I’m 16 and I have epilepsy. This means that I sometimes have crises, which prevents me from living my life like most other children. The drugs I take have side effects. Some exhaust me and prevent me from concentrating. My family tells me that other people make my personality a bit flat. Fortunately, I avoided the worst side effects, which can include weight gain, hair loss, and even a life-threatening rash. High school is hard enough without looking like a middle-aged man with bad skin.
Epilepsy will prevent me from learning to drive anytime soon. I also don’t know how to ride a bike, downhill ski and I have to be very careful when swimming. Basically, everything that could hurt me or hurt others if I have a crisis is out of purpose. My neurologist told my parents they might have to buy me a self-driving Tesla.
Although my condition has caused certain problems, other people with epilepsy have much worse. That’s why I’m organizing a run—Seize the Day: Amer’s Trail Epilepsy Run—to raise money and awareness for our local epilepsy center. The race will take place on August 14 on the trails of Mendon Ponds Park. There will be 5k and 10k options. I hope to raise $100,000. I would like to have more runners, volunteers and sponsors.
I had my first seizure in 2019 when I was in seventh grade. I was getting ready for Nordic skiing 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. It was a very confusing time for me; in my post-Crisis state, I cannot form thoughts in the normal way. And it was shocking for my family. We had never experienced anything like this and we didn’t know how to deal with it. In the end, the doctors decided that everything was fine with me and I was sent home.
But a year later, I had a second big crisis. That’s when I was diagnosed with epilepsy and took medication. We later found out that my father’s aunt also had epilepsy and my uncle had a seizure when he was young. Many children have seizures but never have a second one, so they are not diagnosed with epilepsy. Others receive the diagnosis, but over time they recover. I’m told I shouldn’t expect that with my type of epilepsy.
What I have is juvenile absence epilepsy. This means that I was diagnosed as a child and have a lot of what are called “absence seizures”. There are many types of seizures, but I have had two. I had several great harm crises, which made me fall to the ground and have convulsions for a few minutes. I don’t remember these events after they happened. The second type is absence seizures. My family calls these “spaces”. I can still work during an absence crisis, but my mind empties for a few seconds and my body slows down. I have several absence seizures every day.
Medications are supposed to control all my seizures. So far it seems to stop grand mal seizures, but not so much absence seizures. It was a long process of trial and error. I am now starting my fifth medication and trying to hold out hope that this one will work.
The side effects, which I mentioned earlier, were serious enough for my notes to suffer. It’s hard for me to get up for lessons early in the morning and I can’t concentrate even when I’m there. My grades have dropped in a few classes, although I now have more time for my exams.
Sport is also an area that has been difficult. At my high school in Honeoye Falls, I compete in cross-country running, Nordic skiing, and track and field. Last summer, I logged more running miles than anyone else on my team. That should have prepared me for some strong runs. But when I started taking new meds, I became more and more tired and any hope of winning races crumbled. This was true in my three seasons as I experimented with dosage levels and continued to struggle with mid-race absence seizures. It was a big disappointment because sport has been a big part of my life and I felt like I had worked hard to succeed.
Yet, I continue to participate in sports and am proud to be a three-season athlete. Sport is the main part of my social life and I enjoy spending time with my friends, although many of them have passed me by lately.
Although epilepsy has had a negative impact on my life, I understand that there are others who have much worse. My big seizures are mostly under control, but some people have grand mal seizures almost every day. I learned that 50 million people suffer from epilepsy and that 32 % of them are unable to work. About half of the epileptics, like me, continue to have crises even when they take medication.
It would be easy for me to be disappointed by the things I can’t do. However, I would like to help others with symptoms worse than mine. For the August 14 race, I associated myself with our local agency, Empowering People’s Independence. Until now, we have collected more than $ 52,000 in corporate sponsorships and we hope to have more than 200 runners. All proceeds 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 epileptic disorders in our community. To join as a runner, volunteer or sponsor, visit www.epiny.org/seizetheday
I would like to make this race an annual event in Rochester, at least for a few years until I go to college. And then maybe someone else will pick up the slack and carry it on beyond.
Amer Armbruster is a rising junior at Honeoye Falls-Lima High School.