Me, criplit author, to one of my writing pals: If I were writing out my own course of #LongCovid with the aim of sketching out a fictional character, I would 100% scratch it out as not plausible. "Tone down. This is verging on ludicrous. Pull back on the crises."
On a serious note, I think that is a factor in why it's so difficult to get doctors to believe us. Disbelieving patients is a feature of medicine, don't get me wrong, but as a medical geek, no other illness has caused me to keep checking the *instruments* due to wild readings.
When you grow up with doc's offices and hospitals a regular feature of your life, you learn early on that wild readings happen and not to freak out about a blip, but when *everything* looks like a blip but the equipment isn't faulty, are we measuring useful things anymore?
I'm not saying anything profound, but I'm sitting here with a fever of 101.4F, the tinnitus is back, a bunch of other symptoms back, yet a sat of 99(?) for the first time since June, so I'm feeling contemplative, I guess.
Update! Well, it was 99 eight minutes ago when I wrote the tweet before this one, but now... see? Implausible. Surrealism. Just... Monty Python's Flying Circus of Bodily Malfunctions. (Hey @EricIdle, would there be legal trouble to be had for subtitling Long Covid thusly?😁)
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Didn’t expect this comment to take off – I was lending support to a fellow chair user who’d had a traumatic experience many of us have, and this discussion arose. Since it seems to have shocked some bipeds, I want to talk about what to do if you see it.
The first thing to remember is, the vast majority of wheelchair users *cannot* afford to escalate confrontations in public. If you’re going to say *anything*, please make sure you’re not Hulking out on the perpetrator – they will take it out on *us*. Aim to defuse, not enflame.
There are two different behaviors to watch for. The first is much more common – a stranger grabbing a wheelchair user from behind and shoving us out of their way like we’re an empty shopping trolley (no “pardon me,” no “sorry,” no acknowledgement there’s a human sitting there).
My original life plan from ~8 was to be a pulmonologist specializing in cystic fibrosis. I spent all my free time at uni on an underground citizen research team dedicated to trying to crack the biochemistry.
(2/9) We were on the right track, but ~20 years too early; our research was the very very VERY beginnings of what eventually led to ivacaftor (Kalydeco). So when I plow through a Covid abstract & break it down a bit, know that I have no qualifications, but it’s a lifelong hobby.
(3/9) The piece above reminds me of a solo trip to the local science museum during a history of medicine exhibit. A substantial section was devoted to “orphan drugs” – drugs that had been fully developed and passed safety testing, but never got funded for efficacy trials/license.
I had no idea Father and Son was originally written as part of a(n unfinished) musical set during the Russian revolution. Continue to be impressed by the fact that Yusef Islam/Cat Stevens voice hasn't changed a bit in 50 years. (Why do I care? Personal anecdote ahead.)
When I first transferred from segregated gimp school to tree hugging hippie school, folk/protest songs and guitar were part of the curriculum. We sang a lot of Cat Stevens (+ Jimmy Cliff, Peter Tosh, Pete Seeger... you get the idea). So, there's a certain subset of music...
That takes me back to the days where I was just discovering what autonomy meant, how big the world was and how little I knew of it, what being disabled really meant (sociologically), what injustice was, what intersectionality & being an ally meant, and what to do about any of it.