Columns

To highlight SMA Awareness Month this August, I could go on and on describing the physical aspects of my life that occur every day. For example, I could talk about the aggressive respiratory care my mom and my nurses provide me to keep my lungs clear. Or I…

Zack and Zarek Elizondo are brothers born three years apart. They live in San Benito, Texas, where they make music and produce social media content together. Zarek has spinal muscular atrophy type 2 as did our late sister, Zarinna, who passed away in 2017. She was 18…

In a tourist shop on the coast of Lake Michigan a few summers ago, my mom spotted a sticker depicting the town’s lighthouse in the style of my favorite painting, Vincent Van Gogh’s “The Starry Night.” She suggested that it’d look cool on my power wheelchair,…

Connie Chandler is a social media manager and writer from Fort Wayne, Indiana. She has spinal muscular atrophy (SMA) type 2 and works alongside her brother for the nonprofit We Carry Kevan. As an adult who has grown up with SMA, I’ve learned the necessity of being my own…

With August officially here, I feel like I’m in a competition with time, frantically trying to make the most of summer before it’s gone. In doing so, I’m putting unnecessary pressure on myself. I’m measuring my days by how much I took advantage of the warmer weather and beating…

“It’s just a flesh wound.” The black knight utters this famous line in “Monty Python and the Holy Grail” after losing both arms in battle. He then continues to fight in a slapstick manner and taunt his opponent as blood gushes out of his sides. Ah, I…

I was supposed to be preparing for an upcoming work trip to Austin, Texas. Instead, I was sitting in a hospital room, waiting for the doctor on call to look at the area around my gastrostomy tube (G-tube). I’d spent the past several months in a nebulous state of…

I don’t always feel helpless, but when I do, there’s a bug in my vicinity. My house has felt like bug central this summer, and I’ve strongly considered moving out. OK, the latter half of that sentence might be an exaggeration. However, given that spinal muscular atrophy (SMA)…

The digital age has transformed how we connect, empowering people like me to engage with the world from anywhere. My tech obsession ignited around age 14 with the thrill of my first Nintendo DSi. Despite needing creative positioning for myself and my device, I was instantly hooked,…

We’ve lived almost 29 years in a rural area in the glorious mountains of North Carolina. Simply looking out the window is a favorite home pastime. There, both comedic wild critters and a reposeful setting beckon, and I’m never disappointed. One of my favorite treats is a full moon…