The First Time I Understood Epilepsy

by Jennifer Matthewson

Sitting across from me at the table, she pauses for a moment before she begins. "I want you to understand my epilepsy," she explains. I look up at her, setting my fork on my plate, and give her my undivided attention. It is a story I am eager to hear.

Raised across the country from each other, my sister, a bright, beautiful woman in her early 20s, has been struggling with epilepsy for many years now—since her early teens. On a brief visit to the East Coast, she contracted Rocky Mountain Spotted Fever. According to the Kidshealth.org Web site, Rocky Mountain Spotted Fever leaves you with a high fever, chills, and a severe headache. Muscles become tender to the touch, red spots develop all over the body.

"Any major trauma to the body—changing birth control pills, not having the right medication, fevers, weight loss or gain—can affect my epilepsy," she tells me over our iced teas. She talks about how active she was in school, until the epilepsy started affecting her daily life. Spared from Grand Mal seizures, the mostly widely known seizure, my sister would "space out" for anywhere from fifteen seconds to an entire minute, oftentimes while she was mid-sentence. These Petit Mal seizures, as they’re referred to in medical terms, are accompanied by a complete seizing up of all muscle activity (including speech), leaving my sister exhausted after only a few seconds. To say high school activities were difficult to deal with would be an understatement.

In addition to dealing with the seizures, her medication would oftentimes be life-changing as well. My sister struggled with uncontrollable changes to her daily life ranging from long sleeping session in the afternoon, after a morning of seizures, to weight gain, which often added 20 to 30 pounds a year. Her studies faltered, leaving her to double her class load during her senior year of high school, just to ensure she would graduate on time.

I listen to her intently as she speaks, amazed that she’s dealt with so much. Amazed that I never knew the story until just now.

She talks of the seizures themselves—how her driver’s license was revoked until she was able to survive six months without having one, how she’s frightened of ever speaking in front of her classes or how she’s lost hope of ever joining a debate team again. Her seizures, lasting only a few seconds when her medications are right, oftentimes stop her mid-sentence, and appear to only be a "duh" moment for those around her. "Usually, people can’t even tell I’ve had one," she says, "and I’m good at recovering, so that no one notices that they’ve happened." She pauses in mid-sentence a few moments later, quickly recovering and pointing it out to me that she’s just had a seizure. To be honest, I couldn’t tell. "Yeah, I’m good at recovering," she laughs.

Her medications are as surprising as her tales of dealing with the seizures. She takes upwards of nine pills a day—Depakote, a pill dedicated to the treatment of simple seizures, or Petit Mal seizures, and Prozac, to combat the manic depressive episodes sometimes associated with Depakote. I ask her about alternative medicine methods for treatment of her seizures. "There are a few—accupuncture, various medical procedures—but they all require me to stop my medications for a certain amount of time, anywhere from six weeks to six months, and even then, there’s no promise that the procedures will help me," she explains, a tone of sadness in her voice. I wish right then that I had all the money in the world, to get her the best doctors and the best treatments. Anything I could do to help.

I realize then that while this may be the first time I understand epilepsy, it is also my call to action as a sister. This is only the beginning of my journey to help my sister in her struggle.

Jennifer Matthewson is a freelance writer and entrepreneur located in Portland, Oregon. In addition to her "Uncapped" contributions, she has been published in "Nervy Girl" and "The Writer," and anxiously awaits the printing of her first novel in Spring, 2005.