RA and Athletics
From kids playing a game of soccer in an open field to international events that attract millions of viewers, the range of athletics traverses the globe. An immense variety of games, challenges, skills, events, and races make up the diversity of sports. Aspiration and personal goals capture the hearts and dreams of millions who daily strive to get better, faster, stronger, and more skilled. Athletics is not exclusive to any nationality, culture, language, or region of the Earth. It spans the immensity of human life and time periods.
There is a dark side to athletics as well. Scandals of cheating, doping, and buying off some of the largest and most prestigious competitions leave a sour taste in the mouths of viewers, enthusiasts, and those who aspire to reach the top ranks. Egotism can run rampant, and elitism can divide people into social hierarchies. But these few people do not represent the whole. Most athletes find community, lifelong friendships, a sense of purpose, and a deep meaning for their life in sport. They see the dark side as an unwanted intrusion and destruction of true human passion and achievement.
When I was a young child, I rode my bicycle to and from school every day, and I loved it. It was my favorite part of the morning and afternoon. My friends and I would seek out steep hills on the way home, and shout and holler in exuberance as the ground went flashing by and the wind brushed our faces. In junior high we would build massive jumps in dirt lots, and spend our evenings and weekends filled with adrenaline and excitement as we flew through the air. In high school, we would hop on our mountain bikes the moment the final bell rang, and pedal hard to our local trail, suffer up climbs, and scream down the mountainside in euphoric exhilaration. As an adult, it would be road bikes and mountain bikes everyday, with races almost every weekend throughout the summer.
In 2009 I achieved my goal of becoming a category 1 racer, the highest level of licensed amateur cycling. Since that time I have had the privilege of getting totally worked over while racing against many professionals, and even participated in one of the biggest professional stage races in North America, the Tour of Utah, in both 2009 and 2010. Looking back cycling has always been there, even though it is not the sport I have spent the most time in. Acrobatics and gymnastics have been my soul since I was young, though my ability began to wane years before I was diagnosed with rheumatoid arthritis.
Racing on the road as an adult
When I met with my rheumatologist for the first time with my hands swollen up like giant sausages and my feet howling in sharp pain, I had four questions: What is this? How is it treated? How will it affect my long-term health? And will I still be able to ride my bike? My life had been a living hell for many months before a hand and wrist doctor ran a blood test, and referred me to internal medicine and rheumatology. I remember clearly when my rheumatologist told me to never stop riding my bike, as it would help preserve my joints and keep the inflammation down. That was the only good news I heard that day. I was awash in a sense of profound and heart breaking loss after my diagnosis. Athletics had been my life, and now that defining part of me was threatened. I had also just had my first child. On top of the already hectic reality of caring for a newborn, I had an immense amount of worry for what an incurable and progressive disease would mean for our family life and future.
Having recovered from numerous severe athletic injuries in life, I tried to approach rheumatoid arthritis with the same mentality I had learned from sport. I thought it would just be a matter of resting, recovering, and slowly getting back to where I used to be through patience, good judgment, and hard work. I spent the winter riding my bike indoors, somedays barely managing to pedal for fifteen minutes, and other days feeling close to where I used to be. When race season began in the spring, I was determined to continue, and not let RA take one my greatest passions from me. I showed up at the first local race very uncertain, as I had never felt my health to be so precarious and fragile. I wanted only to start the race, and see what would happen.
Having been at the sport for decades, I still had the tactical savvy and leftover fitness to make up for my very low training miles. As we began to turn the pedals I felt like my old self again, but as the final laps of the race neared, my muscles felt on the verge of spasms, a mental fatigue I was not used to crept in, and my fingers surged into painful cramps and contortions, a phenomenon that began shortly after my first symptoms of RA. I knew right then that my body was a very different machine than it used to be, and that it would never be the same again. Something inside of me snapped as this reality truly set in, and I began to let loose the rage I felt at having RA. I dug in into my pedals, and moved up in the field as we neared the final lap. I pushed myself into a depth of cardiovascular and muscular suffering that I have rarely ever reached in my years of racing. I was angry, deeply angry. As we rounded the final corner, I had tears of rage in my eyes as I sprinted for the line. My friends who knew about my RA hugged me afterwards. They understood why I could not speak, and why my shoulders shook as my chin quivered. It was a small local race, and totally insignificant in the world of cycling, but it was the most meaningful win of my life because it came after RA.
My racing life is currently on hold, because right now it is too much. My white blood cell count is much lower than before, and I am having trouble finding a medication that works and does not have debilitating side effects. I still hop on my mountain bike or road bike when I feel good, and climb high into the canyons, enjoying the solitude and the love I will forever have for pedaling, but many days I can only ride for fifteen minutes or so. Regardless, I am and always will be grateful for any amount of time I can be on my bike.
I know there are many out there who are suffering with RA and athletics is a big part of life. The following are some of my personal challenges I want to share:
Exhaustion: Exercising at the previous level of intensity is often impossible for me. I might start a bike ride exhausted, find some energy at some point, but then find that the energy cannot be sustained. Even when I feel good, workouts and training sessions are hard to recover from, and leave me feeling fatigued in a way I had never experienced before RA.
Soreness, stiffness, muscle cramps: I often find that random muscles and tendons get sore, tight, and hard to move, and often don’t even match the muscular demands of the activity. I cramp much easier than I ever have, and twitches can occur for hours, or wake me up in the night.
Equipment: I have wasted a lot of time and money with specialists and fittings trying to find pain-free footwear. I still have not found reliable solutions. Even when I have no swelling, my feet can still hurt. My fourth and fifth metatarsals have slightly shifted, and now push into the soles of all my shoes.
Planning: Many nights I set out my mountain bike gear for an early morning ride, and wake up stiff, and glued to the bed. The gear sits on the floor, and I battle in my head whether to push through it or go back to sleep. Sometimes I go back to sleep, which is a huge change from my previous lifestyle. It is a difficult decision, as the exercise always makes me feel better, but the sleep does too. Planning ahead for anything that requires a commitment is nearly impossible.
Social: The culture of sport seems to spurn this “toughen up and get through it” attitude. RA has made me tougher than any sport I have ever participated in. But that toughness is played out in getting through painful and difficult days, not on the race course. Only a few of my friends see my struggles and understand why I often cancel, am hesitant to make plans, or show up and have to call it early. I miss frequently being with my community at events, group training, and races.
Mental and emotional: I have always used athletics to regulate my stress levels and moods. When I am tense and strung out, I exercise. When I am sad, I exercise. When I need to get away, I exercise. And when I am frustrated or angry, I exercise. I always feel better after, and it really helps me through hard times. Now with RA, I don’t always have that outlet. Going easy in a workout does not provide the same mental benefits as pushing hard to exhaustion. I need that, and learning to cope without it has been an immense challenge.
As a final thought, I know I am lucky to still be able to engage in sports, that it is likely I will continue to lose the ability to do so over time, and that there are many worse off than I. My hopes for a better tomorrow go out to all who suffer, no matter what walk of life we come from.