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Old 09-17-2021, 08:52 PM #1
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mosscaptor mosscaptor is offline
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Location: montana
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3 yr Member
mosscaptor mosscaptor is offline
Newly Joined
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Join Date: Sep 2021
Location: montana
Posts: 1
3 yr Member
Cool hello from double vision land

hello everyone!
by the looks of it i might be the youngest one he re!
my name is meir, im 25, im a historian of ancient japan and china, and im going blind for reasons i don't completely understand.

but more than that, im here to hang out!

let's get the medical stuff out of the way first.

when i was 5, right before school, i was diagnosed with "high functioning"/"high IQ" classical autism, which, now in adulthood i know is definitely different from asperger's, though I can't understand why, and also with a strong astigmatism.

both were no surprise, my dad was the same.

then, when i was a bit older in elementary school, around age 10, i was diagnosed with both temporal lobe epilepsy and frontal lobe epilepsy, both focal seizures. that was a surprise, before that point, my dad just thought I was being weird or something, I don't really know, I attribute a lot of that to him being an immigrant and, speaking english quite well but not being, i don't know, acculturated, you know.

anyways i went to a magnet school for gifted disabled students at the time, so they flagged it.
i was also diagnosed with non-24 circadian rhythm at that time but that one's just cool in my opinion.

i could go on and on about what my seizures are like but this is already long as it is.

anyways, i took anticonvulsants for some time as a child, but they didn't stop them and either made me have really bad spasming nerve pain and jerks, or just horrible hypersomnia, so we stopped. ive tried as an adult, but it's always been the same, i have a seizure at least weekly still but I don't consider it the worst of it all, I prefer it, I've only had a tonic clonic twice or thrice.

anyways, as a teenager I was diagnosed with Ehler-Danlos Syndrome, I had/have horrible neck pain right below my skull and very low blood pressure, I'm very immune to cold but yet hot very easily, i can't sweat very much and I can't vomit and I'm very tall for a woman [5'11] and very androgynous looking with very low of all sex hormones and long noodly limbs and a fast heartbeat and slightly webbed fingers and toes and always underweight no matter what I do, no thyroid problems though, and my shoulders dislocate and my knees do and i have numbness and everything, and I can't build muscle but have strong flexible ligaments, etc etc......

anyways, at that point I was having what I called migraines, often if I moved my eyes left and right I would get what I described as "a grapefruit spoon scooping out my eyes from the inside", which would last five minutes or so, and weird painful eye twitches.at that time they realized I didn't have peripheral vision, though I don't have amblyopia or anything. I was diagnosed with ophthalmoplegia, but that's never seemed right.

anyways in undergrad that kept getting worse, leading to periods of occasional complete eye paralysis, combined with a sort of double vision effect where you don't see two things exactly but they kind of smash into each other in a tunneling effect, my depth perception has gotten really bad, random black out spots in my vision that go away and come back in similar places, and at least monthly full blindness spells for a few minutes.

this all keeps getting worse, along with fainting spells. no tumor or anything like that, speculations about the optical motor nerve, jaw locking, etc, a biologist friend being worried about demyelination disease, a billion second opinions, for a long time I just gave up, y'know, I've got interests and obsessions to focus on... [Though of course I was obsessed with neuroscience too ;____;]

then during covid times, being in my PhD, it just kept getting worse, definitely because of teaching and going to classes online, I'm usually not on screens that much. having to get accomodations and letters so I don't get fired because classes are online but this is the best job for a chronically ill history obsessee, but with classes moving online if I couldn't give documentation I would get fired if I couldn't use the computer. So I'm in that place right now,,
no clear answers, while being terrified both of going blind and being able to keep any job...


But, I'm not just here for that! I don't know what being just here for that would mean! I'm really excited to meet you all and talk about brains and beetles and art and writing and the world and all of those immense things, recommend some techno music and maybe make some friends!

Thank you for having me!
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