Disclaimer: This will be a very honest post, probably because it is so close to my heart.
As someone in class a few weeks ago made a joke about the lights above giving him epilepsy..it took every ounce of compassion to hold myself back.
I realized, people make fun of epilepsy and people with seizures, because most are very ignorant of the disorder. Me on the other hand, I know everything there is to know about it. My baby brother has epilepsy, and we will never know if he was born with it, or how it came about. But, I just remember shopping with my parents one day at the Woodbury Commons Outlet Mall. I was 7, my brother 2. My father came rushing into the woman’s bathroom screaming out my mom’s name, our lives would never be the same.
Since December is the month that the American Epilepsy Society holds its national conference, and November of every month is National Epilepsy Awareness Month, there is no better time than the present to bring this disorder into a brighter light.
Most recently epilepsy has been profiled in the news with John Travolta’s son allegedly suffering from it. He died of a seizure in a bathtub.
An issue that was sad for people, but devastating to my family because it was so close to home.
The other day, I was late for class because my brother had a seizure in the shower. He is 17 and it’s so hard and embarrassing to him because every teenage boy wants their privacy. By typical means, my brother is a typical, annoying, teenage brother. He goes to school, always has his loud friends over, and eats everything in his path (including my food).
But, epilepsy has had it’s tremendous effects.
My brother can never have privacy. He can not lock his bedroom door or bathroom door in case he has a seizure. And all he wants at this age is his privacy! I couldn’t imagine always being watched. If we go out to eat, and my brother stays in the restroom for too long, one of us goes to the door and yells, just to make sure he’s ok. I couldn’t imagine that either, how annoyed would you be? He loves video games but can not play for a long amount of time because of his epilepsy. He loves football and tried to play in high school. He made the team, but got cut when he had a seizure on the field. Not only was his shot and dream of playing professionally taken away, it was taken away in front of the whole school. An embarrassment I could never fathom.
I can talk for days about his courage.
At times I feel guilty, because epilepsy is thought to be genetic. Why him, and not me? Maybe I didn’t have the strength that he has. The courage. The optimism. Maybe my goal was to tell people about it, spread awareness and he had the unfair burden of living it.
Through-out history and even today, some people think epilepsy is people who are evil or are involved with witchcraft because there is so much misunderstandings of epilepsy, let alone mental and neurological disorders. There are also many famous people with epilepsy. Yet, it is still basked in ignorance.
But my brother isn’t famous, he is just my brother. And hopefully I can be one of those voices to help spread what he is going through as my family & I try to give him the best, and what he asks for the most, “normal”, life possible.