Columns

A few days ago, my friend Reena Deen, a disabled independent filmmaker with complex post-traumatic stress disorder and dyslexia, shared with me that her film “The Damned Ones” was selected for the After Dark Program at the 2026 Torino Underground Cinefest. “The Damned Ones” is a mystery…

Facioscapulohumeral muscular dystrophy (FSHD) and other health issues make it difficult for me to move these days. It’s hard to reposition myself when I’m sitting down. Standing to transfer now requires a seat that’s 22 inches or higher. It’s challenging to turn my feet to move from my wheelchair…

My life is always in motion, and we are in a busy season as my family prepares to move into a new house, one that is being modified for accessibility. I share my life with my husband, Jason, and our seven children: Lexi, 25; Max, 20; Chance, 19; Rowen,…

I have lived with limb-girdle muscular dystrophy (LGMD) type 2E/R4 for more than 40 years. Initially, apart from stretching and visiting a neuromuscular clinic twice a year, I didn’t think much about managing my symptom progression. So much has changed. In January 2024, I was forced to put my…

With seven children — Lexi, 25; Max, 20; Chance, 19; Rowen, 17; Charlie, 15; Mary, 11; and Callie, 4; three of whom have Duchenne muscular dystrophy (DMD) — I have entered the zone of a veteran parent and caregiver. Max, Rowen, and Charlie were diagnosed with DMD in…

On April 25, 2016, my son Billy stood at a podium in a hotel ballroom outside Washington, D.C., and told a room full of advisers from the U.S. Food and Drug Administration (FDA) something no 15-year-old should have to say out loud. “FDA, please don’t let me die early,” he…

The house is quiet this morning. A dog sleeps next to me on the couch as I contemplate the words I will use to write this column. The news is on, so there is some background noise, and I can faintly hear a video game playing in my son’s…

I stepped back onto the medical treadmill this year to determine if the pain in my right shoulder and elbow, as well as the weakness and stiffness in my right arm and hand, were the result of facioscapulohumeral muscular dystrophy (FSHD). I was hoping it was something else, something…

In the spring of 1986, my doctor told my parents and me that one of the standard prescribed treatments for muscular dystrophy was splints, which I would wear on my legs to keep my heel cords loose and limber. The doctors wanted my ankles to reach a 90-degree bend,…

The week before school started was pure chaos. We had only been home from vacation long enough to unpack and start the laundry before we had to go to open houses on Monday at two of the kids’ schools,  and then close on our new house. If that…