On My Own Two — Young Lee

Charcot-Marie-Tooth. The first word is pronounced like “Shar-ko.” And it has nothing to do with shark teeth. That’s how Arlene, the protagonist of “Arlene on the Scene,” clears up the confusion related to her disease’s name.

I couldn’t help but smile when I saw Bernadette Scarduzio pop up in the final moments of Episode 3 of the sixth season of “Orange Is the New Black.” Her character has no dialogue, but she and her scooter are on screen long enough to make an impression…

The 2013 documentary film “Bernadette” was a milestone for Bernadette Scarduzio in many ways. It wasn’t just the first movie project she was a part of, it also was a coming out for her. The documentary marked the first time she came out as gay and her first time…

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…

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…

Topics such as setting goals and being more mindful have been on my mind recently. And that’s not by coincidence. A few weeks ago, I met with a friend who happens to be a licensed therapist specializing in marriage and family therapy. I had never talked with her about her…

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…

Among the many symptoms of Charcot-Marie-Tooth disease is a decrease in hand dexterity. This crossed my mind a few months ago while I was filling up on gas, and a young lady drove up to me asking if I could help her open her bottle of Sunkist. As I…

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…

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…

We pulled up chairs so that we could sit closer to each other. She pointed at her shoe, to a place about an inch from the tip. “See, my toes only come up to about here,” she said. “But you know we buy shoes more for the width than the…

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…