So, I just went ahead and wrote out basically everything in this comment chain. Most of what I described of my disease before has been a simplification because it’s too complicated to describe in a simple post, but some people had concerns, so I finally described it in detail. I had previously left out a lot of details pertaining to progression and the fact that most of the early disease activity correlates with physical events surrounding a herniated spinal disc, before increasingly going rogue and progressing all on its own. A couple of doctors gave me some good insights, but the disease is still largely mysterious.

Don’t worry; I’m not planning on doing anything drastic. The urgency is moreso a desire to have peace of mind that everything I write will be published. The passage of time makes me feel uneasy now because my disease is now touching vital functions. Most people assume they will wake up the next day, but I feel like I can’t fully make that assumption anymore. I want to secure my ability to leave a legacy. Once I do, the stakes won’t be so high; I can be more at peace with the situation and won’t have to worry about the odds.

I’m very unlikely to die tomorrow or this week. I will most likely survive for a bit longer, perhaps a few months or so. This writing thing is a long-term process, more of a retirement activity that I work on every day rather than something I do all at once. I just feel like the odds of survival each day are closer to 499 in 500 rather than 99,999 in 100,000. The true odds are, of course, unknowable, so I am forced to work off of intuition.

I am still seeking a diagnosis. I’m currently pursuing a sleep study, visit with a neuro-opthalmalogist, and a visit with a new neurologist so I can have fresh eyes on this disease in light of the new evidence. I’m hoping that there is enough progression now that the damage will be radiologically significant. The problem is that I am still months away from them, and I don’t know how long it will take to finally get a full diagnosis, so I want to prepare for the worst ahead of time so I can leave behind a large collection of art and things I’ve made. But I agree with you that there is always a chance that this is survivable; I just cannot know right now. The chaotic breathing is quite concerning, steering me towards accepting the worst outcomes. But I am by no means giving up.

The bottom line is that the only time I can guarantee exists is now, with the probability of each subsequent second existing following a gradual exponential decay curve that we cannot directly measure. The solution to this problem is to set up the website and stuff for my family now anyway, no matter who’s right or wrong. No matter if my disease or something completely random gets me. No matter if I live for 5 more days or 5 more years. I just feel strongly about keeping a record of myself, and I know that if I had a different serious health problem, I would do the same thing. I have simply crossed a threshold where I am not comfortable with the risk anymore.

Perhaps I’ve made the impression of having a volatile or unhinged personality, and although this time is pretty stressful, it hasn’t prevented me from enjoying the things I do, writing about my ideas, and even trying art. I might seem a bit manic with my impassioned rant, but really, that was just something I had a lot of fun writing. I was always really awestruck by the nature of existence, and I don’t usually swear that much, so I thought swearing like crazy here would be a good way to communicate the magnitude of my appreciation.

I appreciate your concerns and criticisms, though.

Thank you, it makes me happy to hear that.

I’m not giving up, but I’ve also been making peace with death in the process.

All of my symptoms seem to be traceable back to one hypothesis: the brainstem, where the majority of nerve signals from the body converge, has been compromised. Progressive damage is causing it to send incorrect signals, resulting in random pain and symptoms over nearly every surface and system in my entire body, as well as the gradual breakdown of my autonomic systems, such as unconscious breathing and regulating bloodflow when standing. Unfortunately, every new symptom that happens only reinforces this theory, with many of the explanations for them being brainstem or cranial nerve damage. Sufficient damage to the brainstem is known to result in death, and brain damage itself isn’t directly fixable. All of this has led me to believe that this has a fairly high chance of being terminal with no medical recourse. Not 100%, but high enough that I cannot ignore it. The writing is on the wall.

Instead of pretending everything is going to be okay, I have chosen to accept this possibility and enjoy the time I have remaining. I can’t control when I die, but I can control how I react to it, and I want my final days to be peaceful and nostalgic, rather than horrifying and distressing. And hey, if I survive for longer than expected, I’ll take it.

Society has already failed me. Capitalism made me push through the pain that led to my injury, and the medical system gave me the middle finger. I was one of the few young people who slipped through the cracks. It’s very sad, but it happens. I hope that after I’m gone, people continue to push for a better world and develop the technology to finally diagnose and rectify damage to individual neurons, so nobody will ever have to experience what I went through, and go on to live happy and healthy lives.

Ohio, not too far from Columbus.

Thanks for the suggestion, but unfortunately no, I don’t have local friends. My POTS makes it hard for me to be out and about for long periods of time (I get lightheadedness and brain fog after just a few minutes of standing).

I try to be the best friend I can be to myself and live life in the moment. I tell myself that how proud I am of myself and that it’s okay to be scared or sad. When nobody else will tell me these things and when I feel so dehumanized and isolated, I try to treat myself with warmth and compassion where none exists.

I feel grateful that I had the chance to experience life at all. I got to experience so many amazing things - incredible video games, a fulfilling programming hobby, and the cutest of cat pictures. I always wanted to live my life building cool and interesting projects, and I’ve already built a website that well over 100,000 people used, solved problems that nobody else had before, and got my work featured in several videos on YouTube by people I considered celebrities. I shouldn’t be ashamed if a health problem I can’t control cuts my life short, because I did the best I could and kicked major ass while doing so.

I think of the YouTube creators I really enjoyed whose lives were tragically cut short in their 20s. Talented, entertaining, and charismatic individuals who continued their passions and shined brightly until the very end. I think the most humane existence I can give myself, for however much time I have left, is to keep doing what I love too, for as long as I still can.

I’m a man, though I suspect my young age and anxiety led to people labeling me as “just another teenager with health anxiety,” which undermined my position, despite how impossibly difficult it was to remain stoic.

As for my parents, that’s generally because I have toxic relationships with them and they are extremely hesitant to consider anything I think and believe. For example, despite my vehement disagreement, they told me that if I got vaccinated for COVID, they would kick me out onto the streets even though I had no financial footing and was struggling with my condition. Having no car or daily routine that would make it feasible for me to get vaccinated behind their backs, I eventually contracted the Delta variant and was forced to endure the full infection. I now have chronic cough.

United States.