Advocacy and Abnormality – a Column by Kristin Entler

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 was lucky to grow up with a lake in my backyard. On quiet mornings, the water would lap a steady drumbeat against the seawall. Yet despite being raised next to a body of water, I never learned how to swim because of the environmental risks I faced with…

This time of year, the cicadas at my parents’ house are loud enough that their siren call leaks through the sound of the morning news on TV. When I walk out onto the back deck, their buzzing seems to fill my bones. Then the heat hits, even in the early…

It’s the night before another pulmonary clinic appointment with my cystic fibrosis (CF) care team, and my brain fights against sleep. It’s a phenomenon familiar to so many of us with chronic illness: medical anxiety. Nothing is wrong; I haven’t been experiencing new symptoms. The last round of…

A few weeks ago, in a remote corner of North Carolina, I turned 30. My parents and I were staying in a rental cabin surrounded by towering tulip poplars and majestic oaks. Situated in a corner of a property aptly called Firefly Cove, we excitedly waited for the sun to…

There’s a myth out there that “a healthy person has a thousand wishes, but a sick person has only one.” As someone with cystic fibrosis (CF), I’ve never had a body I could call healthy. At my sickest, I was bedbound for weeks at a time, unable to breathe.

Note: This column describes the author’s own experiences with various vitamin supplements. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. My hair has been falling out. It’s most obvious in the shower, when I’m rinsing away shampoo and conditioner…

“It’s been over a month and I don’t feel right,” I tell my mom as we’re making dinner. She’s mixing Caesar salad dressing and Parmesan cheese into the fresh lettuce I bought from the farm stand. I rub my rib cage where it’s sore, then slowly lift my arms above…

The other morning, I was startled awake by the sound of my insulin pump screaming for me to change a part of my infusion set. That happens regularly with my Omnipod system, which I use to provide insulin for my cystic fibrosis-related diabetes. Omnipod sets off an alarm…

This past spring, before graduating from my Master of Fine Arts (MFA) program in creative writing, I had one last meeting with my adviser. We connected via Zoom as I sat on my back porch in North Carolina while he sat in his office back in Arkansas. That’s when he…