#existential fart chart

[makeroomforthejolyghost]

too lazy to find it rn but there’s this Old Classic post on spoonie tumblr the gist of which is like. everyone wants to know whether you’re too disabled to work, but if you can manage to work only by sacrificing your personal life to recovering from that stress no one gives a shit [ETA: it's this post!]

this doesn’t 100% apply to me? i only go to scrollege part-time; because of that i do get to have a social life on weekends, since i have friday and monday (and wednesday) off from classes too. most saturday evenings i play d&d, and most sunday evenings i video-chat w/ sirka

but i’m still Feeling It (that post, i mean) today. in particular i’m frustrated by the pressure i feel because of my ability to attend in-person classes, walk to and from the bus (and take short walks around my neighborhood on some of the days when i don’t have class), see my friends every weekend, &c. to label my symptoms as Mild and not-seriously-life-impairing

like? i keep telling myself, “well, it’s a lot milder/better managed than in fall 2016.” and—that’s kinda true? the pots is waaaay more under control now because of medication and lifestyle changes, probably also luck, &c. and, i mean. i used a wheelchair for outings like Going to Target back then; i can walk around target now as long as i sit down every time i see an empty bottom shelf. but this isn’t… better?? in some ways i’ve gotten worse at shopping, even laying aside pandemic-related anxiety, because the visual confusion is so overstimulating. and, y’know. i also can’t use that wheelchair anymore, because it hurts even more than walking does.

and also just. when i remember fall semester 2016, i think of forcing myself to walk quickly down the street at 7am for fear of missing the bus. how by the time i got to my seat i’d have no thoughts in my head, only unhappy exclamation points. that’s… exactly how i feel now when i get to the bus i have to rush for after class? i’m just haunted by a different kind of pain now, and also, have less emotional dysfunction over it since i don’t have to get up so damn early

like. i wonder if i’m not actually less impaired, just less unhappy? every tool i’ve ever tried to use to log the nature of my pain, debility &c. and how much these impact my ability to function seems to want me to communicate these things in terms of like. alarming new losses. “how many of your normal activities did you have to give up [yesterday] because of”—one, ok? only one: i skipped brushing my teeth and washing my face last night, because when you’re sufficiently tired even daily habits become foreign and confusing. but that’s because i’ve already learnt how much activity i can sustain, and shaped my life around that!

fucking?

i don’t know how to tell people—or the robots behind apps i’ve tried to use—that when you walk with a cane and wear six different braces and still have eleven joint subluxations in one day, that’s significantly bad?? even if you still made it to and even enjoyed all your classes? where is “i’m in extra pain but functioned as normal because my routine has redundancies.” and, in a more long-term sense, where is “this does not threaten my current lifestyle but has shaped it in its image.”

[makeroomforthejolyghost]

find lately that when people around me react visibly or audibly to pain i sometimes have to swallow down disgust or fury? to choke back a nonsensical (and ego-dystonic) temptation to shout NOBODY CARES!!!, because of the thing where

...well, you know. the thing where when other people accidentally bite their tongues they gasp in horror and their hand flies to their mouth; meanwhile, even when i bite wrong and my jaw dislocates i don't react that way. it's not even that i force down that reaction? a few years back i suspect i might have, though i don't recall for sure. but these days it just doesn't scare, surprise, or bother me enough to summon a defensive reaction

sssso i mean, this disgust response to others' pain makes sense? as an envy thing. like people who get mad about student debt cancellation because they already had to pay theirs off. but it scares me, because i also suspect that sometimes contempt is pity you won’t let in.* i think that i’m too big a coward to look other people’s suffering in the face, so instead i get annoyed that they “overreact” to it. and maybe that doesn't matter in situations like a parent bites their tongue? but over time i've felt a similar contempt beginning to color my perceptions of other complaints they make. like how they slept badly last night, or they had to cut short their walk because their ankle's acting wonky. any complaint where the phenomenon they describe is familiar to me but their level of distress about it seems alien or """excessive.""" i find i can't look at them when they talk about things like this

and? i know where i learnt this habit? it's how i react to my own inconvenient emotions, especially my fear. not just the contempt part: the incomprehension, too. "wait, why are we so upset about this? this is fear--i can tell this is fear! what are we so scared of? it's not like we'll die."

