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Every time my phone rings and shows the hospital prefix number, my heart skips a beat, there’s a lump in my throat, and I feel paralyzed with fear. Do I answer it or let it go to voicemail? My mind races over all the things that the doctor might tell…

The Merriam-Webster Dictionary defines identity as “the distinguishing character or personality of an individual.” Having a genetic, progressive, and life-shortening disease such as cystic fibrosis (CF) can consume a large part of a person’s physical, mental, and emotional state. It can feel that the disease becomes your identity.

Prior to my double-lung transplant in 2017, I was scared of the words “palliative care.” I mistook it for hospice care and thought it meant preparing to die. I was hypersensitive about that because I was waiting on the organ transplant list. If I had known then…

Mom raised me to be a hungry reader, so it wasn’t long until I explored one of her favorite genres, Southern Gothic. Tales from this corner of the library are identified by distorted realities, eerie supernaturalism, eccentric characters, and sometimes abrupt violence. These elements are often bound together to critique…

We all know that exercise plays an important role in physical and mental health. But as someone with cystic fibrosis (CF), I believe that exercise is as vital as the medicines I take. When I was young, my pediatric CF physician encouraged my mom to keep me active.

When I was in my late teens and early 20s, before I met my wife, I would go anywhere and do anything at a moment’s notice. Staying out until 3 a.m. at a random bar on Manhattan’s Lower East Side? No problem. Watching a friend’s band play in a basement…

As I drive through the fast-food line for the third day in a row, I can’t help but feel like a bad mom. Am I really feeding my kid fast food day after day? Would you believe I’m actually trying to maintain her health by feeding her this type of…

I had an identity crisis when I turned 30. At the time, everything that had previously defined me — my health, my job, my financial independence — had been stripped from me. It felt like the rug had been pulled out from under my feet. Most 30-year-olds aren’t writing out…

They say hindsight is 20/20. Now that I’m in my 50s, I can reflect on my younger years and realize that I was trying to do too much. I was spinning all of the plates in the air and trying to fulfill every role that came my way: mother, wife,…

“Direct admission is a possibility.” These words from our daughter’s pulmonologist have been hanging over my head and lingering in my heart for weeks. Today, our daughter, Claire, is scheduled to undergo a bronchoscopy, a fairly routine procedure for people with cystic fibrosis. Based on the outcome, she may…