Columns

The other night, I was out at Barnes & Noble with my dad. As we went to grab a table in the coffee shop area, I ran into an old friend and spent a few minutes talking with him and his friend over by one of the store’s…

A year or so ago, I came across a zine on Tumblr that was all about being “raised by the internet.” It was an interesting, enjoyable read, so naturally, I reblogged it, only to lose the original post in one of many archive cleanings. But…

Over the years, we’ve trained a few people on how to care for Ella. We have to show them how to stop and start her feeding pump, disconnect and connect the feeding tube to her G-tube button, lift her from her chair, take her…

November is a pretty jam-packed month for me. I’m working on a book project for the annual NaNoWriMo contest, juggling two separate podcasts, getting ready for the North Carolina Comicon. And on top of all that, I start my Spinraza injections a week from…

I survived my interview! Funnily enough, we never even got to voice/video chat. My interviewer — the director of the entire mental health counseling program, apparently (cue me, having a mild anxiety attack) — asked me right away if we could conduct…

Let’s start this column off in the most real way possible. I’m weird. And I’m not afraid to let everyone know. I’m not talking about my weirdly disproportionate head-to-body ratio or that I have an arm that weirdly resembles that of a chicken wing. No, the weirdness I’m…

Kids and adults alike love to ride bikes. Exercise, travel and autonomy sprout from the experience. For a person with SMA, the experience easily can elude them. Their legs aren’t strong enough to move the pedals, their balance isn’t sufficient to master the task…

Green Arrow costume, image provided by Kevin Schaefer October is one of my favorite times of the year, and not just because it’s my birthday month. Call me childish, but I never grow tired of the creative Halloween costumes, the festivities, scary movies and the buckets…

I have always struggled with my voice. Spinal muscular atrophy (SMA) causes muscle degeneration and weakness. In this case, it means that my voice is quiet. Soft. And not just my voice, either. People rarely notice when I sneeze, because it’s such…

The trip to downtown Chicago takes but an hour for us, as we make our biannual trip to Lurie Children’s Hospital for Ella’s clinic. This one was an eye-opening experience. Every six months, the neurology, pulmonary and therapist team members get together…