I no longer play competitive volleyball, or any other sport for that matter. But the inner high-performance athlete is alive and well inside of me, and helps me overcome challenges every minute of every day. Not long after I retired from competitive volleyball, I developed severe rheumatoid arthritis (RA), an autoimmune disease that leads to uncontrolled inflammation and joint swelling, immobility and eventual destruction. From the day I was diagnosed, something inside of me said “don’t stop moving, keep trying to do the things you love”. Little did I know, that perspective is what research would prove years later: high intensity exercise in the setting of moderate to severe rheumatoid arthritis is a good thing, as long as you protect your joints from improper movement or stress, or when they are actively inflamed.
I approach my life with rheumatoid arthritis the exact same way I did my competitive sporting life. Emotionally and spiritually, I can be tougher than the toughest times I face. I may not be able to do half of what I used to physically, but I have finely honed team skills that help me in the community development work I lead. I recognise that overcoming a challenge requires thoughtful planning and work, and then more work, before you can “win”. Nothing came easy for me on the volleyball court, and the same is true in life. I know that is very cliché, but clichés exist for a reason; they’re usually true!
I grew up in a low-income suburb of Long Beach, California, and spent most of my youth at the beach or in a swimming pool. Looking back now, I’m not sure why, as a high school sophomore, I decided to try out for the volleyball team. I played at lunch time during junior high, but nothing organised and certainly not with any learned skill or technique. So when I walked into the gym and scrawled my name on the sign-up sheet, I had no clue what I was doing. A few days later, I was on the Varsity Team playing for the Excelsior High Pilots (Snoopy was our mascot – how great is that?). I’m sure being 6’0” tall at age 14 had something to do with me making the team, as well as having grown up a quintessential tomboy and developing solid throwing and catching skills.
Not long after I made the high school volleyball team, I was selected to the USA Women’s Junior National Team. My high school coach, Jewel McMahon, took myself and a few other girls to the try out. I owe everything to her for recognizing my desire to go “somewhere” through sport. She was kind, nurturing and an amazing role model for a young girl like myself.
The assistant coach of the Junior National Team, Robert Buck, was the first one who told me “I could”, and I never forgot his belief in me: I started to believe in myself because he did. The first summer of training with Rob he asked us to sit down and make a list of goals to work towards. I wrote down one: “Win an Olympic Gold Medal”. The following year, I was on the senior national team, one step closer to that goal, until there was a small setback: the US would choose to boycott the upcoming Olympics in Moscow. So, off I went to university with the thought that I would go back to the team and push towards the 1984 Olympics which was taking place in my own home town! But it wasn’t meant to be. I enjoyed university and learned that for me, I’d already won a medal, but it wasn’t an Olympic gold medal. I won an incredible athletic and personal journey with dedicated coaches and fellow players that shaped me into the person I became in university, and remain today.
“When I was playing competitive volleyball, I was so incredibly hard on myself. Unless I executed the skill or play perfectly, I was disappointed in myself. But because of my disease, all of that brutal self-criticism fell away. I just go with my body’s flow now because what I can and cannot do changes practically every day.”
An important contributing factor in my sport journey was the desire to be somewhere other than at home; a place that was filled with family struggles. The gym became a place of refuge, physically and emotionally. I would spend as much time there as possible, often returning home close to midnight. Volleyball became a life vehicle for me, and at such a young age. It was really a tool to take me from one reality to another of my choosing.
One of the profound joys of competitive sport, especially team sport, is the bond formed between you and your teammates. A second family. I haven’t seen most of the people I played with for 20+ years, yet when we connect by email or through social media, it seems like only yesterday we were bent over sucking air in the gym, complaining about the seemingly endless sprints or weight training routines. That common experience lasts a lifetime. It is a huge vein that runs through my life and is forever part of who Cheryl Koehn is. No one can take it away; it’s all mine. I like that. A lot.
I learned through years of competitive volleyball, and now cycling, that no matter how physically spent you are, you can turn the pedals one more time; go one more kilometre. I apply “yes, you can” to everything in my life and in my work in the arthritis community. There is crazy power in the word “yes”. It holds the promise of success, even if getting to “yes” is fraught with challenges – and it usually is. People’s eyes light up and their mood lifts when they hear the word “yes”. I obviously use it a lot.
When you have an autoimmune disease that can steal your physical ability to walk, sleep or work, you simply feel lucky to be sitting on a spin bike, crawling your way down a swim lane, or walking with your dog. When I started spinning at Method in Kits, it seemed inconceivable to me that I would or could ride from Sumas, Washington, up Mount Baker, and back to Bob’s Burgers, let alone up the hill at UBC. Figuring out the physical workload formula when you have a disease like rheumatoid arthritis is difficult. If you push too hard or too little, you can send your disease (and life) into a tail spin.
Learning to manage my, and my friends’, expectations is still a challenge. Because of the waxing and waning nature of rheumatoid arthritis, something that was achievable today may not be next week or next month. For a person who just rode up Mount Baker with you, that’s sometimes hard to understand, and next to impossible to relate to. I spend a lot of time telling people from day-to-day “I can’t”, or “not today”, which can drag you and your relationships down if you let it. But I’ve learned how to do just that, and successfully. That makes me happy.
My next “race” is in Maui, with the NTSQ Velo team. Committing to their 5-day, 4-night retreat inspired me to try to go on longer, tougher rides, as I know we will ride between 70-100 kilometres each day. I want to be able to “finish”, and now I have the confidence to do it having ridden 145 kilometres just last weekend.
“I’m so proud I played sport at the level I did, but that’s not at all what I hold dear in my life today. It’s the friendships, the scars, the places, the highs and lows of training, that’s the fabric of my life today. Those things are a wellspring of experience resources upon which I draw to live my life to the fullest.”
When I developed rheumatoid arthritis, I was 27 years old and felt like I was the only person in the world who had it. I knew nothing about the disease and didn’t know anyone else who had it. Not long after my diagnosis, I started to volunteer in the community and was appointed to the board of a large arthritis health charity. I learned more about the community and felt there was a need for a grassroots organization that was led by people living with arthritis – a place to gather in person and online that felt like “home” to people like me. Arthritis Consumer Experts (ACE), the organization I founded 18 years ago, became that place.
Today, ACE has 17,000 members and subscribers from coast-to-coast and is Canada’s largest, longest running arthritis consumer-patient organization. We are leaders in patient participation in arthritis research, education and information programming and advocacy. Importantly, we are a trusted voice at government and in policy making processes because we are “by, for and with” people with arthritis.
I’m so proud of the people I work and volunteer with and all that they do for people with arthritis in Canada. We change and save lives every day, all day. One thing is certain; I no longer think I’m alone in the world. There are millions of people like me around the world. I now think I joined the biggest team on the planet!