Please don’t get me wrong: I have the greatest respect for all those who try against all odds. I just think that the idea of the Internet utopians was that the Internet would promote enlightenment, understanding and education. I simply have the impression that the opposite has generally happened.
Wow! Sometimes we hear people say “a little bit OCD” about themselves or others, including autistic people. Lots of people, including many autistic people, have certain habits or ways of doing things that might seem a bit odd, or even obsessive to others, but are definitely not OCD. A former colleague of mine has OCD & finds this use of the term quite distressing, because it trivialises the condition. #OCD#ActuallyAutistic@actuallyautistic
Japanese disaster prevention X account can’t post anymore after hitting API limit - The issue has arisen after major Tsunami warnings have been issued in areas of Japan following a strong earthquake::undefined
I used to teach ESOL students and this is quite common. Very accomplished students who had often come over for some quite skilled jobs, but hadn’t used a mouse before. It’s hard to remember how odd it is as a control system when you’ve used them from childhood.
Often they’d used phones or tablets though so they’d all be touching the screens.
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:
The breathing problems described in this post, which gradually got worse over the next few days.
Completely involuntary large-scale movements. This includes suddenly raising my arms up or sitting up in my bed, without any input at all.
Auditory hallucinations at night, which include loud whooshing sounds, sudden buzzes, and people talking (including someone saying “Hello?”).
Random popping, crackling, and muscle twitching inside of my nose.
Bladder function getting weaker.
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:
Inflammatory and infectious diseases of the CNS are a very heterogeneous group of diseases that can affect CNS function with different patterns of symptoms and signs. Pulmonary complications are related to an altered breathing control system, severity of associated reduction of consciousness, and involvement of respiratory muscles. Pulmonary impairments have long been recognized as major causes of morbidity and mortality in individuals with advanced multiple sclerosis, due to acute or chronic respiratory disorders. Chronic RF [Respiratory Failure] involves bulbar [brainstem] dysfunction with swallowing disorders, altered central respiratory drive, motor disorders following corticospinal lesions, or sleep-disordered breathing[includes central sleep apnea]. Acute conditions mainly involve spinal or bulbar [brainstem] relapse [flare-up] with extensive plaques, neurogenic pulmonary edema, or ARF [Acute Respiratory Failure], often following sepsis. Common pulmonary-related complications in encephalitis are poor gag reflex, pooling of secretion, and loss of swallowing, with risk of aspiration pneumonia and RF [Respiratory Failure] development.
Deaths due to MS can occur either by acute death due to brainstem involvement or to respiratory failure, or as a consequence of chronic disabilities leading to bronchopneumonia, sepsis, urinary tract infections or complications from decubitus ulcers.
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:
Trying to get a neuro-ophthalmologist to confirm optic nerve damage.
Doing a sleep study to measure what happens to my breathing patterns and oxygen levels when I fall unconscious, as well as having a sleep doctor assess the unusual patterns.
Trying to get a new neurologist to assess the condition, hopefully ordering new MRI scans and/or a spinal tap. I suspect that I am at the point where the damage will be radiologically significant.
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.
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.
I’ve been watching Tom for years and now that this video is here it gives me a very bittersweet feeling, it’ll be odd not having a new video from him on Mondays. But good on Tom for realizing what’s important to him and putting it first, although I do hope that some day he is able to return to YouTube or media. And you never know, depending on how much time he takes off, maybe the next series will be “Tom Scott goes to space”!
Oddly specific playlist. I looked it up and went through the songs, kind of a weird mix that swings wildly between genres. They were definitely just going after song titles to match the theme. On one extreme, there’s a soft Dolly Parton song and some other kind of very calm relaxing songs, next to death metal and punk on the other end, it’s very much all over the place.
Today, I made switch to fedora silverblue and then rebased to ublue image because it has flatpak included in the image. I am also thinking about making my own image based on silverblue. there is a video made by bigpod a youtuber about how to make your own custom ublue image and I learned a lot from that video. I am using toolbox...
Flatpak is the primary way that apps can be installed on Fedora Silverblue (for more information, see flatpak.org). Flatpak works out of the box in Fedora Silverblue…
Just seems very odd to distrohop for one main reason (flatpak in this scenario), without even checking if that reason is available in your current distro…which it is, out of the box.
Odd that you’re not calling for those other subjects to face condemnations and scrutiny as well. I don’t think mass shooter jokes or jokes about child sexual abuse are funny. Comedy doesn’t exist in a vacuum it has real-world effects on how people think and feel about the subjects it ridicules. We shouldn’t tolerate the normalization of these things.
I watched both his and Gervais’ latest last night out of morbid curiosity. Both were profoundly unfunny. To be fair, Chappelle was marginally funnier than Gervais, whose act seemed like a barely-disguised checklist of right-wing talking points spouted off by a narcissistic man-baby who constantly laughs at his own “jokes” (and seemed like he had a laugh track or just poor audio editing) Chappelle, at least, elicited a few chuckles when he was willing to make himself or th, insanely wealthy (pretty lackluster running bit about the submarine implosion) the butt of the joke. His constant making “joking” about trans, gay, and bisexual people was just not funny.
