I Beat Epilepsy

NO, I'M NOT CURED. BUT I REFUSE TO LET THIS CONDITION RUIN MY LIFE.

I've always loved the freedom of driving alone on an open road. My car was the place I could escape life's pressures. But one night about two and a half years ago, that changed. I was driving home from the radio station where I worked when suddenly I felt something strange. It was similar to the sensation you get when you're going to sneeze, only this time my heart started pounding, my palms sweating. I pulled over and waited for the feeling to pass, but it got stronger. Then, the first spasm hit. My body cramped up until I blacked out. I was having a seizure behind the wheel.

When I opened my eyes about 15 minutes later, I was crying and trembling uncontrollably. I drove the mile home, though I shouldn't have. I walked in the door and hung up my car keys. I haven't driven since.

That was when it truly hit me: I had epilepsy, an illness I couldn't run or drive away from. I'd had at least a dozen seizures in the previous two years, most while I slept. Now it was time for me to face it.

OUT OF NOWHERE

I'd been diagnosed with epilepsy at 30, after my first seizure in 1998. I was at the height of my career, hosting my own program at a renowned classical-music radio station in Washington, D.C. I traveled, went to parties and made public appearances. One morning I was talking to a colleague, and I opened my mouth to speak, but what came out was similar to a skipping record: "I, I, I, I..." The next thing I knew, I was on the couch in the reception area, a dozen concerned staffers standing over me. Before I could say anything, a rescue squad burst in and rushed me to the hospital.

Later that day, I found out that I'd had a grand mal seizure—the kind in which you fall down, your body spasms and you pass out. You may even drool or groan. Luckily, a coworker knew what was happening and put me in a safe position after I passed out: laying me on my side so I wouldn't choke if I threw up, holding my arms to keep them from hitting anything. Most important, he knew not to put anything in my mouth. (The myth is you can keep someone from swallowing her tongue by putting something between her teeth; people can't swallow their tongue, but someone having a seizure can bite hard, so wedging anything in her mouth is a bad idea.)

I had another seizure soon after I got to the hospital. The doctors ordered exams and brain scans, but the results were inconclusive, so they released me with antiseizure and antianxiety medications. No one used the word epilepsy, though that's what it was. I think we were all hoping it was a one-time deal, maybe a severe reaction to some shellfish I'd eaten. (Seizures can be caused by toxins in seafood.) We just had to see what would happen next.

After a seizure, crying and confused, I'd claw my way to consciousness.

A MEDICAL EDUCATION

Until I became one of the 2.3 million Americans with epilepsy, I had no idea what it was. I found out that it's a brain disorder in which you have repeated seizures, and it can be caused by illness or brain damage. Or it can simply appear, as in my case. For most people, there's no cure; the aim is to control the seizures. Some do so with medication and lead normal lives. Others seize 20 times a day. That prospect terrified me, but I couldn't think about it. I had to be positive, even if that meant sweeping all negative possibilities under the rug.

So that's what I did: Even though I had seizures almost monthly, I held tightly to the belief that the doctors could fix this. I had to give up alcohol, have someone with me while I bathed, take medication and, of course, wear the very attractive ID bracelet. And stop driving, advice I couldn't bear to follow at first. I didn't embrace the gravity of my situation. It took me a year before I could refer to my condition as epilepsy, and another 18 months until I parked my car indefinitely.

Despite my best efforts to pretend I was fine, though, reality seeped in. Waking after having a seizure during sleep felt pretty lousy. Crying and confused, I'd slowly claw my way to consciousness; at first I'd be unable to sit or stand without slumping over like a rag doll, as if I were drugged. I saw doctor after doctor, trying different combinations of medications, but nothing seemed to make a difference. One bright moment in the months after my first seizure, I met Steve Long, an office manager in my neurologist's office, and we started dating. Meeting him helped save me in an unexpected way. It was reassuring to have someone who knew so much about epilepsy and was so supportive. He pushed me to live as normal a life as possible. Things got serious, and we soon moved in together.

I kept up a strong facade for about a year, but the constant anxiety wore on me. What scared me most was not knowing when a seizure would hit: In the shower, on the bus, at work, while I was shopping or making love. I cringed at every little twitch my body made: Is this it? Is this ? Is it about to happen now? Now ? And I was angry at myself for not being braver.

Meanwhile, none of my treatments seemed to work, and every test I took got stranger. Once I saw a specialist for a 24-hour EEG, which measures brain waves. His team glued electrodes to my head and ran wires from them to a small box that sat on top of my head. To keep the device in place, they wrapped rolls of gauze under my chin and over the box, then around my forehead. A coiled cord connected the box to a portable recorder that stored information from the electrodes. I resembled a half-unwound mummy carrying a beeping cooler, and this was how they sent me out into the street to catch a taxi home by myself. I waited 10 minutes in broad daylight, but none stopped until a hospital attendant flagged one down. Wonder why. I wore the thing for 24 hours and spent two weeks washing model-airplane glue out of my hair. Because I didn't have a seizure that day, we didn't get any new answers.

I quickly began to feel like I was losing control. By 2000, my seizures were followed by days of depression that I couldn't shake. I stayed in bed, curled up, crying. I think it was partly physical but also an emotional reaction to what was happening to me. I was losing interest in my job, too. I saw a therapist, but after a few months, I stopped going. I was exhausted.

Physically, things only got worse. There was that horrifying incident in the car, and on a ski trip with Steve, I had two seizures in a few days, followed by panic attacks. We tried to stay calm, but we cut our vacation short.

Nothing was the same when we got home. My doctor wouldn't let me return to work until I could go a month without having a seizure, and I lost my job. Being unemployed was like a final punch in the stomach. I cried for weeks. In three short years, I'd gone from being this little star in Washington to never leaving the house, being highly medicated and sleeping 16 hours a day. I couldn't help but feel sorry for myself. There were times when I'd look in the mirror and think, What happened to the Diana I used to be? I knew she was still there—I just couldn't see her.

Desperate, I enrolled in the epilepsy-monitoring unit at Johns Hopkins Hospital in Baltimore in October 2001. Doctors there took me off medication in order to induce seizures so they could find where in my brain the seizures start. The hope was that I might be able to have surgery to remove the affected part.

I tried to be brave, but tears started as soon as Steve dropped me off. I was in a special room under video observation. No matter where I went, the camera followed me, zik-zikking in and out of focus. I lay there, crying as quietly as I could, knowing the entire staff saw me—a grown woman of 33 clinging to a teddy bear, wiping snot and tears on her T-shirt.

The five days I spent there were some of the hardest I've ever experienced. I had two seizures, which originated from the same small area of damage in my brain. That means it might be operable. My doctors told me that in cases like mine, surgery works only about 70 percent of the time, so they've left it to me to weigh the odds of having such a risky procedure. For now I've decided to skip surgery as long as my symptoms can be somewhat controlled. But science is progressing, and I'm hoping those odds will improve.

About a year ago, the radio station asked me if I wanted to come back to work. I was so happy to feel needed again.