To the 15-Year-Old Diagnosed With Juvenile Myoclonic Epilepsy
You are probably pretty overwhelmed right now. Not only are you 15, trying to figure out who you are and what you want to be, but epilepsy just got thrown in the mix too. For a few years life is going to be about doctor’s visits, medications and the rules you have to follow.
It’s going to be pretty scary for a while; I’m not going to lie. There will be mornings you just lay in the bathroom and cry because you’re so afraid, and honestly you couldn’t move anyways because your arms and torso are jerking so hard you’d fall over. You will only have two seizures, but you will have jerks every day until they finally get your medication figured out.
Your life has become so focused on your epilepsy that you’ve forgotten who you are without it. So you continue living as though fear rules. You don’t get your license, even though you were cleared because you’re scared you’ll hurt someone. You don’t go to college because you’re scared you won’t be able to pay attention. You don’t talk to boys because you’re afraid they won’t talk to you after they find out you have epilepsy.
At 22 you finally decide epilepsy isn’t going to make all the decisions for you anymore. You get your license. You talk to boys. You still don’t go to college, but not because you’re afraid, because you have a great job and you don’t need to. You have wonderful friends, you have travelled quite a bit and you bought your own car (freedom).
The medication that controls your jerks, however, has a lot of side effects: exhaustion, difficulty with concentration/finding words and memory problems. And every year those side effects seem to affect you more. You go through times where you are doing better and you get up early for work and go out late with friends and have no problems. The next month something changes and you take a three-hour nap every day after work and then go to bed at 9. You can’t remember names, you forget what your boss just told you and you can’t remember your childhood at all. You struggle with this, but you’ve learned how to deal with it.
You’re learning that memories aren’t the important thing, the day you’re living is.
You’ve learned the importance of to-do lists and Post-It notes. You’ve come to appreciate a nap like you never did as a child.
You see, you have to take the bad and figure out ways to make it work. You’re going to have epilepsy for the rest of your life, so don’t give up; keep figuring out ways to make it work. Keep taking naps, appreciate today, make lists, do what you need to do, but don’t give up.
You’ve got this.
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