#so if i tell you my brain is clodgy today

[wobblefloss]

STUFF I DIDN'T KNOW WHEN I WAS STILL ABLED...

You end up inventing a language.

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Words and phrases I used before just do not cover these new chronic illness and disability sensations.

Explaining to doctors aside, because they need specifics and concrete examples and I end up talking to them in exhausting paragraphs and lists, I still want to have casual conversations with people who know and care about me. Who ask how I'm doing.

I need shorthand for recurring weirdness. So I burble something and if it sticks? Woo hoo! ¡Vocabulario!

I tell friends, "The bottom fell out," when my body has pulled the energy plug on my brain and I am powering down right now. Probably gonna sleep? Right here. Wherever that is.

I use "skittles everywhere," as a quick summary of 'yes, I had my thoughts together and it was a pretty good day, but I got confused about something suddenly--maybe it was an emotional hit? maybe a stress situation?'--and my thoughts scattered like I dropped a whole bowl of candies and no, I cannot do anything useful about it; I am gonna stand here and blink at this debris field for a bit cause I have completely forgotten what I was doing.' It's kinda like "the bottom fell out" but more about thoughts and not so much about energy.

There's words I picked up online in disability spaces like "spoons," "flares," "scrombled," and "potsie." (More about the legit joys of online community later.)

And then there's using words that everyone uses, but not how everyone uses. My energy is fragile today. My thoughts are just a crust, so I don't trust them to last. Oops, yeah. Fell through. Now ham-brain.

And it's communicating, but quick and kinda surface level.

Like, we all know "pins and needles" if, say, your foot falls asleep. But there's no cultural touchstone for, "my circulation is very poor today, so the weight of my blood is pooling in my lower limbs and I can literally feel myself getting dumber the longer I stand up because my brain is not getting enough oxygenated blood right now and it is kinda like drowning, yet there's no sense of breathing urgency or air hunger just now, but that part will be happening shortly because my heart rate is climbing and I'm starting to prickle with sweat."

So I just tell my loved ones, "Feelin' potsie," and they cut me some slack. And find me a chair. And that's good enough for now.

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Being able to communicate with other people keeps me from despair, honestly. I recommend building your own language without shame.

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Seems like something we should all know.

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Disability happens to people without our control or consent. Every single disabled person has strong feelings about their own situation and I would not presume to talk about anyone’s thoughts but my own. But none of us chose to do life on hardmode, so if the world could listen this month, there’s a lot to say.