I’ve Discovered the Importance of the CMT Community

We pulled up chairs so that we could sit closer to each other. She pointed at her shoe, to a place about an inch from the tip.

“See, my toes only come up to about here,” she said. “But you know we buy shoes more for the width than the length.”

I laughed because I didn’t know. Well, I knew that I bought shoes for the width. But I hadn’t realized that it was a thing. Because, apart from family members, I hadn’t met anyone else who had Charcot-Marie-Tooth disease (CMT), and so I didn’t realize seeking out shoes for their width was common in the CMT community. I guess I was out of the loop.

I shared this moment with a member of my local Charcot-Marie-Tooth Association (CMTA). It was one of many special and enlightening encounters at my first CMTA meeting recently. I began to understand the value of such events, where members of the CMT community can gather, chat, and bond over shared experiences.

I don’t think I had fully appreciated the importance of the CMT community before.

As a child, I wasn’t curious about CMT. I was only interested in whether having the disease would help or hinder my social life. In college, I was more worried about my classes and extracurriculars. I knew that CMT organizations and support groups existed, but I never considered my condition severe enough to merit participating in them.

I recognize now that this perspective was possible due to my privileged position: My condition is relatively invisible and it doesn’t hinder my activities.

However, I don’t think this viewpoint is sustainable as my symptoms worsen. And I realize that complacency won’t bring about the changes all of us in the CMT community seek.

My father told me that our ancestors knew that we were carriers of a disease with CMT-like symptoms, though no one knew the name of the disease back then. However, to avoid shame being brought on our family name, we kept the knowledge secret.

“Saving face” is a very Asian concept. However, I don’t think it’s unique to Asian culture. At the CMTA meeting, I spoke to a member who is close to my father’s age. Growing up in the United States, she said that her generation believed that it was polite to keep quiet about such things.

I think we are lucky that many Americans have moved on from that way of thinking.

When we keep the topic of disabilities out of public discourse, how can we hope to advocate for change? And without meeting others with the same disease, how can we discover the challenges that unite us and the common problems we face? If we don’t work together, how can we find solutions?

I hadn’t realized that finding the right pair of shoes was such a common struggle for many with CMT. But it’s a struggle I know well. Buy a shoe made for “your size,” and you realize your fat feet feel cramped and you can’t shove your ankle-foot orthoses into your shoes. But if you go up one size too many, walking without falling on your face is impossible because of decreased foot coordination.

Maybe if I had thought about it for more than two seconds, I would have realized much earlier how common the struggle is. But I’m glad to know it now, however late.

This week I feel woefully ignorant. But I found comfort in the knowledge that I’m not special. I consider it a blessing to listen to others who have an in-depth understanding of my struggles and to realize that I have still much to learn.

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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.