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Lessons from My Grandmother

My family members are traveling from around the country this week to gather for a celebration of my grandmother’s 100th birthday. We’re all excited about the event, and though I’m biased, I think my grandmother is a special woman worthy of a massive celebration. Standing at less than 5 feet…

What Ableism Looks Like to a Person with CMT

Ableism is discrimination or prejudice against people with disabilities. It can occur in many ways — some ways subtle and others overt. A person with a disability may experience ableism as unwelcome stares or a building or event being inaccessible. Though I have encountered ableism for ages,…

Maintaining a Positive Body Image

The Center for Eating Disorders defines body image as the “subjective picture or mental image of one’s own body.” It is how one feels about their body, and can be positive or negative. Having a positive body image is difficult enough without having a disability. In today’s…

Pondering Questions of CMT and Identity

A friend and I surprised each other recently. I casually mentioned that I have Charcot-Marie-Tooth (CMT). And she revealed that I had never previously brought up the subject. We have been friends for almost 10 years. In college, we spent many late nights together working on articles for the…

What Accommodations Are Available to Help My Son in School?

At my son’s Individualized Education Program meeting, the team asked what accommodations he requires due to Charcot-Marie-Tooth disease. He has little impact from CMT, with the biggest issue being motor dysgraphia. This is a learning disability that affects handwriting and fine motor skills. Our doctor…

Leaning on Friends

I don’t particularly like hiking. Steep inclines and unpaved pathways make me nervous. And sometimes it feels like I have pogo sticks instead of feet. I don’t always know which direction my body will propel me. Nevertheless, the hiking trails along the Blue Ridge Parkway are gorgeous. And whenever…