At first my tongue and my arm went numb for an hour. Then it was my finger bent and extended out by itself for a minute or so. Those were called petits. Then my left arm began to curl in. I held it back with my right hand and ran to my mom saying, “it’s happening again” as if I were in a horror film. When mom told me to let her see. I let go. Then it felt like my arm was bending back where I had no joint. That’s all I remember.
Mom said I fell then that my whole body curled in and shook. That’s called a gal mal. When I woke up mom or my brother told me what happened, I felt dazed, sleepy. I asked if I looked like the kid we saw on a movie recently. I kicked my legs and arms. Mom told me to stop. Her voice was sharp. The ambulance was on its way.
At the hospital, they hooked my scalp up to electrodes. They put dye in my hand and put me in a long lit tube where I had to lay very still. I had to curl my back and lay still when they stuck needles in my spine. Lay still. Lay still. They said again and again when what got me there was shaking I could not control.
At first, we wanted to know why. Mom thought it was the crystal light packs that I ate instead of mixing up with water at summer camp the week before. Or it was that I was tired from babysitting all day and sitting with my Grandma during chemo-therapy that evening. My Grandmother said that when she first got her period she seized up but never again. I had just started my period for the second time ever. And it was awkward wearing pads in a hospital gown.
We told these stories because no one wanted to know why really. Knowing the cause means having a brain tumor, maybe a death sentence. What you learn to hope for is the-we-have-no-idea-why variety of epilepsy, the sort you take pills for and hope they work. If they don’t, then you try others. If they don’t work, if none of them work, you can have brain surgery to have a metal plate placed between the two sides of your brain like the kid in the movie I just watched. He had to learn to talk and walk again and still had to take pills to keep petits under control.
That’s it really. Not knowing why. Having no control. Not knowing if or when it will happen again. Having to tell people it could happen again and what to do if it does: turn me on my side, move things away so I don’t knock them over, and don’t stick anything in my mouth.
I never had another. And I never had the illusion of control again.