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.
It was a busy week of doctor appointments — and decisions. First, I went to see my new orthotist. I’m so glad I decided to speak up about how the other orthotist made me feel. My new doctor listened to my concerns. She adjusted the…
Why is summer break so important? Because teaching is tough and exhausting. Throw in a physical disability like Charcot Marie-Tooth, and it is even more challenging. People often ask why I do not work over the summer. When…
How should I exercise? Which activity is best for me to do? Those are always repeated questions when you have a chronic progressive disorder. I have Charcot-Marie-Tooth. I would like to lose weight and improve my overall health. However, it is not always easy when you are dealing with…
It’s been a week of firsts for me. It was an overwhelming week in many ways, although I did learn a few things along the way about myself and the importance of speaking up. It all started after a visit to my orthotist. My ankle-foot orthotics (AFOs) are causing pain…
I cleaned the bathroom yesterday and it now shines and looks and smells great. The downside? I needed a nap after cleaning the tiny room. I am slowly finding that household chores are becoming more and more tiring. I have Charcot-Marie-Tooth, and the disease is slowly progressing. Although I…
One person has stood by my side through it all. This person supports me in everything I do, even if she doesn’t agree with my decisions. She is there for me at any time of the day or night, even when I call her in tears at 3 a.m. She…
I did not realize physical therapy could be such an adventure. WOW. Not only was it informative but it was also a workout! Boy, my muscles ached after the first session. I had an evaluation done a few weeks ago, but the other day was the first session. The…
“Can you repeat that?” “I am sorry, but I cannot hear you, please speak louder.” I am saying these things more often than I used to. It is worse when there is background noise, like an air conditioner or a running projector. This is particularly problematic in the classroom. I…
“To tell or not to tell people about my disability?” That is always the question. When I meet someone, how do I know how they will react to my disease? How can I be sure they will not laugh or turn away? It is not easy to tell people you’ve…
Today, I sat in a cultural proficiency teacher training designed to raise awareness of cultural differences and stereotypes. The class did an exercise in which we filled in the sentence: “I am_____ and I am not ____.” This got me thinking about how people see others who…
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