I'm dying soon. What's a good way to share my heart and mind with my family and the world? I want them to know that life was fucking incredible.
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.
Ditto to this. Audio is extremely powerful, more so than video in my opinion.
Record yourself reading some things you've written and upload them to a safe space for your family
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?
Giant essay for context (1 / 2)
You make an excellent point; specialists would be able to give a more definitive answer, and I mustn't get complacent just because I have accepted this outcome. On the contrary, I think my chance of diagnosis is better this time around. The only issue is, I have to wait for literal months to talk to a neurologist and get more tests.
I have to consider the risk: do I wait for months - that I might not have - to go through the medical system again, and risk leaving almost nothing behind if they don't catch this in time? Or, do I set this up now, while still doing everything I can to get medical help, knowing that if it's indeed terminal, I won't regret the decision I made? I want a lot of time to write about all sorts of things.
My last neurologist ignored half of my symptoms and it took half a year for him to fully rule out his theory, after which point he said there was nothing he could do. He only focused on the full-body pain when I was having vision and heart rate problems at the time and my symptoms were progressing quickly. He diagnosed me with small-fiber neuropathy, which does not explain the pattern of attacks I have, the vision damage, motor symptoms, and it definitely doesn't explain the cognitive and breathing issues I have now. He did eventually diagnose me with POTS (very fast heartbeat when standing), but that was just one comorbidity out of the sea of unaddressed symptoms. I waited months for a second opinion, and all she told me was to just listen to the first neurologist.
Now that my symptoms have significantly progressed again, I think I have a better chance of getting a real diagnosis, not just identifying my comorbidities (e.g. POTS, neuropathy). The tests you mentioned were two years ago at this point, so it's possible that a new MRI will finally be clear enough to show damage. The problem is that, again, it will take a long time to verify a diagnosis, and that's only if it can be verified; it might be too tricky, for reasons I'm about to go into.
The only faster way appears to be the emergency room, and they don't take too kindly to me being there if I'm not literally hours from death. I had an attack where I could barely move my arms and legs at all for 2 days, and they immediately sent me home even then. This has led me to the conclusion that the emergency room will not see me until I'm already in irreversibly critical condition. Even if I was diagnosed then, it would be too late for me to leave anything behind.
I didn't go into more details about my condition because I didn't want to bore people, but I'll describe it here, because it's so unusual that I don't know if doctors will be able to diagnose it in time, and indeed, this might be a big factor as to why I haven't been diagnosed yet.
It all started when I was working at a restaurant and I was pushing through severe upper back pain (which I developed from overworking myself). Suddenly my arms became weak and numb, and an MRI later would show a herniated disc in the C7-T1 area. This was very scary, but after a week I was back to normal... or so I thought. This is where the weirdness begins. It all started with tingling in my hands. Then it turned into random pain. As I worked more and more, eventually, the pain suddenly jumped, spreading to not only my arms, but also my legs and feet. This is when I knew something very wrong was happening to me. I quit my job in hopes of avoiding further progression.
A couple months later, after carrying something heavy downstairs to help my disabled father, I felt a dull pain in the back of my neck where the disc was. I ignored it, thinking it would wear off. The next day, my nerve pain erupted all over my arms and legs again, but it had also spread to my face and the back of my head. I was in a panic at this point, and my primary care provider informed me that a neurologist would be a 6-month wait.
One thing that brought me comfort was the idea that I just had pinched nerves, according to my mother. I looked up the spinal nerves and the regions that they innervated and thought "Wow, I must have a lot of pinched nerves, but it makes sense since my muscles are in so much pain and I was working so hard." Applying this logic to the pain I had now would nonsensically imply that nerves directly attached to the brain were somehow being "pinched," specifically the cranial nerves that innervate the face, branching out from the brainstem. In other words, the pinched nerve theory was wrong. This realization was terrifying and I tried to ignore it, thinking that I just didn't have enough context. Surely it wasn't actually in my brain, right? I'm just overreacting! Everything will be fine!
A couple months later, I was taking an exam for college. I was looking straight down for 2 hours, and that familiar dull pain in my neck was back. I dreaded what was to come next. Sure enough, exactly one day later, the nerve pain flared up and spread... to nearly my entire body. Arms, legs, hands, feet, stomach, groin, face, head, neck, even the eyes. They were all in pain nearly constantly. The pinched nerve theory made no sense anymore. Every single nerve root, including some in the cranium, from bending my neck? All comfort was out of the window. This would start a wave of progression that would last for several months.
