As I walked through the basement of Hayden Library several nights ago, I saw a Newsweek magazine that had a cover story on epilepsy. The majority of the ASU population would not give it a second glance, but this article has special meaning to me.
I was diagnosed with epilepsy at the age 3. As I grew up, it never really posed a problem. The older I grew, though, the more of a problem it became. The defining moment came the day I turned 15 years old and 7 months; this is the day every Arizona teenager waits for because they are eligible for their learner’s driving permit. Independence seems that much closer.
If a person diagnosed with epilepsy is not seizure-free, they are not allowed to drive. I struggled with my seizures for several years until I finally got clearance from my doctor that I could get my learner’s permit. This might seem trivial, but in a culture that stresses independence and driving, it is hard for a person to take the news that they may never sit behind the wheel. I am fortunate though; I have been
seizure-free for four years now and am largely independent.
Nevertheless, I kept my diagnosis very quiet because, as a person with epilepsy, I felt like I lived on a desert island.
Compared to cancer and Parkinson’s, epilepsy goes largely unnoticed by the public. (Cancer produces 196 million hits on Google; epilepsy only 10.7 million.) When I saw the cover of Newsweek, I felt a wave of optimism rush over me, as though some attention may finally come to this disorder that can lead to permanent brain damage or even death.
Staggering statistics about this ailment exist. According to the Newsweek story, there are more Americans diagnosed with epilepsy than Multiple Sclerosis, cerebral palsy, Muscular Dystrophy and Parkinson’s combined. Sobering stories exist about people who lived in the public eye — disabled-world.com notes that Sir Isaac Newton, Vincent van Gogh, Leonardo da Vinci and Aristotle all suffered from seizures. Musician Neil Young and actor Danny Glover both have similar fates.
Some people believe that there is a cure for this disorder — this is a misconception. Doctors and patients can only work together to control seizures. I will live as an epileptic person for the rest of my life unless further action is taken. There is hope, though.
Sen. Edward Kennedy, D-Mass., is considering putting forth an important bill that encourages in-depth research and puts more funding toward finding a cure. This initiative could be the silver bullet to epilepsy — something that is welcomed with open arms and long overdue.
With the modern medical marvels that exist, it is frustrating that we do not have an answer to patients who ask, “Why?” This answer can only come if we invest the time and resources. Opposition may use the present situation as a reason to delay this bill; current economic hardships already have most of us with holes in our pockets.
But, as somebody with epilepsy, I say, if not now, when? There will always be a reason for delay, but while politicians come up with excuses, people on Main Street will continue to fight the quiet battle that epilepsy has become.
Reach Andrew at andrew.hedlund@asu.edu.
