Columns

My facioscapulohumeral muscular dystrophy (FSHD) causes a variety of symptoms that affect every aspect of my life. Sitting up in bed is a challenge. Getting dressed is tiring. Standing up has become a laborious process. I’ve had to adapt the way I brush my teeth. Eating is a…

On Aug. 21, I wrote to my local newspaper here in Singapore about a gap in housing policy that affects younger adults with severe disabilities. I’m one of those younger adults: I’m 29 and have Duchenne muscular dystrophy, a progressive condition that leaves me fully dependent on caregivers…

I’ve written columns about community and connection. I chose these topics because they’re relevant not only to those of us with rare, chronic conditions, but to everyone. I write through the lens of living with limb-girdle muscular dystrophy, but I strive to connect to all of society.

I spent part of this week with three of my sons in Denver. On Wednesday, they had a clinical trial appointment, followed by an appointment at the assistive technology clinic to try out some robotic arms. In anticipation of the latter, I began to reflect on my sons’ journey…

For years, I told the kids we couldn’t get another dog unless something happened to the two we already had. I did not want three dogs! I didn’t have room for that! Yet we now have a new puppy. My life is bursting at the seams most days, given that…

I’ve been on my own for the past 10 days while my wife, Wendy, and daughter Jill have been vacationing in Iceland. It’s been challenging. A couple years ago, when Wendy and Jill traveled to Croatia, Greece, and Slovenia, I wrote a column titled “Good to know that I…

Living with muscular dystrophy for 40 years has taught me many things. I’ve written here about the importance of connection, support, and our shared value as humans. Connections can lead to another cornerstone of our existence: community. We join our first community, our immediate family, as soon…

August here in Nebraska is sweltering. Not only do the temperatures reach the high 90s, but the humidity is suffocating. I’ll never understand why our kids return to school at this time of year, when it’s so uncomfortable outside. But as I write these words, five of my children have…

When I was 13 and fresh from spinal fusion surgery, I sat in a West End theater in London with my family, watching “Les Misérables.” The music stirred my soul and, for a fleeting moment, I imagined myself on stage. But that dream quickly faded. Accessibility barriers at school…

I’m a musician, and so are my brothers, Ron and Tim. We’ve all played professionally, but it’s been a long time since we’ve played together. That changed last month, but let me explain why it was such an event. Back in the late ’70s we were part of the…