CURE - Citizens United for Research in Epilepsy It's Time We Found a CURE CURE Epilepsy Research

Story TitleIt is difficult for me to know how to begin writing this. So many stories about epilepsy are so heart wrenching that I feel a twinge of guilt telling my story. I am knocking on wood with one hand while I type this sentence: I do not have a child with epilepsy. Rather, I am the subject of this story.

I was diagnosed with absence seizures when I was six years old. I remember thinking that I needed glasses because I couldn’t see the blackboard. My older brother had trouble in class before he got his glasses, so this made sense to me. In reality, my sight was perfect—I just didn’t know what was going on because I was having upwards of 100 seizures a day. One day at lunch, my mom gave me a strange look and rushed me to the hospital. Apparently, she had been calling my name repeatedly and I didn’t answer. I remember the CT scan as if it happened yesterday—the doctors disobeyed my mom’s instructions and did the test after she had left to find my brother a babysitter, and invited several student doctors in to watch. You might find it hard to believe, but in my child’s mind, that episode—lying with my head restrained, my body under a lead blanket in a huge machine with so many strangers staring at me—remains the single most traumatic thing that happened to me because of epilepsy.

Don’t get me wrong—things changed. My teachers had to be assured that I could still remain in regular classes (I was having all of those seizures and was essentially unconscious for a big portion of class, and yet still kept up, my parents said), and my friends and their parents had to be told about my condition. I could not play video games, ride roller coasters, look at strobe lights, or watch too much TV. I had to watch my diet and my sleep, wake up in the middle of the night to take medicine and get regular blood tests. I learned how to play chess so my dad could keep me awake before my EEGs. But in general, I had a very normal childhood.

My seizures were well controlled with medication, though I had numerous side effects, including weight gain and intense stomach pain. Those pains eventually sent me to the hospital once again when I was eight.  [Katy] After a week in the hospital undergoing random tests (for cancer, lactose intolerance… everything but epilepsy), my neurologist admitted that I was indeed having a toxic reaction to my medication. When he took me off of the medication, my pain lessened and my seizures declined. The doctor, who specialized in pediatric neurology, did not seem to have any idea what was happening to me, but he decided I was “cured.” Recently, my mom gave me the medical records from that doctor, and they read like a therapist’s notes: She is a happy child, bright, cute. You can definitely sense his surprise.

Two and a half years after my miraculous “cure,” during which I was seizure-free, I had a grand mal seizure in the middle of school. I was in sixth grade, and all of a sudden, I had epilepsy again—and everyone knew it. But perhaps the most miraculous thing about my experience with epilepsy is how little I was ridiculed for it. According to my friends, while I was having the seizure, a popular boy in my class jumped up declaring “my cousin has that” and no one made fun of me. My teacher had been a paramedic in the army and knew what to do. Counselors were sent in so the other kids who thought I was dying could learn about what happened. My mom apologized that she hadn’t been there, and I told her laughingly, “That’s ok, mom; I wasn’t there either.” Later, when I started dating and had to tell boys that I had epilepsy (my parents told me that everyone should know, both for my protection and theirs), none of them balked. “What should I do?” they would ask. “Nothing,” I’d say. “Make sure I don’t hurt myself.” “OK, what time do you have to be home?”

My seizures were well controlled from the ages of 11-17. A few months before I went away to college, I was taken off of the medication as an experiment. It has been 17 years, and I haven’t had any seizures. I also don’t have any idea why I had them, or why they stopped. My one lasting effect of epilepsy—besides a lifelong tendency for seizures—is a very enlarged liver due to those years of taking anticonvulsants, which was discovered by a surgeon when I had my gallbladder removed at 25. Other than that, since age 17, I have earned a masters degree, developed a career doing research on financial services, married, and had two children. My life has been very happy.

And yet I think about the return of epilepsy all the time. “Will pregnancy give me seizures?” I wondered that as soon as I got over the joy of that first positive pregnancy test. My doctors had no idea. I have been happy to have lost weight quickly after having my second child, but I’m secretly worried that rapid weight loss or hormonal changes from breastfeeding might trigger seizures. After all, those causes seem as likely as any. Then what would I do? It’s hard enough juggling a career and two preschool aged kids. I wonder if I’d be able to keep my job staring at a  [Katy and family] computer screen all day, if I could be alone with my baby, drive, if I could still be independent. I know there are many women and men who do all of these things while battling epilepsy, like my Aunt Becky, but I don’t know if I have it together enough to be one of them.

And of course I wonder about my kids. Will they have epilepsy? Is that something I somehow passed on to them, seeing as we have epilepsy on both sides of my family? No one knows. It seems that in the course of talking about epilepsy, no one has any answers. But I like to think that what we do have is a way to think differently about our bodies and our minds. Seven months after my first miraculous cure from epilepsy, I was hit by a car as I walked home from school. I had massive internal injuries and my pelvis was fractured on both sides in multiple places. It took three months for me to learn to walk again. In that time, I was in a wheelchair, and I received a lot of poor treatment, mostly from adults. You look normal, people would say to me. What’s wrong with you? As if the vision of a “normal-looking” child who nonetheless had a disability or neurological issue was somehow threatening or frightening.

Living with epilepsy and living through that accident remind me of the three bullets I have dodged in my life: the first, when epilepsy did not affect my childhood to any great degree; the second, when I emerged from that car accident alive and not paralyzed; and the third, when my returning epilepsy left me relatively unscathed once again. But therein lies the definition of luck. You are lucky when you experience a positive outcome in direct juxtaposition with those who are not so fortunate. I am lucky that I have had many years wherein I could walk with my own legs, work, go to school, deliver babies, avoid medication, and sleep peacefully. I am well aware that the next bullet might hit me. I am even more aware that it has already hit so many others, including those with epilepsy so severe that it robs them of the type of life I have been lucky to live. I am very grateful that there is an organization like CURE that focuses on the spectrum of seizure disorders with the intention of eradicating the condition so that “luck” is less of an issue. Let’s find a real cure.

CURE epilepsy