I was a conscientious student, highly motivated to excel whenever possible. My father was a public school teacher and later a principal at the elementary level. My mother taught piano at home. Neither parent browbeat my younger brother and me into obsession over schoolwork (or, for…
Columns
I once read that fear is the other side of the coin to excitement, pleasure, or comfort. Without any research into whether the statement is true or false (it’s true), I nodded and said, “That makes sense.” Why else would people seek out horror films, roller coasters, even kink?…
In my favorite movie of all time, “The Princess Bride,” there’s a scene I love because I can relate to it and have learned a valuable life lesson from it. And today I’m going to share it with you. The three heroes are on the castle…
“Don’t worry, we all got the Alyssa lesson before we started working here,” the new fellow joked after having completed his second nasojejunal (NJ) feeding tube exchange on me. Though everyone in the room had a good chuckle, there was also some validity behind it. Given my scoliosis, hiatal hernia,…
Anyone can experience ironic twists and turns in life, and those of us with SMA are no exception. In my previous column, I wrote about how my mom and one of my day nurses heroically saved my life during a medical crisis. Coincidentally, the nurse who helped save…
I recently got a new wheelchair! Thanks to the good folks at Numotion, I’m happy with the upgrades, including a new seat cushion, a phone holder, and headlights. My friends have been asking me what it’s like to be in a new chair, and I’d say it feels like getting…
Life for our family has never been dull, but after our fortuitous move to the North Carolina mountains, “never dull” acquired new meaning. A blizzard hit a week after our arrival, flying squirrels gnawed their way into our dining room, and snow kept students hunkered down at home at least…
“I’m feeling a bit Muppety today.” It’s an adjective I made up for myself years ago (meaning “like a Muppet”) because there are just some aspects of having a neuromuscular disability that are hard to describe and explain. But as they say, if you know, you know. Consider the…
The new “Superman” movie features talking robots, giant monsters, interdimensional portals, and a crowd-pleasing, super-powered canine. Multiple heroes and villains factor into the story, and the action sequences involve a plethora of CGI-heavy special effects. It’s a big and fantastical summer blockbuster, the kind of spectacle that the superhero genre…
I live with spinal muscular atrophy (SMA), a condition that, in my case, makes it impossible for me to move my body on my own. But that’s not where my story begins — or ends. People often call me strong, but they rarely see the whole picture. They don’t…
