On Tuesday, April 2, I embarked on a noble quest. At one point, I thought I would need to summon the power of all six infinity stones to accomplish my goal. My mission was to obtain two tickets for the opening night of…
Between frequent migraines, sleep deprivation, losing significant strength in my arm and upper body, and the universal growing pains of being a teenager, my high school experience came with plenty of challenges. There was also that time I mustered the courage to ask a girl…
A few weeks ago, reality television host Dr. Phil sparked a major controversy with his statements about interabled relationships. Much like Ken Jennings’s infamous 2014 tweet, a single statement from America’s favorite psychologist led to a social media movement for people with disabilities.
From the time I was in kindergarten to when I graduated high school, I had a full-time aide accompany me to all of my classes. This person helped me with my books, took notes for me, set up my lunch, and kept me in line so…
A few days ago, I was talking with my friend Young, a fellow journalist and comic book enthusiast who now writes a column for Charcot-Marie-Tooth News. Ever since we started having conversations about our disabilities, and since I lured him…
The SMA News Today forums section of this website https://smanewstoday.com/forums/ launched in January 2018, and it now has close to 300 members. This platform exists so that people in the SMA community can connect with each other, ask questions,…
I write a lot about defying the odds and being adventurous despite my disability. I’m not keen on being called an inspiration by people who don’t even know me, but nevertheless, I want to subvert the stereotype that every person in a wheelchair just sits…
As a kid, there were two things I really couldn’t stand: math and pulmonary function tests (PFTs). I was too young and naive to have an angry fanboy mentality toward the “Star Wars” prequels. Math, however, didn’t coincide with my interests or adolescent…
I live my life surrounded by machines. I wake up every day wearing a soft nasal mask, which is connected by a large tube to my BiPAP machine. The steady flow of air pumping through the tube is the first thing I hear in the morning.
To any parent who has a child with SMA: Recently, I had a conversation with my caregiver Randy about our goals for the future. We talked about career goals, relationship goals, and all of the things we each wanted to do with our adult…
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