Epilepsy is a modern mystery left to man and an exhausting condition on its best days. Please note I am not complaining. Not my style. And I know I am lucky. I have it all, an advanced degree, career, driver’s license, and one kid. That was all we were granted, and probably the reason I teach. I also have an unnatural desire to organize toys, anyone’s toys. Not epilepsy related but it’s as if my mothering was done before my time. I was always longed for more children but one and done was logical. So if you got toys, give me a call. Or if you need additional mothering as my kid would like a break. Let me know. He is a good sport.
My story like others begins out of true fear. No one teaches epilepsy in school. Diabetes, yes. Epilepsy, no. My first experience was riding on a city bus to my figure skating lesson, oh yes. I was sporty too. A woman burst on the bus and screamed, “I am epileptic move.” Now, I was eleven and currently experiencing auras on a daily basis in quiet fear. While I thought the declaration was over-the-top, she scared me for many reasons so I moved the hell away. I got off the bus and walked the rest of the way to the rink in tears. I knew I would be that woman. Better dressed, less vulgar. But that was me. With every step towards the rink and a coach who had already called my grandfather for my being tardy I had apologies coming to many but mostly to myself for my living in fear.
As the story goes I had times where I lived in a bubble that would not break open, until ready. This confinement impeded my speech. Actually, stopped it, but left me in the living to be able to hear all around me. Initially, the episodes were short, no one ever knew. However, with time, each getting longer and longer but my fear and lies covered them up. Not well. But my ability to focus on the world around me caught everyone off guard as once it passed no one could tell the difference. Silent periods continued to grow longer with each passing episode but my odd ability to jump back into the conversation, with increased slurred speech, worked. I chalked everything off to fatigue and exhaustive days between school and the rink. Others, just shook their heads and labeled me as a rebellious teen. The game was exhausting as was the daily fear of what was around the corner and who would see it and when would my academy award winning acting breakthrough to the obvious secrets I was keeping. I was scared.
My first big seizure was in a bathroom. I just fell, seized alone, and bit off my tongue. Just clumsy right? Yup. Got a week off of school, lots of rest, ice cream, and my game was extended. Not even EMTs felt I needed hospitalization. My grandparents became like hawks circling their prey and waiting for a misstep. They knew. I knew. We all buried the truth as who doesn’t want a perfect kid. And it was such a heavy badge to wear and at that time late 70’s not one
A week later. The curtain came down on my show. The seizure was witnessed and hospitalization followed. Now, I knew what the tests would show. My grandparents kept talking in hushed tones of C words but I told them they had nothing like that to worry about. I was right but the doctors made my diagnosis like a death sentence, meds, no driving ever, no kids, university too taxing and on and on and on. My grandparents listened with tears streaming down their faces.
As soon as the doctor left I looked at them and said. “Whatever he said, we are not doing.” Let’s get these meds and get the fuck out of here.” I got a life to live, and I am gonna live! My grandfather laughed and my grandmother almost scolded me but beating the big C was good enough for her. I promised to take my meds, stop driving for a year, but I would go to college and I was going to stage a sit-in at the hospital until they agreed. They did. I was sprung and my first course of treatment began.
My story starts there. Today is a bad day. My mind scrambles into a million pieces trying to find the calm my brain needs to slow it down and focus on anything that is not repetitive in sound or feeling. On days like this I write. I listen to music, I do yoga, I watch movies. Anything to remove my brains overdrive and fixations. My sensory overload is at its max. Thus, hearing daily sound in stereo. The toaster, the baggies opening for breakfast goodies, the refrigerator door, the butter opening and closing…the insanity is my sanity on bad days and the view of life it brings me is priceless. Loud, priceless, and a gift that took me years to embrace and overcome the looks from an uneducated public not understanding that it is not a sentence of death or oddity but one of heightened life.
This is not a book about epilepsy. It is one about life and the removal of obstacles.