By the time I was diagnosed with polyarticular juvenile rheumatoid arthritis at 13 months old, my arms were already contracted, and I’ve never been able to fully straighten them. I barely have cartilage in my ankles—it’s bone on bone. My left ankle hurts pretty much all the time. Sometimes it feels as if my tibia has been replaced by a knife, and every time I step down, it jabs into my ankle. I generally can’t stand for more than a half-hour without difficulty.
In January of 2006, both of my grandmothers passed away in the same week. I thought, I gotta do something big with this life. I happened to be on the Arthritis Foundation website and saw an ad for the eight-day, 525-mile California Coast Classic. I was intrigued. I knew I wanted to try a big event, and although walking is painful, riding a bike is less stressful for my joints.
I got a hybrid bike and rode a half-mile loop near my house in Virginia about a thousand times because I wasn’t comfortable on the road. I showed up in San Francisco with a bunch of T-shirts and my heavy bike. It was way harder than I thought. The first day, I made it about 50 miles. I didn’t finish the next day either. Then I started to figure out pacing and nutrition, and finished all but one of the remaining days.
I’ve come back every year since—and it’s changed my life. I feel strong, and I love the idea that I can do something not everyone can do. Riding up a hill, when I’m going at my own pace and I’m just focused on my breathing and my pedal stroke, my mind is clear. I love climbing—it’s a better position for my body, and my arms are already contracted. This July, I’m planning a Trek Travel trip in France to do the climbs of the Tour, including Mont Ventoux.
I love talking to parents whose kids have arthritis. I can show them what’s possible. Some people have said, “Wow, you ride in pain.” I’m not saying it’s not hard. But riding eight days is hard for everybody. I try not to be overly dramatic about myself. The people I meet who were diagnosed later in life, they have lost more. Sure, it’s a struggle some days, but I do everything I can to stay healthy. Cycling allows me to do more than just read and watch Netflix. I always feel better after a bike ride. Doesn’t everybody?