At the age of 22 I woke up on the floor with a semi-circle of faces looking down at me. I couldn’t remember my name or where I lived, but I knew I knew the answers! I was whisked off to the Washington Hospital Center when someone asked me who the president was and I said Nixon…he had been impeached 12 years earlier. I was diagnosed a day or two later and told I shouldn‘t go out alone, partake in any sports, or talk to anyone about having epilepsy because it was so taboo. My driver’s license was also suspended for one year starting that day and I was told I’d have to take medication for the rest of my life.
My reaction was pretty much to do the opposite of what the neurologist told me. I no longer had my driver’s license but I felt that being outside and getting oxygen could only help, so I bought a used bike and started riding the 30km to and from work every day. I did my best to educate people around me on what to do if I had a seizure. My family was a bit worried but they were supportive of what I was doing. Most of my friends were fine; it’s not like I had changed over-night. If I hadn’t told them I had epilepsy, they wouldn’t have known, unless they’d seen me have a seizure.
The biggest issues have been the side effects of medications and finding the right dosage of the right medication for me. Some antiepileptic drugs make you tired, some tap into your folic acid reserves so you have to pay more attention to your nutrition to make sure you don’t end up anaemic.
After winning gold, silver, and bronze medal at the US national road championships in 1990 and qualifying for the US world championship team, I was told that having epilepsy could make me a risk to the team. Hearing those words made me realise that I had had to work harder than others to get to the level I was at. Having dual nationality, I finished the 1990 season in France, won races and was offered a spot on the French national team. The following year I was French road and track Champion, as well as World Champion!
I believe that one day, research will discover what mysteriously caused me to start having seizures at the age of 22, like so many other people who have idiopathic epilepsy. I also believe that huge strides can be made to discover new drug targets that have fewer side effects on people with epilepsy yet help control seizures.
My hope is that very soon we will better understand the brain and how it works. I believe we only understand a given percent of our capacities, so once we get past that and really dig into things like neuroreceptors and transmitters, maybe we can find out more!
Where there’s a will there’s a way! Prepare yourself for the event so you feel confident with the distance and the challenge. If you don’t have time to train long hours, try using virtual training apps such as ZWIFT. If your legs hurt and you feel like giving up, DON’T. Everyone else’s legs will be hurting too! Ride on and think of all the work that needs to be done to help make strides in epilepsy research, such as neurotransmitters, discovering new molecules, gene targets, and so much more. Good luck to everyone taking part – I hope the event is a huge success!
