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.
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 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.
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.
