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After walking around Jamestown Settlement this past week, I’m really wondering how much longer I, as a schoolteacher, can go on these big field trips. I am not one of those people who uses my disability as an excuse, but this trip took a toll on me. I have…

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.

At my Weight Watchers meeting, the coach asked us what activities we would do if we had no restrictions. I began thinking about it. I have Charcot-Marie-Tooth type 1A and wear ankle-foot orthoses; therefore, I am somewhat limited in my choice of activities. Some things are just not…

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…

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…

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…

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…