Crying at a random gas station in rural New Hampshire was on my long list of things I thought I’d never do. Yet, there I was, two hours away from home, coming undone and growing angrier than ever at a disease that was beyond my control. I’ve been…
Columns
In my last column, “Meticulous or Ridiculous?”, I mentioned that I was traveling to Eugene for the Oregon football home opener. It’s a trip I’m used to because I’ve made it seven years in a row. What I didn’t mention was that I was also going to…
Ella Gets a New Wheelchair
A loud horn. Headlights and backlights. Hazard lights. Turn signals. Tilt features. Ella’s new wheelchair has arrived! We’ve been waiting for her new chair for one to two months now — and it’s finally here. It goes faster than her old chair…
Yep, I’m going there. If you’re easily turned off by poop jokes, just skip this column. SMA is tough, but diarrhea causes me pain and discomfort unlike anything else. When my body experiences this ungodly phenomenon, I want nothing more than to be…
Classes started yesterday. My third semester of graduate school, which is a little weird to think about. It feels like I just started; like I just graduated with my bachelor’s in psychology. People kept asking me if I was ready to go back, and while part…
Between back-to-school commercials, first-day-of-school posts, and college-move-in-day pictures, this time of year always has me reminiscing about my days as a student. Although I am no longer shopping for notebooks and binders and figuring out if any of my friends are in my classes, the memories of these…
I’m not exaggerating when I say that SMA requires you to plan ahead for everything. If I don’t carefully coordinate each day with my caregivers, I can’t even go to the bathroom. Fortunately, I usually can plan for a daily occurrence like that, but other things are more complicated…
Ella watches Henry go out with his friends. They start at one house and easily move to another while riding bikes, walking, or riding their scooters. Ella gets jealous. She wants to be able to go to a friend’s house and play, too.
In most superhero comics, movies, and TV shows, there’s usually an arc at some point in which the hero temporarily loses his or her powers. This happens in “Spider-Man 2,” “Supergirl” (season two), the first “Thor” movie, and in issue 12 of the comic book crossover “Crisis…
I Was a Victim of Comfort
It’s difficult to fit in when you have SMA because you are one of a kind. The reality is I’m never going to fit in perfectly anywhere, but I haven’t done myself any favors for most of my life, either. In my younger years, I didn’t have problems with fitting…
Recent Posts
- When an SMA diagnosis makes a headline — and when it doesn’t
- Nothing prepared us for the SMA diagnosis of our surprise baby
- Why Universal Studios Singapore didn’t feel inclusive for me
- Promising mouse study lays foundation for first gene therapy trial in SMARD1
- The ‘boondledorf’ and ‘moots’ that make up my winter survival guide
