Columns

“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…

Shoes. Most women have a closet full of them. Most women love to go shoe shopping and get the latest, cutest trend. Not me. I truly hate shoe shopping and always have. It always has been a struggle to find comfortable, cute, wide shoes with enough support for my unstable…

I have been told by many that stress can exacerbate the symptoms of Charcot-Marie-Tooth, and when I am stressed, anxious, or feeling overwhelmed, my symptoms are worse. So, I’m working hard to add balance to my life. Each…

I love to travel. Traveling is tough enough to begin with, and adding in physical conditions like Charcot-Marie-Tooth doesn’t exactly make things easier. But this past summer, I took the risk and embarked on a tour of the United Kingdom with my son, through a CIE coach tour. I have…

It has been almost three months since I received my ankle-foot orthosis braces (AFOs), and I am finally learning to accept them. I have been wearing them almost all day and to all types of functions. They do help me walk better and decrease my typical fatigue levels. But as I…

I woke up and could barely get out of bed. My right hip was throbbing and the pain radiated through my sacroiliac joint (SI joint). The pain is caused by the bone graft that was done on my hip when I had a spinal fusion due to scoliosis…

Ever have one of those days when you drop everything you touch and trip over everything? That was my day recently. I even tripped over my students. I am a teacher and usually have no major issues with my Charcot-Marie-Tooth. It was a rough day, but thankfully my students were understanding…

There is so much conflicting research online about supplements that can help relieve the symptoms of Charcot-Marie-Tooth disease (CMT). How do I know which is valid and which is just hype? I have even asked my doctor, but he is not confident enough in this…

What keeps you up at night? For me, it’s recently been the idea of “run, hide, fight,” which is survival advice for when there is an active shooter. Those are scary words for someone with a disability. My disability may be “invisible,” but I won’t be invisible to a…