On My Own Two — Young Lee

How do those of us with Charcot-Marie-Tooth disease (CMT) communicate how it affects us and explain what it’s like to be a CMTer? As someone who has fairly mild CMT symptoms, I’ve described the disease as a kind of genetic clumsiness. However, I always knew that never…

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…

Can Charcot-Marie-Tooth disease (CMT) be a gift? Many in our community have pondered this question, and I’ve written about it before. But I’ve been thinking about the idea again after my sister brought it up while we were visiting our parents in Ohio recently. My sister…

I rarely have opportunities to talk about disability narratives while working as an assistant for my local public library system. Typically, when I talk books with patrons, we discuss the latest bestsellers, young adult fantasy series, or author gossip. However, with the support of my co-workers at my local library…

It’s definitely not a universal truth that every person with Charcot-Marie-Tooth disease (CMT) has negative associations with athletics and grade school gym class. However, because many of us with CMT have limited mobility and weak ankles and hands, we tend not to excel in many sports or gym…

Much of what we know about Charcot-Marie-Tooth disease (CMT), and often take for granted, is relatively new information. Many of the breakthroughs in our understanding of treatments, genetic subtypes, orthotics, and surgery have come about in the last 40 years. But there’s still a lot we don’t know.

There is a common game that children play, although I’m not aware of an official name for it. The game is pretty simple and involves two players. Player one presents a fist to player two and holds it as tightly as possible. Player two then tries to pry each finger…

When those of us with Charcot-Marie-Tooth disease (CMT) bring up our condition, a common response is, “So how does that affect your teeth?” It’s a frustrating misconception, and we may find ourselves wondering if people with other rare diseases have to deal with the same lack of understanding. But when…

I’m sure most CMTers will agree that Charcot-Marie-Tooth disease (CMT) often sucks. It can feel like there’s nothing redeemable about living with this chronic condition. CMT wears away at our physical strength and stability, leaving us accident-prone. It alters the body in unexpected and undesirable ways. It drains our…

I have the words “Charcot-Marie-Tooth” set as one of my Google alerts. As a result, I’ve come across many articles about CMT and CMTers. I love this. For me, it’s a great way to stay informed about the CMT community and hear about some of the…

I made my friend from childhood wait while I put on my ankle-foot orthoses (AFOs). We had just finished eating our eggs and toast at a fancy breakfast place, but we hadn’t seen each other in three years, so we still had some catching up to do. My friend…

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…