Advocacy and Abnormality – a Column by Kristin Entler

I Want to Feel Comfortable Going to the Clinic Again

Because of the COVID-19 pandemic, I’ve never met my current pulmonary care provider in person, and I keep putting off my face-to-face appointment. I moved from Alabama to Arkansas for graduate school in the summer of 2020. It was the first time I lived outside my home state. I’d…

When Life Forces You to Pause, It’s Best Not to Argue

If I’m being completely honest — and when I started this column, that was one of my initial promises and intentions — I’ve been struggling lately. But complete honesty doesn’t automatically equal complete transparency, and grief is an emotion so wholly personal and raw I still don’t feel…

Turning Problems Into Solutions Requires Energy

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…

Getting a Port Taught Me the Importance of Autonomy

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…

Using the Past to Choose Hope for the Future

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…

Coping Tips for the Tail End of a COVID-19 Winter

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…

Person-first Language Doesn’t Always Matter

“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…

Making Plans Amid an Uncertain Future

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…