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…
While I love Christmas, I’m a Thanksgiving girl, too. Decorating for Christmas is one of my favorite things ever. I usually go shopping for vintage Christmas decorations and get at least one tree up before Thanksgiving. But I won’t get serious until we put the last leftovers from our turkey…
I have three sons with Duchenne muscular dystrophy (DMD). We had little need for durable medical equipment when they were young, but their needs have changed as they’ve aged and their disease has progressed. We have hospital beds, power wheelchairs, a stair lift, and a ceiling lift system.
I celebrated my 27th birthday on Oct. 25 and feel tremendously blessed to have made it this far, especially with Duchenne muscular dystrophy. Duke (my pet name for Duchenne) has taken me through many arduous trials and difficult times, including feeling marginalized within my own disability community. Still,…
“We rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.” I nervously recited this Bible…
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