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.
The other day, I watched a video about the late Claire Wineland. In it, she said many people believe that if someone is sick or disabled, they must be unhappy. When someone who is sick or disabled receives that type of message over and over, they may…
“Fair does not mean equal.” I always start the school year by teaching my class that concept. I start by giving each student a paper with the name of an injury or illness written on it. Then, they visit the “nurse,” and I give each of them a…
I was released from physical therapy, finally! Don’t get me wrong, I liked my physical therapist, even though he made me work hard during our 45 minutes together each week. So, what did I gain from physical therapy? I feel like I gained…
How do you know you are important to people? What is a sign that you are not only loved but really important to them? The other day, my dearest friend told me she was getting a tattoo. I thought, “OK, that is great, I’m…
In my continuing ankle-foot orthosis journey, I picked up my new AFO for my left foot. It has been a very different experience from where I started this journey. The journey began in December 2017…
My 14-year-old son has Charcot-Marie-Tooth disease, but you would never know it. He is an active, adventurous, and goofy teenager who does not let CMT stop him from doing anything. When he was learning to walk, we noticed some minor issues…
“I appreciate the struggle. I have mobility issues, too.” A person I had just met said this to me one day. I was uncertain about what she meant. Did she think I struggled with things? Did she think I…
Lately, I have been doing a lot of reading about mindsets. I am taking an online class about how mindset impacts our learning. It’s about how by changing what you say to yourself, you can change how you think and feel. This got me thinking…
“What did you do to yourself?” That was the first thing the saleswoman at the dress shop said to me before she even said hello. I was taken aback by her question. My good friend realized this and started to answer, “Nothing …” Then I…
Have you ever had a headache so severe that all you can do is stay in bed? The kind in which every sound and bright light sends ripples of pain through your head? I have. Many times. I finally decided to speak to my doctor about these horrific headaches. They…
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