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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…

When you have a chronic illness, finding a doctor who is knowledgeable about your condition can be a long process. Depending on your disease it may be difficult to locate a medical expert close to where you live. I have Charcot-Marie-Tooth (CMT) and following my diagnosis, I…

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…

I heard Brad Paisley’s “Letter to Me” the other day. It got me thinking about what I would tell my younger self about growing up with Charcot-Marie-Tooth (CMT) 1a. Dear younger self, First of all, everything will work out. I know it does not seem like it,…

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…

Ableism is discrimination or prejudice against people with disabilities. It can occur in many ways — some ways subtle and others overt. A person with a disability may experience ableism as unwelcome stares or a building or event being inaccessible. Though I have encountered ableism for ages,…

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…

The Center for Eating Disorders defines body image as the “subjective picture or mental image of one’s own body.” It is how one feels about their body, and can be positive or negative. Having a positive body image is difficult enough without having a disability. In today’s…

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…

The other day, I had to climb the bleachers at my son’s high school. I admit the prospect scared me a little, not only because of the height factor but also because there weren’t adequate railings for me to hold onto. I have Charcot-Marie-Tooth type 1A and…