What it’s Like to Have Epilepsy

SUMMER: My name is Summer. I'm twelve years old, and I have epilepsy. Epilepsy's... I don't want to say it's a "disability," but for me, it's pretty much just an impediment. If I get too hot, or if I get too cold, or if there's strobe lights, or really, really, really bright lights, and I look up at them, I go into a full-blown seizure, because I think it's something that goes off in the brain. It can happen any time, anywhere, and I'm not aware that they've actually happened. It can go for like ten, maybe fifteen seconds. It's sort of like I'm staring into space, like there's nothing there except for me looking at thin air, pretty much, and I can't hear and I can't speak. I don't even blink. I know I'm there, but I don't feel like I'm there. I sort of feel like someone is filling in for me. I come around, and I don't remember what's gone on, what's been said, who said what... who's written what on the board. And I think it really, really affects my grades, because if I didn't have as many absent seizures as I do, then I'd probably be in the top sets for all my lessons. I usually get told off quite a lot in lessons because it looks like I'm not concentrating. And I've tried to explain to them, but they just don't listen. It doesn't give me a lot of confidence. Another type of seizure I have is called a "tonic-clonic." They can happen when you're ill, they can happen when you're in the middle of watching a film. A tonic-clonic lasts longer than an absent seizure. It's a full-blown spasm. It starts off with my arm, and then it moves to my leg, and then it moves to my toes. I can't get my words out properly! And I can hear, but I can't speak. It's like as soon as I go to talk, it's like I'm mute and my voice box doesn't work. A lot of people are petrified of asking me to go around their house because they don't want the hassle of them looking after me after I've had my seizure. My mom has to come along on the trips because she has to administer medication. I feel really embarrassed that my mom is there, because all my friends don't have their mom there, and I sort of feel like the odd one out. It's really frustrating. I love my mom, and I know why she has to be there, but I just... sometimes there's that little bit of me that wants her not to be there. I feel some people rub it in my face that they've gone on sleepovers or that they've gone and watched a film in 3D. I feel really jealous and upset that I've not been able to go. Like if I do see a 3D movie, it would bring on a seizure. When I'm at home and I'm writing stories and I'm writing plays, I feel like I'm doing what I was made to do, but then when I get to school, I just feel like I'm playing another person. I feel like my whole school life is a play. Like when something goes wrong, the scenes are written wrong, and you have to go back and rewrite the scene and then replay that. I don't feel like I'm me, I feel like I'm some sort of ghost out of a film, and it's never going to go back to that film, because that film is over now. I sometimes think, "Why does it have to be me?" I was born this way, and if I want to act like a miserable person, I can act like a miserable person. What's the point of that when I've got my whole life ahead of me?