Reaching back to when I was diagnosed with epilepsy, I remember being in a hospital bed, the glare through the window masking all that was natural. The doctor didn’t visit me for a long time, and the nurse told me he was in the process of determining why I had had a seizure. I had had a seizure??? What???? I don’t remember being afraid, but instead felt distanced. Somehow, though dispassionately, inane, culture-induced prejudice took over: “please don’t let it be epilepsy, please don’t let it be epilepsy….” I can’t say for sure, but it wouldn’t be far-fetched to think I’d have preferred being diagnosed a fatal disease. “Epileptics” were the weird ones who lay on the outskirts of our world. They were lesser people. They were scary. They had no control over themselves. When the doctor announced my diagnosis, I snapped. I howled. Then, my memory stops.
That was in 1976. I was a high school senior and had had my first tonic-clonic seizure in the middle of the hallway while classes were changing. Several months earlier I had witnessed my first similar seizure. A classmate had fallen face down on brick steps. Students huddled around him, not knowing what to do, while teachers tried to get through. He hit his teeth again and again. That's all I could see. We were all talking about this horrific incident, and his name was whispered over and over. When he came back to school a few days later, what remained of his teeth were wired. He walked alone.
And I walked alone. I was dazed for at least a week after my seizure, in part due to the electrical storm in my brain and in part to the Phenobarbital – the go-to-drug for children at the time. I was taking Integral Calculus that spring, but I had forgotten all the Differential Calculus I’d learned in the fall. I never really did recover my math capabilities, and, I’m still sad to have lost them.
Two months after my episode, my parents took me to Dr. Frederick Simeone at the Children’s Hospital of Philadelphia. “You have epilepsy. You’re not epileptic. He saved my self-image, leading me to pursue most goals that I would have sought before being diagnosed my epilepsy "handicap." Nonetheless, in my core, I still felt lesser than others, and I lived in hiding
It took me 36 years, but I finally recognized that my epilepsy was just a difference, one that doesn’t make me weird or lesser than others. While the world remains vastly challenged by the stigma, education and the example of people with epilepsy who live out in the open slowly diminish the prejudices.
I made the choice to come out of my closet and, to those have been able to hide their epilepsy successfully, please come out, too. There’s no room for shame if we are to end the prejudice.