#but long nonsense words like that or strings of emojis can be hell for folks with screen readers

[persnickety-peahen]

i saw a post talking about how wild the human brain is, and in the comments, someone mentioned aphantasia, which made me feel things and i just have to talk about it so here ya go all seven of my followers and people interested in whatever tags i end up using:

if you don't know what aphantasia is, no shame at all. although it's becoming more widely known and researched, it's still a fairly obscure neurological condition. heck, i only know about it because i read an article on it once about six years ago and realized, hey, i have that!

essentially, aphantasia is the lack of a mind's eye, an inability to voluntarily produce mental images. sometimes it's acquired after a brain injury, but it's predominantly just something folks are born with. estimates about the number of people it affects vary pretty significantly—i've seen everything from 1% or less to as much as 5% of the global population! that's wild! statistically, that means you might probably know someone with aphantasia . . . or maybe you have it yourself but, like me, didn't even know it was a thing until someone told you it was and now you've got a little mini existential crisis on your hands where you realize that the brains of at least 95% of the people you know work in a fundamentally different way from your brain and you're missing out on an experience they all have in common and aaaaah

i don't know anyone else irl who has aphantasia, so when i find someone online who does it's like that moment when a dog sees another dog and recognizes that they're a dog and just goes absolutely crazy. i am consumed by the desire to overshare infodump about all the ways aphantasia has affected my life and then compare notes like, do you also have such a bad autobiographical memory that more than half of your childhood memories are actually reconstructions based on stories other people have told you about your own life? do you also sometimes get unreasonably anxious about being a victim of a crime someday and getting a good look at the perpetrator but not being able to describe them to police later because you can't picture what they look like and even a sketch artist wouldn't help and would probably only make things worse as whatever they draw would slowly replace what little memory you do have? are you one of those aphantasiacs who never got into reading because you couldn't picture things? or are you like me and loved reading anyway, but a) got really bored and pulled out of it when authors spent time describing what something or someone looked like because it didn't do anything for you and b) got really confused when your friends would talk about how they didn't like the movie adaptation of something because it "wasn't how they pictured it when reading" and you didn't know what the hell they meant by that? and then you went on to become a creative writer obsessively concerned with imagery and if you have enough of it to satisfy those people who actually like when things are visually described? do you want to get into drawing but give up in frustration every time you try because of the lack of direction you experience from not having an image in your mind's eye to that you're trying to draw in the first place? do you need visual aids to really understand certain scientific and mathematical concepts? were you frustratingly bad at making and interpreting graphs for school projects and presentations? and now you hope you picked a career path where you won't ever have to do that ever again?

are you also terrible at estimating distance and length and height because words like "foot" or "meter" mean nothing to you, much less bigger measurements like miles and kilometers? do you also need google maps to get anywhere despite living in the same city your whole life because lacking a mind's eye also means you lack the ability to make mental maps? were your inability to navigate and difficulty with measurements something people made fun of you for the same way they made fun of me for it? and now that you know you have aphantasia you can snap back at them and be all, actually the reason i can't navigate or understand measurements is because of a neurological condition so you're basically making fun of me for being disabled, how about that? do you also sometimes get sad and think about how you don't really remember anymore what your loved ones who've passed away look like? or even what your loved ones who aren't currently in the same room as you look like? how you rarely notice if someone got a haircut or new piercing or tattoo or otherwise changed their appearance because you can't visually compare it to how they looked the last time you saw them?

when you try to picture a loved one's face, what happens? me, i run through a list of traits in my head, oftentimes more focused on personal attributes than physical ones because that's what i'm actually capable of remembering consistently. i don't just know what someone's hair or eye color is—i have to memorize it, like a fact for school. mom and dad have blue eyes. my husband has hazel-ish green eyes. my best friend is blonde, but her hair is darker now than it was when we were kids, and she got glasses while we were going to college in different cities, i should know that by now and stop being surprised when i see her wearing glasses. her mom, my second mother, has straight brown hair and a long face, but i can't remember what color her eyes are even though i've known her for twenty years. i think they're blue, but i can't picture it. i don't know for sure, and if i think about it too long it kills me. when i have kids, will i remember their eye colors? or will i have to ask my husband if he knows?

i take a lot of pictures. all the time, of everything—of people, of scenery, of my food, or myself, of pets and cools animals i see strolling around the city. boomers criticize me for not living in the moment, and it makes me feel awful, like i have to choose between experiencing something and remembering it. cause yeah, without the pictures, i would forget. i keep movie stubs and playbills and fair tickets and museum handouts and even fucking hospital bracelets, and i cherish them the same way other people cherish religious items.

it's lonely sometimes, having aphantasia.

the people close to me know about it, so they know how to accommodate me in relation to it, and they're supportive and interested in learning more. but they don't live with it themselves, so even though they know what it is, they don't know what it is, ya know? their knowledge is all second hand. as wonderful as my people are, when i'm really feeling my aphantasia and getting into those sad thought spirals, talking with them about it just isn't the same as it would be to talk with someone else who has aphantasia and has dealt with the same issues and feelings about it

i guess in the end i just want what we all do: community. when i find someone else with aphantasia, i don't wanna be like a dog seeing another dog because i'm so starved for contact with other folks like me; i wanna be like someone recognizing another member of a long distance club i regularly participate in, like hey! same hat! and then go about the rest of my day because i'm satisfied with the community i have. ya know?

anyways yes this is a free invite to message me if you have aphantasia or think you might have it and you wanna compare notes and chat about shared experiences, or alternately if you know someone who has aphantasia or are just curious about it and want to learn more about it :D

#i almost made the ah longer to better convey the sense of existential panic #but long nonsense words like that or strings of emojis can be hell for folks with screen readers #aphantasia #loneliness #the intense desire for community #just neurodivergent things #maybe #cause like yeah obviously aphantasia impairs my ability to do certain things in a way that causes distress #but does that make it a disability? #cause disability feels like way too big and important a word for my experience with aphantasia #like i'm being overdramatic about something that doesn't actually impact me that much #but then again it does significant affect the way i interact with and see the world #and it is literally a neurological condition #can i call myself neurodivergent? #do i have a right to use that identity and claim it as my own? #language is hard #long post