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I'm dying soon. What's a good way to share my heart and mind with my family and the world? I want them to know that life was fucking incredible.

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.

viralJ ,

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.

HerbalGamer ,
@HerbalGamer@sh.itjust.works avatar

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.

Maggoty ,

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.

Jax ,

I am saving this post.

My thoughts are with you.

MonsieurArchi ,

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?

aldalire ,

Hi. I make blogs (and i know how to make them and host them for free at no cost through Cloudflare. I use a lightweight blog framework called Zola to create them). I’ve made 2 for my mom for her businesses. I’d be happy to create you a blog of your own! DM me if you’re interested :)

xenspidey ,

Record as much video of yourself as possible. Text does not convey the emotion and tone that an actual video or audio would.

xionzui ,

Fuck yeah. This perspective is beautiful, and I’m glad I got to hear it. You’ve touched my life already, and I hope I get the chance to positively affect many others.

Cracks_InTheWalls ,
@Cracks_InTheWalls@sh.itjust.works avatar

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.

Furbag ,

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

I don’t have anything to add to the discussion, but that particular line resonated with me. When I was in college, one of my professors said something pretty profound that I think is relevant to this. I can’t remember if he was quoting someone of if this was original, but I’m paraphrasing it here:

“Everyone who has ever lived was alive during the greatest time to be alive.”

So I think you are absolutely right. Life is a blessing and you got to be here for the best life had to offer, and that’s awesome. We are all but motes of dust, and the span of a full life versus a life cut short is inconsequential in the grand scheme. I’m sure you’ll leave something behind that will be worthwhile and will help carry your memory forward in time.

Syrus ,

This is one of those posts that really puts things in perspective for me.

my family will only remember the boring, inoffensive outer shell that I presented

I doubt it, even though i don’t know you, I’ll remember this post for a long time. I don’t know what else to say but thank you for sharing your story.

Appoxo ,
@Appoxo@lemmy.dbzer0.com avatar

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.

FlihpFlorp ,

Just jumping in - I don’t really have any words sorry but you’ll be in my thoughts

I don’t really know what to say

Eonandahalf ,

I think amazing people like you exist in this world to carry the burden of reminding us, actually, how incredible this rollercoaster of a life is, and that we get to experience it.

yogthos ,
@yogthos@lemmy.ml avatar

You have an amazingly positive outlook on life and we’re all lucky to have your company. I’m just reading “I am a strange loop” by Douglas Hofstadter, and what you were saying regarding recording your thoughts reminded me of a point it made. Hofstadter argues that as we learn about another person we effectively start replicating the same patterns that happen in their minds in our own. These obviously don’t have the same fidelity as the primary pattern in the other person’s head. However, in some small way a part of that person does end up in our own heads. And in that sense an aspect of that person is alive. When I listen to Prokofiev’s violin concerto 2, a tiny part of what Prokofiev was ends up running in my mind as well. So, I think your idea of leaving as much of your thoughts around is spot on.

As for the technical question, I think GitHub Pages is probably one of the easiest ways to host for free. Using a generator like Quartz or Hugo makes it easy to add content too. I’ve been using this approach for my blog, and it works well. You just add a Markdown file with new content whenever you want. I’d suggest maybe putting your ideas on a couple of different services as well. GitLab also has a pages potion, you could make a thread on Lemmy. The more different servers the data ends up on the longer it will persist.

I wish you all the best, and hope you get to enjoy this ride a while longer.

ipkpjersi ,

Also the benefit of GitHub pages with the text being stored open-source is if they ever do the Artic Code Vault again, that could in theory last for over 1000 years: archiveprogram.github.com

yogthos ,
@yogthos@lemmy.ml avatar

oh neat, didn’t know about this

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