There comes a point in every SMA patient’s life when someone asks, “Why are you in a wheelchair?” I like to think I’ve gotten pretty good at answering that question. I’ve done the research; I’ve looked up all the scientific terms; I’ve been through my fair…
Columns
I came up with the idea for this column at 5:45 a.m., when I’m usually just falling into a deep REM cycle. (Sleeping has never come easily for me.) I wish I could say I was up at that ungodly hour (mornings also never come easily to…
A couple times now I’ve touched on my surgery that didn’t happen at a hospital in Portland, Oregon. It’s an experience that was highly relevant to life with SMA and the therapy Spinraza, so it tends to jump to the forefront of my mind for column…
Ella is 8. Caring for her is a team effort: Dressing, bathing, toileting, and transferring are some of the tasks Ella needs help with. Alongside this physical assistance, Ella, like every child, needs support with her mental and emotional growth, confidence-building, schoolwork, and character development.
As a kid, I was notorious for dropping my cherished action figures on the floor. Instinctively, I would turn to my older brother Brian to pick them up for me. A little irritated that I had interrupted his marathon viewing of SportsCenter and “Cops,” he had…
There are, in my experience, two kinds of depressive episodes. The first leaves one lifeless and frowning. When I’m that kind of depressed, I watch “Critical Role“ while scrolling through Pinterest, or berate myself for not doing something productive while…
One of the most frequently asked questions I receive from readers, friends, and even family members, is how I physically write my columns. The evolution of my ability to write has changed drastically over the years. I will try my best not to bore you with the nitty-gritty details, but…
For most of my life, summer was my favorite season. I’ve never been a fan of school or frigid temperatures, both of which are absent during the summer. Once I graduated from high school, however, summer no longer held first place. Over the last few years, fall has…
I went to Barnes & Noble by myself while my mom went to dinner with a friend. I go out unaccompanied quite often, which requires a little extra effort on my part. When alone, I have to make sure I can maneuver my chair and…
I’ve done some arguably ridiculous things over the past two decades in the name of health. I’ve had metal rods surgically implanted in my back to keep my spine from curving. I’ve had tubes shoved up my nose and down my throat. I’ve driven to the…
