Beating Seizures to the Finish Line:
Marion Clignet’s Remarkable Journey
By Jeanne Riether
“Obstacles became a challenge and epilepsy drove me over them.”
Olympic medal-winning cyclist, Marion Clignet
Becoming a world-class athlete requires perseverance, courage, and a rugged determination to overcome difficult odds; Marion Clignet believes that her struggle with epilepsy equipped her with those winning qualities, and turned her into an Olympic medalist.
In her autobiographical book, ‘Tenacious’, Marion describes how facing the challenge of epilepsy shaped her life, transforming her into a world-record-breaking cycling champion and international sports coach.
How limiting is epilepsy? In Marion’s case, rather than limiting her, the idea of living beyond epilepsy motivated her life. Upon hearing her diagnosis, she determined that epilepsy would neither define nor confine her. In fact, she wonders if she ever would have become the elite athlete that she is – breaking the world 3km pursuit cycling record; winning 180 grueling international and national races; taking home medals in both the Atlanta and Sydney Olympic Games – had she not begun to have seizures at 22 years of age.
“I’m really not sure how far I would have pushed myself if I didn’t have epilepsy,” she reflects.
Marion admits that she didn’t know much about epilepsy before her own personal experience with the disorder. Born and raised in the United States to French parents (her father was working as a sociologist at an American university), she majored in physical education during her college years. Her work as a fitness trainer kept her in top physical form; health issues were the farthest thing from her mind in those days.
She was shocked when, for no apparent reason, one day she awoke to find herself on the floor surrounded by ambulance attendants and a crowd of concerned onlookers. “I was rushed to the hospital and all kinds of tests were done,” she recalls. A second seizure followed six weeks later, “and there began my journey with medications, side effects, anger, and more.”
The biggest blow came when her attending physician matter-of-factly related how seizures would alter her life.
“The neurologist who diagnosed me was not very tender,” she relates. “She came into my room and said, ‘You have epilepsy; your driver’s license will be suspended for one year starting today. You shouldn’t talk about having epilepsy to many people, especially not employers and certain friends. Don’t go out alone, don’t do this, don’t do that…”
The counsel she received from her doctor some 25 years ago – suggesting that she hide her epilepsy and lead a sheltered life – is no longer the approach modern specialists recommend. Instead, patients today are encouraged to pursue the goal of living full and normal lives, and to find a treatment regimen that will allow them to do so. Health officials emphasize that epilepsy is not a shameful flaw; rather it is a chronic health condition that should carry no more social stigma than, say, diabetes or asthma.
True to form, from day one Marion has been leading the charge to force epilepsy out of the shadows and into the light. The advice she heard from her doctor that day did not set well with her. “When my neurologist told me my life would have to change, the message I was receiving was, ‘You’re not the Marion you were before this seizure, and you won’t be from now on,’” a message that she found unacceptable.
She rebelled against the idea of hiding her condition. “My reaction was, ‘WHO in the world does this woman think she is?’ I decided right there and then that, if nothing else, I would do just the opposite of what she had said. I would not keep quiet about something I couldn’t control.”
Marion is one of the 50 million people worldwide who daily deal with the challenge of epilepsy. It is the most common neurological condition on the planet. Fortunately, most cases can be controlled with proper medical treatment. Anyone can get epilepsy, and now internationally famous actors, politicians, artists, scientists, writers and athletes – such as Marion – who experience seizures are beginning to speak up about their experiences, in order to help others.
Removing the centuries-old social stigma shrouding epilepsy, however, is a challenge worthy of an Olympian. Ignorance and superstition have caused many to fear the disorder, equating it with insanity or religious judgment. In many societies people who have seizures are shunned, causing them to withdraw from the public lest their “awful secret” be discovered.
Modern science can now explain epilepsy: it is a chronic neurological condition that causes the brain’s normal electrical impulses to become temporarily disrupted. Seizures can be compared to a computer’s shut-down and reboot after a power fluctuation. There are over 40 different types of epilepsy, and many types of seizures. Treatment options include a wide variety of anti-seizure medication; dietary therapy such as the Ketogenic or Modified Atkins Diet that control seizures with high-fat, low carbohydrate foods; and surgical options and implants such as the vagus nerve stimulator (VNS) that works in a similar way to a heart pacemaker, stabilizing electrical impulses from the brain.