I think that the root cause of their shifts is that they were always in life for themselves, looking up at the rich and powerful thinking “I want that”. So, when they were getting established, the underdog thing was useful. But, they never saw themselves as underdogs but the temporarily-embarrassed millionaires. Once the got their piece, they’re right there next to the boomers with the “fuck you, I got mine” attitude to court the favor of those that will reduce their need to give back to the society that they benefitted from. I’m pretty sure neither of them are actually discriminatory in their private lives (they both basically say as much); either they just absolutely lack scruples and are happy to play a shithead to make money and powerful friends or, their pride and ego doesn’t allow them to publicly acknowledge fault and not understanding that context and nuance matter (odd to think as they are professional wordsmiths).
Yeah, I’m right there with you. He came up in a conversation over the holidays and I had to go through how in my opinion he had potential to be one of, if not the best, comic of his generation and he squandered it by needlessly punching down and taking oddly vindictive stances. Maybe this is always who he was, but I think the fame and frustration that came with how his career played out changed him.
I can’t reconcile the Dave from old interviews and shows with this one, and it’s kinda sad.
That’s odd, because the first and last episodes are usually the most downloaded; People will grab those to add to their seedboxes, because the “download first and last” option is an easy way to sample the torrent before fully committing. So typically speaking, it’s easiest/fastest to download the first and last episodes, since those are what is most available.
Fear Mongering About Range Anxiety Has To Stop — CT Governor Calls Out EV Opponents::Several state governors are fighting fear mongering as they attempt to reduce transportation emissions in their states.
Actually solar powering my house was my first consideration. I’m already dealing with an electric company that didn’t think it was odd when they turned off the power to my house and the meter kept running (my typical monthly usage is around 4000kWh which breaks down to over 5000 watts of solar panels and roughly 300 square feet of roof space that isn’t blocked by trees) so I’m trying to find an electrician to replace the wires between the meter and the house. The assumption here is that the wiring has a ground leak – the more power I pull, the faster the leak, which ramps up my bill quickly. Meanwhile I’ve been considering installing solar panels on my house to offset some of that usage. Even if I’m really only using half that amount of power, that’s still a LOT of required solar panels and as I said there’s not a lot of exposed roof space available. My calculations weren’t including trying to recharge an EV because I don’t have any numbers on how much power that would pull.
Basically where I’m sitting, about 2/3 of my roof is blocked from sunlight by trees on the East and South which is great for keeping the house cool, but not so great for solar panels. If I was trying to supply half of my current electrical usage I would need roughly 12 square feet of good sun throughout the day, but my Southern roof only has that much exposed for 4-6 hours in the middle of Summer. In the Winter one of the trees to the South of me will lose its leaves, but the other tree to the South and all the trees on the East side are massive evergreens that block the sun all year. I’m having a hard time getting the numbers to add up just to supply my house with power, I just don’t see any way to also recharge a vehicle (let alone two). It’s still a project on my radar though and something I really want to get in place since I do use quite a bit of power here.
Oh, and that $15,000 installation price was for more typical homes that use less than 250kWh/month. Obviously I am nowhere near that.
Right before I fall asleep, I’ll remember some random details of a dream I had when I was 5-10 years old. It changes each night, but never is a newer dream....
The resolve of [Biden’s] dramatic presidential trip to Israel has given way to frustrating phone calls, sharp public comments and exhausting marathon meetings. The relationship has grown increasingly fraught as Mr. Biden has involved himself more intensely in the conflict than almost any other issue in three years in office....
The flowery descriptions and use of adjectives are all fawning over Biden. It’s odd to see a president get such praise from a professional journalist and I can’t think of a prior example by the Times in recent years.
Thanks for clarifying about what they meant by credibility, but it’s still deeply frustrating that Biden is working so hard to soothe Israelis while being absolutely tone deaf at best to Palestinians. For example he was uncritically repeating claims that he had no doubt a Hamas command center was under the hospital and after all that carnage there want. Even his op-Ed in the Washington Post where he tried to mention Palestinians came off as insulting (he said Jewish Americans were scared and Arab Americans and Muslim Americans were angry. We’re terrifed too, hate crimes have skyrocketed, and it almost sounds like he’s feeding into a stereotype about us.)
I completely agree that Biden has been tone deaf when speaking about Palestinians, Arab Americans, and Muslim Americans.
The flowery descriptions and use of adjectives are all fawning over Biden. It’s odd to see a president get such praise from a professional journalist and I can’t think of a prior example by the Times in recent years.
In that paragraph? They say that this conflict is incredibly divisive and then re-purpose a direct quote (‘he had to go…’ in italics) to say that Biden’s painted himself into a corner. I can’t see how that can read as fawning praise. The entire article presents a mixed record. Their efforts to prevent a broader war have been successful, their efforts to reign in Israel have mostly failed (in part because Netanyahu keeps ratfucking them), and they don’t seem to have a backup plan to pivot to unless occasional criticism can be called a plan. And it can’t be called that because they reported that it was all unplanned outpouring of frustration with the Israeli government. I don’t think Israel, Natanyahu especially, comes out looking good either.
