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.

  • MegaUltraChicken
    2•4 months ago

    Just wanted to jump in and say thank you for the post and you rock. We’re lucky to have you here.

  • forty2English
    1•4 months ago

    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.

  • Archibald
    1•4 months ago

    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?

  • Margot Robbie
    0•4 months ago

    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.

  • nebajoth
    0•4 months ago

    Train an AI on all your writing so that people can speak to you forever.

  • @rufus@discuss.tchncs.de
    0•4 months ago

    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.

  • @notabot@lemm.ee
    0•4 months ago

    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.

  • allo
    0•4 months ago

    I’m a young whippersnapper but all my friends are 70+ so I have done quite a bit in the realm of tackling age related cognitive decline. I feel this probably isn’t related to your health problem, but if faulty myelinization of neuron connections is an underlying cause (and that COULD be widespread across nervous system), AlphaGPC plus Noopept is very known to repair and protect myelin. I would typically be wary of medical advice, but AlphaGPC and Noopept are sideeffectless at any dose, so I am actually confident suggesting it can have no repercussions. Of note is the healing of previous braindamage, protection against braindamage, and the extreme ‘like flipping a switch’ way it does it. My friend Jackie with MS was having a stroke a month and it looked like basically the end for her. These two things together 100% stopped strokes and it is now like 3 years later and we just casually chatted on facebook this very night. As said, I have many 70+ friends, and AlphaGPC + Noopept seems to do the same in all. Has 8 day ramping up period, can last 180 days after last dose if u get enough in your system. I know literally from watching my friends memories and when they start to again forget things. Anyway, thought if there was anything I know that could help it would be this. There are studies going back in to the 70s if I remember correctly on Piracetam, a predecessor of Noopept, showing a bunch of rats induced with braindamage. They remember like 23% average. Then shows the Piracetam rats bar and they remember 100%. And it really is like that from my experience. Switch flipped and suddenly strokes and various age related cognitive decline things just can’t happen. If it were me as you, but with my experience, I would order both online (they aren’t expensive) because, with the no sideeffects part and the huge possible recovery, it looks, to me, like ‘why not’? If your health problem is related to the myelin of neurons, I am confident you will see positive effect upon 8 days of taking both. Though there are many things that could be underlying your symptoms and not all have to do with myelin.

  • PrivateNoob
    0•4 months ago

    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. ^^

  • @Paragone@lemmy.ml
    0•4 months ago

    I’m a braindamage survivor.

    You need to communicate your values, and why they are your values.

    You need to communicate who you are, via the most-significant-moments/events you experienced: the most-significant-for-you meanings, see?

    As for you disappearing, the Soul/CellOfGod/ChildOfGod/Continuum ( whatever you want to call it ) that causes the molecules in your body to continue-living ( yes, there is a physics-level cause for the anti-entropy behaviour expressed as living-organisms, and it isn’t there, when those same molecules are doing the disintegrating-corpse thing, obviously )

    That cause is unkillable.

    It keeps getting caught in conceptions/lives, through endless-stream-of-Universes’s perpetual recycling/churning of ALL energies ( including meaning! ) contained within it.

    It isn’t the-individual-life that is the center,

    it is the Soul/CellOfGod/ParticleOfBrahman that is.

    IT experienced some of ITs growing-up, in/through your-life.

    With you, your Soul got a gift, fersure.

    My life’s been hell, & I’m glad:

    nothing like aversion-therapy to force a Soul/CellOfGod to grow-up, eh?

    The Soul that had “me”-personality won’t ever make that mistake, again.

    : )

    If you’ve still got any ability to read, or to have someone read to you, please have someone get Elisabeth Haich’s “Initiation” into you:

    it is likely that only part of the book will be important for you, but that part will likely be IMPORTANT.

    The world her Soul 1st inhabited was something like 10,000y ago ( it hasn’t rained much there, since then ).

    My Soul’s spent most of its time inhabiting insect-lives, or particularly-stupid-fish-with-bad-eyesight.

    It’s been centuries since it had been in a human-category life ( the Catholicism I was pressed into, by mom, got nuked when I discovered those strange-memories were memories of my Soul’s having lived in other kinds of lives.

    Not only did it nuke all the Abrahamic religions, but it forced me to accept that ALL lives are lives because they have a Soul underlying them, and there isn’t anything “special” about the life of a human, except for our Potential & our Opportunity, which most take for granted, including me, in my younger days ).

    Anyways, you can’t unexist, from Eternity.

    You’ll always have-been, see?

    The Soul/CellOfGod who had you has YOU in it, indestructibly.

    I’m earning removal of me-personality now ( should be days ), so the nervous-system currently having “me” can get that “me” ripped-out & can replace it with a better personality ( it’s a Buddhist technique, apparently nobody remembers it, in the modern version of Buddhism, for some reason ), so you can stack multiple personalities/someones into a single incarnation, to get-through multiple-lives of lessons/growing-up crammed into a single incarnation/life.

    It works, but it takes work to force one’s own identity-death, or removal of the instance-of-ego underlying one’s personality…

    There are 3 kinds of mind that death-itself has difficulty “gripping” on:

    • Wisdom-realizing-that-all-phenomena-are-empty-of-self-inherent-existence

    • immeasurable-compassion for all sentiences ( but tempered by wisdom )

    • Faithing, which is the simultaneous surrendering-to higher-power, relying-on higher-power, and gratitude-to higher-power.

    Faithing on one’s own CellOfGod/Soul is perfectly find/workable.

    It has BuddhaNature/GodNature, so all you have to do is orient to that aspect of its nature, and then faithing is powerful/valid, see?

    Guru-yoga, is faithing.

    “a faith”, ie noun, … isn’t what the original texts said, btw.

    Anyways, I hope something in this helps, gives you leverage.

    Either way, our Souls will meet again, after “us”, sooner-or-later…

    Salut, Namaste, & Kaizen, Hoomin!

    ( :

    _ /\ _

  • @viralJ@lemmy.world
    0•4 months ago

    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.

  • @Maggoty@lemmy.world
    0•4 months ago

    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.

  • ☆ Yσɠƚԋσʂ ☆
    -1•4 months ago

    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.