On My Own Two — Young Lee

On Halloween evening, I sat outside on a beach chair with a tub of candy in front of me. It had been a long time since I last handed out Halloween candy to the neighborhood kids. The past few…

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…

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…

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…

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.

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…

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…

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…

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…

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…

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…

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,…