Columns

My body clock ticks louder because of my Duchenne MD

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…

What I want people to know about FSHD and its progression

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?”…

A rough month makes me grateful for what I’ve got

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…

When did I stop being a fun mom for my children?

“I didn’t think you’d jump with us,” said my daughter Mary, 9, breathing heavily as she bounced from trampoline to trampoline. It’s true; I’d never taken her or her little sister Callie, 2, to the trampoline park before. But we do fun things, I thought. After thinking some more, however,…