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.
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.
Ditto to this. Audio is extremely powerful, more so than video in my opinion.
Record yourself reading some things you’ve written and upload them to a safe space for your family
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+1 to this. I found myself wanting to watch them/hear them. I also found myself wanting to know what their favorite (fill in the blank) was. You know someone, but sometimes those specific tangible things about their preferences get forgotten.
You might want to give the login information as google accounts dissapear quicker now if inactive
Shouldn’t be necessary, as Google accounts have a setting for notifying addresses you provide after 3 months of no activity - https://support.google.com/accounts/answer/3036546?hl=en. The account deletion was for accounts not accessed for two years, and I think it excluded those with YouTube video channels.
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. ^^</p>
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.
Can’t really help with your request, just wanted to let you know you’re amazing OP
If you want to safeguard your work from yourself, you’ll need to lean on someone you trust. Give the person you trust ownership and control over your cloud materials and set it up so you can contribute edits but cannot delete.
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Sounds like, if it was going to happen to one of us, this chap was as good as any. How many people could take it in stride like this and see almost all the positive and none of the negative.
Obviously we dont wish it on anyone, but this could have lead someone with a more fragile disposition right into years and years of despair, depression, and impacted everyone around them heavily for the worse for years.
I certainly wont take tomorrow for granted after reading this posters message.
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’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.
That last para made me realise we 100% live in a dystopian world
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Just wanted to say that given everything this post is an amazing bright light of positivity and an example for me of why the internet exists. To connect people, trigger amazing discussions and be something better than what it is currently. Thanks for the great post OP and every amazing commenter. Love you all.
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:
I’m not sure if you’ll see this, as federation seems to be playing up on lemm.ee, but first I wanted to congratulate you on your attitude to life, it’s an inspiration.
As to your question; I think Obsidian is an excellent tool for you to do this in. As it uses a fairly standard type of markdown for formatting you have plenty of options.
I’d suggest a two pronged approach to make sure your writing is accessible. In the first place, for the more personal stuff, just print it out. Put the printout in an envelope, write instructions on it that it is only to be opened after you pass away and then mail, or give it someone you trust (a friend, family member, solicitor etc). You can update it by jyst giving then a new copy, or just extra pages to add. I’d suggest making a couple of copies to be sure they get to the people who you want to read them.
For the general stuff, as Obsidian uses markdown and so does the wiki function on github, you should be able to just commit the vault to your wiki repository and have it rendered reasonably. That way it’ll reflect your changes with little effort. If you’re worried you might do something to it, ask a friend, or acquaintance to fork the repository and regularly sync it. That way you can’t remove all the copies.
Let me know if you need more detail.
Thanks for writing this. It will stick with me forever, I’m betting.
Please also read that one person’s post about the dangers of self-diagnosing!
Finally, just use the GitHub desktop app to frequently commit changes to a public repository containing your files. Others can fork it and make sure it lives on even if you decide to nuke it all at some point.
Record as much video of yourself as possible. Text does not convey the emotion and tone that an actual video or audio would.
You could write a diary of sorts where you recount what you’ve lived through and how you felt.
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.
