Columns

There’s a trend taking root in the SMA and disability communities that has me worried. It’s the idea that to gain independence as disabled adults, we must separate ourselves from our support networks and find ways to manage our lives and healthcare on our own. Society…

On Sunday, I climbed another mountain, and I’m giving a prayer of thanks and saying, “Hip, hip, hooray!” Why? Because I had my 42nd birthday on July 7. It’s a high moment for me because I’m now 40 years beyond the life expectancy I was given as…

“The Sound of Music” isn’t just a beloved movie of mine. Growing up with an extraordinarily gifted musician mother, the sound(s) of music usually graced our lucky home. In her younger days, Mom performed numerous two-piano classical concerts with her oldest sister. Additionally, she frequently accompanied…

If you’re a soccer fan like me, I imagine you’re thriving at this time of the year. Because I grew up in a proud Portuguese family, the sport is a huge part of my culture. If I didn’t know better, I’d even go so far as to say that…

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…