Columns

Nonsense can be defined as “an instance of absurd action.” That’s kind of how doctors described my cystic fibrosis (CF) mutations. It was as if my mom hit the New York Lottery and my dad hit the New Jersey Lottery on the same day at the same time. My…

As I prepare to celebrate five years with my new lungs, I’m experiencing a wide range of emotions. My double-lung transplant has allowed me to do so many things I never dreamed I’d be able to do, which brings excitement, gratitude, and hope for the future. My five-year…

My journey with cystic fibrosis (CF) has been somewhat traumatic. My diagnosis was drawn out, leading to lung scarring at an early age. My two nonsense mutations limited my pipeline of treatments, and my quick decline in lung function left me with many Sophie’s choices. Most traumatic, my…

It’s 2012 and I’m in my second year of community college. My hair is down to my shoulders and I carry a bottle of hand sanitizer attached to my backpack, which gets used by more people in my classes than I anticipated, but I’m happy to share. After all, fewer…

When I started evaluation for my double-lung transplant in spring 2015, I didn’t have any friends in the cystic fibrosis community. As I took the brave step to join Facebook groups to make connections and learn more about transplant, my eyes were opened to a whole new world. There…

In the musical “Little Women,” each of the four March sisters has an artistic talent. Jo March’s song “Astonishing,” a feminist lament about her ever-changing path toward writing, is particularly moving. It reminds me of my struggles as a woman with cystic fibrosis (CF). “I’ll shout…

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…

The song “You Two” from “Chitty Chitty Bang Bang” inspired my dream of adopting twins from a young age. To this day, I’m not sure if the kids in the musical were written to be mere siblings, but I took them to be twins all the same. I…

I spent the majority of my life trying to hide my disability, so celebrating Disability Pride Month is a bit ironic for me. Who knew that my journey with cystic fibrosis (CF) and my four years since my double-lung transplant would be something I’d want to revel in,…

As a cystic fibrosis (CF) patient and advocate, I’ve been asked to travel to multiple out-of-state events, but I’m afraid to travel by airplane. I haven’t always felt this way. I’ve only been on an airplane five or six times in my life, and most of those experiences…