One day, there was a dull pain in the back of my eyes and my vision suddenly blurred, and nothing I did made it go away. I was panicking from barely being able to see anything. Periodically, the blur would fade in and out, until it stopped. Later that day, I noticed that my vision had gotten darker. It never improved. At this point, I had a new theory: my central nervous system was being attacked by my immune system due to inflammation from the the disc injury. Three weeks prior, I had read about optic neuritis, a condition that causes the blurring and darkening of vision, often leaving permanent damage over the same timeframe. It is closely associated with autoimmune disease. I believed that it could happen to me, and I was correct. However, I did not believe the disease was multiple sclerosis due to the involvement of the disc; there was no record of a physical injury causing MS disease activity. The disease would continue, causing my heart rate to beat insanely fast from just standing (POTS), and making me feel like I had to pee every single minute.
Finally, I got the chance to see some doctors. The neurologists I mentioned earlier didn't help much, besides confirming that I had POTS. I also managed to convince some ER doctors to give me MRIs, which helped in identifying that this is unlikely to be a purely mechanical problem:
This suggests that the herniated disc is in close proximity to, and at some points may be in contact with, the spinal cord, but would not cause these symptoms on its own. What nonmechanical process could cause such widespread symptoms in reaction to weird things happening in the body? The immune system.
At this point, I knew that anywhere could be fair game. It was horrifying to think about. Among my most harrowing thoughts was the idea that my breathing could become compromised. But maybe I will be fine, I thought.
(2 / 2)
Nearly 2 years passed. I changed my life to avoid ever irritating the disc ever again. My pain very slowly died down, but I gradually experienced worsening memory and got a few new symptoms, like slightly worse balance and feeling random acceleration, but probably nothing doctors could definitively measure. This progression seems consistent with autoimmune activity; these are common symptoms in MS, perhaps the closest, but admittedly imperfect analogue. I felt like I had reached a dead end with doctors and wouldn't be diagnosed without further progression, especially with many of them telling me to just listen to the other doctors who didn't help me.
Last month, I got the first flare-up that did not appear to come from my neck. This caused 5 main symptoms all at once:
At first, I thought the breathing problems were just sleep apnea and I needed to lose some weight. But then, the other symptoms quickly developed. I also realized how clear the breathing sounded, how chaotic my breathing pattern had suddenly become, and how I didn't seem to be snoring or anything at all (characteristic of obstructive sleep apnea). I realized that this might be central sleep apnea, where the brain fails to control breathing during sleep, explaining its presence alongside the cluster of new neurological symptoms. I then read about how in autoimmune neurological diseases like MS, symptoms like these are associated with mortality due to respiratory failure. This paper on neurological respiratory failure states:
I added some context in the square brackets.
For more context, multiple sclerosis is not the only immune-mediated disease of the central nervous system, with fast-progressing variants being known to result in death in a relatively short amount of time, often due to brainstem involvement. In the context of vanilla MS, this paper, which cites the journal of Neurology, states:
So, there is precedent for this kind of process being fatal, with specifically brainstem and respiratory issues being a common cause. What matters is progression speed and location, and I already have significant progression and directly compromised breathing.
Think about if this was you for a second. There's a process that's taking over your nervous system, giving you permanent damage, and now you suddenly have a new cluster of symptoms, more than half of which cannot be explained by anything other than brain dysfunction. (Where is the data for these coordinated muscle movements and sound effects coming from?) And now, your breathing at night is chaotic, randomly slowing down, speeding up, and stopping, followed by sharp inhaling. Sometimes you breathe in or out twice in a row. And you now know that your disease is unpredictable and progression happens no matter what you do.
Now tell me, in the context of all of this, would you be comfortable waiting several months for a full workup by a specialist before preparing for the possibility of death, when you know your disease is weird enough that they might not figure it out in time? Would you risk sacrificing your only chance to pour your emotions out on hundreds of pages and let everyone know how much existence meant to you, how amazing it was, and all of the deepest and emotional things about you? Would you make that bet? You may never have the luxury of knowing, and the disease will continue on no matter what; it doesn't care about the months you have to wait for doctors.
It's not about the theory being right; it's about it being possible. My arguments and theories are not perfect, and you could logically break them down in many ways. You could say that I don't know for sure that it's fatal, and you would be right. But that's not what matters here. Even if there is a 90% chance that I am wrong, that 10% chance I'm right is too high to risk losing the chance to leave my legacy. I will not be taking that bet.
