Christy Williams is the picture of health. Tall, blond, and lean, she looks as fit as anyone on the trails at XTERRA Beaver Creek.
You would never guess that 15 years ago, she was in a wheelchair, unable to walk up the stairs, much less swim 1500 meters, climb hills on her mountain bike, and run a 10k through the woods.
Williams has ankylosing spondylitis (AS), an autoimmune disease that causes chronic inflammation of the spine, as well as all of the connective tissue in the body, including joints, kidneys, eyes, and even the heart. The outcome for many AS patients is complete spinal fusion, or ankylosis.
Williams became sick shortly after the birth of her first child when she was only 24 years old.
“I was frozen in my body two days after the birth of my daughter,” said Williams. “I could barely move, I couldn’t eat, and I had a fever that wouldn’t go away.”
Eventually, her body degenerated to the point where she couldn’t walk, and her husband had to carry her up the stairs in their home. Outside the house, she used a wheelchair.
It took a long time to diagnose Williams because despite her symptoms, her blood work was normal. After finally diagnosing Williams with AS, doctors tried many different drugs – each for three to six month periods – to see which one would work.
Six years after getting sick, Williams was being treated with Methotrexate – a form of chemotherapy that suppresses the immune system – when a new drug called Remicade was being used in clinical trials.
Biologics, like Remicade, are not a chemical but a protein. Williams goes into the hospital every four weeks for a three-hour IV treatment that brings her to near remission. However, she still suffers from chronic fatigue, low blood pressure, and a very weak immune system.
Ironically, another way to fight AS is to exercise. So Williams walks the delicate balance of moving her joints and connective tissue but avoiding overtraining, which can further tax her weak immune system.
“My doctor is always telling me, ‘Do not crash your bike. Do not get sick. Do not get a cut.’ I’m tested for TB on a regular basis, because my body can’t really fight infection.”
Still, Williams views Remicade and triathlon as the best gifts for getting healthy.
“Signing up for races, putting something on the calendar, it gets you motivated right?” said Williams. “When you have a disease, if you are having a bad day and your body is revolting, you still realize, ‘No I gotta go, because if I don’t move, I’ll feel worse.'”
Williams admits that she is both blessed and cursed by the genetic lottery.
“I have some athletic gifts and I also have this huge weight on my back. I see it as a welcome challenge – who is going to win? Am I going to let the disease be stronger than me or am I going to be stronger than the disease? That’s the competition in my mind.”
In 2011, when Remicade showed promise, Williams was still in a wheelchair. But she made a goal of competing in an Ironman triathlon.
“I used triathlon because growing up as an athlete, I knew how to use my body,” said Williams. “I knew I could rehab myself back because I knew how to start small and get strong.”
It took Williams four years, but in 2015, she competed in Ironman Boulder.
Shortly afterwards, Williams met the founder of The 2xtreme Foundation, John Davis – also a challenged athlete.
“We were both working out with the same tri group, and John was swimming with Susan, who is an Olympic bronze medal winner, my coach, and a good friend,” explained Williams. “Then, at the wall, I could tell he was in a lot of pain. I asked if he was OK and he explained that he has motor neuron disease. I said, ‘Hey, I have a chronic disease too!’ We kind of had a little moment there.”
Williams explained that she met Davis at a crucial point.
“I was feeling really lonely at the time,” she said. “The road is long, the diagnosis is hard to accept, and the treatment is tough. I remember praying – please send me one person who knows what I’m going through. Then I met John.”
As a way of paying it forward, Williams wants to let others with chronic diseases know that they aren’t alone. She also wants to shatter some of the stereotypes surrounding challenged athletes.
“It’s easy to think a physically challenged athlete looks a certain way and I want to say – No – there are so many people who suffer from degenerative diseases that you don’t see,” said Williams. “The other end of the stereotype is that because you’re a challenged athlete, you should only be a finisher. A participant. No. You can also be fast.”
Williams acknowledges that she is passionate about her sport because she is working on borrowed time. That’s why she has been driving so hard. Last month, she won the physically challenged division of XTERRA Beaver Creek and she is going on to race at the XTERRA Pan Am Championships in Utah next month.
“Right now, my symptoms are under control but I’m still degenerating. My spine is fusing and there are things going on that aren’t going to stop. I am taking advantage of the time I’m given because of this medicine, but my doctor reminds me that the medicine could stop working at any time.”
Williams credits the trails and the healing power of nature with keeping her spirits up.
“The fear of regret, the fear of not having lived the life I wanted for myself and my family is what drives me,” said Williams. “When the medicine stops working and I’m back in that dark place again, I want to be able to say, ‘I wore it out. I did it all. I have no regrets. I took that time I had and I crushed it.’ Then I can rest a little bit at peace knowing I didn’t pass anything up.”