|A very happy Dailey during the running phase of Georgia’s Peachtree City Triathlon last September|
I have Charcot-Marie-Tooth (CMT) disease and when I walk, my feet flop as if they’re asleep. My mother and sister also have CMT, and my mother always has blamed herself that she “cursed” my sister and me with this genetic disorder.
Growing up, my sister and I sometimes hesitated to talk to my mother about some of the things we were going through with CMT, for fear of her breaking down into tears. But because my mother was this way, tiny roots of motivation grew inside of me that one day bloomed into something beautiful that made my mother feel as if her burden was lifted.
A burning motivation
Many people with CMT have a hard time walking — but I wanted to run! It always seemed that jogging or running would never be an option for me.
When I was 17, I went bike riding with my brother-in-law and his friend Sean Harper, who worked for a company specializing in orthotics. Sean told me he could keep my feet from flopping around by using AFOs (ankle-foot orthoses), which are big plastic ankle braces that go up the back of my calves. He made me some AFOs that made walking a lot easier, but running still was way out of the question.
|Dailey running up the beach after completing a triathlon swim|
Instead, I got into racing motorcycles, which didn’t require a whole lot of lower leg function. I took this sport all the way to the semi-pro level, competing all over the East Coast and racing in the Grand National Cross Country series. I had special AFOs made that fit in my boots, stabilizing my foot so I could shift gears and use the foot brake. I did real well in this sport and have the plaques and X-rays from broken bones to prove it!
Despite my success, my mother’s heart still carried the burden of my sister and me not being able to do everyday activities such as running around chasing our kids through the yard. Not to mention, she didn’t like me getting hurt on the motorcycle.
One day I was invited to do a team triathlon (run, bike, swim), with my part being the swim. I thought that this would be perfect since I didn’t have to run, but I hated every second of it. I thought I was going to puke from the fatigue.
But something happened that day. A strong motivation came over me to find a way to move my body faster than a walk. I searched for someone else with CMT who was an athlete, hoping they would know different methods to enable a run or jog. Unfortunately, this search hit a dead end.
My next effort was to study the anatomy and biomechanics of the foot and ankle. I learned from one of Sean’s coworkers, Joe Carder, that if I had the right shape on the bottom of my shoe, that it would somewhat mimic the gait of a normal person
Joe studied my gait to help me devise the perfect rocker shape and foam angle. Revisions were made time and time again due to the odd movements of my particular foot.
A feeling of floating
In June 2007, I made drawings and templates and took them to Sean. We cut off the sole of my shoe and layered in heavy-duty foam rubber, then glued the rubber sole back on.
|The combination of the ankle-foot orthoses strapped to his calves and his personally customized running shoes (note the built-up and rocker-shaped soles) helps Dailey run with a normal gait.|
The last time I’d run was in elementary school, when I raced my best friend Tommy during recess. It had been 19 years since then. I put on my new shoes and it was breathtaking what happened. I ran! I didn’t run as fast as I did against Tommy — but still, I ran! I can’t tell you how emotional it was — the feeling was overwhelming!
I couldn’t wait to tell my mother what I’d accomplished, but I wanted to unveil my success in a storybook, magical way. There was a triathlon coming up in my town three months down the road, the State Sprint Championships. As I trained for this event, sometimes I’d get choked up thinking about crossing the finish line after a 3.2 mile run.
On race day, I woke up at 5:00 a.m. and headed to the venue. I’d told my mother and father I wanted them to come to the event to watch two other relatives who were competing.
When I told my parents that I was racing too, they were in disbelief. They started believing, however, when that horn sounded and 2,000 people hit the water for the swim portion. I had a real good swim and bike, and as I got to the run, my emotions began building, thinking about the finish. I ran the best I could for only three months of training. The last mile was like a slow-motion movie, with people cheering, water flying and a feeling as if I was floating.
The last stretch of the run was set up so spectators could see you coming from a long way off, and people lined that stretch like it was the biggest race in the world. As I came down that final strait, I saw Mom and Dad waiting and my mother crying with happy tears. I truly felt like her burden had been lifted.
I crossed the finish line and RAN to hug my mom and family. I’d accomplished what had once seemed impossible! I’d also won the state championship in the physically challenged division.
I’ve always seen my disorder as a reason to strive and push the odds. Having CMT has made me realize that just having air in my lungs and a heartbeat is plenty enough of a blessing and that grieving over this disorder would be selfish after all I’ve been given. My journey is not about a trophy or beating someone else to the finish line, but about showing others like me that it’s possible to achieve.
My running gait looks normal, but the tall AFOs and 1970s-style tube socks look different. I’m not self conscious at all — I invite questions about my disorder or tall socks! I hope that my story will reach other athletes with CMT or disabilities who, like me, feel that no one else is out there, and let them know we are! My quest for reaching out and motivating will continue and I hope others will get onboard.
There are many people I’d like to thank who’ve motivated me and supported my efforts — my wife and two sons, Sean Harper, Joe Carder, other athletes and the Getting2Tri Foundation, a nonprofit organization dedicated to bringing people with disabilities into the sport of triathlon.
Oh, and one more. Thank you Mom, for giving me this gift, which you thought was a curse. It has made me a more appreciative person, a stronger-minded person and a thankful person for what God has given me. It could be a lot worse!
Shaun Dailey, 30, lives in Senoia, Ga., where he’s a P.E. teacher at Smokey Road Middle School. He invites readers to contact him at email@example.com.