Columns

Like any proud Irish girl, I love St. Patrick’s Day. (According to Ancestry, I’m exactly 12% Irish.) I always wear customary green to mark the occasion, and I enjoy partaking in festive events. But what I love most about the day is…

I haven’t mentioned this to you yet, but I’ve decided to go on safari. Wheeling through bristled grasslands and sprawling wilderness, I’ll breathe in the sights, sounds, smells, textures, and tastes of a new adventure. If you’d like to be my companion, come along with me on the first installment…

It can be annoying when you receive devastating news, and someone naively says, “When one door closes, another one opens!” As someone who has received plenty of bad news, there is some truth to this statement, no matter how cliché it sounds. In the ’90s, I received the devastating news…

Our sweet third baby, Jeffrey, arrived on a sunny May morning. Two months later, spinal muscular atrophy barged into our world. Hearing the prognosis of death before kindergarten was akin to being pummeled by a raging bull on one side and a tornado on the other. It snatched the proverbial…

In college, my sanctuary was the room where the majority of my classes took place. Tucked away in a secluded corner of the humanities building, the film room was akin to a small auditorium. In the center was a large screen that my professors used to showcase all…

It’s become a sort of ritual. Once every few weeks around 3 p.m., my mom will drop by my room. “So,” she’ll say, with ridiculous amounts of forced brightness. “So.” Code word for “We need to talk.” Code word for “I just checked the mail, and you’re not going to…

I gotta go climb some mountains, and I gotta do it now. That was the thought I focused on as I emerged from the pulmonary unit waiting room, weaving my wheelchair among sandstone fabric chairs arranged in a labyrinth of novice scale. Another six-month checkup appointment with pulmonary function…

My neurologist presses his stethoscope to my chest. He’s performing a routine checkup; it’s a mere formality, really, so I can be sent home with my prescription for gabapentin refilled. It’s over as soon as I breathe in and out and he has…

You already know that for the longest time, I didn’t want friends with SMA. I was young and desperate to be seen as “cool” (whatever that means), but more than that, I was dumb. I thought that being seen with “people like me” would ruin my street cred —…

As Rare Disease Day approaches on Feb. 28, many in the disability community are seizing the opportunity to share about their diseases and the many aspects of being rare. Having an entire day dedicated to this purpose is wonderful, but let’s not limit these discussions to…