As a student athlete living with epilepsy, I am writing this article to spread awareness and share my story with the hope that people can gain a better understanding of what it’s like to live with this disorder and how they might help. I’ve found it harder than expected to put on paper how I feel and what I want to tell people. I’ve had to deal with epilepsy my whole life and it has affected something I love doing, playing sports. I’ve learned to beat some of the challenges, but that is not the whole story. It would be great to say I’ve overcome epilepsy, but the truth is, my journey with epilepsy continues.

People often define epilepsy as convulsive seizures. Epilepsy is so much more. For example, there is more than just one type of seizure; there are over 40 different types, including those that are not visible. When I was diagnosed with epilepsy at the age of only two years old, the type of seizure I had was called absence seizures. This type is more common in children and teens, and it appears as if someone is briefly unresponsive, daydreaming or ‘absent’ for a moment. Sometimes, a child can grow out of this type of seizure. For a long time, people didn’t know about my momentary absences in conversations or while I was playing ball, but it wasn’t until I was about twelve years old that I had a convulsive seizure.

I was playing a game with my travel basketball team, back when I played for the HYAA. It was only a few minutes into the game and things were going great. I stole a pass, sent it down the court to my teammate who laid it in-easy two points! Our defense was strong, and we forced another turnover. My friend inbounded the ball to me. The next thing I knew I was on the ground with a nurse kneeling over me.

When I regained consciousness, I was extremely confused. How did I end up on the floor? What happened to the game we were playing? And who was the woman kneeling over me? I could hardly breathe as I tried to wriggle free of her restraint. “Don’t move,” she told me, “Stay down for a minute.” She began asking me questions like who I am and where I was. Why wouldn’t I know my name or location? I’m at Hoop Group playing in a tournament, and my name is Grace, always has been. She helped me up and walked me to a nearby chair, where my mom was. She told me one of my teammates’ moms had called an ambulance. As lightheaded as I was feeling, I really wanted to stay and watch my team play. Nonetheless, I ended up going.

While I waited, one of my teammates brought over my water. As I looked at her, I saw she was crying. Then I noticed all my teammates were crying, and their parents consoled them with hugs and affirmation. They thought I was dying. I tried to tell them I was okay from across the gym by giving them heart signs and signaling to them, but the tears kept flowing. Eventually, the ambulance arrived, and I was taken to the hospital.

That evening, when the doctor diagnosed me with an epileptic seizure, I had to tell my parents my little secret. As the years went on, the doctors thought that I had grown out of my epilepsy, and I was taken off medication. After I was medicine-free the absence seizures came back. I didn’t tell anyone because I didn’t want to get put back on medication. Taking medication made me feel different from my friends. For five years I kept my seizures a secret, until finally in the middle of the basketball game, I couldn’t hide it any longer.

That night changed my life. I resumed taking medication, but it wasn’t so simple. The challenge was to find the right balance of medicines that worked together to control the seizures. Throughout high school, there was a lot of trial and error, which came with different side effects like headaches, dizziness, fatigue, and tremors. This impacted my athletics, which meant I couldn’t run track or play basketball, and it also impacted my academics.

Not being able to play a sport I loved and struggling with my grades made it very hard for me to be positive mentally and emotionally. It sometimes still does, but I try hard to work on that each and every day.

Whether or not you realize it, you probably know someone with a seizure condition. As someone living with epilepsy, here is what I wish everyone to know:

• According to the Epilepsy Foundation, if someone is having a convulsive seizure:
  • Stay calm, most seizures do not last very long
  • Keep the person having the seizure safe and away from sharp objects
  • Stay with the person until the seizure ends
  • Try to time the seizure
  • Don’t put anything in the person’s mouth or hold him/her down
  • Be sensitive and supportive and ask others to do the same

I was lucky that a parent in the gym was also a nurse, and she knew exactly what to do to help me when I had my convulsive seizure. I was also grateful to my teammate and her mom for coming to check on me at the hospital. My teammate told me that the team won the game, and that all my teammates were wishing me well and looking forward to seeing me again on the court. From the coach to my teammates and their families, everyone showed their support and encouraged me. My family and I really appreciated that.

• Epilepsy isn’t just about the seizure, but it’s everything that comes along with the disorder. Whether it’s visible or invisible, the seizures take a toll on everyday life. They impact athletics, academics, and personal relationships.
• At the end of the day, always remember to be kind and considerate to others because you never know what people are going through. A kind word or gesture can help a person in so many ways.

Epilepsy Foundation. (2023). What to do when someone has a seizure. Accessed at https://www.epilepsy.com/recognition/seizure-first-aid