I had my first seizure and was diagnosed with epilepsy at 19 years old. I was lucky, actually; my mother is a nurse, and she saw that I was acting strange, so she got me off the stairs where I was standing. I had my first tonic-clonic seizure seconds later. She called 911, and when they got there 6 minutes later, I was still seizing. But the whole time, she made sure I was breathing. I’m a lot bigger than her, but she made sure I wouldn’t fall down the stairs (she still teases me occasionally about how sore she was the next day). I don’t remember any of that; I don’t remember anything from when I have seizures. But I will always be grateful to her for that, and for so much more.
Nearly 10 years later, and we still don’t know why I have seizures. I’m lucky, because my medication controls my epilepsy well, and the side effects aren’t too bad. But if I miss a single dose, without fail, I’ll have a seizure within 24 hours. All of the tests and studies I’ve done have essentially said, “Yeah, you have epilepsy, but we can’t figure out what causes it. Maybe next time.” It can be very discouraging sometimes.
But I’ve learned to make it work. I’ve surrounded myself with people who understand my epilepsy, and who love and support me no matter what. I’ve put myself through school, and I’m happily married. I’m working and doing what I love. Having epilepsy has taught me to be very conscious of my mind and body, and I think I’ve really benefitted from that.
All that being said, a cure for epilepsy would be a game changer. Right now, I still can’t do some of the things that I used to love. I don’t go swimming and I can’t rock climb, just in case. I don’t do solo hikes anymore, just in case. I can’t travel without quadruple checking that I remembered to take all of the medications I need for the trip, plus an extra week, just in case. I’m able to drive, thankfully. But every time I get behind the steering wheel, I worry: “Did I remember my meds today? Is my driving medical evaluation up-to-date? Do I feel weird in any way?”
“Is this the last day I get to do this?”
A cure means all of that changes. I can go back to doing everything I love to do, I can travel without worrying about anything other than my travel pillow. And I can drive, knowing for a fact that I’m not a danger to myself or anyone else. And I would never have to worry again about “What happens next time?”