Columns

When I was 13 and my brother, Tim, was 16, we got skis for Christmas. I’m not sure why Mom and Dad decided to get them for us. Jeannette High School, my alma mater, had a ski club, but Tim and I weren’t members. I don’t recall asking for skis.

A close friend of 30 years recently asked what my life was like before I was diagnosed with limb-girdle muscular dystrophy. When I met this man, we were both in college, studying music and playing drums. It was 1991, and I’d been diagnosed with muscular dystrophy for only…

Two weeks ago, I stood on stage at the Fullerton Hotel Singapore to receive a Study U.K. Alumni Award for “exceptional efforts in driving inclusion and positive change in society.” The British high commissioner to Singapore handed me the award while my partner, Amanda, and my caregiver, Glenda, cheered me…

Superheroes were a large part of my life less than a decade ago. I am a boy mom. We had four sons in five years, and our house quickly became a lived-in museum of all things boys. Power Rangers, X-Men, and Marvel and DC Comics characters were like family members…

Despite the significant health challenges I face as a person living with Duchenne muscular dystrophy, I’ve come to realize that creativity can thrive in the most unexpected places. One such place is social media. My girlfriend, Amanda Yip, and I recently embarked on a short-term project with Blind…

I’ve played music since I was 5 years old. My first professional playing job was as an accordionist in a Polish polka band when I was 13. My accordion at the time was a full-size Excelsior 120 bass model that weighed about 35 pounds. My professional playing career took a…

“ICE” is a widely used acronym for “in case of emergency.” In today’s fast-paced world, many people have ICE contacts on their phones and folders on their computers that tell others who to call in the event of an emergency. Those of us living with chronic illness can and…

My heart is walking a tightrope. I’m a 45-year-old wife to Jason and mother to our seven children: Lexi, 23, Max, 19, Chance, 17, Rowen, 16, Charlie, 14, Mary, 10, and Callie, 3. Three of our children, Max, Rowen, and Charlie, are living with Duchenne muscular dystrophy (DMD). This…

I’ll be straightforward about caregiving: It’s exhausting. I’m the mother of seven children: Lexi, 23, Max, 19, Chance, 17, Rowen, 16, Charlie, 14, Mary, 10, and Callie, 3. I’m also a caregiver to Max, Rowen, and Charlie, who have Duchenne muscular dystrophy (DMD). You are catching me during a challenging…

One thing I was born with, aside from my facioscapulohumeral muscular dystrophy (FSHD), was narrow feet. As part of a working-class family, where money always seemed to be in short supply, my feet became an added expense that my mom combated by being a thrifty shopper. If she saw…