Josh and Alexie’s Story

My brother, Josh, and I are different in every way, but we have two things that hold us together: family and epilepsy.

I will never forget the night that my older brother, the boy whom I loved and looked up to, had his first seizure. He was 18, and it came out of nowhere. After many tests, doctors concluded that his seizure was probably brought on by a past head injury. After his first seizure, Josh was put on medicine. However, the seizures continued. I was always afraid when the phone rang that it would be either a hospital or Josh, telling us that he had another one. His seizures caused him many injuries and even a car accident.

I was sixteen when I had my first seizure. I just remember waking up on a stretcher, not knowing who I was or where I was, or—most importantly—what was going on. It was a bizarre feeling when the EMT told me that I had a seizure. I always saw my brother suffer with it, but I never thought that I would experience the same thing.

A month later, I had another seizure and was taken to the hospital once again. This time, doctors took it more seriously. I was sent to a neurologist who ran multiple tests. She couldn’t find any reason for me to have epilepsy, but that was the diagnosis. She prescribed me on a low dose of anticonvulsants, but I continued to have random seizures. With every seizure, my dosage of anticonvulsants was increased. As the medicine dosage went up, I realized that I couldn’t think straight and was more emotional. My brother experiences similar symptoms. He can’t focus on things when he’s taking his medicine, which makes it difficult to read and do any type of work. Plus, as college students, taking medicine twice a day, every day, is rather difficult.

Epilepsy has affected everyone around me. My mom and dad tell me all the time that when a hospital calls they are afraid it’s about my brother or me. It’s a constant battle in my house about whether or not I took my medicine and, in my case, not wanting to take my medicine because of the side effects.

Although epilepsy isn’t the worst thing that could happen to me, it is something that will always be a part of my life and something that will, and does, affect every decision I make. Before I do anything, I am forced to ask myself, “Could this cause a seizure?” because nearly everything can. This disease needs to be cured. It affects millions of people and causes damage to more than just the person experiencing it. I’ve been on both sides of the stick, and neither of them are fun.