Brainstorm: Living with epilepsy


Morgan Gindler

Photo by Morgan Gindler and illustration by Annie O'Brien

Annie O'Brien, health and wellness editor

Some high school freshmen stress over who they are going to eat lunch with. Others stress about their physics grade, worried their low B will drop. Others worry about which shirt they should wear on any given day. But for Cameron Schulze, freshman, his worries are vastly different.

“I just have the fear of falling down and having a seizure every day of my life,” Cameron said. “It’s not that fun not knowing if you’re going to have a seizure. I’m always worried that I might have a bad one and not be able to move.”

Cameron has epilepsy, a disorder characterized by recurring seizures, which can take on various forms. According to his mother, Becky Schulze, he was diagnosed with it shortly after he was born, a diagnosis that changed the family’s lives.

“We were devastated to know that this is a disorder that there’s no cure for,” Becky said. “It was hard, but we had a lot of great family and friend support. We also learned as much as we could about epilepsy.”

Cameron has dealt with seizures his entire life. He has had three brain surgeries, tried dozens of medications and even special diets to help with seizure control. According to Darla Templeton, Epilepsy Foundation of Missouri and Kansas CEO, epilepsy is a lot scarier than many other disabilities.

“If you have another disability such as blindness, you go to bed blind and you wake up blind,” Templeton said. “But with epilepsy it’s different. You might have a seizure at some period of the day or you might not. The individual feels that they lack control and oftentimes it’s because they do.”

Cameron has a support dog named Keebler, whom he has had for about a year, and takes with him wherever he goes. Along with his dog, parents and doctors, Cameron said his friends have been an incredible help to him over the years. He said it eases his mind knowing he has people around who know what to do if he has a seizure.

“In third or fourth grade, I had a seizure on the playground,” Cameron said. “[My friends] all knew what to do. They grouped up and got someone to help me and lower me down slowly so I didn’t hit my head. I always know that they will help me whenever I need it.”

In fifth grade, Cameron’s epilepsy was so bad that he was put into a drug-induced coma for three weeks and had to have emergency brain surgery. According to Becky, the surgeries caused anxiety because they were not sure how his personality would be affected. But she said it was preferable to having seizures every single day.

“My eyes blink rapidly,” Cameron said. “My arms twitch. I won’t be able to communicate with anyone because if I tried, my words would be all mixed up. If I’m not careful I [could] fall down and injure myself. If I injure myself normally, it would not be that bad. But during a seizure, it hurts more than usual.”

Cameron has not had a seizure since April 2018. Keebler follows him around KHS and gets plenty of admiration. And although Cameron may seem out of the ordinary, his mom said he does not let his epilepsy get in his way.

“He never complained, never asked ‘Why me?’ or anything like that,” Becky said. “He loves to hang out with his brothers, [play] basketball, swim, [play] video games and he just started racquetball. He is a typical teenage boy.”