A few days ago, I found myself strapped to an operating table while a radiologist injected a needle into the side of my neck. From there, I felt a tingling sensation in my body as a specialized spinal fluid flowed throughout my insides. All the while a…
I’ve been having a lot of headaches lately and, naturally, my anxiety had me convinced I was going to die of a brain tumor. I knew, of course, how improbable it was. Every article I read — and I actually read quite a few —…
Well, friends, today’s column is going to be unlike what you read here most in my little corner of the internet. That’s because this column is brought to you by endless fluids, antibiotics, steroids, and a nasty respiratory infection that is most likely walking pneumonia. Ah, yes,…
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…