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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…

My CMT Symptoms Can Get in the Way of Fun

Do I want to go hiking with you? Yes. But the bigger question is, “Can I?” Will the path be steep? Is it narrow? Is it rocky? You see, these things scare me and make it difficult for me to attempt to hike, even if I truly want to join…

Exhausting My Options for Battling Fatigue

The other day, I went on a field trip with my fourth-grade class to the Library of Congress in Washington, D.C. We had to do a fair amount of walking from where the bus dropped us off, then we toured the building. When we returned to school, my…