A few weeks ago, I started writing about the U.S. Centers for Disease Control and Prevention (CDC) director’s ableist comment, in which she claimed that masks are the “scarlet letter” of the pandemic. But something about burnout or writer’s block kept me from getting the words in by my…
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,…
I’m just going to come right out and say it: I don’t want to write about being chronically ill this week. Specifically, I don’t want to be chronically ill this week. I know this isn’t revolutionary; what person grappling with cystic fibrosis and related diabetes, and all the…
At my pediatric pulmonologist’s office, an anatomical diagram of lungs in the silhouette of a child, complete with labeled cross-sections of bronchi and cilia, hung on the back of each clinic room’s door alongside ads for different brands of inhalers. Above the speckled gray tables, children’s art hung on the…
About 10 years ago, I interviewed my pulmonologist for a speech class I was taking. I asked him if he thought there’d ever be a cure for cystic fibrosis. He responded with an emphatic yes; not only did he believe there’d be a cure, he believed we’d both live to…
It doesn’t snow much here in my home state of Alabama. It’ll just get cold enough to shock the system with wildly fluctuating temperatures. It gets warm in February, and the flowers will think about blooming; in fact, my mom’s daffodils are blooming right now. But with the vernal equinox…
“Do people with cystic fibrosis really call themselves ‘CFers’?” a friend once asked. “Some do, some don’t.” I told her about the shorthand terms I’ve seen used in the community, such as “cysters” and “fibros.” Personally, I’ve always appreciated those monikers for their playfulness, which among many…
Every time I tune into the local or national news, I see another story claiming that everyone will either get or be exposed to COVID-19. And over the holiday break, I learned that five friends — who all had been taking precautions seriously — have contracted…
With the new year looming around the corner, and my school semester crawling to a close, I want to set my sights on all the things I’d like to do next year — attend my first in-person live event since the start of the COVID-19 pandemic, travel to…
This week, the university I both attend and teach at returns from Thanksgiving break, and I’m coming to terms with the realization that I’m afraid of the coming holiday season. This isn’t a new phenomenon; I’ve had a lot of bad luck in my life at the holidays. When I…
I don’t remember why I said what I said to the little girl I had just met on the playground. “I have something called cystic fibrosis.” Maybe I was coughing or short of breath. Or maybe we were exchanging secrets in the tunnel bridge. I don’t remember what game we…
While the world could be more accommodating to people with disabilities, I’ll admit I feel guilty that I’m allowed to register for my college classes 48 hours before my nondisabled peers. This priority access is available to any disabled student, thanks to the Americans with Disabilities Act (ADA),…
“Do all my friends hate me? Or do I just need to get some sleep?” Stand-up comedian John Mulaney’s punchline cuts through the hum of nearby tree frogs. The light from the TV casts a blue glow on my apartment’s white walls, and the volume is set to a whisper…
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