Though research has brought about many promising advancements in the treatment of epilepsy, maintaining a normal life-style still proves a challenge for many patients. One of the most drastic consequences Marion faced was losing her driver’s license; she needed a way to get to work and retain control of her life.
In order to maintain her mobility and independence, Marion turned to cycling as her means of transportation. She dusted off her ten-speed bike, put on a helmet, and thus began the ride of her life. In retrospect, the decision seems inspired by fate.
Cycling brought her freedom and rapidly became an all-consuming passion. Never one to do things half-way, she pursued it with all she was worth. She joined cycling clubs, pushed hard to train, and began entering and winning competitions. She gained in speed and skill until, to everyone’s amazement, she made the decision to put aside finishing her studies and pursue her dream of a career as a professional athlete. By 1990 she was racing and winning for the US National Cycling Team.
It hasn’t been an easy ride, however. Discrimination against people with epilepsy can be hard to shake. Marion has first-hand experience with such prejudice; at the time, her opportunity to compete in the Olympic Games was at stake.
Marion was a strong US team member: her history of wins and lightening speed in time trial events made her inclusion on the American women’s cycling team a natural choice. She was shocked, however, when her name did not appear on the list of team members assembled as part of the 1990 World Championship time trial team. When she asked why, she was told that because she had epilepsy she posed a risk for the team.
Marion took the news in characteristic style; instead of quitting, she made use of her dual nationality, moved to France and began racing under the French Flag. She says, “I had the passport, was absolutely passionate about what I was doing, and figured that if I had the will, there was a way for me to live my passion.”
She represented France from 1991 until her retirement from racing in 2004. During her competitive career, Marion – who was feared to be ‘too great a risk’ for the US team – brought France six world titles, held the world pursuit record from 1996 until 2000, and won 2 Olympic silver medals.
Despite such accomplishments making the news, flawed mindsets about epilepsy remain, frustrating patients and physicians alike. Funding for epilepsy treatment and research is often limited due to lack of public interest – epilepsy is not yet considered a ‘popular cause’ supported by flocks of celebrities, as are other health conditions. This is something that Marion seeks to change.
She has served as a spokesperson for the French Epilepsy Research Association since 1999 and has spoken in 13 countries throughout North America, Europe, Asia and Australia, explaining her personal story and campaigning for epilepsy funding. Ongoing research is critical to develop effective treatment for the 30% of people who do not respond to anti-seizure medication or who find the side effects of medication intolerable.
When asked if epilepsy ever interfered with her ability to perform as an athlete, she admits that initially, the side-effects of medication were disabling until she changed her treatment regimen.
“The first meds I was on were no good for me,” she recalls, “I was sleeping 19 hours a day and just couldn’t function.” However, she worked with her doctors to find a more suitable medication that allowed her to continue training. “In the beginning of my career,” she explains, “I had to work around side effects – tiredness, weight swings, mood swings…” She finally found a type and dosage that suited her, and continues with it until this day. She rarely has seizures now, but the times she does remind her of how far she has come.
“Obstacles became a challenge,” she observes about her life as a competitive cyclist, “and epilepsy drove me over them.”
When asked if she had any special advice for young people newly diagnosed with epilepsy, she replied, “My advice is to not let epilepsy change your life plans – if you have the will then there’s always a way to continue on your chosen path.”
Since retiring from racing, Marion has worked as a cycling coach in France and New Zealand, helped promote awareness of the need for epilepsy research, and supported charitable causes such as Africa’s Project Rwanda.
Her travels have taken her to China in 2007 and 2008, and she currently is a Goodwill Ambassador for China’s ‘Healing Young Hearts Epilepsy Awareness Project’, under the Heilongjiang Children’s Center. Marion radiates hope as she explains that the message she wishes most to convey to Chinese people with epilepsy is, “be proud of who you are”.
There is still a lot of work ahead of her: changing a worldview is no small task. As for her part, she actively encourages those facing seizures to courageously chase their dreams and encourage others to do the same. “Everyone has a role to share, teach, and move things forward.” She considers having epilepsy a special opportunity to prove her point.” Such chances in life”, she observes, “are not given to everyone.”
Each of us faces our own personal challenge in the race of life. The events and circumstances may differ, but the courage needed to run the race is the same. May we all cross the finish line with the same winning spirit that Marion has proven, and continues to display, each day of her life.