Old Favorite From November 2007

Commentary
Mother won’t let epilepsy take over her son’s life
by Amy L. Cornell Community columnist | amylcornell@gmail.com
November 8, 2007

My My son, before an epileptic seizure, receives an aura. An aura is a feeling or a premonition that a seizure is about to begin. My son’s auras take many forms: Usually a sensation washes over him, but he has also talked of a taste or a smell.

Once when I pressed him to describe what was happening in his head when he had a seizure, he said, “Sometimes, I hear them coming.” I want to know what sound he hears, but he cannot describe it to me.

If only I could share his experience and hear the seizure coming myself, I could help him by describing it for him. Naming the aura might help him master these charges which take over his whole mind and body. I read somewhere that an aura is simply the brain creating a hallucination. People with epilepsy learn to heed these warnings as if they were smoke alarms alerting them to fire in an unseen place.

When a seizure begins, his left arm bends at the elbow and he makes a kind of half backwards fist with his left hand, which stays at about shoulder level. His head and eyeballs twitch and slowly turn left as well. He often loses muscle tone and falls to the floor. The seizures last 10, 20, 30 eternal seconds. Sometimes it feels as if I am watching them in slow motion on a television screen.

Auras have brought a message of imminent seizure to my son as many as five times a day. He’s had them in school, in his sleep, at summer camp, at the dinner table, on the playground. I often think they frighten those of us around him more than they frighten him. My son has no memory of them when they are over. He often needs to take a nap.

If I am lucky enough to be near him while he is having a seizure, I talk to him. He can sometimes respond with a word or two, but he cannot control the leftward twitching. I tell him I love him, and I hold his hand through his seizures. I want him to be aware of me even though he has entered this other world. If his young misfiring brain is filled with nightmares and demons, I want him to hear one friendly voice. If he is scared in there, I want him to know I am out here holding his hand and waiting for him to come back. I am the trail of breadcrumbs.

Once upon a time, people were put in asylums or colonies when they had epilepsy. At another point in time, seizures were thought to exist in the minds of the prophet, the one who could predict the future.

Medieval churches believed people with epilepsy were possessed by demons. Napoleon, Van Gogh, Socrates: Artists, thinkers, leaders all had auras and went into this other realm.

Epilepsy is a peculiar malady, one which stops my heart every time my boy rides a bike or gets in a swimming pool. I am determined though, to allow him to live as normal a boy’s life as possible. One doctor told me, “You can’t let the disease rule your life.”

My son wears a helmet when he rides. He is always closely guarded while he is in the pool. When he turns 16, he may have trouble getting a driver’s license, if he is able to get one at all.

I am happy to report that with advances in pharmaceutical science and the diligence of an excellent pediatric neurologist, my son has been seizure-free for five months. In honor of Epilepsy Awareness Month, November, I wanted to share this small miracle.

Amy Cornell’s column appears every other Thursday in The Herald-Times. You can reach her at amylcornell@gmail.com.