Once I made the decision to disclose my E. to everybody, I immediately ran into a barrier. It wasn't language, exactly, it was more an absence of language.
The initial reaction to telling someone I am epileptic never seems to vary: people offer me pity, then they want to know how epilepsy feels. They say things like: "I just can't imagine how terrible it must be for you" or "You poor thing! You'll never have a normal life, will you!"; next comes the inevitable pause, and they continue by asking me: "How does it feel when you...have one?"
Most people seem to have one particular kind of seizure in mind and this is the gold standard, what many people take E. to be. I have known folks who believe E. "isn't so bad" if you don't have "the fits" and I have been to family doctors and neurologists who firmly believe if you don’t have convulsions, then you don’t have epilepsy.
The first thing I tell those who ask is: I don't know how a convulsion feels. I am unconscious when they happen. I have never seen myself seize, nor have I seen anyone else seize. It’s this kind of answer that disappoints. Suddenly, they become disinterested in the whole thing, and in me. Why? Because they want to know what convulsive E. feels like and they really dislike the sense that they have been put off from finding out.
Some have said that a convulsion looks painful. So perhaps this is the root of the question: they want to know if we suffer pain with seizing.
I try to answer the question each time it is asked, but I don't know if I am making any real progress describing my experiences clearly. I'm sure I sound a little addled when I try to explain the subtleties of the run up to a seizure: afterall, it isn’t like describing a bad cold or even a heart attack. My intentions are good, but I always explain much more than they want to know about. I tell them that not every seizure is epilepsy, nor is it a convulsion.
Though the question of how we feel epilepsy is a simplistic one, it can be viewed as an opening in the door between our own hiding places and the rest of the world. "What does E. feel like?" is an overture toward understanding, even if it smacks of sensationalism.
Our problem is learning to define ourselves to others, to distinguish the individual from the overarching descriptions of E.
There are so many variations, so many types and kinds of epilepsy, and so much disinformation about E., that it becomes a difficult question to give an answer to. Each of us experiences E. in so many ways: from confusion and staring to rage or anger to that most dramatic of expressions, unconsciousness.
And each person who asks the question of us comes to it with their own preconceived notions.
How I feel about E. and how E. feels, are distinct questions whose answers are bound to our inarticulate, experiential Self. For generations, none of us has felt an obligation to reach outward to society, to try to make ourselves understood by them. Socialization, for persons with E. has been discouraged, as has community building.
Today, because we want to be more a part of the world, to have society respect us, we have discovered a need to find the language with which to identify ourselves and our experiences to others.
