Standing Up for His Safety

    One day in kindergarten, my life changed forever. 

    I fell over in the classroom. My whole body started shaking. My teachers called 911. The last thing I remember is leaving school in an ambulance.

    Next thing I knew, I was in the hospital having tests done. Soon I found out what was wrong. 

    The doctors told my parents I had epilepsy. 

    One day in kindergarten, my life changed forever.

    I fell over in class. My body started shaking. My teachers called 911. I left school in an ambulance.

    Next thing I knew, I was in the hospital having tests done. Soon I found out what was wrong.

    The doctors told my parents I had epilepsy.

    One day in kindergarten, my life changed forever.

    I fell over in the classroom, and my entire body started shaking. My teachers called 911. The last thing I remember is leaving school in an ambulance.

    Next thing I knew, I was in the hospital having tests done. Soon I found out what was wrong.

    The doctors told my parents I had epilepsy.

    Epilepsy is a condition that affects the brain. It’s pretty common: One in 26 people will have it at some point in their lives. When you have epilepsy, you have seizures. Those seizures are caused by surges of electricity in your brain.

    There are different kinds of seizures. Most people picture someone’s body jerking around, but not all seizures are like that. Some look like the person is just staring into space. They may be awake and know they’re having a seizure. Or they may have no idea.

    Many people don’t know about the staring-into-space seizures. They’re called absence seizures. I was probably having those for a while before I had the seizure that sent me to the hospital.

    In the days after my first seizure, I had up to 50 seizures a day. I was in and out of the hospital for months. Doctors tried many medicines. No one could make the seizures stop. 

    Epilepsy, a condition that affects the brain, is fairly common: One out of every 26 people will have it at some point in their lives. People with epilepsy have seizures, which are caused by surges of electricity in their brains.

    When people think about seizures, they usually picture someone’s body jerking around—but not all seizures are like that. Some look like the person is simply staring off into space. They may be conscious and realize they’re having a seizure, or they may be totally unaware of it.

    Many people don’t know about the staring-into-space seizures, which are also called absence seizures. It turns out I was probably having those for a while before I had the seizure that sent me to the hospital.

    In the days after my first seizure, I had up to 50 seizures a day. I was in and out of the hospital for months. Doctors had me trying a variety of medicines in hopes of making the seizures stop. 

    Those first months were hard. The seizures had damaged my brain. I went from reading chapter books to not being able to read at all. I had to relearn my ABCs. I had trouble talking.

    But I was lucky. We found the right medicine to stop the seizures. With hard work, I relearned most of what I had forgotten. Talking was the hardest. I was in speech therapy until last year.

    Now I do well in school. I love to read and write. I still process things more slowly than I used to, and I have trouble remembering words. But mostly, epilepsy doesn’t affect my daily life. I’ve been seizure-free for seven years now. I was even able to stop taking medication.

    How have I stayed seizure-free? I’m careful about my health. I get enough sleep. I limit the sugar I eat. I have checkups and tests pretty often. 

    Those first months were difficult for my family. The seizures had seriously damaged my brain. I went from reading chapter books to not being able to read at all. I had to relearn my ABCs, and I had trouble talking.

    But honestly, I was fortunate. We finally identified the right medicine to stop the seizures, and with a lot of hard work, I relearned almost everything I had forgotten. Talking was the most challenging. I was in speech therapy until last year.

    Today I do well in school and enjoy reading and writing. I still process things a little more slowly than I did before, and I have trouble remembering words—but overall, epilepsy doesn’t really affect my daily life. I’ve been seizure-free for seven years now. I was even able to stop taking medication.

    How have I managed to stay seizure-free? I’m extremely careful about my health: I get enough sleep and limit the sugar I eat, and I go in for checkups and tests frequently. 

    Having epilepsy hasn’t just taught me how to take care of myself. It has also taught me how to advocate for myself—especially in school.

    Sometimes I have to ask for extra time on an assignment. I also have to make sure my teachers know what to do if I have a seizure.

    At one point I thought: Wouldn’t it be great if I didn’t have to do that?

    If my kindergarten teachers had been trained, they might have recognized my absence seizures. Maybe I could have avoided the damage to my brain. I kept thinking about that.

    I did some research. I learned that some states have seizure-safe school laws. In a seizure-safe school, staff are taught how to spot seizures. They also learn what to do when they see one.

    Students are taught about epilepsy too. That’s important because many kids don’t understand it. I was bullied for speaking slowly.

    Now I’m fighting to get Washington, D.C.—where I live—to pass a seizure-safe schools bill. I’ve spoken in front of the school board and met with my local elected officials. Speaking up can feel scary. But it’s worth it. It looks like the bill will pass.

    I never thought I could make a difference like this. But everyone should be able to learn safely. If I can help make that happen, all my struggles will have been worth it. 

    In addition to teaching me how to manage my health, having epilepsy has taught me a lot about how to advocate for myself—especially in school.

    Because I process things more slowly, I sometimes have to request extra time on assignments. I also have to make sure my teachers know how to respond if I have a seizure.

    At one point I thought: Wouldn’t it be great if I didn’t have to do that?

    If my kindergarten teachers had been trained to recognize absence seizures, I might have avoided the damage to my brain. Once I realized that, I couldn’t stop thinking about it.

    I did some research and discovered that some states have seizure-safe school laws. In a seizure-safe school, staff are trained in how to spot seizures and what to do when they see someone experiencing one.

    Students are taught about epilepsy too, which is important because many kids don’t understand it. I was bullied because I spoke slowly.

    Now I’m fighting to make sure Washington, D.C.—where I live—passes a seizure-safe schools bill. I’ve spoken in front of the school board and met with my local elected officials. Although speaking up has been uncomfortable at times, it’s also been worthwhile. It looks like the bill is going to pass.

    Honestly, I never imagined I could make a difference like this—but everyone deserves the opportunity to learn safely. If I can help make that possible, all my struggles will have been worth it.