Magical Truthsaying Bastard Shadesong (shadesong) wrote,
Magical Truthsaying Bastard Shadesong
shadesong

The things we don't talk about.

The italicized bit was written by a friend of mine in a friendslocked post; reposted with their permission:

For those of you who don't already know this: fibro fucks up your brain. I was smart before I got sick. We're talking learn-anything-by-seeing-it-once smart. At one point I could play half a dozen instruments on a professional level, and if you handed me something I'd never played before, i could usually figure it out in about half an hour. I could sightread, score parts in my head if I didn't have an instrument handy, and sight-transpose music I'd never seen before. I spoke two languages fluently, could muddle by in a third, and could read two or three others well enough to get the general idea. I was reading on a college level when I was 12 and was a published writer by the time I was 14. I carried a 3.5 GPA my first year in college, while working a full-time job and playing in two bands.

And then I got sick, and it all went away.

If you've ever wondered why you've never heard me play music? I lost it. For a while I was able to cling to my existing skills, but over time, they eroded. I couldn't understand how music worked anymore, I couldn't arrange parts or learn new songs, and after a while it was too painful to keep trying. I lost all the vocabulary in all my languages except English, and even that was a struggle some days. I flunked out of college, partly because I was too sick to get to class and partly because none of it made any sense anymore. At one point, I even stopped reading new books, and stuck to re-reading fantasy novels I'd already read a dozen times, because I couldn't concentrate long enough to keep the story in my head. And the worst part? I knew what I'd lost. I knew my brain was broken.


When I jokingly say "Yeah, it's very Flowers for Algernon over here," this is the dark and awful thing I'm skating over. Because nobody really wants to talk about this. Nobody wants to acknowledge it. Nobody wants to imagine it happening to them - and that's what conversation is, mirror neurons, mapping each other.

So I say "Yeah, I used to be smarter."

And then seizures that swisscheesed my temporal lobe, and the medications that loosened my tenuous grip on my mind - not just the severe nausea and weight loss and balance issues, but the inability to read, to finish a sentence, to hold anything in my head.

I'm doing much better now. But I'm still not what I used to be. And the hell is that I am very, very aware of that.

The person above is speaking about fibro. I have epilepsy and fibro. So yeah.

The other things we never talk about: the chances that I'll just drop dead. Every day is Russian roulette. I get up, I take my meds. I try to live well; I try to live like every day's my last. That's why I do so much. Because one day, I will die. I might be 35. I might be 85. It might be old age. It might be SUDEP. Or status epilepticus. Or an accident incurred during a seizure - drowning, or walking out into traffic.

This could happen any day. Any ordinary day.

I... had a lot of panic over this, initially. But I have sort of made my peace with it. Obviously, I want to live a good long time; I am having a good life. I want to hang out with my grandkids.

But I need to feel that, if I go tomorrow, I have made a difference here - that this world is better because I was here.

And dammit, I'm not done writing yet! But Adam knows the rest of Shayara, and can finish it if need be.

So this does not prey on my mind anymore, most days, except when I'm all tearful about not getting enough done. I have accepted it.

But it's there. That and the knowledge that my mind is less than it was.

Just so you know. And now we can go back to talking about Queendoms and ponies.
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