Author Archives: Young Lee

‘Bernadette’ and the Importance of Human Interest Stories

A few days ago, my sister messaged me on Facebook about a documentary regarding Charcot-Marie-Tooth disease (CMT) called “Bernadette.” I hadn’t heard about it before, but because I had nothing else planned for the evening, I decided to check it out. It’s a touching film, but what struck me…

Learning More About CMT and Who I Am

Until recently, I never had intentionally ventured to learn more about my disability. In retrospect, I was spectacularly uninterested in this aspect of myself. As a child, I think I felt like I inherently knew all I needed to know about Charcot-Marie-Tooth by merit of having it. I knew…

Lessons from My Grandmother

My family members are traveling from around the country this week to gather for a celebration of my grandmother’s 100th birthday. We’re all excited about the event, and though I’m biased, I think my grandmother is a special woman worthy of a massive celebration. Standing at less than 5 feet…

Pondering Questions of CMT and Identity

A friend and I surprised each other recently. I casually mentioned that I have Charcot-Marie-Tooth (CMT). And she revealed that I had never previously brought up the subject. We have been friends for almost 10 years. In college, we spent many late nights together working on articles for the…

Leaning on Friends

I don’t particularly like hiking. Steep inclines and unpaved pathways make me nervous. And sometimes it feels like I have pogo sticks instead of feet. I don’t always know which direction my body will propel me. Nevertheless, the hiking trails along the Blue Ridge Parkway are gorgeous. And whenever…

A Thank You to My Old AFOs

In grade school, I used to launch my ankle-foot orthoses (AFOs) from my foot and into the air by twisting my toes as I kicked as high and as hard as I could. I would watch my AFOs spin in the sky before they fell to the ground. The…

An Introduction to a New CMT Column: ‘On My Own Two,’ by Young Lee

Recently, my father sent me a copy of doctor’s notes he received in 1989. Those familiar with Charcot-Marie-Tooth disease (CMT) would recognize many of the phrases scattered throughout: “chronic weakness in lower extremities” and “increasing grip weakness,” to name a couple. It was when he first learned he had CMT,…