Columns

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…

If Broadway’s Lin-Manuel Miranda wrote a musical based on my column, the word “value” would be a leitmotif with its own melody. Anyone who reads my column regularly will know I talk about the value of disabled folks often, that it’s what every one of my arguments boils…

The Netflix series “Special” opens with its main character, Ryan, getting hit by a car and thrown into an existential crisis. The accident forces Ryan, a disabled gay man who has multiple insecurities, to evaluate his identity and pushes him to reinvent himself over the course of the…

Every 28 days or so, I convince myself that I’m dying. If you’ve read my column before, you’ll know that I have a complicated relationship with death, which is to say I see it everywhere. Years ago, when I first started writing for SMA News Today, I thought I…