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.

  • Paragone@lemmy.ml
    1111·
    1 year 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!

    ( :

    _ /\ _