I completely understand your point; a definitive diagnosis will always be better. And I am indeed pursuing multiple paths:
All of these will take months to get appointments, resulting in the current dilemma - that I might not have the luxury of knowing in time. If I am correct about the risk and neglect to preserve my legacy, the price will be astronomical.
I don't want to give people the impression that I'm about to do something reckless or completely give up on seeking help. I am also prepared for the scenario where I miraculously survive. I'm not going to refuse emergency medical care or end things early, if that's what you're concerned about. You're right that the fatalistic attitude can get too carried away and I should always challenge those biases so I don't miss something. I'm just not getting my hopes up in case things go badly.
My desire to set this up quickly is just a result of me being uncomfortable with the odds of every passing day, not an indication that I intend to do something drastic. I just want the peace of mind that people will see my writing. Perhaps I hadn't made it clear earlier, but I plan to write for a long time about all kinds of things, for pretty much however long I have left, building a larger and larger collection of pages.
I appreciate the comment and your concern. Sorry for the whole essay, but I felt like the context was necessary.
TL;DR: The entire history of my disease is highly unusual and I'm not optimistic about the efficacy of the medical system to diagnose it in time. I will, however, continue to seek tests and diagnosis in whatever way I can. Basically, there is a very unusual reaction to a herniated disc touching my spinal cord, causing widespread and prolonged phases of neurological damage. In early stages, the disease flared up in response to pressure on the disc, but now, I am getting flare-ups with no apparent physical cause whatsoever, suggesting a runaway process. A spine specialist told me that the herniated disc itself cannot be responsible for this kind of widespread damage, suggesting a different process. I believe that this process is an inflammatory autoimmune reaction.
I won't do anything drastic. The reason I'm worried about setting this up quickly is peace of mind; I want to know that even if the worst happens, people will be able to read my writing. I plan to write extensively, for as many days as I can, to capture as much of my life as I can.
I will pursue expert opinion as best as I can to finally get a full diagnosis, but I don't know if I will have that privilege due to the sheer amount of time it takes. In the meantime, I am forced to work with uncertainty and my own non-professional analysis, which, although supported with a couple of doctors' opinions, is still theoretical at this stage.
However, I was able to predict symptoms and aspects of my progression in advance, and, even if there's only a small chance that I am correct, I consider the risk too high compared to the price of losing the opportunity to share my genuine self to my family and the world. I remain open to the possibility that I could survive, but I want to prepare for the worst case, because I feel like if there's any sign I should prepare, it's the chaotic and disorderly breathing that I developed last month, a symptom that, according to medical literature, may progress to life-threatening complications in the context of inflammatory neurological disease.
Thank you for this thoughtful comment. I was also quite worried after reading this post and you took all the words right out of my mouth. Conversations about functional disorders (if that's what's going on) can be very tough and aren't always handled the best, or are unfortunately sometimes avoided entirely even if that's the suspicion. There's also still a ton of stigma out there about them (including inside the medical community) due to outdated Freudian theories without much if any factual basis and other myths like the symptoms are imagined or something. Different varieties of functional neurologic disorders may compromise up to a third of all outpatient neurology visits at least in part, the symptoms can be as broad reaching as the nervous system itself, and there's still so much we don't know about them with a great need for more research. I've found https://fndhope.org/ to be a great online evidence based resource for patients and families.
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:
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.
Random stranger here, but thanks for calling this out. Hope it helps OP, but I’m just generally glad to see someone’s paying that much attention on the internet.
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.
There's a good chance he has something going on causing him to have a distorted perception if reality. I deal with a lot of people like this who have paranoid delusions and often seem manic in the manor demonstrated in this post. What exactly have they done to treat it so far?
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. ^^</p>
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.
https://web.archive.org/save/
You can also save outlinks with an account, if needed.
You can search for the page's URL and if it's still not archived trigger the archiving process.
Can't really help with your request, just wanted to let you know you're amazing OP
If you want to safeguard your work from yourself, you'll need to lean on someone you trust. Give the person you trust ownership and control over your cloud materials and set it up so you can contribute edits but cannot delete.
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.
That's a very poetic way of looking at the way our data on these forms will be processed and ingested by LLMs in the coming years. I have been considering cloning my own voice and experimenting with the multitude of use cases that can provide.
