Columns

My Grandmother Reminds Me to Give CMT a Fight

My paternal grandmother turned 97 this week. As much as I would have liked to be with her to celebrate her birthday, I’m trying to limit my in-person contact with the elderly during this chaotic time. But I’m glad my other family members and I were at least…

The Wariness That Comes With Disability

Although there are many words to describe the disabled experience, I’ve been thinking a lot about the word “wariness” this week. Many of us in the disabled community are indeed wary of many things. We go through great lengths to anticipate pitfalls, challenges, and risks in our everyday…

Trying to Better Manage the Little Frustrations

I was manning three active burners on the stovetop, deep into my food preparation for the week. On one of the front burners was a pan of chicken skins sizzling in a pool of rendered fat. In a pot to the side, onions, carrots, and celery were sweating…

Letting Go of My Pride and Asking for Help

A scene from the animated Nickelodeon show “Avatar: The Last Airbender” has been on my mind recently. It’s an exchange between a character named Iroh, an old and wise retired general, and his nephew, Zuko, a young and…

A Lesson from Woody for When I Feel Down

“We’re all Forky, feeling like we’re trash, but we’re also all Woody, trying to convince each other that we’re not trash.” A friend of mine tweeted those words shortly after seeing “Toy Story 4” last year. At the time, I thought it was a cute and…

Tips for Photography Enthusiasts with Disabilities

Recently, I joined a photography group for moms, and with them, I’ve been learning new techniques to feed my passion. However, there are times that I find these techniques difficult due to Charcot-Marie-Tooth (CMT). My hands sometimes shake which makes the photo blurry, or I hit the shutter too soon…

I’m Trying Not to Let Fear Limit Me

The indoor track of my alma mater’s gym smells like rubber and sweat. It has a specific warmth to it. The repeated impacts of dozens of feet send shockwaves through the track and almost make it feel alive.  It’s been more than 10 years since I’ve…

I’m Trying to Make Exercise Irresistible

A couple weeks ago when I spoke with Steve O’Donnell, a board member of the Charcot-Marie-Tooth Association and founder of the nonprofit Therapies for Inherited Neuropathies, I was struck by his enthusiasm and can-do spirit.