So much of this article is about how furious Democrats are about their stance on the war and how frustrated the administration is about how little they’ve accomplished. Even the supporters they interview are far off from fawning praise. Chris Coons’ “he’s had some impact” is not exactly a ringing endorsement and he’s someone to expect praise from.
A US appeals court Saturday paved the way for a California law banning the concealed carry of firearms in “sensitive places” to go into effect January 1, despite a federal judge’s ruling that it is “repugnant to the Second Amendment.”...
No, I’m not assuming you are a conservative. I am saying these “common sense” arguments are faith-based much like a lot of conservative thinking, which is why I am saying it shouldn’t be done.
Doesn’t it strike you as even a little odd that, despite multiple people telling me that a shooter will take out the armed civilian first, not a single person has actually given an example of this? I’m not talking about a statistical survey, I’m talking about even one example.
The only answer I have received so far from anyone that doesn’t rely on “this makes sense to me even though I can’t prove it” is the person who says it isn’t about a deterrent, it’s about feeling safe. And I wish that’s what everyone else had said because at least you don’t need evidence for that sort of claim. On the other hand, it’s a little hard to justify laws based on what makes you feel safe considering that’s a big impetus for the drug war.
Just started this one but Afterimage is becoming a big favorite of mine. A really great Metroidvania game.
Older, but also played Frostpunk. It’s a really great twist on a city building game. Highly recommended.
One odd ball I’ll throw out is Last Case of Benedict Fox. It’s a complete mess of a game, but the exploration and puzzles are a lot of fun. I never realized how much I want a metroidvania where you go around just solving puzzles. If LCBF just dropped all combat and focused on puzzle-solving it would have been a lot better.
I think I might cancel. I’m not watching ads and I’m not going to pay the extra $3/mo to opt out. I don’t know if I’d end up paying more than the subscription cost in shipping though…...
Today's web is the opposite of what early Internet utopians had in mind. Now the situation is somewhat similar to climate change: even committed activists can no longer turn the tide for the better.
Thoughts on this? (futurology.today)
Nearly 200 names linked to Jeffrey Epstein expected to be made public (www.theguardian.com)
List could be released as soon as Tuesday after deadline for objections to unsealing of names passes midnight Monday...
Japanese disaster prevention X account can’t post anymore after hitting API limit - The issue has arisen after major Tsunami warnings have been issued in areas of Japan following a strong earthquake (www.dexerto.com)
Japanese disaster prevention X account can’t post anymore after hitting API limit - The issue has arisen after major Tsunami warnings have been issued in areas of Japan following a strong earthquake::undefined
The Nigerian teens clueless on computers but aiming to reboot (www.bbc.com)
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,...
After ten years, it's time to stop making videos. (www.youtube.com)
Crunchy. Delectable. (startrek.website)
I have started using fedora silverblue
Today, I made switch to fedora silverblue and then rebased to ublue image because it has flatpak included in the image. I am also thinking about making my own image based on silverblue. there is a video made by bigpod a youtuber about how to make your own custom ublue image and I learned a lot from that video. I am using toolbox...
Dave Chappelle fills Netflix special with jokes about trans and disabled people (www.independent.co.uk)
Dave Chappelle has released a new Netflix special, The Dreamer, which is full of jokes about the trans community and disabled people....
Not noice (sh.itjust.works)
Fear Mongering About Range Anxiety Has To Stop — CT Governor Calls Out EV Opponents (cleantechnica.com)
Fear Mongering About Range Anxiety Has To Stop — CT Governor Calls Out EV Opponents::Several state governors are fighting fear mongering as they attempt to reduce transportation emissions in their states.
Does anyone else remember dreams from when they were kids right before falling asleep?
Right before I fall asleep, I’ll remember some random details of a dream I had when I was 5-10 years old. It changes each night, but never is a newer dream....
The U.S. and Israel: An Embrace Shows Signs of Strain After Oct. 7 (www.nytimes.com)
The resolve of [Biden’s] dramatic presidential trip to Israel has given way to frustrating phone calls, sharp public comments and exhausting marathon meetings. The relationship has grown increasingly fraught as Mr. Biden has involved himself more intensely in the conflict than almost any other issue in three years in office....
Sophie's choice 70s edition (lemmy.world)
Appeals court allows California law to go into effect, restricting concealed carry in public places (www.cnn.com)
A US appeals court Saturday paved the way for a California law banning the concealed carry of firearms in “sensitive places” to go into effect January 1, despite a federal judge’s ruling that it is “repugnant to the Second Amendment.”...
What's your favorite game you played this year? (Doesn't have to be released this year )
Prime is adding ads to their streaming service
I think I might cancel. I’m not watching ads and I’m not going to pay the extra $3/mo to opt out. I don’t know if I’d end up paying more than the subscription cost in shipping though…...
Going to be a busy day