I recently read an article that asked which label was appropriate “person with epilepsy” or “epileptic?” It really got me thinking. When I was first diagnosed in the 90s I didn’t say either. If I had to talk about it, I said that I had seizures or had a seizure disorder. Seizure disorder seems to minimize it. I never wanted to say epilepsy at all in the beginning. It was scary. Now I say epileptic. I am not just one single person with epilepsy, but I am an epileptic, a special subset of people who have existed for all of human time, and have our own history. Epileptics have always been treated differently. We need to talk about it, not hide behind safer words.
The facts are staggering. Over 3 million Americans have epilepsy. Nearly 67 million people worldwide suffer from seizures. Anyone can suffer a seizure, at any time. All you need is a brain. More people died from epilepsy than from breast cancer every year. I’m not saying we can’t pay attention to breasts, but brains matter too.
There is no cure for epilepsy. Seizures can be caused by dozens of reasons, not just traumatic brain injuries. There are many different types of seizures, not just convulsions. So much is misunderstood. Despite the fact that seizures are described in medical journals dating back hundreds of years, we still don’t know the cause and we aren’t anywhere near a cure. And the spending on seizure research is scant! Many of us still have seizures despite the best medical treatments there are. I do.
How many National *enter disease here* Awareness Days get national public recognition? Why must my disease go unnoticed, unmentioned, and misunderstood? Seizure disorders are often kept in the shadows, out of the public eye. Of the hundreds of seizures I’ve had, by far the majority have occurred in my own home, unseen but for my closest loved ones. And even my closest loved ones don’t witness most of my seizures. Many are silent and pass quickly, some so fast that I don’t even know. Some occur only in the dead of the night when everyone is sound asleep. And let me tell you, when your consciousness is affected, you don’t know!
I had seizure just the other day. I would have never known about if I hadn’t been listening to the radio. WQLN repeats part of the NPR show All Things Considered daily. I listened to it earlier and I was listening when it played again. I was waiting to hear a line I had found quite funny the first time round. I was practically repeating the story. And then… POOF! I had missed the line. I heard the one before and the one after, but I was completely gone for a few seconds there. Nobody knew and usually I wouldn’t either.
That’s why I don’t drive. Seizures took that away from me. It is a huge burden. Try not driving for a week, or a month, or four years. I have been stripped of my self-sufficiency. I also don’t use ladders or go to movie theaters or take baths or showers when I’m home alone. Just last week a young mom died in the bathtub after having a seizure. She was just 23 or 24. I’m glad to have survived the bathtub thus far. It’s one of my biggest fears that I won’t.
You could ask my kids what a seizure does to mommy. Sadly, they know very well. My seven year old son often gives me a “Close your eyes Mom!” warning when we are watching TV or if he is playing a video game. He knows that flashing lights are my kryptonite. He’s always aware of the risk they pose me. And let me tell you, flashing lights are everywhere! It angers me, all the unnecessary flashing. Even shoes flash now. My children are constantly on the lookout for flashing lights.
One time that I had a convulsion in public, I ended up in an ER. I didn’t want to go, but somebody else was afraid and called the ambulance. Since it wasn’t my first seizure and I already had the diagnosis, there was nothing that they could do for me. All they could do was confirm the diagnosis of Idiopathic Temporal Lobe Epilepsy or Intractable Epilepsy with Unknown Cause. They told me take your seizure meds and go home. Most neurologists agree, if it is not your first seizure and it doesn’t last for more than 5 minutes, you don’t need to go to the ER. Going to the ER because of a seizure would only be necessary if I get injured from falling or hitting my head. Otherwise, it’s a waste of my time.
All I want to do is sleep after a seizure. And it’s the best thing for me to do. Sleep deprivation is a HUGE trigger, just like stress or the full moon. I started keeping a seizure diary online a few years ago. After a few months I realized that most of my seizures occur within 3 days of the full moon. I wouldn’t believe it if I hadn’t seen it myself, repeated over and over again, every month. I can’t explain it. I just make plans accordingly. I tread lightly around the full moon.
In fact, I have fashioned a theory that the myth of the werewolf may have come from witnessing seizures that occur during the full moon. A person screaming and shaking and tearing at their clothing and foaming at the mouth might have seemed like they were turning into an animal. If you have never seen someone have seizure, good for you. But if you have, think about it. If you didn’t know any better and didn’t have the means to explain the world, lacking science and advanced thought, how would you explain a seizure? What would it look like to you?
Thankfully, nobody thinks I’m possessed when I have a seizure today. We understand the science of seizures a bit more today. But we are nowhere near a cure. I don’t believe that I will ever be “cured” of epilepsy. I just hope that I am not killed by it.