I took the first steps in May 2003. I had decided to do a walking half marathon, but my foot was really sore by the time I crossed the finish line. I thought it was about my shoes - but the woman at the running shop would not sell me shoes. Instead she insisted that I make a doctor’s appointment.
I had my first appointment with an orthopaedic specialist, and by May 2004 I had a diagnosis: Charcot Marie Tooth disease. CMT, the most common neuromuscular disorder, impacts 1 in 2500 people. I am one of that statistical group.
For those of us with CMT, our peripheral nerves do not function correctly – our nerve signals do not transmit properly, our muscles are not stimulated, and the result is muscle atrophy and a loss of sensory and motor function.
It’s scary to be told that you have a progressive, degenerative condition. Especially one whose path and manner of development is unknown.
At first I just ignored that I had anything wrong with me. I enjoyed being active and feeling healthy so I set some new goals for myself. I walked a marathon in 2004. I took up yoga. I began to piece together a healthy lifestyle, including my first meeting with a nutritionist.
But then… Well, you know how it goes. I got busy. I stopped exercising. And slowly, my health started deteriorating.
I may have been ignoring my CMT, but I couldn’t ignore how I felt – which was pretty bad. It was getting tough to walk up my stairs. I thought that if I increased my activity levels to what they used to be, it would help me to feel better. So in 2007 I did my first triathlon. And by 2009 I finally accepted that in order to live life fully, I would need to figure out how to live with CMT. I committed to the triathlon lifestyle, and with it the aim of finding balance between work, sport, and my health.
I’ve learned a lot in the years since – one of my biggest lessons is that with the right attitude, nutrition, and activity levels I have found a way to manage the impact of CMT on my life. Another? To take joy from movement – no matter what speed you move at!
Keep Moving to Keep On Moving
Since 2007 I have completed more than 10 triathlons, and a few single sport endurance events including cycling century rides (100 mile and 100 kilometre distances) and the Great Chesapeake Bay 4.4 mile swim. In 2009 I started running again – for the first time in almost 30 years, doing something many doctors had told me would be impossible. Through sport I have tested, learned, redefined and beaten my limitations – in ways I had never dreamed possible.
In 2012 I participated in the open division waves at the US National Paratriathlon Championships - one of my dreams when I embraced the multisport lifestyle in 2009. It was a great honour to be able to take part in such a high profile event specifically geared for challenged athletes. Despite injury I was able to achieve a new personal best finishing a sprint distance triathlon in less than two hours - a world standard time for a physically challenged athlete.
I am starting off 2013 with a few new complications to manage - my hypermobility from Ehlers Danlos Syndrome and an unusually shaped knee have me reassessing my running future. I am in the process of reaching out to the EDS community to learn more about the ways in which hypermobility and its associated physical manifestations will impact my approach to sport. It may be a new wrinkle, but the process is a familiar one: I’ll be learning a lot, assembling the right team and right approach to managing a chronic condition, and staying ever optimistic through the period of discovery as I map out future directions.
Through endurance sport I have learned how great it feels to live an active and healthy life. I have learned that an active lifestyle eases the way my chronic conditions impact me day-to-day. I am a complete believer in what Bill Bowerman, founder of Nike, famously said:
“If you have a body, you are an athlete.”
A special thanks to the endless support from my family; friends; sponsors 2XU and Motion Junkies; supporter Punk Rock Racing; coaches Kinetic Revolution, Russell Cox, and Red Top Swim; sports therapist Michael Collins (The Magic Hands); my nutritionist Vicki Edgson; and my doctors and physiotherapists at the Institute of Neurology in the UK, Physio in the City, Balance Physiotherapy, and Tatami Health.
On this site I share my thoughts about all aspects of my life - from sport to the kitchen, from what I read in the newspapers to what I read from my doctors. You can read about how I manage my health and well being, and about my approach to fitness and healthy living. You can support the efforts to find a cure for CMT. You can follow my progress as I seek to constantly redefine - and beat - my own limitations. And I hope that you can find a bit of inspiration to do the same.
I aim to keep it real, and welcome you to read, comment and join me in redefining - and beating - limitations.