Columns

What Does It Mean to Be ‘Normal’?

A strange reality of living with cystic fibrosis (CF) is that we’re usually the only person with the disease we actively, directly engage with, aside from maybe siblings. The many aspects of routine CF care — preparing medications for the week, reconstituting antibiotics, Vest treatments, sterilizing nebulizers, IV antibiotic administration,…

7 Ways to Cherish Your Quality of Life

Friends. Today, my message is simple. Your quality of life matters. Quality of life is integral to physical health Inevitably, you will face trials that require quality of life sacrifices for survival. “Sacrifice” is a carefully chosen word, in the way one might sacrifice a legion to win…

The Claire Wineland Message I Hope We Never Forget

The passionate outpouring following Claire Wineland’s devastating passing last week has exemplified the influence she had on her friends and family, the cystic fibrosis community, and the millions of strangers she inspired. She was incredibly loved and admired — that was so very apparent. I’m sure you can agree…

The 4 Deaths that Mold Me

Winter 2016-17: Sabrina Santos We called each other twins. Sabrina, like me, was a nerdy, faithful, coffee-loving journalist. She also had cystic fibrosis, Mycobacterium abscessus, deafness, and an urgent need for lung transplantation. Unlike me, she was fearless. Sabrina wielded titanic power. Her radiant eyes could shatter…

Grieving in an ‘Always Online’ World

“So right now we live on borrowed time, I don’t know how long or what is to come in the next few months.” My sister Alyssa posted this sentence in a Facebook update when we learned that no options remained for her chronic rejection after a second lung transplant.

My Hospital, That Torturous Refuge

“Ahhh, so lucky! Enjoy your vacation.” Many people thought hospitalizations were times to sit around and cruise the internet; get treated like royalty and served wine. (Nah, I only got rubbing alcohol.) The response was rarely, “I hope you feel better,” or, “Let me know if I can…

A Plan for a Healthier Season in Parenting

This weekend, my son, wearing a tiny crown and old man suspenders, blew out the candle on his birthday cake. It was beyond adorable and tugged at my mama-heart in the saddest way. The blown-out candles marked the end of my first year as a parent. As I’ve written before,…

Disease Fatigue Is Not the Same as Laziness

I come from the generation of “Netflix and chill,” except for me, it wasn’t a sexual innuendo. My college life consisted mostly of watching Netflix and chilling; sitting on the couch with my girlfriend at the time, and binge-watching TV shows. I was known for being a successful…

I Have Cystic Fibrosis, and CF Has Me

I hear others say “I have CF. CF doesn’t have me.” This may be an accurate statement for some, the small percentage of patients who are not limited by this disease. Those who climb mountain peaks, work 60 hours a week, and raise three children. They could say…