I’m learning that the answer is not the destination, but the journey

Living with CMT, sometimes it's best to focus on the process, not the outcome

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by Young Lee |

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A few weeks ago, I spoke with John Nixon, a bodybuilder with Charcot-Marie-Tooth disease (CMT), about his experiences in the sport. During our video chat, Nixon highlighted one key reason for his appreciation of fitness and bodybuilding: Unlike many things in our consumerist society, it’s not immediately attainable. Fitness and building a certain physique take years of consistent work. As Nixon put it succinctly, “With fitness, you can’t just go out and charge it on a credit card.”

I’ve since thought about the concept of consistent work as it applies to my own life with CMT. I have no aspirations to be a bodybuilder like Nixon, but the concept applies to many other aspects of a CMT life. For instance, there are rarely simple and elegant ways to manage CMT symptoms; handling the disease almost always requires consistent work.

CMT is a chronic condition, and symptoms generally don’t disappear or lessen with time. For many of us, the best we can hope is to stave off our decline. Compared with many of my able-bodied peers, I’ll likely always take a little longer to fasten buttons on my clothes. I doubt I’ll ever be able to wield chopsticks as deftly as many of my friends. And I doubt I’ll ever know what it’s like to be at low risk of falling and tripping over nearly everything.

A CMT life has aspects without a set solution to whisk away such troubles. Encountering problems will almost always be frustrating. And unless scientists manage to concoct some cure or treatment that not only halts CMT’s progression, but also assists us CMTers with regaining nerve functionality, I don’t expect I’ll ever be able to find an answer I can get by charging a credit card.

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Embracing the journey

Instead, I’ve concluded that I’ll continue to struggle with parts of my life — that some answers don’t exist as destinations, but as directions that dictate where I ought to focus my efforts. It’s an acknowledgment that life will sometimes be a process and a slog.

However, I find a sort of peace in that mindset. Instead of dreaming about a particularly lofty aspiration, perhaps it’s better I just appreciate what I can do to grow and improve. Perhaps I can afford to look back a little more often to see how far I’ve come.

This strategy doesn’t mean I’m now convinced that setting goals is unproductive. For now, though, I’m going to focus more on process and performance goals — things I can put into practice every day — and how I can do those things better. And when I do set my sights on specific outcomes, I think I should be realistic about my hopes.

Based on where I am in life right now, I hope I can leverage this mindset to refocus some of my energy on taking a breather more often, and setting aside time to meditate to help me avoid being easily frustrated.

I hope I learn to love this process of growing. In that way, though I may not be building a physique that has a place on a bodybuilding stage, maybe I’ll at least be building a CMT life in which I’m happier and more content with the process.

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.


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