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.
Can’t really help with your request, just wanted to let you know you’re amazing OP
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 could write a diary of sorts where you recount what you’ve lived through and how you felt.
Just wanted to jump in and say thank you for the post and you rock. We’re lucky to have you here.
You may want to do it online, and that’s fine. My wife and I did a book years ago before we got married called “All About Us” and it was a great experience, they have one called “All About Me” as well. It went through some really good open ended questions about our personalities. I assume the individual book is very similar. You could use it as a guide for your writing if you need some direction. As for how to publish it, I would give access to someone you trust to keep it alive.
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:
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Wisdom-realizing-that-all-phenomena-are-empty-of-self-inherent-existence
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immeasurable-compassion for all sentiences ( but tempered by wisdom )
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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!
( :
_ /\ _
What hogwash.
Yeah wtf was that
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Share everything you’ve written here, write more stuff, send that to them.
Not what you asked, but have you considered getting some credit cards and maxing them out to buy things like cars, TVs, PS5, etc for your family
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.
Record as much video of yourself as possible. Text does not convey the emotion and tone that an actual video or audio would.
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.
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.
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 :)
I am saving this post.
My thoughts are with you.
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.