All the developed literature as well as entirely documented human lives... Readily available with numerical recipes for their processing and integration into whatever societal infrastructure comes out of where we're headed right now.
It was strange for me to come to terms with that. The crowd that Lemmy fosters is such a different subset than the general population. Sometimes I wonder what growing up online will do to people down the line from us.
It's heart rending to hear what you're going through, OP. I'm sure your family will sincerely cherish what you write. I also agree with others who have mentioned to add stipulations on how you want your thoughts to be used. Not to speak for you, but I wouldn't want my likelihood desecrated in some manufactured effigy long after my death.
Not to say I didn't spend a fair chunk of my own life online, but with the advancements in materials and manufacturing methods, I wonder what storage devices and technologies will become sarcophagi for our archived lives...
Wishing you wonders in your last moments, OP.
That last para made me realise we 100% live in a dystopian world
Just wanted to say that given everything this post is an amazing bright light of positivity and an example for me of why the internet exists. To connect people, trigger amazing discussions and be something better than what it is currently. Thanks for the great post OP and every amazing commenter. Love you all.
I'm sure most of Lemmy would also like you to have this, a few extra sides on your dice. Take any colour you like.
Your cup seems to be overflowing with positivity, during what most might consider a particularly challenging set of life circumstances. I consider that an incredible skill which is truly inspirational. Top-lemming trophy right here for you too. •{≣}-(
Many who face equivalent experiences could benefit immensely by hearing positive advice and encouragement from someone in a similar situation, rather than from well meaning others that may struggle to empathise with their condition.
Recording your thoughts, philosophy and self-motivational inner-talk could be a comfort to many, or just express what it is you need to, it's your story.
Recording as text, audio, video, or all 3 are options. Get a decent mic and possible pop filter if doing video/audio.
For bit-longevity I'd recommend uploading to archive.org and then link back to the files from there. (Create account 20min, then upload 1hr etc)
To avoid deletion of files by yourself in the future, ask a trusted intermediary friend to upload them and to not tell you the password. (Or send them the login details once you have completed uploading, and they can reset the password to lock it from you) Be explicit about the conditions: eg. the password should not be disclosed under any circumstances, or it should only be disclosed if you demand it for 2 weeks straight, etc.
I wish you all the best for your remaining years(yes), and I completely agree with your evaluation of life, the universe, and the fantastic physicality and consciousness we experience as humans.
Congratulations for seeing 2024, and all the best for continuing to share your light with others. (c:
I'm not sure if you'll see this, as federation seems to be playing up on lemm.ee, but first I wanted to congratulate you on your attitude to life, it's an inspiration.
As to your question; I think Obsidian is an excellent tool for you to do this in. As it uses a fairly standard type of markdown for formatting you have plenty of options.
I'd suggest a two pronged approach to make sure your writing is accessible. In the first place, for the more personal stuff, just print it out. Put the printout in an envelope, write instructions on it that it is only to be opened after you pass away and then mail, or give it someone you trust (a friend, family member, solicitor etc). You can update it by jyst giving then a new copy, or just extra pages to add. I'd suggest making a couple of copies to be sure they get to the people who you want to read them.
For the general stuff, as Obsidian uses markdown and so does the wiki function on github, you should be able to just commit the vault to your wiki repository and have it rendered reasonably. That way it'll reflect your changes with little effort. If you're worried you might do something to it, ask a friend, or acquaintance to fork the repository and regularly sync it. That way you can't remove all the copies.
Let me know if you need more detail.
Thanks for writing this. It will stick with me forever, I’m betting.
Please also read that one person’s post about the dangers of self-diagnosing!
Finally, just use the GitHub desktop app to frequently commit changes to a public repository containing your files. Others can fork it and make sure it lives on even if you decide to nuke it all at some point.
Record as much video of yourself as possible. Text does not convey the emotion and tone that an actual video or audio would.
I think amazing people like you exist in this world to carry the burden of reminding us, actually, how incredible this rollercoaster of a life is, and that we get to experience it.
You could write a diary of sorts where you recount what you've lived through and how you felt.
This is one of those posts that really puts things in perspective for me.
my family will only remember the boring, inoffensive outer shell that I presented
I doubt it, even though i don't know you, I'll remember this post for a long time. I don't know what else to say but thank you for sharing your story.
Yeah same here. Dude you touched a lot of people today. I mean like in a good way … not in like a creepy dark-tinted windows white van sorta way.
