3/09/2016: Seven Things I Was Never Told When I Was Diagnosed With Epilepsy

(This is somewhere between journal and prose; I’m putting it under prose because the prosework I’m doing at the moment is turning gargantuanly huge. For the record, I’m fine; this is just me letting loose on some bad feelings about my epilepsy.)

1. exhaustion

One of the things that’s really hard to talk about when it comes to my epilepsy is just how damn tiring having a seizure can be.

It doesn’t matter if it’s a big one, a small one or a barely-noticeable one; having your body move in a sudden fashion against your will is exhausting.

When I wake up after a huge seizure, my immediate reaction is to go straight back to sleep, just because of how damn physically stressed my body feels. As for the smaller seizures, after a day of them, I don’t want to do anything – cook, eat, clean myself, tidy my room, do a goddamn thing. I just want to lie in bed.

2. nausea

I don’t know if it’s a drug reaction or just me, but having petit mals (or myoclonic jerks – whichever you prefer) has a really nasty tendency to cause a nausea reaction in me if they happen too frequently. My stomach churns, I gasp for air, and I think longingly of sequestering myself in a bathroom until it all just goes away.

3. fear

There’s a period of time you go through with epilepsy – nobody ever tells you this, and nobody ever speaks of this, but I wouldn’t be surprised if it happened to everyone with epilepsy – where you’re frightened of everything.

Crossing the road? Terrifying.

Getting out of bed? A nightmare.

Going to sleep? Horrible.

Everything frightens you because everything – if you have a seizure in the wrong way at the wrong time – is a way to die.

But eventually, you just adapt. Your brain stops inventing ways to die. You move on.

4. isolation

There’s so much aching loneliness tied up in being epileptic. So many rules to learn, so many things you can’t do. It’s easy to feel isolated, to feel set apart, to feel different from everybody. Nobody else around you walks in fear of their own bodies.

Except…they do. Everybody does, to some degree or another. Everybody has their own rules. The older you get, the less the isolation of epilepsy affects you, and the more you start hearing that everybody knows somebody with epilepsy, and you stop feeling like your shoulders need to be clenched around your ears.

5. self-hatred

There’s nothing that defines self-hatred more than when you wake up and see terror on the faces of the people you love.

6. apathy

Sometimes, you just stop caring about your health. Because for one day, you want the specter of ‘Epilepsy’ to vanish from over your shoulder, want to stop counting drinks, want to stop keeping track of pills, want to vanish, want to disappear.

So you let apathy win. Act normal. Play the game. Pay the price the next morning with shaking hands and a rolling stomach and a lip you bite till it bleeds to stop from crying.

7. disappearance

But eventually, the rest of the days, when you get it under control, it disappears into the aether, until some days you could even forget the band of silver round your wrist.

(It cuts your flesh; you’ll never forget.)


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