I love summer, but I also hate it. I love the warmer weather and being able to be outside more, but that can be problematic for me. I have Charcot-Marie-Tooth disease and wear ankle-foot orthoses, which make normal summer activities a little more difficult. I love the beach, but…
Columns
Jamal Hill likes to keep a busy schedule. After all, he’s hoping to qualify for the 2020 Paralympic Games in Tokyo. And although he’s currently the No. 1 ranked U.S. Men’s Paralympic swimmer in the 100-meter freestyle, he isn’t yet guaranteed a spot in the Paralympics. I…
Some days, I feel overwhelmed by the symptoms of Charcot-Marie-Tooth disease (CMT), but I never feel like giving up. I know that having a disability or chronic illness can take a toll on one’s physical and emotional state. Lately, I have been seeing many people posting in online communities…
We Are More Than Our Mutations
Linda Crabtree’s autobiography, “CMT and Me,” begins with loving descriptions of her parents. Her words, accompanied by childhood photos printed on the pages, gave me a vivid sense of what kind of people her parents were. I was eager to lose myself in Crabtree’s imagery of growing up…
Last weekend, I realized how tough it is to do certain things due to Charcot-Marie-Tooth disease (CMT). It affects my balance, coordination, gait, and dexterity in my hands. That means that simple things like putting on jewelry or zipping up a dress can be frustrating. I have discovered a…
Five years ago, I had a conversation with one of my writer friends. I had heard through the grapevine that she was working on a new story: a thriller featuring a protagonist with Charcot-Marie-Tooth (CMT). I was surprised at her choice of lead character because CMT isn’t a well-known…
A lot of people on the internet are talking about the benefits of celery juice. Scores of people, including celebrities, claim to feel better after drinking 16 ounces of pure celery juice each morning. Some claim that it gives them relief from a variety of diseases and disorders. I decided…
When I meet up with old college friends, we often spend time reminiscing. We recall late nights, trips, and past relationships. Looking back, we think about how much has changed in our lives; our careers, relationships, and bodies have altered a lot in the decade since graduation.
Can Having CMT Be a Good Thing?
The other day, someone posed the question, “What do you hate the most about having Charcot-Marie-Tooth?” I could probably write a book about what I hate about this disease. The same person also asked, “What do you like the most about having Charcot-Marie-Tooth?” That proved to be harder…
This past week, I grabbed lunch with an old friend, Kevin Schaefer. He writes a great column for SMA News Today. Our conversations over lunch usually revolve around nerdy topics such as the latest trailer for “…
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