Off topic but you HAVE listen to this song at least once before you go. The whole album is one of my favorites.
NGL, I kinda was hoping this was a rickroll...
it's not a rickroll but you might like it
Nice try, Ricky!
Based on what you wrote here, I would be surprised if they didn't already know how much you appreciate them.
Wondering if your vocal control will outlast your other fine motor skills, and therefore have you considered just recording your yourself monologuing anecdotes, impressions, commentary, what have you? I’m reminded of folks’ oft-time lament that they did not record their loved one’s voices in an every day setting and being unable to recall exactly how they sounded after they are gone.
You gotta wade through a lot of bullshit on social media generally, even here in the fediverse which I’m sure we consider to be a cut above. But every once in a while, you strike gold in a post like this. This place is a better place and I am richer for you having posted. I wish you the best of luck here and in the beyond.
Hey fellow traveler. Do make a post on Lemmy or share via a message. I would love to read what you wrote.
Videos of you talking. Shine on.
Hi, really sorry about your troubles.
I have software (goddinpotty) I use to publish a personal wiki-like site, and I'd be happy to help you use it for yours if you like (I write the content in Logseq which is similar to Obsidian). One thing it does is let you tag particular pages or chunks of a page as #Private so they don't get published.
I guess it is pretty similar in functionality to Quartz, which might be easier for you to use, but let me know if interested.
I love you too.
I don't have anything to add to the discussion, but that particular line resonated with me. When I was in college, one of my professors said something pretty profound that I think is relevant to this. I can't remember if he was quoting someone of if this was original, but I'm paraphrasing it here:
"Everyone who has ever lived was alive during the greatest time to be alive."
So I think you are absolutely right. Life is a blessing and you got to be here for the best life had to offer, and that's awesome. We are all but motes of dust, and the span of a full life versus a life cut short is inconsequential in the grand scheme. I'm sure you'll leave something behind that will be worthwhile and will help carry your memory forward in time.
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.
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.
“Unto them from whose eyes the veil of life hath fallen may there be granted the accomplishment of their true Wills; whether they will absorption in the Infinite, or to be united with their chosen and preferred, or to be in contemplation, or to be at peace, or to achieve the labour and heroism of incarnation on this planet or another, or in any Star, or aught else…” - Aleister Crowley
I wish you safe passage to whatever comes next. I’ll remember you.
Fuck ya bro! I suggest you leave traces of yourself all over the internet so that at some point in time someone somewhere might stumble upon it and know about you. Maybe along with a blog try logging the films you like on letterboxd? And write a short funny review?
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 :)
Just jumping in - I don’t really have any words sorry but you’ll be in my thoughts
I don’t really know what to say
On a tangential note of another comment about AI training and such, this is a touchy and evolving subject, but it might be good to include how you want your content to be used and not be used, and by whom, especially if you intend to make them public.
Create a shared drive online, change the password to a high char string and print the key in a letter. Put that letter and another paper with a guide on what it is, what it contains and how to access it and to not ask until it happened.
This way you don't have the elephant in your own room about the impending doom and your family will have access to your stuff.
Maybe make sure it's free tier or pay a year in advance so something like missing payments will not impact the mission with you not having access anymore.
Edit: Maybe on top make it a key with one way sync + versioning og which you throw the key to the admin console away so you are unable to change the sync direction.
I lost my father some weeks ago, and a neighbor we were close to passed away during Christmas as well. Thank you for this. I've felt surrounded by death and have been in a pretty bad place, this post brought me joy.
Quartz is a great idea. Make a public repo for your public stuff.
Then, you can make a private repo for your private stuff, and send the generated files via email/Google Drive, or use a different static host that has password protection (not really aware of any off hand)
some wiki backends allow password protection. for example, mkdocs, which also renders markdown, has mkdocs-encryptcontent-plugin to allow global or even page-specific passwords for private repos.
but these encrypted pages would of course have the risk of not being archived by the wayback machine.
I think you should get your hands on some MDMA and take it with your family.
I am saving this post.
My thoughts are with you.
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.
Wow. I’m sorry to hear about your illness, but I’m really happy you seem to have thoroughly enjoyed living and have made your peace. I have such a hard time enjoying life sometimes, so I really do appreciate hearing your perspective.
I think the best thing you can do in life is appreciate what you have, and not worry so much about the things that are out of your control, and you seem to have this all figured out.
