Like an earthquake, epilepsy strikes unexpectedly, turning its victims’ lives upside down. “If I hadn’t had a strong ego before I found out I had the disease at 16, I probably would have committed suicide,” admits Congressman Tony Coelho, now 39. Of the two million Americans suffering from this disorder of the nervous system, few have been as candid about their ordeal as Coelho, a second-term Democrat from California’s 15th Congressional District, encompassing the San Joaquin Valley. Known causes of epilepsy include head injuries, infections and brain tumors. Anyone can get it: Car accidents alone account for an estimated 7,000 of the 100,000 new cases annually. Victims are prone to sudden blackouts, which in severe cases are accompanied by convulsions. Most can control their seizures by taking anticonvulsant drugs. But all have trouble coping with the stigma the disease carries. Epileptics through the ages have been shunned as emissaries of Satan, and in modern times thought to be mentally unsound. Coelho’s own career is proof epilepsy need not inhibit real achievement. Married for 14 years and the father of two daughters, he is Deputy Whip of the House of Representatives and a member of the Democratic Steering and Policy Committee. With PEOPLE’S Clare Crawford-Mason, he recounts his struggle with the disease—and the prejudice surrounding it.
In 1978, during my first run for Congress, a friend phoned to tell me my opponent had attended a political luncheon where he called me a very sick man who had epilepsy. That same night, during a dinner speech, he asked his audience, “What would you think if Coelho went to the White House to argue a very critical issue for you and had a seizure?” Naturally, a reporter called me to comment on this charge. By that point in my life, I had come to terms with my condition. So I said, “A lot of people have gone to the White House and had fits—at least I’d have an excuse.” That was the end of my opponent’s trying to use epilepsy as an issue.
What’s the origin of my disorder? My doctors don’t know for sure, and never will. When I was 15 I lived on a dairy farm in Dos Palos, Calif. and went for a ride with a ranch worker who took a curve too fast. We ended up in a canal. All I can remember is that I had hit myself somewhere and got a headache.
Anyway, about a year later I started having seizures. One afternoon my older brother Gilbert and I were milking cows, and when I leaned over to get some feed I passed out right into the bin. He carried me into the house, where I started shaking all over. My parents called a doctor, who sat on me to try to stop the convulsions. That, of course, didn’t work. He thought it might be lack of calcium, epilepsy or other things. Specialists in San Francisco put me on medication for calcium deficiency and I had some teeth pulled. All kinds of things were done but they never figured out what it was. For the next five years I continued to have seizures about once a month: First there was a claustrophobic feeling of things closing in, then tension and a feeling of loneliness, then unconsciousness. But the episodes weren’t severe, usually happened at night and never in public, so I wasn’t worried. I was a very active person, even became student body president in my high school and in college.
At Loyola University in Los Angeles I was very social and a member of a fraternity. I’d decided to be an attorney. But in 1964, my senior year, I made a commitment to go into the Jesuit seminary. It was a shock to everyone, especially my parents, who wanted me to do something more financially profitable.
A few months before graduation I had dinner with a friend, and we started talking about my seizures. His father, who was head of St. Vincent Hospital in Los Angeles, recommended I consult Dr. John Doyle, a leading specialist. After some tests, Dr. Doyle called me in and said, “I’ve got some good news and some bad news. The good news is that you don’t have to go into the military.” This was in the early years of Vietnam. I said, “That isn’t a big thing, because I’m going to be a priest.” He said, “The bad news is you can’t become a priest either. You have epilepsy.” I was shocked. I hadn’t known of the church’s rule excluding epileptics from the priesthood. Dr. Doyle gave me a simplistic explanation of the disorder that, while not medically precise, was so good I still use it. He made an analogy between the body and the kind of old-fashioned clock which, if wound too tightly, snaps back at you. Mother Nature, he said, built a regulator into most people that prevents them from going too far. But in epileptics, the regulator doesn’t always work—we don’t get the signal to slow down or stop. And when we pass the ultimate point, we must have a convulsion to relax ourselves so that our internal system doesn’t burn out.
Dr. Doyle prescribed drugs. I walked out of his office scared. All of a sudden I was different, a marked man. I was unprepared, though, for what followed. I called my parents. Their reaction hurt me—they said no son of theirs was an epileptic, that I had to get away from those crazy friends of mine and come home. Only years later did I learn that there was a Portuguese superstition—and I’m 100 percent Portuguese—that epilepsy means possession by the Devil as a result of one of your ancestors’ having committed an unnatural act with an animal. After the letdown with my folks, my driver’s license was revoked and my life insurance premium raised. I started feeling extremely sorry for myself. I didn’t know what to do or why God was punishing me. I went into a depression that lasted almost six months. When I think back on that time I cringe. I was really a very lonely person. I began to realize this great burden I was carrying. I lost a lot of friends because I became obsessed with epilepsy and bored them.
The Jesuits, who could see me deteriorating, were fabulous and started getting me jobs. One was with the Bob Hope family. That really gave me an opportunity to come out of myself. Mr. Hope would take me for rides because he liked to drive, and we’d talk. He’s the one who suggested I work on a congressional staff. Slowly I began regaining my self-confidence, and wrote the letter that got me a job with Rep. Bernie Sisk of California. It was April 1965, almost a year since Dr. Doyle’s diagnosis.
Three months later I had a tumor removed from the back of my head. The doctor said it might have triggered the epilepsy, but couldn’t say conclusively. When I’d recovered, I met and started dating Phyllis Butler, an aide to Rep. Andy Jacobs of Indiana. But I didn’t tell her about the epilepsy because I didn’t want to jeopardize our relationship. We’d been going together for nine months when she threw a birthday party for me. I had too much to drink. I wanted to tell her I had epilepsy. I finally blurted out the truth, and she said, “So what?” We were married in 1967. The next year, during a dinner with a lobbyist, I had my first seizure since being on medication. I had gotten my license back and had been living a normal life. Later a co-worker who didn’t get along with me wrote a memo to Sisk saying I should be fired and sent me a copy. That depressed me, and I had another seizure.
Sisk stood by me. But shortly thereafter, on a legislative project, I had to get a majority of the House to sign a petition at the last minute. I ran myself ragged—probably one of the worst days I’d ever spent. To cap it off, I had to make plane arrangements for a large delegation of us to fly West the same day. An hour after takeoff I had another seizure. Again Sisk gave me his support. And years later, when others were offering me jobs, he suggested I stay until he retired—and run for his seat.
That’s what I did in 1978. By that time it was easy for me to talk about epilepsy. I’d done enough research and learned of the terrible stigma the disorder carried, so I was confident enough to bring it out in the open the first day of my campaign, although political professionals advised against doing it. I think my self-confidence and candidness were key factors in my election.
To me the foundation of discrimination is ignorance. Most people slight epileptics not out of malice, but fear. There are myths about it. Many think it’s hereditary, when that is believed to play only a minor role. In 1980 I made a movie on epilepsy for PBS to show to high school kids, and I have been active in the Epilepsy Foundation of America, on whose behalf I’ve testified before Congress.
Today, with timely diagnosis and modern medicine, fully 80 percent of all epileptics can control the disorder. I no longer take daily medication. My last seizure occurred six or eight years ago. In some ways epilepsy forced me to be at peace with myself. Having that, I can help other people. What greater gift can anyone receive?