Columns

Is it possible that we might have a bit of input into how we snag our angel wings? It sort of seems like it. Near the end of my senior year of high school, my maternal grandfather underwent an experimental procedure to reduce tremors. It did not…

How would you expect someone with a disability to react upon reading an account of a nondisabled man essentially telling a disabled woman she shouldn’t exist? Would you expect them to react with despair? Fear? Rage? I reacted by laughing hysterically. The chronic pain and increasing fatigue caused by…

Like most things when it comes to Sherry, it was a no-brainer. A few weeks ago, I woke to a string of messages in our shared Discord server. An SMA News Today columnist, she’d been asked to participate in this year’s Rare Disease Day (RDD) panel, organized…

As I prepare to write my first column in over a month, a nasojejunal tube is pumping food into my small intestine, reminding me I’m not out of the woods yet with my health. My energy level feels nonexistent, and I fear that it may be…

As I last wrote, my 89-year-old mother was admitted to the hospital after testing positive for COVID-19. “Oh no,” you might think. “That doesn’t sound good.” You’re right, it doesn’t. My mother, however, had high hopes for COVID-19. *** Our third baby, Jeffrey, burst into our…

A friend and I were sitting in a dimly lit movie theater a few years ago when two guys in their 20s approached me. I couldn’t tell initially if I knew them, but after a closer look, I realized that neither was an acquaintance of mine. They each bore…

For the first time as an adult, I’ve met the stranger within myself.  I’ve been exploring the unknown caverns winding deep inside my heart, not from an underground entrance, but instead, closer to the clouds than I’ve been in a long while. My environment and scenery…

I always knew I was rare. From the motorized wheelchair to the feeding tube, there’s no mistaking me for normal. No matter how hard I try to blend in, I always stand out, to the point where I’ve pretty much given up. Why pretend to be something I’m not?…

Whenever my family and I meet new SMA specialists, they’re usually rather perplexed by me. They watch in amazement and excitement as my abilities defy the expected progression for an adult with SMA type 1 — someone whose rare genetic coding says they probably shouldn’t be alive, let…

An object is often considered rare when it has unique, sought-after qualities. But Rare Disease Day, observed on Feb. 28, is about people, not objects. Those of us with rare diseases acquire unique qualities through our experiences. Out of the smoke and ashes rise strong people. Some…