I hope you do go through with these notes and don’t decide to delete them or anything. Genuine perspectives from people are a rare treasure in this world, and I think if you’re comfortable sharing them you really should!
If you want to hold yourself accountable, maybe the easiest thing is to upload to a GitHub repo or something, and I’m sure some of us would be happy to download it and mirror it. I’m sure many of us will happily run a script to fetch it every hour or so, and then you wouldn’t be able to delete it from me and other volunteers. If you gave us contact information we could make sure it gets to whoever you wanted. Might be a bit of an awkward email to send, but I guess it would be for the best 😅
Share everything you've written here, write more stuff, send that to them.
I can't begin to imagine what you're experiencing.
The only thought I have is that you should do something to record how you feel, whether it's writing your thoughts down or recording a video.
Something like that.
You have an amazingly positive outlook on life and we're all lucky to have your company. I'm just reading "I am a strange loop" by Douglas Hofstadter, and what you were saying regarding recording your thoughts reminded me of a point it made. Hofstadter argues that as we learn about another person we effectively start replicating the same patterns that happen in their minds in our own. These obviously don't have the same fidelity as the primary pattern in the other person's head. However, in some small way a part of that person does end up in our own heads. And in that sense an aspect of that person is alive. When I listen to Prokofiev's violin concerto 2, a tiny part of what Prokofiev was ends up running in my mind as well. So, I think your idea of leaving as much of your thoughts around is spot on.
As for the technical question, I think GitHub Pages is probably one of the easiest ways to host for free. Using a generator like Quartz or Hugo makes it easy to add content too. I've been using this approach for my blog, and it works well. You just add a Markdown file with new content whenever you want. I'd suggest maybe putting your ideas on a couple of different services as well. GitLab also has a pages potion, you could make a thread on Lemmy. The more different servers the data ends up on the longer it will persist.
I wish you all the best, and hope you get to enjoy this ride a while longer.
Also the benefit of GitHub pages with the text being stored open-source is if they ever do the Artic Code Vault again, that could in theory last for over 1000 years: https://archiveprogram.github.com/
oh neat, didn't know about this
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.
I'm not sure if it's possible, but when I was 18 and pretty sure I wasn't going to survive it was my family and the future opportunities to travel that got me the most. So if you can, I'd travel places with family. Your Internet archive idea sounds cool too though. It's a heck of a lot more creative than I am.
I'm into genealogy so my idea always was that before I go, I'd like to left something about me on some genealogy website like familysearch.org . Now bear in mind that the website is owned by some Mormon church but it's huge. Afaik you can put quite a lot in there (not just birth date) although I personally never executed my plan of putting that much info in there (I'm a bit afraid that my info will be missused or cause problems for me or my children but once I'm gone it won't matter that much). I don't know if it's right for you but there is this option. Maybe someone somewhere will make a family tree and say, hey, there was this distant relative of mine and this is their story
I wish you luck on your journey. Thank you for sharing your thoughts!
I really envy your positivity. So many people are not appriciating life at all, mainly because capitalism / lack of money and all that shit they have to deal with though.
You learned to see the beauty of life and you are so young. Many people never see it.
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.
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.
If you have some technical friend with the time and will to organize your note. Let your friend make a github (or whatever git based system) repo, do not give you admin/owner permission, and turn off your permission to force push.
In this way, even if you delete everything and push, said friend still have the ability to recover everything from git history.
They can also setup a basic 1-2-3 backup system, so that a mistake on GitHub's side (highly unlikely, but not unheard of) won't delete all your work.
You're awesome.
Maybe consider a version control system like Git on Github. Maybe do an occasional backup. USB sticks might work for that. If you circulate 3 or so between you and your family/friends, you can update the last backup and then continue the circle and 2 backups will always be with them. I can imagine a blog that is snapshotted regularly or a cloud drive could do the same.
Writing your stories and thoughts down is an excellent choice. My granddad used to do this and while he told us many stories when he was alive, I can still read his words today.
You could also experiment with recording your voice. I don't know if you're still fit enough to do it. But I read some people would love to hear the voice of their relatives once more. I don't think it matters too much what you read/speak. It brings back memories anyways.
I agree with other people here. Convey your values, your positivity, stories and perspective on things. Maybe I should take a step back and think about my values and if I want to share my perspective, too.
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.
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.
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
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!
( :
_ /\ _
What hogwash.
Yeah wtf was that
Yeah I don't think you really survived the brain damage.
Train an AI on all your writing so that people can speak to you forever.