If I won the lottery next week you’d find me on a bicycle riding across the Mongolian Steppes. Traveling and cycling are what I call my life addictions. No matter what my age or stage in life, exploring the world and riding my bike has been my constant focus. So far, I’ve been very lucky with both, despite what some would call “extra life challenges.”
I've traveled all over North America and Europe. I have an Ironman and five years of competitive road racing under my belt with absolutely no intention of slowing down. I couldn't imagine a version of myself that didn't ride. Out on a bike ride is the only time I can forget about my medical challenges and just relax. I can find more peace in the middle of a furious road race then sitting on my couch at home. Plus, there’s something affirming and rebellious about a long bike ride, out on the road is where I leave the doctor’s office behind.
I would define my illness as generalized aggressive autoimmune disease. However, my medicals records show the following: diagnosed with Crohn's disease (years later changed to ulcerative colitis) in 2006, diagnosed with Primary Scolosising Colongitis in 2015, ileostomy surgery in January 2015, diagnosed with Type 1 Diabetes in August, 2015 and lastly diagnosed as Celiac in April, 2016. Although I'm faced with multiple illnesses, the real battle has always been with ulcerative colitis. And looking back, I now realize how badly the disease affected my life. All those days spent in pain, in bed, in hospital, they all add up to a heavy cost. There where whole years of my life where I just tried to survive when I should have been accomplishing something.
Even though I did survive those hard years, I couldn't help but feel it was lost time that I would never get back. Those thoughts fed into a growing mental battle that possibly took the greatest toll on me, more than the actual illness. I spent a lot of time battling depression and there were many moments when I doubted I could have a good life, a life that wasn’t defined by my illness.
As a 16-year-old kid, I couldn’t imagine anything worse than having an ostomy.
When I was diagnosed 11 years ago, I swore I would never choose to have my colon removed — no matter what. Time however can change everything, and each year that past it became harder to keep the ulcerative colitis under control. I had some great periods when I was healthy, when I could accomplish great things because the disease was subdued. However, the overall trend was unmistakable, with every passing year the flare-ups became more frequent and violent. Regardless of my original feelings towards surgery, after 10 years of battling ulcerative colitis I was willing to consider anything.
I have a huge amount of empathy for all the people who lead normal lives until suddenly they become severely ill, and weeks later are going in for ostomy surgery. I honestly don’t know how I would’ve handled such a sudden and dramatic lifestyle change. In my case it was two years of constant pain, anxiety and distress that left me desperate for relief, even if it meant facing my ostomy fears. So in the end, the decision I'd always thought would be the hardest turned out to be no decision at all. Instead of being the end of my life, an ostomy became my only real hope of getting my life back.
After surgery, those first two weeks of recovery were a real battle. The awkwardness of such a big lifestyle change, coupled with the discomfort of healing is a lot to handle on your own. Luckily, I was surrounded by friends and family who got me through it all in one piece.
I knew I had to get on with life as soon as possible, and that meant getting back on my bike.
I was really fearful of what could go wrong while riding, would the bag become unstuck from sweat? What if I crashed and damaged my ostomy? In the past I'd been in some major race crashes, the worst of which required some major surgery. If I could break bones going down hard, what would happen to my ostomy? I was voicing these fears to a veteran ostomate friend and she recommended I contact Stealth Belt. Until then I'd never heard of ostomy support belts and when I read about their impact guard I got very excited. Wearing that belt gave me an added sense of security and confidence that I needed to start riding again. Two years later, I still have the original belt, and whenever I line up for a race I've got it on.
Looking back on these past few years, I couldn't be happier with how everything turned out. Since that first painful ride after surgery in January, 2015, I've ridden more than 14,000 kilometers. If I was actually out their riding across the world I would’ve passed through Mongolia months ago! All that riding also included a very competitive race season where I finished the summer 8th overall in Ontario and received my upgrade to the elite category. There was no greater validation of my ostomy then racing this summer against athletes without “extra life challenges” and finishing as one of the top riders.
My fight with autoimmunity has shaped me into the person I am today.
While my illness does not define me, it is part of me and I can unhesitatingly say it has done me a world of good. It's given me the proper perspective on life and the drive to make the most of every good day. My success in competitive cycling this year has moved me into a category of bigger fields and stronger opponents. There's a say in racing, “It never gets easier, you just get faster.” It's daunting and a bit terrifying to be up against some of the very best competitors, but I'm ready to give it my best shot!
Chronic illness often feels like a never-ending fight and there’s always another battle on the horizon, but I know I can get through the hard times thanks to the amazing people that support me every day. Regardless of what happens, I will keep moving forward because I want to prove to myself and others that your life is defined by goals and aspirations, not a diagnosis.