Hey Lemmy,
Long story short, I got unlucky. At age 18, I got one of those nasty neurodegenerative diseases that slowly deteriorates the body's nervous system. Now at age 21, after ravaging my vision, bladder control, balance, memory, heart rate, cognition, and sense of touch, it is now taking over my breathing. My breathing simply doesn't work during sleep anymore. It slows down and stops entirely before restarting again. I read that this is likely because the disease finally reached the part of the brainstem that controls breathing, and that if it gets worse, it may be fatal. It would appear that I'm hanging on at 1 HP, and the next attack could be the one that does me in. It's getting uncomfortable knowing that every day is another roll of the dice, because I don't think mine have many sides left.
I want people to know that life was the greatest fucking thing to ever happen to me. I loved it all, even the parts that sucked, just because I got to take it all in. The highs of joy, the lows of sadness, the good, the bad. People will say "Too bad he never got to live a full life," but I say FUCK that! This was fucking incredible! This IS a full life because it's the one I got, and just the chance to experience this universe is so unbelievably goddamn beautiful. You think I'm going to complain when we are basically supercomputers, made up of incomprehensibly complicated microstructures, and we have the technology to experience the richest and most creative worlds other humans have to offer ON TOP of that?? HELL NO! From my perspective, there was nothing, and then there was the most beautiful, intricate, and awe-inspiring light show - incomprehensibly detailed, amazing, and endless. Whoever gave that to me, I just want to say that I fucking love you. Whether it's God, the creator of the simulation, the Flying Spaghetti Monster, or mathematical soup, there is no string of words in the English language to describe how grateful I am. How the FUCK did this happen?
I've been writing a lot recently in a note-taking app called Obsidian. I'm using it to record my thoughts about life and the person I was, because I want to share who I was with my family and the world. See, I was always sort of the black sheep in my family. I often kept to myself because I didn't always have the best relationship with them. That was all well and good... until now. I realized that once I die, the essence of my personality will instantly be gone, and my family will only remember the boring, inoffensive outer shell that I presented. But I want them to know the real me, even if I think totally differently than them and even if some differences upset them, because at least then they will know what my actual, genuine feelings were. Because I had a whole lot of them.
I also wanted to share them with my Internet friends and the hundreds of people in my community who enjoy my projects. I think it would be really cool if people could browse my thoughts like a wiki (save for a few personal pages for just my family). Perhaps I could use something like Quartz for the site generation and GitHub Pages for hosting? I'd prefer if it didn't incur cost. As for the notes for my family, I guess I could put them on a USB stick? The only problem is that it could decay or there could be a house fire or something like that.
One thing I'm a bit worried about is the idea that damage in specific parts of my brain could suddenly alter my personality or give me delusions that cause me to delete or remove everything out of some insanity that I can't comprehend. I feel like I have to physically give my family a copy for them to hide from me in case I become a zombie. But then, what if I want to write more notes for them? Maybe I can have it published to the cloud somewhere and they periodically download it?
I wanted to pose the question here, because I think others might have better ideas than what I'm thinking of right now. I'd prefer something I could do in one day, since I really want to avoid risking more days without this. I just want to write and ideally be able to sync everything pretty quickly. My thoughts will never be complete, but I'll have much more peace of mind knowing that people will at least see what I have written so far.
I'm sure most of Lemmy would also like you to have this, a few extra sides on your dice. Take any colour you like.
Your cup seems to be overflowing with positivity, during what most might consider a particularly challenging set of life circumstances. I consider that an incredible skill which is truly inspirational. Top-lemming trophy right here for you too. •{≣}-(
Many who face equivalent experiences could benefit immensely by hearing positive advice and encouragement from someone in a similar situation, rather than from well meaning others that may struggle to empathise with their condition.
Recording your thoughts, philosophy and self-motivational inner-talk could be a comfort to many, or just express what it is you need to, it's your story.
Recording as text, audio, video, or all 3 are options. Get a decent mic and possible pop filter if doing video/audio.
For bit-longevity I'd recommend uploading to archive.org and then link back to the files from there. (Create account 20min, then upload 1hr etc)
To avoid deletion of files by yourself in the future, ask a trusted intermediary friend to upload them and to not tell you the password. (Or send them the login details once you have completed uploading, and they can reset the password to lock it from you) Be explicit about the conditions: eg. the password should not be disclosed under any circumstances, or it should only be disclosed if you demand it for 2 weeks straight, etc.
I wish you all the best for your remaining years(yes), and I completely agree with your evaluation of life, the universe, and the fantastic physicality and consciousness we experience as humans.
Congratulations for seeing 2024, and all the best for continuing to share your light with others. (c: