Columns

Nonambulatory young adults with spinal muscular atrophy (SMA) who have contractures  — when muscle and connective tissue around a joint become short and hardened — do not feel significantly hindered by these in their daily lives. Despite contractures in multiple joints, they do not perceive them as a…

“This is probably my favorite part about having a feeding tube,” I said to my mom as a phlebotomist pierced my vein with a needle. Since becoming tube-fed, I’ve become more hydrated. And since becoming more hydrated, I no longer need to be poked and prodded every time I…

Hi, friends. It’s been a minute since I’ve written to you. Some of you are well acquainted with me, while others are just beginning to peek into the window of my life as I put pen to paper. Yes, I know this is a digital age, but my love…

Unlike most days when I draft my column, I had this one all figured out. Recent brain sparks of potential topics provided me with such confidence. I plopped down at the computer earlier than usual on Sunday to tend to a few odds and ends before getting down to…

My 6-year-old niece, Lily, made an astute observation while we were waiting in line at Disney World to get a picture with Daisy Duck. “Is that a person in a costume?” In a place designed to capture the imaginations of children, leave it to Lily to break the spell…

Makeup and I have had an on-again, off-again relationship over the years. We were introduced when I was a kid. Though I don’t remember much of my childhood because of relational and medical trauma, I do vividly remember my mum taking me to buy lip gloss when we were…

Every disabled person, including those with SMA, has likely received the well-intentioned compliment of being told they’re inspirational, but it’s not a label that everyone is comfortable wearing. This fact leads me to wonder why. Who should we take inspiration from, and how should we communicate it? We…

When I was a little girl, my parents would take my brother and me to Cape Cod, Massachusetts, for family vacations. Those memories have always been so dear to me. We’d pack the car full to the brim with bathing suits, beach toys, and, of course, all my…

The COVID-19 pandemic made it more difficult  for many people with spinal muscular atrophy (SMA) to access needed healthcare, a study highlights. At the same time, the pandemic prompted new approaches to facilitating care and running clinical trials, such as the widespread adoption of telehealth, which brings health…

When my back is to the wall and a crisis is coming to a head, that’s when my life really gets interesting. There are no more long waits to see if something will happen; instead, something has to happen. The way I see it, human intervention usually occurs, but…