I recently read a post on social media about “mom confessions”: the good, bad, and ugly things we do as moms. Trust me, I have my fair share of those confessions. I began to think about it in terms of my Charcot-Marie-Tooth disease (CMT), the good, bad, and ugly…
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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…
This week at Friday night services, my rabbi’s sermon was about the Torah portion Leviticus 14:1-15:33 and how people were excluded because of illness. He spoke about the isolation and exclusion caused by their illness. This got me thinking about how those of us with disabilities can…
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…
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Finding a New Doctor with CMT
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,…
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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…
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…