and, well, i know i've said this before, but. pain itself doesn't make you react outwardly; fearing it makes you do that.** the other day i accidentally hit my elbow on a tray--and my mother yelped, because the unexpected sound startled her. but? i didn't expect it any more than she did, so? why didn't i yelp. other people's nervous systems don't tell them "ouch plus big noise, but don't worry; you'll be fine in a minute"--they just say "THREAT." which makes me suspect you can't rationalize your way into a changed reaction like this? i.e., that i don't react to sudden pain with fear because i've learnt "pain is normal." not told myself that, or adopted it as a conviction; i mean, like, physically learnt it. managed to teach even lizard brain that pain, while unpleasant in itself, doesn't lead to further bad things. and that if i relax it'll pass more quickly.

and and and. i like that i can hit my elbow on a tray and not even blink! not least because pain without fear hurts less. so how do i keep it without (scare quotes, biiiiiig scoff) Losing My Humanity like this

*or compassion, or empathy, or. insert less-negatively-loaded word for sorry-feeling here.

**other emotional reactions can do this too, to be clear! when my cat scratches me, i push him away and snarl not because it hurts but because the distraction posed by unwonted pain annoys me. think also of movies where an angry character kicks a rock to let off steam, and then howls because the stubbed toe makes them angrier.

[makeroomforthejolyghost]

wait, so, if when you start talking and it's difficult and sounds weird and fake, like the product you listen to coming out of your mouth doesn't match somehow with the sensation of speaking, or you can't figure out how the words you're saying emerged from your vague decision to speak--if that's dissociation, then what is that thing where like. you're talking, and it's normal and fine, and then you suddenly remember that it's you talking, your body producing the sounds your mind producing the ideas, and it's weird and too much and you panic for a second (and probably lose your train of thought), but if you lean into it the sensation passes and everything's fine again? is that also dissociation? and if so then why does it feel like greater awareness of yourself than usual

[makeroomforthejolyghost]

do you ever think about “learned helplessness” rhetoric as a sort of counterweight to “picking battles”? i was thinking about this one youtuber who did a video about her own learned helplessness, and how uncomfortable it made me because of the disparity between the examples the video from which she learned about it gave and those she herself gave in her own video. the original video gave examples like, concluding falsely from not winning an award for your performance that no one likes you as a performer and you should give up music/comedy/whatever it was altogether; she gave examples like, wondering if it was worth it to pursue another surgery when the previous, like, 10 had had unsatisfying results. and i had this moment of like—lmao this is so uncharitable, but in that moment i was like “oh. yeah. this is never gonna work out for her." in a way that felt very character is fate, though in this case “character” isn’t a fair word to use since her problem was clearly bodily rather than rooted in habits of mind.

so then i was trying to think of examples where this insight—viz., that “helplessness” isn’t always the wrong thing to learn—applies to my own situation. the example that came to mind: imagine if i still kept trying to go outside in hot weather, in hopes that maybe this time i could tolerate it without getting a pots flare and sensory overload. so then i thought, but what about continuing to try to improve my ability to go outside in the heat? for example, it may be possible to raise the temperature threshold past which i feel sick, e.g. by turning up the air conditioner by one degree a month. is it “learned helplessness” that i don’t do this? i think the answer is yes, but i don’t feel much motivated to change this or to reproach myself for it. because going outside in hot weather is not a battle i can win. imagine it: june, 73; july, 74; august, 75; september, 76; october, 77; november, 69?! Oh Right, that’s when the heat comes on. so then by next may i’d be back at 73. (and n.b. even 77 wouldn’t help much. today the high is 91, and that's pretty average this half of the year.)

