Subject to Fits

When I get together with certain old friends, our first ritual is an “organ recital” — How’s your back? Knee? Heart? Hip? Shoulder? Eyesight? Hearing? Prostate? Digestion? Hemorrhoids? The recital can run — and ruin — an entire lunch.

My Epilepsy

I don’t normally write about what ails me because I can’t imagine anything more boring for you to read.

But I decided to tell you something about my health today that I’ve never before revealed because I want to help dispel some of the stigma attached to a condition I’ve had. I was also moved by Mitch McConnell’s return to Congress after a three-month absence; before being hospitalized, McConnell stopped in the middle of a sentence and stared into space, one familiar symptom of this condition.

I’m talking about epilepsy.

About 3.4 million people in the United States, or about 1 percent of the population, have epilepsy. Yet the shame surrounding being “different” causes many people with epilepsy to refrain from speaking about it.

As a result, many diagnosed with epilepsy have not met another person with the disorder, or if they have, they don’t know it.

The result can be terribly isolating, as I learned a few days ago from a former student who also has the condition. So I’ve decided to write a bit about my experience with it.

My first epileptic fit occurred when I was giving a speech to a large group in Washington, D.C. I was about 40 years old. It was the late 1980s. I’d been invited to talk about the economy, which was showing signs of trouble.

At one point in my speech someone came up to me offering a glass of water, which seemed odd to me. I wasn’t aware of needing water or anything else.

That night I received a phone call from a doctor who’d been in the audience. He said I probably wasn’t aware of what occurred, and he thought I should know. I had stopped in the middle of a sentence. My eyes had fluttered. I’d said nothing for two or three minutes. That’s when someone offered me water. He described it as a “petit mal” seizure.

I was shocked. I had absolutely no recollection of it. I also felt ashamed. Two or three minutes is an eternity when you’re giving a speech.

My own doctor told me not to worry. It probably wouldn’t happen again.

But it did — far worse than before. A few months later my then wife and I were visiting friends in London. In the middle of the night, I went from sleeping normally into a state that’s hard to describe without using the word “hell.” It lasted several minutes. When I came out of it, I felt as if I’d been run over by a truck.

The Worst Thing

The worst part was I could no longer remember my children’s names. They were sleeping in the next room. I recognized them, but their names had vanished from my mind. A few hours later, their names came back, but I had no recollection of how we’d come to London. In fact, I had no memory of the previous year. (That year is still missing from my memory.)

My doctor explained I had experienced a “grand mal” seizure. He didn’t know why but arranged for me to have an MRI to rule out a brain tumor. He also prescribed dilantin, the most common form of anti-seizure medication.

It turned out I didn’t have a brain tumor, thank god, but I continued to have hellish seizures. They followed a pattern. They’d start with a terrifying sense that something was going badly wrong — like wallpaper suddenly yellowing, ugly discordant music, and a slight sickening feeling. A minute later, I’d fall into a deep well of pain, as if every muscle and ligament in my body were being slashed. Then came nausea and a sense of total collapse, darkness, and despair.

Because the seizures continued despite the dilantin medication, it was suggested that I add clonopin, an anti-anxiety medication. The two medications finally stopped the seizures. I’ve continued to take both for almost 40 years and haven’t had any seizures since then. But no one knows why they struck me then, and the terrifying memory of those seizures remains to this day.

The stigma associated with epilepsy probably comes from how horrifying it looks when someone has a seizure, and the natural human response to stay away from such a person and event.

Ancient cultures viewed seizures as signs of demonic possession, evil spirits, curses, or divine punishment. The Code of Hammurabi prohibited people with epilepsy from marrying or testifying in court.

In the 19th and early 20th centuries, epilepsy was linked to criminal behavior and moral weakness. Well into the 20th century, epileptics were segregated from the rest of the population, discriminated against in attaining jobs, and institutionalized.

The stigma could be part of the reason that today epilepsy receives significantly less funding from the National Institutes of Health than other major brain disorders, such as Alzheimer’s disease — which affects about twice as many people in the United States as epilepsy but received almost 18 times the amount of funding last year.

Researchers have made significant progress in understanding the condition, although its causes continue to be a mystery. Up to 75 percent of people with epilepsy today are able to manage the condition using available treatments, including anti-seizure medications and surgery.

My heart goes out to anyone with epilepsy. You should know you’re not alone.