Advocate Alan C. teams up in the doctor’s office and on the basketball court to face his seizures head on
Diagnosed with epilepsy at age 13
“No matter how tough you are, you need to reach out and get the right people on your team.”
I’m from Arkansas—a stubborn Razorback. I’ve got that independent streak. But that doesn’t mean I go it alone. All my life, I’ve found partners to help me be at my best, living with epilepsy.
The first were my parents. Back in the early ‘60s, when I was diagnosed, no one in my world understood a thing about epilepsy. They couldn’t even spell it. But my parents learned about it, and gave me the choice: “Do you want to take it easy, or take it head on?” I chose to take it head on. They were there to support me every step of the way.
In high school, it was teachers and coaches. I played center on the basketball team. My coach would see me wandering around the court, and he would know I was having a partial-onset seizure. He would keep asking me questions until I started to answer him back.
Then it was my wife, who has been the biggest ally of my life. We’ve been married for 25 years—she took me epilepsy and all. She can tell in an instant when I’m going to have a seizure. I still have complex partial seizures, and she knows what to watch for, and how to talk me through that.
My doctors have also been allies. I’ve probably seen more than 12 neurologists in my lifetime. Sometimes the fit is okay. Sometimes it’s not. You’ve got to make sure you both stay on the same page, because your doctor is your best hope for staying one step ahead of your seizures.
The neurologist I call my lifesaver is the one who listened to my story and my treatment goals. It took us a few years, but we got there.
I’ve been very lucky in my life. And I learned early on that no matter how tough you are, you need to reach out and get the right people on your team.