i’m trying to think of a situation where i’ve learned helplessness inappropriately?? and the only one that comes to mind is 2017’s disbelief in friendship. after i got back in touch with sirka, my renewed belief in the possibility of connecting w/ other humans led to my having more fulfilling conversations w/ my other friends as well, because i didn’t close myself off as much. but even then, the solution wasn’t just keep trying—it was try something else. picking a different but related battle that i could win. i couldnt have brought the wall down by knocking my head against it

[makeroomforthejolyghost]

a new low: scolding myself for torpor and lack of motivation, even when i a. have a cold and b. specifically told myself not to attempt anything mentally or physically strenuous until it goes away! it’s truly incredible. the habit of self-contempt is so ingrained that if for five seconds i forget i’m doing it on purpose, i at once default to berating myself for Being Lazy. 2016 me would be so dismayed

[makeroomforthejolyghost]

i just have... a lot of different problems that mean “x is harder for you, because you have to do it manually.” i’m autistic, so i have to process sensory phenomena manually; i have EDS (or similar), so i have to keep my skeleton together manually; i have dysautonomia, so i have to... well, at any rate, can’t trust my autonomic nervous system to run on its own, though running it manually mostly means throwing the right stimuli at it in the right order and hoping the way it tries to run in light of that data isn’t too wrong. annnnd then there’s the weird adhd wild card where instead of “you have to do it manually” it’s “most people can do this manually, but you can’t.” but, this got away from me, my point is, being conscious of things is cool and it seems weird and gross of the universe or society or both that in order to run properly you have to do like... the “bus tour of europe” version of being alive

[makeroomforthejolyghost]

magic mountaining again

“This third letter was comprehensive, it did the job—not in terms of conceptions of time valid down below, but in terms of those prevailing up here. It established Hans Castorp’s freedom. This was the word he used, not explicitly, not by forming the syllables in his mind, but as something he felt in its most comprehensive sense, in the sense in which he had learned to understand it during his stay here—though that was a sense that had little to do with the meaning Settembrini attached to the word. And as he heaved a sigh, his chest quivered as the wave of terror and excitement that he knew quite well by now swept over him.” (221-2)

whyyyyy god why

“Blood had rushed to his head as he wrote, his cheeks burned. He picked up Mercury from the nightstand and took his temperature, as if he could not let this opportunity pass. Mercury climbed to one hundred degrees.

“‘You see?’ Hans Castorp thought. And he added a postscript: ‘This letter has been quite an effort. ... You will have to excuse me if I do not write often.’”

WHY, GOD, WHY

“Then he lay back and lifted a hand to the sky, palm out, just as he had held it behind the fluorescent screen. But daylight had no effect on its living form, the stuff of it grew even darker and more opaque against the brightness and just its outer edge shone reddish. It was the living hand he was accustomed to seeing, washing, using—not the alien scaffold he had seen in the screen. The analytical pit he had seen open up before him that day had closed again.” (222)

...lucky bastard

[makeroomforthejolyghost]

i’m reading the magic mountain, because to susan sontag’s description of it as a Highly Problematic depiction of illness my internal reply was basically, “wow, this book sounds ingenious and fascinating and like i’ll find it deeply personally offensive.” 

anyway, i’m only 35 pages in but. so far i’m just in love w/ the prose, annnnnd fascinated but sort of also terrified by how much the main character (morally) resembles my self of ca. 2014. the only thing that offends me so far is the blurb. (but i almost always hate blurbs.)

In The Magic Mountain, Mann uses a sanatorium in the Swiss Alps--a community devoted exclusively to sickness--as a microcosm for Europe, which in the years before 1914 was already exhibiting the first symptoms of its own terminal irrationality.

ugh! surely there’s more to it than that?? these beautiful details these amazing insights. “european society is terminally irrational” oh absolutely, but. please?? please. illness is no more irrational than any other natural phenomenon. i don’t act against my own interests and neither does my body; it’s just harder for us than for most to act in their favor. please mann give me better advice or a better verdict than stop defeating yourself. i mean, i know you won’t, but. please?