Against All Odds

How an epilepsy diagnosis inspired Evanston native Marion Glignet to bicycle her way to the Olympics – and blaze the trail against disability stereotypes.

by Nancy Maes
NorthShore Magazine, May 2007

Growing up in Evanston, Marion Clignet was a rebel without a raison d'être. She was, after all, the daughter of French intellectuals (the Clignet family emigrated to the U.S. in the early 1960s). Her father taught sociology and African studies at Northwestern University; her mother was on the path to becoming a well-recognized artist. Making matters worse was her older, French-born sister — both well-behaved and a good student.

But Clignet, the only member of the family born in the U.S., was none of those things. She was unruly, a tomboy. School? Never a priority with Marion. In fact, she felt so strongly that she didn't really belong in her family that she concluded (wrongly, of course) that she surely must have been adopted. Needless to say, this first-generation American rebel was equally strong-willed in her determination to find her own niche.

That personality trait — which some saw as a fault — turned out to be one of her biggest assets. Someday, it would catapult her to the podium of the Olympic Games in spite of what most people considered insurmountable obstacles.

But perhaps the real story is what comes in between. Marion Clignet had finished her freshman year at Evanston Township High School when her father accepted a job at the University of Maryland. Naturally, she tried to sabotage the move east by removing the "For Sale" sign from the lawn of their home, time after time, but to no avail. The family moved, and she moved with them, eventually enrolling at the University of Maryland. As the story goes, she bought a junk heap of a bike to get around, put a down payment on a better one and became a bike messenger to pay for the installments.

Then, during an ordinary trip to a bike shop, Clignet had an experience that would change her life.

Clignet spun around and fell to the floor and her body started jerking uncontrollably (or so she was told by someone who watched the horror unfold). After several days of tests in a hospital, a neurologist told her she had had an epileptic seizure. She would have more. And she would have to take medication for the rest of her life to control them.

Then the doctor made a recommendation even more disturbing than the diagnosis. She was cautioned to keep her disorder a secret because it carried a stigma. Little did the neurologist know that you can't tell Clignet what she can and can't do.

"I was angry because the doctors were telling me that I was handicapped and that I shouldn't go out alone and I shouldn't even ride my bike, so it felt like either I had to be completely dependent on other people or I could go my merry way and follow my gut feeling and live a normal, happy life," Clignet recalls. "I've always believed that if you have the will, there's a way."

That belief was about to be tested. Because of Clignet's diagnosis, the state of Maryland took away her driver's license. Her bike became her only means of transportation, her only way to earn a living. Some people would have given up. But it was this series of events that sparked a passion in Marion Clignet and gave our rebel a cause.

Quickly it became clear — she was born to be a competitive cyclist. At age 22, she was getting a late start, but she had the willpower, the horsepower and the hunger to win. She just needed to learn the techniques.

With a few credits short of graduating, she dropped out of college to pursue cycling (which was, of course, against any French intellectual parents' wishes). Not only did they think that cycling was risky business for someone with epilepsy, but they didn't believe it was a valid way to make a living.

But Clignet would have it her way even if it meant living from hand to mouth. She worked part time in a fitness center and just barely made ends meet. She joined a bike club and started training, even as she continued to have seizures. Sometimes it was because she tried to cut back on her medications in hopes she would be OK without them, sometimes because she simply forgot to take them and other times because she was stressed and not getting enough sleep. She called the seizures "face plants" because when she had one while riding her bike (during training rides, but fortunately never during races) she fell headfirst. She came away with a broken tooth, a concussion, black eyes or cuts that needed stitches.

In 1989, just four years after taking up cycling, Marion won three medals at the U.S. national championships. She felt she had earned a spot on the national team and the chance to compete in the world championships, but it wasn't to be. Marion assumed her coach knew she had epilepsy because she had been doing TV shows as a spokeswoman for the Epilepsy Foundation of America. She was wrong. In fact, he was so surprised and frightened when he saw her have a seizure that he was unwilling to take the risk of naming her to the team.

She shrugged off the slight, packed her French passport and flew to France. While she had always felt like a foreigner in her French family, ironically she found a sense of belonging in their native land. To push herself, she trained with the top male cyclists in the country. Her goals became more ambitious. In addition to road races, she started doing individual pursuits where she whizzed around a track with her head down, legs pumping as though shot out of a canon. In 1991, she won 28 races, the French national road title, the French national pursuit title and the world medal in the time-trial championships.

Not ready to rest on her laurels, Marion Clignet set her sights on the Olympic Games. In Atlanta in 1996 (a year when she was averaging a seizure a month), our American-born heroine stood on the podium with a silver medal — for France. Her disappointment in not getting the gold was quickly replaced with a sense of accomplishment because she realized she had proved to people with epilepsy that the disorder didn't have to be a handicap. And she proved the point again with a silver medal at the Olympic Games in Sydney, Australia.

Clignet, who makes her home near Toulouse, France, did eventually gain her parents' support. In fact she credits them with instilling in her the work ethic and the strong sense of social justice that has motivated her efforts to improve the working conditions of French female athletes. She travels the world to advise doctors on how to improve their relationships with patients who have epilepsy and tells her story to people who have the disorder. Many of them ask how the side effects of her epilepsy medication affect her life as an athlete. The current one, which is effective at preventing seizures, makes her sleepy. "There are times when if it were up to me I would stay in bed all day, and I have to force myself to get my sorry ass out the door," she explains. "It's a battle because you don't always feel 100 percent, so I get into a little wrestling match with myself."

But her passion to excel always prevails. Although she has retired from competitive cycling, at age 42 she's currently training to run in the Chicago marathon. Let the other runners be forewarned — and let the people with epilepsy be inspired.

Clignet's autobiography, Tenacious, written with Benjamin C. Hovey, is available in English or French. It can be ordered from the Expansion Scientifique Française 2005, 15 Rue Saint- Benoît, 75278, Paris Cedex 06, France. The cost is 10 Euros (approximately $13.50). All proceeds benefit epilepsy research.