The Paris Olympics wrapped up last month and while I’m not much of a follower, I tuned in here and there. The gymnasts caught my eye, and I was eager to see how the US basketball team fared, as it included players from Boston, my hometown. But what really grabbed my attention after the hoopla died down was the story about Viktorija Senkute, who has epilepsy and won the rowing bronze medal for Lithuania. The medal was Lithuania’s first in any sport, making Ms. Senkute a national hero, but what resonated loud and clear for me was how she used her Olympic success to elevate epilepsy awareness. “[Epilepsy is] not a limitation at all,” Ms. Senkute said. “People who have epilepsy are normal, regular people and they win Olympic medals.”
Ms. Senkute is far from the only reigning champion with epilepsy. Sprinter, Beth Dobbin is the Scottish record holder for the 200-meter race and represented Great Britain at the Tokyo 2021 Olympics. She’s also a Commonwealth Games bronze medalist, a two-time European Team Championships winner, and in 2022 she secured bronze as part of the women’s 400 meter relay team. Ms. Dobbin has epilepsy and when she had seizures, they significantly impacted her mental health. Her challenges inspired her to become an Epilepsy Ambassador for European epilepsy-focused nonprofits. She spoke openly about her journey in an interview with a women’s health magazine during British National Epilepsy Week: “There are a few charities I’m an ambassador for: Epilepsy Scotland for children and young people, Epilepsy Action and Epilepsy Society. With Epilepsy Scotland for young people, we’re doing a campaign to get mental-health support for every young person diagnosed with epilepsy. If young people have access to mental-health support when they receive their diagnosis, that can prevent [seizures from] coming out years later, like mine did.”
In August 2022, I blogged about Imogen Clark, the 2022 Commonwealth Games’ British silver medalist for the women’s 50 meter breaststroke. Ms. Clark was diagnosed with epilepsy at age 14 after having her first seizure in the pool. The 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 in 2022. Like Ms. Bobbin, Imogen Clark is also an Epilepsy Action Ambassador who chose to use her champion-status to increase epilepsy awareness. She blasts messages of hope to 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.
And let’s not forget American sprinter and Olympic athlete, Florence Joyner, also known as “Flo Jo.” At the 1984 Summer Olympics, Flo Jo won a silver medal in the 200-meter run, and in 1988, she set world records in the 100- and 200-meter events that still stand today. At the 1988 Summer Olympics in Seoul, South Korea, Joyner took home three gold medals and a silver. Ms. Joyner died unexpectedly in 1998, suffocating in her sleep after having an epileptic seizure. Unlike Ms. Bobbin, Imogen Clark, and Viktorija Senkute, Flo Jo Joyner did not speak openly about her health issues, so the public didn’t know about them until an autopsy revealed the cause of her death. Posthumously, Ms. Joyner’s family attorney revealed she had a tonic-clonic seizure in 1990 and had been treated for seizures in 1993 and 1994. Also, after her death, the public learned she had a congenital brain irregularity known as cavernous angioma, a blood vessel abnormality characterized by large, adjacent capillaries, which commonly causes seizures. None of the online information about Ms. Joyner says she had epilepsy, but technically, a patient is diagnosed with epilepsy when they have two unprovoked seizures more than 24 hours apart. Given her history of seizures, including that the autopsy revealed she died of an “epileptic seizure,” a strong case could be made that Ms. Joyner had epilepsy. I also think it’s noteworthy that during a press conference shortly after her death, the sheriff’s spokesman cut off questions about Ms. Joyner’s medical history.
Were Ms. Joyner and her family hiding her epilepsy? We may never know for certain. As somebody who lived with uncontrollable seizures for decades, I understand why Ms. Joyner might want to keep an epilepsy diagnosis off the public radar. Epilepsy has millennia’s worth of stigmas attached to it. Managing others’ reactions to my seizures was fraught with so many challenges—including job insecurity and precarious parenting situations–that I wrote a book about it, Seizing Control. So, it would be totally reasonable for Ms. Joyner to try to hide her epilepsy, especially thirty plus years ago, when people knew less about the condition and the word “neurodiversity” wasn’t part of our lexicon.
Which brings me to the recent super athletes. Not only are Ms. Senkute, Ms. Bobbin, and Ms. Clark totally transparent about their epilepsy, but they are using their platforms as sports stars to educate people. I am always grateful to others who share my mission, especially when they have as wide a reach as these athletic champions have. If enough people speak up, hopefully the future Flo Jo’s and other star figures with epilepsy will feel comfortable enough to embrace it, without letting it define them, as Imogen Clark said.
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