this other world and it felt just as real, just as legitimate as this world. It was actually kind of frightening because I didn't understand what was happening. There was this buzzing sound in my ears, so I thought I had laid down on a live electrical wire and was being electrocuted. I kept yelling for someone to just push me (off of the wire), but I knew nobody was around to hear me (I live alone). I saw a dark shadowy (like a shadow person - no features) figure approaching me. It was scaring the shit out of me. At that moment, I moved my arm and came out of it.
I immediately went to call 911, thinking I was losing my mind. Instead I started researching. Stayed awake for several days as I was scared to fall back asleep. Found out that this is completely normal, and the hospital wouldn't do anything about it other than schedule me for a "sleep study". I was more concerned that I would be stuck in that other world and everything I had been reading was that most people's experiences were extremely frightening - feeling like you are falling, or the prevalence of seeing witches (don't know why). If you go on to Reddit and search hypnagogic hallucinations and pictures or art, you will see pics of people attempting to re-create their experience and it's not exactly comforting.
You have to remember, this "hallucination" feels more real than real. It wasn't like a dream or anything - it was exactly like this "reality".
I couldn't stop thinking about it. I didn't want to go to sleep. I eventually found out that it was the muscle relaxant that can cause this effect (messing up your REM). It can cause narcolepsy - which I had always assumed was harmless - I always just thought that narcolepsy is when someone falls asleep in the daytime, or has trouble staying awake. Not that easy. Narcolepsy messes with REM, and HH are a feature of narcolepsy. The hallucinations can happen when you are falling asleep (immediately going in to REM while still conscious), or when you wake up (you become conscious to wake up but are still in REM). Either way, you are conscious during REM.
So I threw all 13 medications in the garbage. I figured I would happily deal with any side effects of not taking all those meds rather than get stuck in that other world. It was the absolute best thing I could do for myself. I felt clearer, not as depressed, more articulate, etc.
I still have moments where I would prefer to CTB. I literally do not have a single person to live for - I have no future to look forward to other than being crippled. My best friend, my wife, is gone. We were supposed to grow old together. We were literally attached at the hip. Never argued, got along like twin siblings. Unfortunately, she suffered from depression. She didn't leave a note, no warning signs, no arguments, nothing. I can't help but wonder maybe if I wasn't disabled, maybe if I had some family or friends, I could get on with life.
And I'm not saying life would be great. I'm just saying that maybe there could be a few moments where I could enjoy life again. Nobody's life is 100% happy 100% of the time. But when I have nothing to look forward to, it saps my energy and motivation, I try to remind myself that things could be worse, but that only works occasionally as I don't know how much worse it can get - I guess being homeless or completely paralyzed.
This is kind of a side note, but I've started a process of just writing without thinking about what I'm writing. When I was at a low point a few months ago, for some strange reason I got the urge to go on Youtube and staring me in the face as soon as I opened the page was a documentary called "A Journey Through the Darien Gap: The World's Deadliest Jungle".
If you've got 45 minutes to spare, watch it. And I thought my life was difficult. It really put things in to perspective for me, what other people will go through. Now, whenever I get frustrated or upset I can't do something, I remind myself that it could be worse. Much, much, worse.
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