Seizing the day to beat epilepsy

I’m 16 years old and have epilepsy. That means I sometimes have seizures, which prevent me from living my life like most other kids. The drugs I take have side effects. Some cause exhaustion and make it hard for me to concentrate. My family tells me that others make my personality sort of flat. Fortunately, I’ve avoided the worst side effects, which can include weight gain, hair loss, and even a life-threatening skin rash. High school is hard enough without looking like a middle-aged man with bad skin.

Epilepsy will prevent me from learning to drive any time soon. I also can’t ride a bike, downhill ski, and must be extra careful when swimming. Basically, anything that could result in me getting hurt or hurting others if I have a seizure is off the table. My neurologist told my parents they may have to buy me a self-driving Tesla.

While my condition has caused some problems, others with epilepsy have it much worse. That’s why I’m organizing a running race—Seize the Day: Amer’s Trail Epilepsy Run—to raise money and awareness for our local epilepsy center. The race will be on Aug. 14 on trails at Mendon Ponds Park. There’ll be 5k and 10k options. I’m hoping to raise $100,000. I’d love to have more runners, volunteers, and sponsors.

I had my first seizure in 2019 when I was in seventh grade. I was preparing for Nordic ski practice and then the next thing I knew the school nurse and a few other adults were standing over me. An ambulance rushed me to the hospital. I spent the night there connected to tubes and wires. This was a very confusing time for me; in my post-seizure state, I can’t form thoughts in a normal way. And it was shocking for my family. We’d never experienced anything like this and were unsure how to deal with it. In the end, doctors decided nothing was wrong with me and I was sent home.

But a year later I had a second big seizure. That’s when I was diagnosed with epilepsy and put on medication. We found out later that my dad’s aunt also has epilepsy and that my uncle had a seizure when he was young. Many kids have seizures but never have a second one, so they don’t get diagnosed with epilepsy. Others get the diagnosis but over time grow out of it. I’m told I should not expect that with my type of epilepsy.  

What I have is juvenile absence epilepsy. That means I was diagnosed when I was a kid and that I have a lot of what are called “absence seizures.”  There are many different types of seizures, but I have experienced two. I’ve had several grand mal seizures, which result in me falling to the ground and convulsing for a few minutes. I don’t remember these events after they occur. The second type is absence seizures. My family calls these “space outs.” I can still function during an absence seizure, but my mind goes blank for a few seconds and my body slows down. I have multiple absence seizures every day.

Medication is supposed to control all my seizures. So far, it seems to stop grand mal seizures but not so much the absence seizures. It’s been a long process of trial and error. I’m now starting my fifth drug and am trying to stay hopeful that this one will work.

The side effects, which I mentioned earlier, have been bad enough that my grades have suffered. It’s hard for me to get up for early morning classes and I cannot focus even when I’m there. My grades slipped in a couple classes even though I now get extra time for my exams.

Sports, too, is an area that has been challenging. At my high school in Honeoye Falls, I compete in cross country running, Nordic skiing, and track. Last summer I logged more running miles than just about anyone else on my team. This should have prepared me for some strong races. But when I began new medications, I became increasingly tired, and any hope of winning races dropped off. That was true across all three of my seasons as I experimented with dosage levels and continued to fight absence seizures mid-race. This was a big disappointment since sports have been a huge part of my life and I felt I had put in the work to be successful.

Still, I continue to participate in sports and am proud to be a three-season athlete. Sports are the main part of my social life and I enjoy hanging out with my friends, even if many of them have surpassed me lately.

While epilepsy has had a negative impact on my life, I understand there are others who have it much worse. My big seizures are largely under control, but some people have grand mal seizures almost every day. I’ve learned that 50 million people suffer from epilepsy and 32 percent of them are unable to work as a result. Roughly half of epileptics, like me, continue to have seizures even while taking medication.

It would be easy for me to get caught up in disappointment over the things I cannot do. However, I’d like to help others with symptoms worse than mine. For the Aug. 14 race, I’ve teamed up with our local agency, Empowering People’s Independence. So far, we have raised over $52,000 from corporate sponsorships and we hope to have over 200 runners. All the money will benefit the local Epilepsy Alliance, the epilepsy services division of EPI. They serve more than 7,000 children and adults who suffer from epilepsy and seizure disorders in our community. To join as a runner, volunteer, or sponsor, visit www.epiny.org/seizetheday

I’d like to make this race an annual Rochester event, at least for a couple of years until I go to college. And then maybe someone else will pick up the baton and continue it beyond that.

Amer Armbruster is a rising junior at Honeoye Falls-Lima High School.