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.
Just wanted to jump in and say thank you for the post and you rock. We’re lucky to have you here.
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 was going to suggest just this: read this post out loud and record it. I think every bit of this would be touching to someone who’s close to OP.
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.
I recently lost my last parent. I have shit tonnes of pictures, a few videos, but not much of their VOICES.
I can’t remember what my Dad sounds like because he passed so long ago, before the digital age. I would absolutely love to be able to hear him again, just one more time.
Make some videos. Not just one, but at least two. A solemn dignified one, that will give closure and hurt, and at least one that is light and airy, stupid & fun, you being you, and never mention or draw attention to the fact you are or have passed.
You could open a new Google/YouTube account and schedule video releases, though I’m not sure how far into the future. Leave the account info so your loved ones can subscribe, but don’t give them the login info, hence new account.
I hope when it’s my time I can mirror you to some degree. You’ve already had an impact on my life.
I love you.
You might want to give the login information as google accounts dissapear quicker now if inactive
Shouldn’t be necessary, as Google accounts have a setting for notifying addresses you provide after 3 months of no activity - https://support.google.com/accounts/answer/3036546?hl=en. The account deletion was for accounts not accessed for two years, and I think it excluded those with YouTube video channels.
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.
Have your neurologists agreed with your estimate of impending doom, or is this a conclusion you have come to on your own?
Disturbance in sleep breathing such as you are describing could be as simple as sleep apnea which is fixable.
In your previous post it seemed like the way you discussed your relationship with neurology was that the institution failed you and that you had come to your own conclusions regarding your issues being the brain stem, and mentioning new symptoms of breathing issues as being why you thought your time was limited but not indicating this was feedback you were getting from your doctors.
My concern is that the language you are using in describing your situation has progressed over the past month to the point you are now describing your fears about further progression as a top concern in combination with your fatalism around the ultimate outcome of what you have going on, even desiring a way to leave a lasting mark in only one day from now, which seems very alarming in that you might try to take matters into your own hands.
That may end up killing you quite unnecessarily when your issues, particularly the latest symptom, may not be as intractable as you think.
You’d mentioned before that the tests performed by the neurologists all came back as normal. This disconnect between symptoms and tests isn’t uncommon, and you might want to look into finding a neurologist that specializes in functional disorders - if that’s what is going on it can be treatable but the longer it goes on without treatment the more difficult it is to treat.
In any case, you absolutely should not be self-determining prognosis without it coming from a medical professional, and should never take matters into your own hands based on a self-determined prognosis. If your doctors have only given you a short time to live, so be it - but I get a strong sense given the progression of what you’ve said in your posts to date that this isn’t the case and you may be in life-threatening danger from your brain, but not in the way you think.
TL;DR: Do your neurologists agree that your recent breathing issues mean you are likely to die soon?
OP stated his diagnosis. I’m sure his statement about loss of control due to neurological issues isn’t a Web MD search, my friend.
Actually, they didn’t mention any specific diagnosis. And you might want to read their post and history more closely, such as this line above:
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 really looks like OP is coming to their own conclusions by what they are reading online, not by what they are being told by a neurologist based on exam and tests, and is then being driven further into a spiral of seeing the condition as inescapable because they’ve convinced themselves of a worst case scenario.
This is probably exacerbated by their comments in the past of having normal test results and feeling dismissed by their neurologists in spite of their symptoms, which as I said is not all that uncommon. Most neurologists that don’t specialize in functional neurology don’t handle patients well that have normal test results, and may not even be familiar with the more recent research regarding functional neurological disorders.
Someone close to me is a neurologist who specializes in functional neurology, so I hear a lot about frustrations regarding the ways in which patients with normal tests but abnormal symptoms can be dismissed and feel unheard by their general neurologists, hence my recommendation OP seek out a subspecialist.
But the more pressing issue is that OP’s progress in their post history is very alarming with a number of red flags for potential self-harm in the near future (such as “hey Lemmy, how can I leave a permanent record for when I’m gone in a day”), which is especially frustrating given that what they have going on is likely treatable and their self-diagnosis and prognosis is unlikely to be agreed upon by a medical professional without positive test results, which they previously said they didn’t have.
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.
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.
