I'm an endurance athlete with epilepsy. We exist! I've been an active soul my entire life. When I was diagnosed with epilepsy in 2007, I did my absolute best to keep participating in the endurance sports I love. I have complex partial seizures and take medications to control my seizures. My days require so much effort on many levels.
People are curious when they find out I'm training and competing. They ask, "Aren't you afraid of having a seizure while you're out there?" I'm aware, but not afraid, of the possibility that I could have a seizure when I'm pushing my body like this. In no part of our life can we completely eliminate risk. The best we can do is figure out how to minimize it.
In order to minimize risk, I have had to learn to ask for help. In a sport as independent as triathlon, I will always need to have a crew of support while I am training and competing. It's awesome to have people cheering for me when I'm competing, but it's important to have people who know me well stationed throughout the course. They can recognize the difference between what I look like when I'm working hard and what I look like when I need help.
In October 2014, I was competing in the Toronto Waterfront Marathon. Around 30km into the 42km event, I had an aura and I knew I was going to have a seizure. Thanks to excellent planning and my amazing family, I was able to safely have a seizure. I did not finish that race but I have learned from it. In those moments, I give my family, friends and doctors the right to make that decision whether or not I continue a race if they feel it is unsafe for me to compete. Sometimes we get so ambitious with our athletic goals and we ask so much of our bodies that we forget to slow down and give our bodies the kindness they deserve.
The main side effects of my seizure medications are fatigue and lethargy. Every time I am able to get myself out the door to train or compete is a podium achievement. It takes special attention for me to figure out if I am feeling normal seizure medication fatigue or training-related fatigue that requires me to skip the workout because it could increase my risk of a seizure. It is such a fine balance.
Last summer I competed in my first half Ironman triathlon. It was only my third triathlon since being diagnosed with epilepsy. I wanted to be as safe as possible and make the event as fun as possible.
I got in touch with the race organizers to make them aware of my medical condition. All of the medical team was made aware that I had epilepsy and they checked in with me throughout the course.
The swim was a 2km swim in open water. I got advice on where to start, and I made sure to keep a kayak in sight at all times. I stayed on the inside of the swim course so that I could get out of the crowd of swimmers and float on my back if I felt at all as if I was going to have a seizure. The swim to bike transition seemed to go well until 5km into the bike I realized that I had forgotten my seizure medications and my energy gels in the transition zone. I considered turning around and going back to the transition zone. I opted not to, which was a risk I should not have taken.
I made it safely through the bike course and took my medications in the transition zone between the bike and the run. The transition zone is a curious place. Transitioning in triathlon is often a sport of "How fast can I get in and out of here without forgetting anything?" I have found that the transition zone needs to be a time to slow down and listen to what my body needs, just like in the rest of life. During the bike-to-run transition I needed to sit, take my medications and ask myself "Am I OK?" I was foggy for the first kilometres of the run because the seizure medications make me feel lethargic. "Am I OK?" I kept asking myself as the kilometre markers went by. The answer was "yes?" I placed fourth in my age group and was the 25th woman to finish!
It comes down to, "Do I enjoy doing this enough to take the risk of hurting myself, and what can I do to reduce the risk?" For me, the benefits outweigh the risk.
I will never race hard enough that I will cross the finish line and collapse, but I will race hard enough to raise awareness for athletes living with epilepsy. Together my support network, epilepsy and I can work together in this life to achieve great things.
By Glenna Fraumeni. Glenna is an endurance athlete and Registered Nurse with epilepsy who is living and loving life in Toronto.