Advocacy and Abnormality – a Column by Kristin Entler

There’s a video buried deep in my phone’s memory from seven years ago. It shows me driving on the Blue Ridge Parkway in the summer, the leaves full and making a canopy of shade over the road. The moonroof on my Honda, the car I still drive today,…

A pod of pelicans flies over my head, then out over the ocean waves, where they skim the surface of the water. One in the middle of the mass pumps its wings, and the formation follows suit like a ripple effect in both directions. I’m struck by the gracefulness it…

The divers are synchronizing, the skateboarders are grinding, the gymnasts are flying through the air, and like so many others across the world, I’m sitting firmly in front of my TV, taking in all the spectacular feats of human capability. Growing up, I remember going to the clinic every three…

“We could go to the beach,” my mom says as the two of us sit on her screened-in porch in Alabama. It’s spring break, and because I’m picky about who can stick me with a needle, I’m at my parents’ house to get my port flushed by my regular nurse.

“When can we get out of here?” my mom asks the group of doctors on their daily rounds. I’m in a hospital bed, tape tugging at my skin as a nurse unhooks me from an IV antibiotic. While she presses buttons on the machine, I reach over to the…

Note: This column describes the author’s own experiences with Orkambi, Trikafta, and Symdeko. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. In December 2019, I was working through my final year of a master’s degree in creative writing. Most…

If you’ve been keeping an eye out for a new column of mine, even noticing the gap between my last column and this one, you might’ve seen that I’ve been absent from this website for a few months. I didn’t go AWOL. I did tell my editors when I…

“You don’t sound so good!” my dad says to the family Shih Tzu, Jasper. And my dad’s right: The little dude (as we affectionately call him) doesn’t sound great. “He’s been coughing on and off for a while now,” my mom chimes in. But for the past few…

“You’re such an inspiration!” the customer across from me said. I was standing behind the mosaic counter of the art gallery where I volunteered during my teenage years. Hearing this person call me inspiring made my stomach turn. I’ve always hated being called that. My mom, who is the president…

In fourth grade science, we were learning about the research process, starting with the brainstorming stage. My class was assigned to pick a topic from our textbook and report on it, complete with a short oral presentation. I pitched a project on cystic fibrosis (CF). An often-outspoken classmate piped…