When I was 21 years old I was diagnosed with epilepsy. Though the news was upsetting, I was relieved it wasn’t a brain tumor. But as I realized the seriousness of the diagnosis, I also came to appreciate how wonderful consciousness and the ability to think rationally really are.epilepsy graphic 865x593

 

Strange sounds

It began with a series of strange feelings, or “auras,” themselves mild seizures. I could no longer hear a woman who was speaking to me. I realized with a thud in my stomach that I was “feeling” her voice. Standing on a subway platform, a fear enveloped me that my hearing was disappearing with the train in the tunnel, and a fear that my consciousness might be slipping away as well. I frequently had vague, heart-pounding feelings of dread—always that I would faint, or worse.

But as unpleasant as these experiences were, I thought I could explain them: The wind or sound in the tunnel knocked out my hearing. I was tired, hungry, or anxious. The temperature was too hot or cold.

But one morning I woke with every muscle screaming, and nausea so intense that merely lifting my head was agony. Worst of all, I had bitten the sides of my tongue to a pulp.

 

Diagnosis and control

Then came the MRI scans and EEG tests. It was epilepsy, a default diagnosis when neurologists cannot explain seizures by a brain tumor or injury.

Afterward came years of trying different medications. One wasn’t quite strong enough. One stole my appetite (a welcome side effect) but also what felt like my sanity. All made me dizzy and tired. But finally an excellent physician figured out the right treatment. The medicine eased my dread of waking up with a chomped-up tongue. I had to give up alcohol, an easy sacrifice, though giving up espresso was not. Except for some few and far between “episodes” caused by dehydration and childbearing complications, grand-mal seizures became a thing of the past. I’ve had none for many years now.

 

Conscious of altered consciousness

However, I still occasionally get the auras. The symptoms are usually the same. I realize I can’t make sense of what I’m hearing. Some epileptics are vulnerable to light, like strobe light; I am to sound. Something as innocent as an air conditioner or other “white noise” can threaten to suck out my hearing and ability to comprehend words. Sometimes when I’m vulnerable, any sound can turn into the crescendo from “A Day in the Life.” The only effective weapons are to block any stimulation and wait for sound and language to make sense again.

One of the oddest aura experiences is a feeling that a certain word or phrase is full of significance. Early on, it was often a song. Something as innocuous as “Happy Birthday” could seem full of mysterious meaning. (I’ve heard this experience described as a “brain tickle.”) I would feel that if I could only remember it and get to its significance my condition would be cured.

I have no delusions that these feelings are supernatural communications, though I can see how before modern science many epileptics probably did. But once the aura passes I can never remember what the word, phrase, or song is. Sometimes I try to write it down, but when ordinary thinking returns, the word is nonsense or something insignificant like pan or back. When my husband has been able to write down words I try to say, they turn out to be gibberish.

But it is truly fascinating that when I have an aura, I am conscious of my altered consciousness. I am aware that my ability to perceive and process is not quite right.

 

Superstition to science

Alexander the Great and Julius Caesar had a falling sickness that today is thought to have been epilepsy. In ancient times these two were seen as blessed by the gods. In other eras, such seizures were seen as demonic possession.Idiot

Fyodor Dostoevsky, arguably the world’s most famous epileptic, had the lead character in his novel The Idiot portray his seizures as endowed with a saintly mysticism. And Dostoevsky said of the first moments of his own seizures, “I would experience such joy as would be inconceivable in ordinary life. . . . I would feel the most complete harmony in myself and in the whole world and this feeling was so strong and sweet that for a few seconds of such bliss I would give 10 or more years of my life, even my whole life perhaps.”

My experience is not joy, but it is no longer dread. A mood change is part of an aura. But is it simply fear of the oncoming symptoms? I can’t answer this chicken-and-egg question. But I know this: When, after an aura, I can again understand what my children are saying, when a song is just a song, a phrase just a phrase, or a word just a word, I can almost cry with relief and delight.
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The author is an editor of major textbooks, as well as an illustrator and composer who served on the board of the Georgetown Theatre Company.

 

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