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…
Advocacy and Abnormality
— Kristin Entler
Kristin Entler was diagnosed with cystic fibrosis at 6 months old, and first came out as LGBT+ several years after her diabetes diagnosis at 12 years old. She currently serves as poetry editor for NELLE, as access coordinator for Open Mouth Literary Center, and lives with her service-dog, Azzie, whose name is short for the Greek god of medicine. Entler can be found on most social media platforms @findmycure. She hopes her column “Advocacy and Abnormality” is a space for inclusion and solidarity for anyone living in a body that is often seen or treated as different.
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The University of Alabama hospital wing that houses my cystic fibrosis (CF) clinic always reminds me of an airport. The main hallway has signs overhead that direct everyone toward different “terminals,” and by 10 a.m., the place is always swarming with people. Patients have myriad chronic illnesses, some apparent,…
“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…
I’ve been thinking about the weather and how it affects the body. Despite all the beauty that April brings, the warmer weather that signals to the flowers and trees that it’s time to bud again, spring is my least favorite season because it’s the time of year when my sinuses…
“Go, go, go!” my nurse says while coaching me through my pulmonary function test (PFT). I’m pushing air into a mouthpiece that’s connected to a computer with a robotic arm that moves up and down to adjust for the height of the patient using it. My right hand grasps…
It’s Friday, and after a long morning of stressful clinic calls that included coordinating appointments, negotiating a telehealth option amid the ongoing COVID-19 pandemic, and asking for and hoping a prior authorization drops on my Trikafta (elexacaftor, tezacaftor, and ivacaftor) before I need the refill, I decide I deserve a…
The rain comes down hard. From my bed I can hear the wind stirring up leaves with its warm air and white noise. Even though it’s morning, it’s not bright. The Omnipod on my arm, my insulin delivery system, beeps its loud and obnoxious tone, letting me know it…
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