Columns

Muscular dystrophy entered my life in the fall of 1984. I was 11 years old and beginning my sixth year of school. Along with neighborhood friends, I would walk to and from my elementary school every day. That September, I remember feeling very tired on the short walk down…

Duchenne muscular dystrophy (DMD) touches every part of my family’s life. Jason, my husband of 23 years, and I have seven children. Three of them — Max, 18, Rowen, 15, and Charlie, 13 — live with DMD. We’re now in the middle of what could be one of…

Wrestling videos were the soundtrack to my morning earlier this week. I was staring at a beige wall void of anything except a small white clock marking the time and the black screen of a television no one uses. Sitting in the infusion center at our local hospital, I thought…

A few years ago, my wife, Wendy, and I took a mini-vacation to Philadelphia with my brother Ron, his wife, Judy, my brother Tim, and his wife, Diane. Ron, Tim, and I had visited relatives there on a regular basis growing up, so we cruised around the old neighborhoods where…

This week, one of my boys had to get an MRI. Three of my four sons — Max, 18, Rowen, 15, and Charlie, 13 — are living with Duchenne muscular dystrophy (DMD), and they’ve had annual MRIs for the past 14 years (well, fewer for Charlie). Sometimes…

Nearly two years ago, I authored a column for this website about my reflections on the semi-autobiographical rock musical “tick, tick … BOOM!” from American composer, lyricist, and playwright Jonathan Larson (best known for “Rent”). I’d just watched the 2021 film adaptation, directed by Larson’s…

I often read social media posts from moms asking for safe and fun ideas for their children to enjoy during summer break. When my boys were younger, I worried about that as well. I wanted my three sons with Duchenne muscular dystrophy (DMD) — Max, 18, Rowen, 15, and…

As I was finishing up a recent interview with the host of “FSHD Radio: Straight Talk with Tim Hollenback,” a service of the FSHD Society, Tim’s final question was, “If there’s one thing you’d like people to know about facioscapulohumeral muscular dystrophy [FSHD], what would it be?”…

“What can I do to help?” It was my husband’s answer to the long rant I’d just finished. I didn’t know I needed an answer, but his caught my attention. Beyond the weight of my responsibilities, I was trying to carry myself — and the heft of that was crushing…

Last month was tough for me. Although celebrating my partner’s birthday on June 12 was a welcome distraction, I still had a June I’d like to forget, mainly because I spent the entire month recovering from a foot infection that hospitalized me for the last three days of May. And…