In the film “Licorice Pizza,” 20-something protagonist Alana (Alana Haim) leaps from one adventure to the next in the eccentric atmosphere of 1970s Southern California. She meets the smooth-talking teenage actor Gary (Cooper Hoffman), who’s immediately smitten with her. Together, they start a business, encounter a cast of…
Embracing My Inner Alien - a column by Kevin Schaefer
“You just gotta keep livin’, man. L-I-V-I-N.” Matthew McConaughey first delivered his iconic “Alright, alright, alright” catchphrase in the 1993 cult classic “Dazed and Confused.” Still, it’s his character’s other most quotable line in the film that is perhaps more poignant and philosophical. When McConaughey’s David Wooderson, the…
As I write this, I’m sitting in the lobby of a Las Vegas hotel. This morning, I awoke to breathtaking views of giant Utah canyons, where rock formations spewed from the earth in spectacular fashion. Just a few days ago, my parents and I were eating at a Memphis barbecue…
A few days ago, I received my 17th injection of Spinraza (nusinersen), one of several SMA treatments approved by the U.S. Food and Drug Administration. Every four months, I go to the hospital for a maintenance dose administered via a cervical injection. When I started this process…
I correspond with a number of friends and acquaintances in the SMA community on a regular basis, but mostly through social media and work. However, there is one friend I met at a conference in 2017 who is a bit of a maverick. Mike has no social media presence…
I was at a friend’s wedding a few months ago when I pondered the question of how to properly introduce myself. Typically, I give the spiel that the company I work for is a network of rare disease websites, and my job involves overseeing online communities and writing and…
I was about to wrap up my freshman year of college when I found myself absorbed in a whirlwind of emotions. Tubes surrounded me as I sat in my room attached to my Vest Airway Clearance System, a device I’d been using since my sophomore year of high school.
A friend and I were sitting in a dimly lit movie theater a few years ago when two guys in their 20s approached me. I couldn’t tell initially if I knew them, but after a closer look, I realized that neither was an acquaintance of mine. They each bore somber,…
The Netflix series “Special” opens with its main character, Ryan, getting hit by a car and thrown into an existential crisis. The accident forces Ryan, a disabled gay man who has multiple insecurities, to evaluate his identity and pushes him to reinvent himself over the course of the first…
“Hello, Peter. What’s happening? Umm, I’m gonna need you to go ahead and come in tomorrow. So, if you could be here around 9 that would be great. Mmkay? Oh, oh, and I almost forgot, ahh, I’m also gonna need you to go ahead and come in on Sunday, too,…
