The one thing in my life I would like to cure.
I have seizures almost every day. Sometimes I have more than one seizure a day. Every seizure is bad but some seizures are worse than others.
If they are too intense, it can take days for me to recover. And because I will probably have other less intense seizures, the recovery can take more than a week.
But you will never know how intense a seizure is because you don’t feel the pain. And my face does not always show how I feel.
I wrote that a seizure is like falling in a deep dark hole. I don’t see it coming, I only know I am about to have one when the assault on my brain is imminent. For a few seconds, it is only pain and a scary feeling. Than I lose control of everything. I come back and I don’t know where I am, how long I have been there, if I am lying down or not. My body is completely separated from my confused mind.
There is also the possibility that I will fall as the seizure starts. I can hit my head, I can have a concussion.
Even when the seizure is only a staring few seconds, or a strange laughter, my brain still hurts and I still need time to take hold of my body. I always need to retreat inside my own head for a short, sometimes long, time. I need to do this because the world becomes too much to bear. I can see, hear everything but it is all filtered, like a series of pictures, and I move as if I am pre-programed. I can type and communicate but I prefer not to. I will do it if I think it is really important, but I need my time to recover. If I don’t do that, I think I would disconnect completely from the world. Then the seizure would win.
Seizures make me feel lonely. There is nothing that anyone can do to make the pain stop. There are no accommodations that make a seizure less painful. After an intense seizure, most of my senses are overwhelmed, I can’t be touched, lights and sounds hurt. One sense is gone – I can’t taste anything.
The post ictus is when I get hurt, because I have no control and no spatial orientation and my body wants to run and jump. I broke my nose twice, broke several teeth, had a big cut on the back of my head and spent nights on the floor, until someone finally realized I needed nightly monitoring.
Epilepsy can kill. Seizures can come at any time and they can hurt in more ways than it is visible. Medication might help, but they also hurt, in the long run – and they make me drowsy, slow, tired. Besides, medication interaction is complicated and unique to each person. I had my medication interact with folic acid. I ended up in an Emergency Room.
I am Autistic. I love my brain, I am proud of my neurology.
I have epilepsy. Seizures make my brain hurt.
I don’t need or want to cure autism. I can, and do, lead a fulfilling life being Autistic and having the supports I need, even when I need a lot of them. But epilepsy makes me waste time and energy. I can run out of my daily spoons after one seizure and need the next day’s spoons too (spoon theory).
I want to live my Autistic dreams, being proud of my Autistic self. Seizures are trying to stop me and I want, and need, a cure. A cure for epilepsy. An end to the pain in my brain.
Read more from Amy Sequenzia here.