A 7-mile hike with a 1,000-foot elevation gain was on the schedule for our second day of camping at Point Mugu State Park near Malibu, California. I was with our small Boy Scout Troop 911, which operated out of my elementary school in Huntington Beach. It was a…
Having Duchenne muscular dystrophy gives me plenty of things to worry about, like scheduling doctors’ appointments on time, not knowing when I might lose my ability to do certain actions, and using the bathroom when out with friends, because I know I’ll need help but will be too embarrassed…
Making it to 25 years old is no small feat. It means you’ve survived for a quarter of a century. While 18 is a clear demarcation between childhood and adulthood, 25 makes it even clearer still. I celebrated that moment on my birthday last Friday. Getting this far in life…
When his daughter, Meredith Huml, was diagnosed — finally — with facioscapulohumeral (FSHD) muscular dystrophy in 2004, Raymond Huml immediately jumped into action, researching everything he could about the disease and reaching out to the FSHD Society. “We went to the FSHD Society and looked up what they…
The show’s name may be “Ordinary Joe,” but this NBC drama series is proving extraordinary for its authentic depiction of a character with a disability, portrayed by John Gluck, 13, who has collagen VI muscular dystrophy. The show follows Joe Kimbreau, played by actor James Wolk, in three different…
Millions of people around the country have quit their jobs in search of more fulfilling work, better hours, and work-from-home options in what the media is calling the “Great Resignation.” Some of them, I’m sure, are realizing that they don’t need to work a full 40 hours to accomplish…
Author and advocate Elijah J. Stacy is using what he has learned through adversity in battling Duchenne muscular dystrophy (DMD) to help others overcome their own challenges. DMD is a progressive muscle wasting disease that slowly robs a person’s muscle strength. In Stacy’s case, he lost the ability to…
Learning when to say yes and when to say no has been especially important for me as I live with Duchenne muscular dystrophy (DMD). It’s a balance between trying to rise up in my career by accepting story assignments, and saying no to events, friends, and more assignments so that…
We form our identity from the world around us. That includes factors like our relationships with parents, siblings, and friends, what we look like, our sexual orientation, and our religious beliefs, among others. For me, one unspoken taboo is my disability. I use a wheelchair because I can barely walk,…
Sir Isaac Newton’s third law of motion states that for every action on an object there is an equal and opposite reaction. In 1686, his law was groundbreaking, but in 2021, we take its simplicity for granted. There is a consequence for every action taken. When a bullet discharges…
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