Wednesday, November 3, 2010

What I Refuse to Sacrifice.

There are things that it's not wise to do with epilepsy. Scuba diving comes to mind, and as much as I'd love to try it, the rationale for passing on it until a year of oh so elusive seizure freedom makes sense to me. I understand why the powers that be don't want me to drive. But other than that?

I did high level competitive gymnastics & tumbling and trampoline with epilepsy. I teach the sport, and hope that no child in my care feels held back or feared because of a condition. I social dance (I know, I'm autistic. It works for me. Just go with it, I'll explain some other time). I have friends, and refuse to isolate myself in case of seizures. I go places all alone on the bus and on the train and on planes and by foot. No one is my keeper, nor should they be. As much as the general medical model paternalistic society would rather I didn't, I cultivate my independent streak and display it proudly.

The philosophy "Live as though each day is your last, and plan as though you'll live forever" is kind of where I am with things. I'd rather take some risks now instead of never get to experience things. Some precautions (medicalert bracelet, fairly liberal disclosure, living with a roommate, forgoing scuba diving) are reasonable. But I can't and won't live wrapped in them.

I wonder if dispelling some of the fear and manufactured mystery about epilepsy would reduce the well meaning encouragement to completely avoid risks? Maybe I'll know in my lifetime.


Anonymous said...

Hi. My son is a level 10 gymnast in his senior year of high school. He has been a gymnast for 12 years. It is his life. HIs sole focus. 5 hours/day in gym etc. And he was diagnosed yesterday with epilepsy. The neurologist told him that he should quit gymnastics, at least until his meds get his seizures under control. The thing is, his state meet is in 1 month, regional in 2 months, Nationals (which he'll more than likely qualify for) in 3 months. And then, he's done. He had already decided to not do it in college as he decided to go to a private art college instead of a major university. I grateful he had already reached this decision independent of this diagnosis. I already was concerned for how he would transition out of something that has been such a part of his life. At this point, we are leaning towards allowing him to complete his season. So far, only petit mal seizures. No grand mal. And he's been having these for a couple of years no. We just had no idea that these were seizures and that this was epilepsy.

Neurodivergent K said...

I feel for your son. Like, more than most people can probably imagine. Epilepsy sucks and being told you have to quit gymnastics (which is one of those things that helps at least FEEL like epilepsy is being controlled better) sucks. It was my life too.

I'm no neurologist (yet) but I'm a coach & a judge. I'd be leaning towards letting him finish, too. Nothing hurts like 'unfinished business'. I wish him an uneventful journey & swift seizure control.