We Don’t Need to Walk a Mile in Our Braces Alone

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by Young Lee |

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When I was a kid, I felt as if I were the only one with Charcot-Marie-Tooth disease (CMT). I felt like I was one of one. Though I did have my father as a CMTer to look up to, when it came to relationships on the playground, in the neighborhood, at school, church, and summer camp — all the social areas that matter to kids — I felt alone.

Now, I didn’t feel particularly bad about being the lone kid with CMT. I didn’t feel deprived. I couldn’t even imagine connecting with other CMTers. In my mind, the condition was so rare that the possibility of meeting another kid who had it didn’t even cross my mind.

Still, I think it might have been nice to know I wasn’t the only kid with CMT. That said, had “Walk a Mile in My Braces” come out when I was a kid, I think it would have blown my mind.

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My Family Understands the CMT Challenges I Face

“Walk a Mile in My Braces,” a collection of perspectives and thoughts about CMT from 75 members of the Charcot-Marie-Tooth Association (CMTA) Youth Program, was released last month, and I was excited to finally get my hands on a copy. I’ve been excited to see this project completed since I first heard about it earlier this year.

As I flipped through the pages, I was fascinated and excited by what I was able to learn from the CMTA youth.

The CMT community thrives when it’s connected

I grew up in a time when CMT organizations were just starting to become popular, and it’s awesome that the internet and social media have opened doors for people with CMT so we don’t have to feel alone in our struggles anymore.

As I looked at the book, I found it touching to read stories about how CMT youth were able to find strength, community, and camaraderie by connecting with one another. Many folks found advice. Others seemed to have found a purpose. And it seems like everyone found a bit of fun.

While some parents might be reluctant to let their young kids go online, perhaps this book would be a great way for a young CMTer without social media access to feel a little less alone. If I’d had this book when I was a kid, I’m sure it would’ve helped me.

The kids will be all right

I never really challenged myself about what a disabled identity means, or whether CMT ought to be part of how I view myself, until recently. And because I didn’t know any folks who were part of a disability movement, I never thought of people with disabilities as a community with political interests.

This seems to be changing, and that’s pretty neat.

One thing I really appreciate about “Walk a Mile in My Braces” is that the perspectives are curated into a kind of scrapbook, which helps to highlight the diversity among the stories and exposes me to aspects of CMT that I haven’t personally experienced. I have no idea what it’s like to rely on a wheelchair, to have to change schools because of CMT, or to be in the running for homecoming queen.

It’s nice to be reminded of the community’s diversity and how CMT affects each of us differently. Because of that, I know there are many different ways to show one another love and care, which is valuable.

The stories in this book are important, and they’ve reminded me that I’m not alone. I eagerly await and cheer on any new project that shines a spotlight on the CMT community.

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

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