Columns

Earlier this month, I attended the debut of Stephanie Esther Fam’s play “Absence” at Singapore’s Gateway Theatre Black Box. Fam, a leading Singaporean poet and playwright in disability-led theater, is also a close friend of mine. Although I had known of her work for some time, we…

Roughly four decades into living with limb-girdle muscular dystrophy, I’ve developed numerous ways to thrive. Like many others, I believe in the power of a positive attitude. I try my best to project a positive outlook when communicating with others, whether it’s face to face or by…

I have seven children, and three of them are living with Duchenne muscular dystrophy (DMD): Max, 18, Rowen, 15, and Charlie, 13. If you’re a caregiver or a parent, I’m sure you’ll understand how tired I am. I won’t peruse my past columns, but I’m sure…

Kevin Schaefer, the associate director of community content at Bionews, the parent company of this website, recently shared a thought-provoking article from Psychology Today titled “How Chronic Illness and Masculinity Intersect.” It has me thinking about what kind of man I am and want to be. The…

I’m officially a mother-in-law! That’s a new title for me. I’m a mom to the seven children I share with my husband, Jason. I’m also a special needs mom and warrior mama to my three sons living with Duchenne muscular dystrophy (DMD). And now I’m also a mother-in-law…

Starting last week, I’ve been trying to get my life back on track after enduring a few difficult months. As I recently shared, life has been challenging since I left my job in April. Then, in May, I faced an unexpected hospitalization, and June brought relationship tension. In July,…

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…