I've spoken about my epilepsy publicly, in many arenas, across the country. I’ve attended several conventions and been invited to camps, schools, and universities relating to athletes, children, parents...
The story I tell goes sort of like this.
I was diagnosed with Epilepsy after having petit mal (absence) seizures. They progressed to grand mal (generalized tonic-clonic) seizures and were under control with treatment for almost 14 years. One day, without warning, they came back, and I've struggled a little bit ever since. Every 3 months or so. Anytime I'm up a little too late. Or if, God forbid, I forget my medicine.
It is scary, inconvenient, and embarrassing, but the moral of the story is always that I keep going and, in between seizures, I do great. I consider myself happy and successful. I'm very healthy. I follow a low glycemic index diet as part of my treatment, exercise regularly,...
Knowing About SUDEP vs Understanding My Risk
Because of my involvement with Athletes vs Epilepsy, I am well informed when it comes to what SUDEP (sudden unexpected death in epilepsy) is. I've heard devastating stories of losing loved ones. To me, stories of people passing in their 40s are just as horrible as losing a 4 year old. But it was never something that could happen to ME.
I am not at risk. I went 14 years without a single seizure. And, like I said, in between seizures, for the 2 months and 29 days in between, I am energetic and strong. I even get sick less than most people. I'm not old enough; I'm not young enough. I have no co-morbidity (unless ADHD counts). Nobody ever officially mentioned SUDEP to me in regards to me and MY risk.
The first time it hit home I was on a trip to New York and had forgotten my medication. I felt silly and embarrassed to have made such an irresponsible mistake. Luckily there is a neurologist I see irregularly, and I made the call of shame.
Actually, I think it was an email of shame. I couldn't bring myself to call.
Very seriously, I waited to speak to him in person. He looked right into my face and said, "I just lost a patient. A long-time patient of about 30 years. You need to take this seriously. Don't miss a dose because you are afraid to ask."
All of a sudden, the 1 in 150 people with uncontrolled seizures who die from SUDEP each year became real. People who haven't had seizures in 3 years succumb to SUDEP.
Dare to Know Your Risk and Take Action
I am so glad I had that conversation, and I know what I am facing. I am not sure how it has changed my life, but it has changed my perspective. Epilepsy went from "a thing I sort of have" to a real condition I acknowledge every day. I make a plan for everything, and I really talk about it to people. Friends and teachers and coworkers. It is something real, and I've made knowledge a power.
The moral of the story is still that I keep on going. I continue to try to get my seizures under control and, in between, be the happy, healthy, successful person I was before I knew I was at risk for SUDEP. I am still a happy and healthy and a (sometimes too) energetic woman. I still hate to do laundry and for some reason stopping to get gas is one of my least favorite tasks. I love to run on one of those first few spring days when it starts to get warm. I listen to Brandi Carlile on repeat, and I look forward to coaching a mite hockey team this fall.
Something else that has really fueled me to live an unstoppable life is being involved in Athletes vs Epilepsy. AvE really illustrates my strengths and doesn't let me focus on obstacles or wallow in fear. It’s a great stage for anybody to stand up, be strong, spread awareness word, find confidence in yourself, and encourage others to keep on going. #DareTo be an Athlete vs Epilepsy. Sign up for a signature event, choose your own event, or create a do-it-yourself event. Find out more at athletesvsepilepsy.com.
Authored by Chanda Gunn, Olympic Ice Hockey Medalist and Athletes vs Epilepsy Ambassador
