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What It’s Like to Be a Teen with Epilepsy

The frustrating journey to end his seizures.

Family celebrating a birthday, sitting at a table around a cake
Photo credit: Courtesy of The Clappi Family
A doctor in a lab coat uses a tongue depressor to look into the open mouth of an eight year old girl in a bright pink shirt.

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When I woke up in the Pediatric Intensive Care Unit the first time, I felt really weird. My mom and dad were next to me, and I kept asking them, “Where am I? What is this place?” I was 11 years old and had already been in the hospital for weeks.

It all started a week after recovering from the flu in 2017. That’s when I had my first seizure. When it happened, my parents called an ambulance. I had another seizure on the way to the ER and a third one when I arrived. They tested me for all kinds of viruses and other illnesses, but everything came back normal. No one could figure out why I was having them, but they wouldn’t stop, and medication wasn’t helping.

A few times the seizures actually stopped my breathing. Finally, the doctors decided they needed to sedate me and insert a breathing tube. For two weeks I was in and out of consciousness, sometimes waking up and trying to rip the tube out.

I don’t remember any of that—that’s just what my mom told me after. When I was stable enough for the tube to be removed, I was moved to a regular room where therapists had to teach my muscles how to talk and walk and eat again. When I was finally discharged, I had to finish my sixth-grade year at home.

That was two years ago, and I’ve been in and out of the hospital ever since. I usually don’t remember my seizures. I just feel tired and confused after them.

Teenage boy giving a thumbs up while in a hospital bed
Photo credit: Courtesy of The Clappi family

I don’t like to talk too much about my epilepsy. I don’t want to be different. I have one friend I do talk to about it—Dominic. But he’s the only one who really knows about it. He looks after me and helps me, but he doesn’t treat me differently because of it.

Boy scout holding a box car
Photo credit: Courtesy of The Clappi family

My parents won’t let me go on far away camping trips with my Boy Scout troop because they don’t want me to have a seizure when I’m far from help. I can’t play football and lacrosse, the sports I like, because I might hurt my head. Once, when I was playing video games in the basement, my mom called down to me and I didn’t answer. When she came down to check on me, I was face down on the floor and not breathing. She calls down to check on me all the time now. At night, I wear an oxygen monitor that lets my parents know if I stop breathing.

“Some days I don’t think about my epilepsy much, and other days I think about it all the time and get angry.”
Louis Clappi

It’s been really hard on my older brother. I’m not able to do the things I used to do with him, and he wishes I could go back to normal without any medicines—the medicines make me really tired and slow and affect my memory.

Before seizures and medication, I remembered things easily. Now, if I did something a week or even a few days ago, sometimes I can’t remember it. I didn’t used to have to study to do well in school. Now I have to study a lot. School is much harder for me than it used to be.

Some days I don’t think about my epilepsy much, and other days I think about it all the time and get angry. Those feelings come and go.

Mom and kids at the beach, all sitting together smiling at camera.
Photo credit: Courtesy of The Clappi Family

I’m on a swim team with my brother. It’s pretty much the only sport I can do that I like. My favorite stroke is freestyle. In general, I just try to do whatever I can. If I can’t do it, I try to find another way. If I still can’t do it, I get frustrated, but I keep it inside.

I used to be scared to go to the hospital, but it’s gotten easier. We’ve been going there for so long now, that whenever I get checked in, they say, “I know you!” and they are really nice.

I’m grateful to know that my parents always have an eye on me and will be there if I need them, but I also don’t really like having them looking over my shoulder all the time.

“I have been dealing with this for so long, and I am just done with it.”
Louis Clappi

My parents recently told me I’d be getting a new surgery done by a robot named ROSA. The surgeons use a robotic arm to drill small holes in my skull to more safely get to the parts of my brain where they think the seizures are happening. I was kind of shocked when my parents told me about it. I wasn’t expecting it, and I’m scared. But if it will get me off these medications, let me get back to the things I enjoy, and make the seizures go away, I guess I’ll give it a try. I have been dealing with this for so long, and I am just done with it. Hopefully the surgery will work.

If it can get rid of my seizures, maybe my parents will finally give me back the freedom to do things on my own. More than anything, I want to have my memory back. I want to play around with my brother again. I want my parents to stop worrying. I just want to live the normal life of a 13-year-old.

Next Steps and Useful Resources

  • Learn more about ROSA, the innovative new robot that is helping kids with epilepsy.
  • How is ROSA changing the way we treat epilepsy? Learn more here.
  • Read more True Stories on The Well.

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Published March 12th, 2019
A doctor in a lab coat uses a tongue depressor to look into the open mouth of an eight year old girl in a bright pink shirt.

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