Columns

As a Duchenne muscular dystrophy survivor, I’ve spent much of my life on the outside looking in, especially when it comes to public events like concerts and sporting events. My condition affects not only my ability to move but also my breathing. I rely on a BiPAP…

In September 1995, I began my first teaching job at a New Hampshire public middle school instructing students about band instruments and music. At the time, I was 10 years into my diagnosis with Becker muscular dystrophy. I wouldn’t be rediagnosed — this time, correctly — with…

If you’ve read any of my recent columns, you know that I’ve had a lot of health struggles of late. I’m back on the medical merry-go-round with physical therapy, occupational therapy, medical appointments, and tests that tie me up multiple days every week. I’m struggling to stand up from…

On April 25, the Muscular Dystrophy Association (Singapore), or MDAS, celebrated its 25th anniversary with a spectacular gala at Marina Bay Sands, an iconic hotel and convention center here in Singapore. The evening was filled with music, memories, and meaningful reunions. The staff had adorned the room, which quickly filled…

Living happily with limb-girdle muscular dystrophy, as I do, requires patience, a positive attitude, and a good support system of family, friends, and a professional care team. But I’ve learned there’s another huge component for me to succeed: planning. Abilities that able-bodied people take for granted often require well-thought-out…

I am going at a pace I can’t maintain. As a former half-marathon runner, I can feel the burn in the pit of my stomach as I write this. I can feel the heat in my legs and cheeks as I push myself to the finish line. Except this time,…

In a recent column, I talked about paring down my music rig and retiring my accordion. Over the years, I’ve transitioned from a 120-bass professional accordion to a 32-bass student model that, while less than 15 pounds, is now too heavy for me to handle. Because of my facioscapulohumeral…

I’m writing this column as my husband, Jason, drives our family through the last rolling hills on the eastern side of the Rocky Mountains. Last week, we took an epic road trip from our quiet hometown in Nebraska to the eclectic sounds and neon lights of the Las Vegas Strip.

Two days ago I marked the second anniversary of my relationship with my girlfriend, Amanda. As I celebrated this milestone, I found myself reflecting deeply on how much our lives have changed since we became a couple. Duchenne muscular dystrophy (DMD), my lifelong companion, has undoubtedly influenced…

I recently penned a column that took a surface look at the history of the disability movement in the United States. As many readers pointed out, my list of world changers and their accomplishments was far from exhaustive. I’d like to share another small part of the movement that…