Is it necessary to write about my family and three children with Duchenne muscular dystrophy (DMD)? I have always felt that it is. However, sometimes, especially on social media, I am questioned and criticized when I share certain challenging aspects of life. “Why does she have to share that?”…
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On Nov. 27, I attended a live performance by ART:DIS musician Sky Shen, an old friend from the Muscular Dystrophy Association (Singapore) (MDAS). The show featured his recent debut EP, “Wheel You Love Me?” — a collection of songs he wrote about his experiences with…
It’s hard to believe: This is the 100th column I’ve written for Muscular Dystrophy News Today. It will also be my last for the near future. “Hawk’s-Eye View” has been a part of me for the past three years, as I graduated college, completed a five-month internship at…
Bend your mind. When we discovered our middle son, who has Duchenne muscular dystrophy (DMD), was on the autism spectrum, we helped him adjust to unexpected changes by using the words “bend your mind” as a cue. We haven’t used those words with him for years, but as…
The lights shone brightly, illuminating dancers dressed in red on the stage below. The rest of the theater was dark, save for an iPad glowing toward the back of the auditorium. I sat in the dark hall on a cold Saturday night in the small Nebraska town I call home.
On Thursday, Nov. 17, I went to bed with what I thought was a bad stomachache. It felt like someone was sticking a knife in my left flank. Then I realized: This was undoubtedly a kidney stone. I’d had three others, and the pain was exactly the same. But this…
Are there curbs or cutouts? How many stairs are there? Is there an elevator? Is there space for multiple power chairs? How big is the bathroom? How far is the parking lot from the entrance? What do all of these concerns have in common? Unfortunately, they’re things I never…
Like many, we have a tradition of buying a real Christmas tree every year during the weekend after Thanksgiving. It just doesn’t feel like Christmas until we have visited our local tree farm to pick out the perfect one. I love everything about that day — the damp pine…
On Nov. 10, I delivered my second poem, “Breaking the Fourth Wall,” at an engagement by ART:DIS, the first organization in Singapore to pioneer the artistic development of members of the disabled community. The goal of ART:DIS is to unearth the creative talents and diverse gifts of disabled Singaporeans…
Adult life is overwhelming. There’s so much to do. You have to hold down a job, pay rent or mortgage, prepare for retirement, spend quality time with those you love, learn new skills, find time for rest, and pursue a hobby or passion. Then add Duchenne muscular dystrophy on…
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