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? Why…
Columns
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 alone…
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 might…
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 down…
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 first…
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 had…
I’ve been depending on my tracheostomy tube to supply me with sufficient amounts of oxygen for 11 years. At this point, its presence is familiar to me in much the same way as a favorite piece of jewelry that’s worn every day. I don’t always think about…
Years before the pandemic, I was visiting a museum in Washington, D.C. A young child looked at me and my high-tech wheelchair. He then asked my mom, “Is he real?” I have to think from his perspective. We were at a technologically advanced museum. He probably thought that I…
Last Friday was a full moon, Friday the 13th kind of day, although officially it was neither. The stink bugs in the house and the dead skunk in the road summed it up perfectly. The day stank. But let me back up. The rental cabin my husband, Randy, and…
I never think about my life after 7 p.m. Years ago, I stumbled across this particularly helpful life tip. As someone with anxiety, I have a hard time shutting up my brain, especially after the sun sets. Depending on my mood, I can easily get wrapped up in worst-case…
