Jill was diagnosed with CMT 1A at the age of 2. She is a fourth-grade teacher and mom to a teenage son, who also has CMT. Jill loves photography, travel, and spending time with family and friends. She researches and writes tips that make life with disability a little easier.
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…
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 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…
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…
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…
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,…
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,…
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…
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…
At my son’s Individualized Education Program meeting, the team asked what accommodations he requires due to Charcot-Marie-Tooth disease. He has little impact from CMT, with the biggest issue being motor dysgraphia. This is a learning disability that affects handwriting and fine motor skills. Our doctor…
Get regular updates to your inbox.