On My Own Two — Young Lee

After a recent conversation with Bernadette Scarduzio, my friend and fellow Charcot-Marie-Tooth (CMT) advocate, regarding the inaccessibility of short-term rentals, I’ve been thinking a lot about accessibility. It’s a buzzword in the disability community, but for many, the concept is nebulous. This truth was highlighted by Scarduzio’s…

There are many things we in the Charcot-Marie-Tooth (CMT) community mourn. Among them are old passions, activities we used to love, and dreams we might’ve realized had CMT symptoms not gotten in the way. But in speaking with other CMTers, one unfulfilled desire I often hear about is…

Those of us with Charcot-Marie-Tooth disease (CMT) know it touches nearly every aspect of our lives. That’s true for anyone who is similarly disabled or has a chronic condition. For CMTers, the disease symptoms affect our mobility. Many of us have sleep apnea, which can lead to daytime…

Touch, taste, smell, hearing, and seeing: I don’t know if things are different these days, but when I was in elementary school, those were the five senses I learned from my teachers and textbooks. Until recently, I didn’t know there were others. But indeed, there are at least two other…

For much of my life, I avoided talking about Charcot-Marie-Tooth disease (CMT) and how it affects me. I didn’t mention it to the personal trainers I worked with, and most of my teachers and college friends were unaware I had it. I even went so far as to perpetuate…

Roger Ebert, the late film critic, said many things about the long careers of actors Robert De Niro and Al Pacino. But one particular observation of his has stuck with me over the years. In his review of “Heat,” the 1995 crime drama directed by Michael…

A woman walks into a coffee shop, orders a coffee, and looks around for the man she’s agreed to meet — her date. When she spots him waving at her from a table he’s found for them, she starts walking toward him. As she walks, it becomes clear she doesn’t…

I imagine most have heard the phrase “the truth will set you free.” I’ve heard some folks apply these words as general advice against spreading lies. Others appreciate the Christian roots of the phrase. I once even heard a person use the quote in the context of sales…

I don’t plan to ever discourage anyone from making New Year’s resolutions. But I also like to think I’m not the only one who, at one point or another, had an aspiration to get fit and set it as some kind of nebulous goal to be accomplished by the end…

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 years, of course, were disrupted by the pandemic. But this year,…

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…