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Throughout my life, I’ve felt comfortable self-disclosing to schools and employers that I have cystic fibrosis (CF). Self-disclosure — defined as “the sharing of personal information with others that they would not normally know or discover” — has allowed me to claim agency and decide what I want shared…

In my life with cystic fibrosis (CF), the antibiotic tobramycin has saved my life countless times. But 15 years ago, it took something from me that I’ll never get back. Toxicity from the drug permanently destroyed the tiny hair cells in my inner ear, leaving me with vestibular…

A few days ago marked what would have been my sister Alyssa’s 37th birthday. To pay homage to her this year, I’m reflecting on what it’s like to have cystic fibrosis (CF) myself as well as a sibling with CF. When people learn that individuals with CF are advised…

Living with cystic fibrosis (CF) and a double-lung transplant often feels like inhabiting two worlds simultaneously. There’s the extraordinary world, filled with medical miracles, precisely managed medications, and a body that has defied more statistics than I care to count. Then there’s the ordinary world, where sometimes all I…

Have you ever been asked why your parents didn’t undergo prenatal genetic testing? During a hospitalization for cystic fibrosis (CF) in my early 20s, a nurse asked my mom this question right in front of me. I rolled my eyes because I’d heard it before, although it didn’t take…

Hope is something I have often reflected on throughout my life. In fact, my first tattoo was of a Latin phrase commonly referenced in the cystic fibrosis (CF) world: “Dum spiro spero,” which means “While I breathe, I hope.” But my perception of that phrase has changed over…

Once upon a time, in a small town where laughter mingled with the scent of blooming flowers, I became a parent. My daughter, Jasmine, was born on a sun-drenched day in August, a tiny bundle with curious eyes and a spirit that sparkled like the stars. Little did we know…

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,…

The benefits of being in nature are well-documented. There are the physical benefits, such as improving blood pressure and immune activity. And then there are the mental benefits, with people spending time in nature seeing reduced rates of depression and anxiety and increased vigor. These findings don’t…

“You smell sick. I literally can smell the Pseudomonas.” I was a young teenager, and in classic teenager fashion, Mom’s comment aggravated me. For one, no teenager haunted by puberty’s horrors warmly welcomes a parent’s wrinkle-nosed remark about odor. Second, in all my stubborn, hormone-raging years, I worked hard to…