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.
So, my question is, what would you want to do in your final days?
Honestly, that’s a good question that I don’t know the answer to.
I don’t know that I’d care doing anything super specific, but mostly that I’d want to spend at least some of that time with the people I love.
Not even as a goodbye, really.
There’s just something about connecting with people that is its own reward, for one more moment.
Maybe I’d like to watch the stars on a clear night, away from the big city lights?
Gazing at the light from a star from a billion years ago, there’s always been something calming to me about the sheer vastness of the universe. Our time here, almost a blip, but ever precious.
Know that whatever happens next, your story has touched me.
I really wish you the best.
Some people have survived unimaginable odds, and I hope you do too.
