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Columnist Young Lee learns to see strength rather than weakness

I want to love my body, but that’s not always easy to do.

Charcot-Marie-Tooth (CMT) disease has physically changed me. Sometimes it’s hard not to feel wistful when I imagine what life would be like if my body were completely different. In my darkest moods, I might even loathe some aspects of my body, such as the way it looks or moves.

Looking at my hands, I’m tempted to think only of moments of weakness, such as when my fingers slip. And sometimes I feel exposed by my small, awkward calves, especially at the gym.

The weird bump on my right foot sometimes painfully rubs against new dress shoes, reminding me how the world doesn’t seem to accommodate CMTers like me.

My back has been weak for much of my life; it was one of my first CMT symptoms. Thinking about it conjures up memories of things that have made me stand out since I was a young child.

Yet I understand that I’m being unfair to my body when I get in such moods. I wouldn’t allow anyone to speak so negatively about my friends or family. Yet I can be awfully negative and disparaging toward my own body.

Some attributes — particularly the ones that tempt me to discount myself — are simply my body’s way of adapting to the strain of CMT. My spirit is fighting the burdens of managing CMT, while my body, in its own way, is often doing the same.

Instead of denigrating my body, perhaps I should try thanking it. This is something I’m trying to do a little more often these days.

Yes, my grip is weak. It’s true that at times I struggle, even with chopsticks. But my fingers have also allowed me to play piano and be competitive at my favorite computer games. And although progress has been slow, I’ve seen some improvements in strength after adding grip exercises to my workout regimen.

My calves, though they’re small, help me take walks around my neighborhood when the weather’s nice.

As for my lumpy right foot, in part it’s like that because of tough skin, calluses, and certain muscles that are doing their best to compensate for other muscles with a smaller range of movement. It would be problematic if my right foot wasn’t able to adapt to my CMT in these ways.

Regarding my back, I’ve managed to wake it up by implementing a new training regimen my trainer provided me. It’s starting to feel stronger than ever before.

CMT is difficult to manage, but my body doesn’t deserve to put up with both this disease and negative self-talk.

Yes, my body is different because of CMT. But often, that’s only because it’s doing its best to take care of me. It’s fighting, too. It’s adapting. And I need to get better at appreciating it.

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 Services, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.

Thank you for this perspective, Young! It's interesting how this disease affects us all differently--my back is one of the strongest parts of me. We learn to adapt. I'm trying to re-learn salsa dancing after a long break because I "couldn't dance the way I used to". I realized that even if I don't look like everyone else and my body is changing, I don't have to give up the things I love.

Great comments. I am 73 and have had signs of CMT since I was 7 or 8. I have always been thankful that my ailment wasn't much more severe. Your writing is exceptional and needs to be seen by everyone who has CMT and everyone who knows someone with CMT

Thank you for your post. I tend to be quite critical of my disability however, with exercises I have improved my strength and abilities and my negative attitude of my CMT. That being said, my knee's still knock and my legs are in a bend, and numerous other things related to Cmt but I'm still alive and kicking with my braces on.

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This site 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.