The Nazis came for us first; the epileptics, not the Jews. Physical and mental deformities were much worse than merely being a Jew. We couldn’t be allowed to reproduce and spread our dark and dangerous diseases to the Aryan race. Starting on January 1st, 1934, I could have been taken and sterilized, no questions asked, no problem at all. In 1939 it was deemed by “Action T4” that those who were considered “incurable” should be “granted a mercy killing.” These incurables, people just like me, were the first to be sent to their deaths. Who would protest for the freak, shaking in the street? My husband reassures me, this wouldn’t be you, you just wouldn’t go out… Did that help Anne Frank?
This was less than 75 years ago. Before the Nazis, they burnt us at the stake, crushed us under millstones. Surely she must be possessed, screaming and falling down, the shaking, the vomiting. Even doctors that thought they were helping drilled holes into our heads with gruesome blunt tools. Electroshock therapy anyone? I shiver to think what would have become of me in a previous generation. Not so many years ago, I could have been sent to an institution and restrained. I truly appreciate advances in medical science. Pharmaceuticals give me a better life. Of course, things are not all roses and sunshine either. Medical science and pharmaceuticals haven’t cured me. My meds make me sick and dizzy and tired. I suffer from double vision daily. My ears ring. My seizures are not fully controlled.
More than one doctor has tried to convince me to have brain surgery. That is not for me. It is more sterile these days, but it is still gruesome. I think of it as a melon baller, what they want to do to my brain. Just go in and scoop out the part of the brain where the seizures start. Where they think my seizures start. No thanks. I don’t want to do that. Nor do I want to become a cyborg with wire running from an electrical pacemaker in my chest, into the deepest parts of my brain. No, I’ll just go and take my pills now. The side effects are crippling, but I have less seizures and my brain is intact. I guess it is good enough for now. No one is trying to kill me at least.
Of course, if I do have a seizure out in public, I must certainly be on drugs. There is nothing worse than having a doctor angrily accuse you of being on drugs when you don’t know where you are or how you got there. One minute here, the next gone. I have no concept of time during a seizure and despite my talking and blinking and maybe answering some questions, I am not there. I don’t know where I am. Where does your mind go when you aren’t home? Surely I don’t know. My head is an attic full of ghosts and whispers, cobwebs and dust. It is old home with an entire wing closed down and shut off for years. Things get lost easily. But it’s not because I’m on drugs.
I have Idiopathic Temporal Lobe Epilepsy. It’s a mouthful. Basically, my seizures start in the temporal lobe of my brain, for no reason. Doctors use the term idiopathic to refer to diseases with no known cause. Idiopathic is probably the scariest word I know. It has it Greek roots in the words idios (of one’s self) and pathos (suffering): personal and hurt. Ouch. My idiopathic temporal lobe epilepsy is my personal hurt and it has no explanation. That part really scares me. Everybody wants a reason. I concoct reasons in my head. But they’re not true. They are just stories. I was born this way. I didn’t believe it for years. YEARS. That’s my personal hurt.
Honestly, now I am just glad to have a name for this terrible thing that happens to me. Once they didn’t even have the words to explain these “fits.” I didn’t always feel this way. In the beginning, just hearing someone say the word epilepsy was one of the worst things about it. It was laced with fear and loathing. It was the worst word in the whole world, a dark, mysterious disease. Now I am relieved to have a definition that I can share with the world. It’s a short cut. Everyone can learn the words “epilepsy” and “seizure.” I won’t have to define them again and again. I won’t have to explain as much. I’m thankful for that. It’s not really a complete explanation, but it’s something. It’s a band aid. A band aid serves it purpose. It can’t heal everything, but it can hide the hurt and keep the dirt and germs out of the wound.
I may be incurable, but I am not going to be euthanized. I am not going to hide in the shadows anymore either.