Tales of Epilepsy: Internalized Ableism

Today, when my body finally dragged itself from the dregs of sleep, the first action it took was to grab my phone and check the time. Three-thirty, it said. Panic exploded across my mind. What?! I exclaimed to myself. How can I have slept so late? The day’s half-over! Then, the mantra began. Lazy. Lazy. Lazy. I’d completely forgotten that twelve hours previous, as I made ready for bed, I’d deliberately not set an alarm, so that my body could get as much rest as it needed. It was tired. I was tired. My epilepsy was taking advantage of it. Around midnight, I jerked. It was a partial seizure. It was a reminder that my epilepsy was still there, that my body was tired, and I’d forgotten in the midst of a long conversation with a friend to take my nightly dose. It had been a long week.

Lazy. Lazy. Lazy. I heard the mocking voices of everyone I knew in that mantra.

Why do I do this? I’m not supposed to sleep late, remember? I’m supposed to be a dutiful broken body and pretend like I’m not broken for the benefit of others–so they’ll not worry, so they can pretend I’m just like them.

I was tired, so I slept. But I never fully recover because as soon as I wake from that wonderful, restful sleep, I beat myself up for daring to take care of myself. It’s either beat myself up for it, or allow the rest of the world to do it for me, and fight against that, too.

Only in an ableist world is it acceptable to struggle to simply take care of my body’s needs. Only in a world where there is only one acceptable state of being for a body to be: “normal” is it considered “lazy” to take as much time as I need to ensure my body’s health.

Do I do it to myself? Sure. After years and years of dozens or hundreds of family, friends, acquaintances, teachers, employers, peers, and the random solicitor telling me it so, it’s difficult to forget. Every day is a battle.

The Deck of Ableist Cards

Last night at work, several co-workers and I were talking about the amount of sleep we get each night. I mentioned that I needed 9-10 hours of sleep a night, and I didn’t even get to finish my sentence before a co-worker burst out laughing. “Nine to ten hours?” he mocked. “How old are you? I’m forty years old, and I’m lucky if I get six! When I was your age, I was good to go on four!”

Blink.

Blink.

“I have epilepsy,” I said. “If I don’t get enough sleep, I’ll have a seizure.”

The wave of silence crashed over our group. Yon co-worker lost his jeering expression, but wasn’t in the least bit apologetic about mocking me.

In an ableist world, where neurological abnormalities and physical impairments are an oddity, more a butt of a collective joke rather than something that real people have, have to live with, and have to deal with, where we’re an inconvenience at best and leech on society at worst, this is what we have to deal with on a day-to-day basis.

Last night, I was slapped with the lazy card. Which card will it be today?