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.
Just wanted to jump in and say thank you for the post and you rock. We’re lucky to have you here.
Record as much video of yourself as possible. Text does not convey the emotion and tone that an actual video or audio would.
This brand of positivity you’re embodying is the most infectious one, and if I can feel it in your writing I imagine hearing it spoken from you would be some next level inspiration.
I’ve lost some people close to me over the years and what saddens me most is how I’ve forgotten so much about them beyond what they looked like. All of them except one…Gordon left behind audio recordings as his last messages to each of us in the group of friends.
Every time I hear his voice, it brings back so much about him that just can’t be said. His cadence, intonation, and overall manner of speaking have helped keep an entire person in my memory.
I wonder if that’s an option for you. I can say from experience that the lasting impact of audio is…powerful. Being able to actually hear my friend…i can imagine him speaking to me, and it’s in his voice because his voice is not forgotten.
Your family hearing your thoughts, in your voice…and being able to hear you speak long after your time…man, I can’t think of a better way to highlight your true personality and make it a lasting one.
I was going to suggest just this: read this post out loud and record it. I think every bit of this would be touching to someone who’s close to OP.
I’ve had many similar thoughts on the topic of death in recent months.
The solution I came up with was to comment my thoughts on everything on public forums such as this one, any time I can, for as much as possible.
Everything you post on here is distributed and recorded through thousands upon thousands of federated servers around the world, and as long as you don’t delete them, these comments will be there, long after I’m gone.
And the web scrapers used for AI large language models will inevitably pick up my words and thoughts here, and a small part of who I am as a person will always live on, compressed within these LLMs.
That last para made me realise we 100% live in a dystopian world
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That’s a very poetic way of looking at the way our data on these forms will be processed and ingested by LLMs in the coming years. I have been considering cloning my own voice and experimenting with the multitude of use cases that can provide.
All the developed literature as well as entirely documented human lives… Readily available with numerical recipes for their processing and integration into whatever societal infrastructure comes out of where we’re headed right now.
It was strange for me to come to terms with that. The crowd that Lemmy fosters is such a different subset than the general population. Sometimes I wonder what growing up online will do to people down the line from us.
It’s heart rending to hear what you’re going through, OP. I’m sure your family will sincerely cherish what you write. I also agree with others who have mentioned to add stipulations on how you want your thoughts to be used. Not to speak for you, but I wouldn’t want my likelihood desecrated in some manufactured effigy long after my death.
Not to say I didn’t spend a fair chunk of my own life online, but with the advancements in materials and manufacturing methods, I wonder what storage devices and technologies will become sarcophagi for our archived lives…
Wishing you wonders in your last moments, OP.
You’re awesome.
Maybe consider a version control system like Git on Github. Maybe do an occasional backup. USB sticks might work for that. If you circulate 3 or so between you and your family/friends, you can update the last backup and then continue the circle and 2 backups will always be with them. I can imagine a blog that is snapshotted regularly or a cloud drive could do the same.
Writing your stories and thoughts down is an excellent choice. My granddad used to do this and while he told us many stories when he was alive, I can still read his words today.
You could also experiment with recording your voice. I don’t know if you’re still fit enough to do it. But I read some people would love to hear the voice of their relatives once more. I don’t think it matters too much what you read/speak. It brings back memories anyways.
I agree with other people here. Convey your values, your positivity, stories and perspective on things. Maybe I should take a step back and think about my values and if I want to share my perspective, too.
I think you’re amazing. Having faced such tremendous adversities at such young age, you still think that the main message you need to share is that life is fucking incredible.
I’m not a blogger or anything, so I’m sorry for posting a comment without any answers to the question in the title. But if the outlet you choose ends up being publicly available, please share the link. I would love to read whatever you think is worth writing down.
You, my friend, are my favourite sh.it.head. The feelings you have about life are the precise ones I try to keep in focus. And regardless of the ultimate outcome of your condition (I truly hope one with a solid recovery path!), this is a beautiful sentiment and a wonderful idea.
I have no suggestions regarding tech for going about this, aside from whatever method you choose, occasionally make hard copies for long term storage. There’s many ways to make a robust digital archive, but paper is there should it fail.
If you want to upload your thought on the internet and don’t wanna mess around with it that much, then I can recommend neocities.org. This site usually hosts personal websites, and there are a lot of sites which offers website template. You just create your instance/domain/site on neocities, choose a template and paste that code in. After that you can just paste your notes into the <p> tags and you’re done basically!
Website layout templates: https://webmastering.neocities.org/layouts
Honestly I really envy your unparalleled positivity, I could learn from your mindset ngl. We are greatly indebted that you shared this post with us. ^^
Is there a way to request that The Way back Machine (internet archive) archive your page? If so, the page will exist even if neocities goes away.
You can also save outlinks with an account, if needed.
You can search for the page’s URL and if it’s still not archived trigger the archiving process.
I am saving this post.
My thoughts are with you.
I’m not sure if it’s possible, but when I was 18 and pretty sure I wasn’t going to survive it was my family and the future opportunities to travel that got me the most. So if you can, I’d travel places with family. Your Internet archive idea sounds cool too though. It’s a heck of a lot more creative than I am.
Fuck ya bro! I suggest you leave traces of yourself all over the internet so that at some point in time someone somewhere might stumble upon it and know about you. Maybe along with a blog try logging the films you like on letterboxd? And write a short funny review?
Very weird to me; I’ve been severely depressed since 18 and now at 32 don’t think I can go on that much longer. I genuinely can’t understand how anyone could say life is all that good.
Share everything you’ve written here, write more stuff, send that to them.
You’re an amazing person, I would have loved to have known you. I’d propose you leave them all your recorded thoughts during this journey, good, bad and ugly (I’d anyone gets judgey, they get to work through that without you) written and recorded, including this one. And thank you so much for sharing this with us. I wish you all the best, now and in the hereafter – whatever that looks like to you. Bon voyage!
PS: I feel weepish now, and wish I could give you a hug; so I’m going to hug my fur baby.
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
Create a shared drive online, change the password to a high char string and print the key in a letter. Put that letter and another paper with a guide on what it is, what it contains and how to access it and to not ask until it happened.
This way you don’t have the elephant in your own room about the impending doom and your family will have access to your stuff.
Maybe make sure it’s free tier or pay a year in advance so something like missing payments will not impact the mission with you not having access anymore.Edit: Maybe on top make it a key with one way sync + versioning og which you throw the key to the admin console away so you are unable to change the sync direction.
