Considering what it takes to be a bodybuilder with CMT

John Nixon, like me, has Charcot-Marie-Tooth disease (CMT). Based on how he tells his story, the CMT symptoms he’s dealt with since childhood are more severe than mine. When we spoke a couple of weeks ago via video chat, he told me that his feet have been deformed since he was 3 years old, preventing him from being able to run. And he always hated walking ahead of others at school because students would poke fun at his gait.

Yet today, at age 43, Nixon participates in an activity I frankly didn’t think was possible for someone with CMT.

He’s a bodybuilder.

Now, I’ve never doubted that it’s possible for CMTers to build muscle. I’ve been going to the gym fairly regularly over the past couple of years and have definitely gotten physically stronger. I’ve also spoken to several high-performing athletes with CMT, and I’ve seen many CMTers accomplish amazing things.

Bodybuilding, however, has to me always seemed unattainable for those with CMT. That’s because the main focus of the activity isn’t on performance, but on a person’s physique.

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Bodybuilders compete in different classes, but in every iteration, the goal is roughly the same: to gain muscle mass and then, in preparation for event day, cut down to extremely low body fat percentages to show off their muscle size and definition, usually achieved through dedication to intense gym sessions and specialized diets.

In essence, it’s a kind of pageant. I never thought a CMTer would want to step out onstage and subject their physique to such scrutiny. I suspect my surprise and amazement stems from my own self-consciousness and internalized ableism.

John Nixon, 43, doesn’t let CMT keep him from pursuing bodybuilding. (Courtesy of John Nixon)

Nixon, however, doesn’t let any such fears dissuade him from doing what he wants to do. Even before he found out that certain bodybuilding shows offer a disability class, Nixon said, he had his eyes set on competing onstage. Personally, I find his attitude even more remarkable than his physique.

I don’t know if I’ll ever completely overcome my feelings of self-consciousness or fully embrace what I see as my own imperfections, but I’m working on it. I believe my time in the gym has helped me — something I imagine Nixon can relate to.

Working with a personal trainer to improve my form, mobility, and physical strength requires me to acknowledge and embrace my current limitations while finding contentment with my progress. Thus, going to the gym has helped me see the potential in my disabled life and body, even though I feel frustratingly weak at times.

Nixon, who acts as a personal trainer for a few clients, says he’s familiar with people — particularly those of us in the disability community — working through similar feelings of inadequacy.

“You’re not going to get to 100%, you’re not going to be perfect — certainly not compared to an able-bodied person without CMT,” Nixon said. “Other people, even if they appear able-bodied, will have their own insecurities. I don’t think [CMTers are] novel in that way; it’s just a bit more noticeable, and we focus on it more.”

That’s important to remember. And though my goals don’t include training for a bodybuilding competition, Nixon offered me some advice that’s helped me gain a new perspective on what progress I can make in my physicality.

“Even if you gain a little bit more strength or put on a little bit more size, or even if you’ve stopped the progression of symptoms for a little bit, you’ve won something,” Nixon said. “You’ve won a competition with yourself.”

Note: Charcot-Marie-Tooth News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Charcot-Marie-Tooth News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.