Columns

My introduction to a branching dialogue system in a role-playing game happened in 2019, the first time I played Dragon Age: Inquisition. The character I’d just created was a prisoner suspected of decimating a holy site in the fictional world of Thedas. As such, she was being…

Months ago, I had an idea for a column. I wrote it down with the intention of revisiting it around my golden birthday on June 29: “Diagnosed at nine months, given nine years to live, and going on 29.” I thought it was cute at the time, a hook…

The delicacy of my health is no joke, but during a recent appointment with my ear, nose, and throat specialist, I had to laugh. In addition to living with spinal muscular atrophy (SMA), a rare disease, I’d just learned I was also living with one of the…

My husband, Randy, and I celebrated our 12th anniversary in 1986, eagerly awaiting the arrival of our first baby the following month. In addition to eating healthily and walking regularly, my job as a teacher of children with orthopedic and multiple handicapping conditions provided constant action. My…

In the documentary “Still: A Michael J. Fox Movie,” the famed actor recounts how he hid his Parkinson’s disease for several years after his diagnosis. Even as his symptoms became noticeable, Fox wanted nothing more than to suppress that part of him and retain…

While living with spinal muscular atrophy (SMA), losing physical abilities is expected due to the progressive nature of the disease. Yet, even though I’ve been accustomed to this grim prognosis, sometimes I’m caught off guard. Although I know my muscles inevitably weaken and my abilities diminish over…

I’ve written many stories about hope, which has enabled me to climb mountains and achieve my goals. Throughout my journey with SMA, I’ve traveled across many mountain ranges. But what happens if I slip or face an avalanche of problems, causing me to slide back down? There…

As another hot summer gets underway, I’ve been reflecting on two pivotal events that took place a year ago this month. These memories elicit feelings of joy whenever I’m feeling down in life with SMA. On June 11, 2023, my summer kicked off with a bang. My best…

“You and our baby brother should count yourselves lucky,” I told my brother Gabriel after my first appointment with a psychologist for attention-deficit/hyperactivity disorder (ADHD). “If I have ADHD, it means I have two disabilities and lost the genetic lottery twice, yet you guys are fine.” Gabriel…

A weekend this month packed a particularly powerful punch. My husband, Randy, and I were married on June 7, 1974. So you won’t have to do the math, I’ll do it for you: That was 50 years ago. I remember (albeit vaguely) my grandparents’ 50th anniversary, when my brother,…