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…
Columns
Spare Me from Your Sippy Cup
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…
The Simple Joy of Riding a Bike
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…
Making Halloween Inclusive
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…
Strength in Time
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…
Drivin’ in the Rain
A couple weeks ago I was out with some friends from college for a trivia night at a local brewery. My friend Russ gave me a ride, and as we approached our destination the clouds covered the sky, culminating in a stormy display like something out of…
In continuation of last week’s column, here are three more things you can try that might help with depression. They’re all things that have made a difference in my life, so I hope they may be able to help you, too. Don’t…
Birthdays take on a slightly different meaning around here. At this time every year, I think about a story my mother once told me about the first birthday I celebrated and wonder how painful and heart-wrenching it all must have been for my family to process. Although I’ll…
The Middle Child
The middle child holds a special place in everybody’s heart — they’re the peacekeeper, the negotiator, the one most likely to feel overlooked. Henry fits the bill to a T. He is Ella’s older brother and Ava’s younger one, and he seeks acceptance from…
Recent Posts
- Counting my blessings during a crisis allows me to weather the storm
- Muscle ultrasound helps assess SMA in children treated with approved drug
- Honoring the proud histories of queer and disabled communities
- SMA gene therapy now approved in Europe to treat patients of all ages
- Guest Voice: What Medicaid access means to me as someone with SMA
