I happened to be in England last month during the Commonwealth Games, a multi-nation multi-sports competition similar to the Olympics. I watched the opening ceremonies on television with my English friends: Participants paraded across the screen with their flags and garb, music festively playing in the background. I’m not a big sports fan, so I tuned out after the celebratory overture. While web-surfing the next day, I learned the swimmer who won England a silver medal for the Women’s 50-meter Breaststroke competition has epilepsy, a condition I’ve had since age six. Now I was hooked.
Imogen Clark was diagnosed with photosensitive epilepsy when she was 14, after having her first seizure in the pool. This incident prompted her doctors and mother to suggest she put the kibosh on her swimming ambitions. Ms. Clark ignored their warnings, followed her dreams, and went on to win two silver medals, one in 2018, and one on July 30, 2022. What a badass!
In addition to being a silver-medalist, Imogen Clark is an Epilepsy Ambassador at the U.K.-based organization, Epilepsy Action (Epilepsy Action | Epilepsy information and advice). Their website has an interview with her that includes this message for those with epilepsy: Epilepsy is our normal – we can’t change it so embrace it. Epilepsy is a part of us, but don’t let it define you! Tell yourself you have it until you’re comfortable with it…. Once you’re okay with [that] fact you can move on, and work toward your own dreams. [Epilepsy] shouldn’t stop you from trying. Everyone is fearful but not everyone can convert their fear …into courage. While Ms. Clark’s message is for those with epilepsy, it applies to anybody with a chronic health condition. None of us wants to be defined by our illnesses.
Ms. Clark’s defiance in the face of epilepsy-related risks resonated loudly with me. I’d taken many of those when I had uncontrollable seizures including bike riding in Boston, traveling internationally, and raising kids. None of these is medal-worthy, but they were things I felt I had to do, despite the intrinsic risks. Having epilepsy taught me to take certain precautions, like getting off my bicycle when I felt a seizure coming on and waiting for it to pass. I knew I would be okay at the other end of it. Epilepsy also taught me about the grit required to buck others’ fears and judgements. I bristled with anger when family members said my epilepsy made it too risky for me to be a parent or ride my bicycle. Like Ms. Clark, I ignored their opinions. Ms. Clark wore a bright pink swim cap, so she could be easily identified if a seizure occurred in the pool and asked that photojournalists refrain from using flash cameras. She became a Commonwealth Games silver medalist – good thing she didn’t listen to her doctor and family.
By the time I was six, I knew I wanted to be a parent someday. I have a beautiful 15-year-old son and 13-year-old daughter. Raising them while managing seizures was complicated, and occasionally chancy. I wore a medical ID bracelet and kept a tag on the stroller explaining my condition. There was still an inherent risk, but like Ms. Clark’s pink swim cap, these safety measures enabled me to pursue my dreams despite my epilepsy. I know I made the right choice, based on the joy, pride, and contentment I feel from parenting them. Eventually the epilepsy-related challenges also gave me the courage and incentive to try elective brain surgery as a treatment. I was finally able to put a stop to my seizures after undergoing two brain surgeries in 2014. The procedures were difficult, and my recovery was over a year long. But the complex journey was worth the trip. I no longer worry about epilepsy impacting my kids’ safety.
Even after my seizures stopped, some family members discouraged me from getting a driver’s license. They worried my seizures might recur while I was behind the wheel. I knew the suggestion came from a place of concern, but it ticked me off. I was seizure-free, and they were still defining my limits based on my epilepsy! Although I hadn’t seen Imogen Clark’s message yet, I knew it intuitively. I ignored my family’s advice, and I’ve been driving seizure-free for five plus years.
I’m posting this piece in hopes of spreading Ms. Clark’s message to people with epilepsy, other chronic illnesses, and their caregivers/loved ones. Don’t let medical conditions define who you are or what you can do. Convert fears – yours and those around you – into courage and pursue your passions. The journey will take you down your own personal aspiration path. Perhaps it will lead to a silver medal.