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What I Am and What I Am Not

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 Are Not Always My Friend

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…

Creating Balance to Ward Off Anxiety

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…

‘To Travel Is to Live’

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…

Continuing My AFO Journey

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…

Oh, What a Pain!

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…

What Accommodations Are There?

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…

The Thoughts that Keep Me Up at Night

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…

Taking Big Steps in My CMT Journey

“Those who have known you for years love you for what is between your ears, not what is on your ankles.” A dear friend said that to me the day I was fitted for my first pair of ankle-foot orthosis (AFO) braces. I was, and still am, feeling very conflicted…