Hey Lemmy,
I haven’t been doing well lately. I’ve had widespread and slowly progressing neurological issues for a couple years now - random pain and muscle twitching in my whole body, vision disturbances and damage, dysautonomia, and more. Virtually every individual thing my body could sense had weird, erratic behavior.
The U.S. healthcare system has been too slow to fully diagnose me, much less treat me.
I wanted to believe I’d be able to live with this condition, but recent events have changed that perception very quickly. This week, I lost the ability to breathe normally, and started having large-scale violent movements when going to sleep (e.g. my arms would fly off the bed or I’d suddenly lurch my body forward). At this point, I have to read the writing on the wall: there is something very wrong with my brain, there is an unknown, uncontrolled process damaging my central nervous system, and it has now gotten ahold of my vital functions. This very well may be the end, and I may leave this world at age 21.
My mind reacted to this news in a peculiar way. Instead of becoming extremely anxious or depressed, my mind suppressed these thoughts and started flashing some of the happiest memories back through my mind, telling me what I good job I did and achieved so much in what little time I had. I had so many meaningful and joyful experiences even if I could never lead a conventional life. There are so many amazing things to learn, awesome video games to play, cool projects to build, and adorable cat pictures to fawn over. My life was vibrant and filled with so many amazing and wonderful experiences. I loved being alive and I am so grateful for the privilege to exist.
So, my question is, what would you want to do in your final days? What kinds of things would you think about and do? What would you revisit? Would you like to spend your final days at home or go to a hospital and try to stay alive for as long as possible? It’s getting a bit hard for me to think now, since I can’t really sleep anymore, so I think some of your ideas will help me.
I’m sorry to hear that. That’s some heavy shit that I won’t pretend to understand, but to answer your question: Nothing. I don’t mean that in a cynical way. Enjoy the “freedom” you’ve been given. The world is a tumultuous place right now, and there are days where I find myself indulging this nihilistic hope/fear that it will all just stop and I won’t need to worry about bills, work, maintaining relationships. Those aren’t necessarily bad things, but they become overwhelming when you look at everything else going on around them. All of that is to say that while I can’t relate to your situation, I understand the way you’ve said you’re processing it.
So enjoy the freedom to do nothing. Go sit in a park or on the beach or by a lake for hours. Or binge watch some great shows. Or power out some of your favorite old games. Or do none of these things! Through this fucked up turn of events, you’ve been given a small gift of absolute freedom (though I understand with the mobility issues that may be easier said than done)
Personally, I’d spend it doing the things I said above and with the people closest to me. You don’t need to spend energy or time finding new things to make you happy. Just focus on the things that you already know do.
As for the hospital/home question, it really depends on the condition. It sounds like the medical system has failed you, and I’m sorry to hear that, but you shouldn’t give up on a chance if there is one. When/if it gets to the point that you’ve been given a diagnosis and it’s just prolonging the inevitable, then it’s time to make that choice. Are 3 more months worth it if you’re confined to a hospital bed? Personally I wouldn’t think so, but again, I’m not in that position and can’t honestly say how I’d react if I were.
I hope you can get the help you need. This internet stranger is sending all the good vibes I can. Keep your head up, your loved ones close, and keep focusing on the good, as you’ve proven quite adept at doing already.