When I was 20, I used the word “epileptic” to describe myself. I grew to hate it. Now I call myself a person with epilepsy instead. People generally see my distrust of the word “epileptic” as overly PC, far too sensitive, too damned precious.
But it has not a damn to do with political correctness.
It took me years, a fuckton of personal evolution, and a metric shit-ton of hard work to learn how to separate myself and my value from my illness. Chronic illness wants to take over your life. It’s like a black hole that will suck everything into it if you don’t do something to change it. If you don’t, you will live in fear.
Death is always a heartbeat away, whether by asphyxiation or falling or SUDEP or status. Fear will own you if you allow it, and disallowing it means learning how to let go, to quit acknowledging the risks you live with daily once you’ve taken all the necessary precautions.
My life is managed by my epilepsy in many ways. My apartment is arranged in a particular way to reduce injuries. My furniture is as it is because of it. My kitchen is empty because with epilepsy comes constant breakages. My job is what it is to prevent seizures. My relationships are marred by it. Epilepsy literally touches everything.
Learning how to stop thinking that it touches everything takes a lifetime of work. Learning to banish it from my thoughts takes just as much effort. The word “epileptic” undoes all that work. It makes me forget how to let go of the risks, the anger, the fact that my life cannot be precisely what I want it to be.
I undo decades of evolution with That Word. I am no longer defined by epilepsy, so I no longer speak as though I am. I am a person first, an epilepsy sufferer last. In between are a wealth of passions: I am a writer. That defines me. I am a slut. That defines me. I’m a sub and a poor taker of photographs, a terrible marketing mogul and a mediocre sister. I’m many, many things. Epileptic is not one of them.