The Man Has Epilepsy

I know a couple of adults who have epilepsy. (I wouldn’t be surprised if I know several more, but there are two that I know have epilepsy.) They don’t speak of themselves as epileptics, nor use the term descriptively, as in, "I’m epileptic." If you have epilepsy in your family, or if you have it yourself, you’re probably saying, "of course." But I approach the subject from a different angle. Except for my nephew Tommy having seizures from time to time, I have no direct experience with it. Since Tommy is in a class by himself, nobody talks about him having epilepsy. "Seizures," for him, are just one part of the many, many medical situations that are a constant in his life.

I was planning, in this article, to tell you about one of the two people I mentioned at the beginning. I thought I would say how I came to know about the epilepsy, and how he answered my questions about it. I thought I’d tell you pretty much everything I know about the man, and that would be that. Well, a funny thing happened along the way. I noticed that my own education had to be explored as a result of that interview. You see, I’ve known another adult who has epilepsy for many years, and though we’ve talked about it from time to time, I never was inspired to think about it by myself. Maybe it’s because this second person is a teacher, that I’m thinking about it more deeply now.

When I was a child, people who had epilepsy were called "epileptics." It was like they were a different species or something. If there were any "epileptics" among the general population, I didn’t know about it, and if I had known about it, I would have avoided them completely, for two reasons. First, because I would have expected them to have a huge seizure at any moment. Second, because nobody ever talked about "epileptics" without talking about seizures, and nobody ever talked about seizures without laying out a list of responsibilities. If anyone ever had a seizure in my presence, I should know what to do.

Here is what I should do: I should find a stick, the right size and strength to prop open the person’s mouth, because otherwise, they would "swallow their tongue" and choke to death. I should be careful, though, never to put my fingers in their mouth, because there would be very strong biting going on, and I could lose those fingers entirely. Foam was always mentioned. "Foaming at the mouth." Just like a rabid dog. Nobody ever talked about where I was supposed to find that just-right stick, or how I was supposed to prop anybody’s mouth open without using my fingers. I tried not to think about it at all, because the whole thing was just to horrible, and too demanding. Unless I kept a just-right stick on me at all times, I knew that I would not be prepared to handle the situation, and I would be directly responsible for someone’s death. Not that I would ever dare get close enough to somebody who was foaming at the mouth and convulsing to touch them at all, anyway. I could only hope I would never be present on the scene. I would certainly not put myself at risk, by being friends with any "epileptics." Count on it.

My long-time friend has educated me quite a bit, I guess. She has never had a seizure in my presence, but if she did, I would at least know that she has had plenty of seizures before, and she hasn’t died yet. I might even be able to notice on the spot that she has been out and about, where that just-right stick is not likely to turn up at the right time, and still, she lives on. I would be horrified, but I would also be very interested to know what the paramedics would do when they arrived, and whether my friend would be alert, or disoriented, or what, when her body became still again. I would be vigilant to protect her from anybody who might try to lay hands on her without knowing what they were about, while she was helpless. My biggest concern would be that I really wouldn’t know what a person should or shouldn’t do, because I have never asked. Since I wouldn’t know that, I wouldn’t know whether or not I should stop a person from touching her, even if they told me what they were going to do. I wouldn’t even know whether time was of the essence or not. I would certainly be very concerned about her bones, if she fell down, no matter what happened after that. She is in her 80’s. I’m thinking now that I better find out about those details. First, though, I better finish this article. If someone in your family has epilepsy, you don’t need me to tell you those details. You already know. So I’ll move on.

My old friend corrected me when I said something like, "You’re epileptic?" She never says that she’s epileptic. She says that she has epilepsy. Makes a big deal about the difference. My response has always been to acquiesce with a "yeah, yeah, whatever makes you happy" attitude. She must have figured that was the best she was going to get out of me, because she has never made an argument about it. She’s usually not shy about pressing a point. Not with me, anyway.

When I interviewed the second person I mentioned earlier, I had the same attitude, though I hid it better. Almost immediately, he presented me with another term that struck me the same way. He said that he doesn’t think of it as a disability, but as an inconvenience. By the time I finished hearing about its place in his life, I was convinced that the choice of terms was truly appropriate. My purpose in interviewing him was to show you and yours what life is like for epileptics when they’re grown up. I still did not see why I should be so picky about the difference between "a person who is epileptic," and "a person who has epilepsy." It felt strange to my mouth to say "has epilepsy." Now, having explored all this for the purpose of writing this article, I’m in a position to present an axiom. Nothing that I didn’t already know. I learned it again though, from a different angle.

A person always prefers what’s familiar. It makes no difference whether it’s very good, or very bad, or somewhere in between. What’s familiar always feels like it’s the right thing, the right way. The key to changing what seems right is familiarity with a new thing. I say this now because, when I started writing this article, I wasn’t comfortable with saying that someone "has epilepsy." I knew it made sense to say it that way, but I also knew that I wasn’t going to do it. Now, because I’ve been talking about this thing so much, I will never again say that anybody is "epileptic." I don’t know just when I crossed the line, but somewhere, I came to understand. I just got used to the subject. It didn’t happen as quickly as it appears when you read this article. It happened because it takes a lot longer to write an article than it takes to read it. There must be pauses for thought. Sometimes the pause is just a minute. Sometimes a day, or a week. This article is the third version of itself. The first was entirely clunky. It had no substance. The second was better. I compared epilepsy to a cold, and to a couple of other illnesses, and said that in those cases nobody would think of saying this or that. No mater, though. It didn’t make any difference in what was comfortable for me to say. I still felt good about saying that a person is "epileptic," and didn’t feel good about saying that a person "has epilepsy." Even though I understood the reasoning, it didn’t change anything. It seems to be the familiarity, plain and simple, that made the difference. But I already said that, didn’t I? Well, now I said it again.

I know two adults who have epilepsy. I said that before, too. But this time, I said it different.