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.
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…
There is power in connection. As humans, we all learn this truth at a young age, starting with the people around us when we’re little: our family. As we grow, we connect with other kids at school, in church, and elsewhere in the community, and just by existing every day.
Amid the hustle and bustle of daily life, many people tend to put off what I like to call “after-life” planning. It sounds a bit less scary than “end-of-life.” When I was diagnosed with muscular dystrophy at the age of 12, long-term planning never crossed my mind. (Do any…
The reward is that the chocolate cake tastes delicious and leaves you with a nice feeling. The risk is that you just spiked your sugar intake and may gain a few calories that take time and effort to burn off. The risk is that you may get injured, but the…
Summer is a great time to be outside, travel, attend neighborhood gatherings, and spend time with people you love. But those of us who live our adult lives with chronic illness face challenges in this season, as well as year-round. Still, there are many ways for us to enjoy…
I believe that many adults living with rare diseases can and do become experts in their conditions, sometimes more so than healthcare professionals. With respect to my own journey with limb-girdle muscular dystrophy, this point became particularly clear when I had a near-death experience in early 2024. Several types…
In September 1995, I began my first teaching job at a New Hampshire public middle school instructing students about band instruments and music. At the time, I was 10 years into my diagnosis with Becker muscular dystrophy. I wouldn’t be rediagnosed — this time, correctly — with…
Living happily with limb-girdle muscular dystrophy, as I do, requires patience, a positive attitude, and a good support system of family, friends, and a professional care team. But I’ve learned there’s another huge component for me to succeed: planning. Abilities that able-bodied people take for granted often require well-thought-out…
I recently penned a column that took a surface look at the history of the disability movement in the United States. As many readers pointed out, my list of world changers and their accomplishments was far from exhaustive. I’d like to share another small part of the movement that…
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