Columns

The day I was born, the median life expectancy of someone living with cystic fibrosis was 31. Although I haven’t reached that median yet, I feel like I’ve beaten the odds. During past birthdays, my parents, brother, and I celebrated with cakes filled with raspberry layers and chocolate frosting. The…

I’m dead-beat. Bone-tired. Wasted. But I ain’t dead-dead and I ain’t lung-tired. And with my lung transplant, I guess you could say I’m recycled, rather than wasted. Maybe these jokes don’t make sense. I am exhausted, after all. My glasses are battered, and so are my shoes. I…

Mom never had to force me to eat my veggies. Matter of fact, she tried to force me to eat less of them. There was nothing quite as refreshing as coming home from a stressful day of middle school and popping open a can of black-eyed peas or a…

Editor’s note: “Path Unknown” is a new CF News Today column written by Wendy Caroline each Monday. My clinic used to hand out questionnaires at check-ins to see how patients were doing. I always chuckled to myself when I came across the question, “Do you have trouble…

Moonlight twinkled off Eagle Scouts’ accomplishment pins (earned for demonstrations of helpfulness, generosity, and loyalty) as they wound rope around my friend and me — tying it off with a knot perfect enough to merit yet another accomplishment pin. Sweaty pits and unbrushed teeth polluted lake air that…

Spring 2017 It was a historic rainfall in Silicon Valley, the likes not seen since the days of Noah and his big boat. Los Gatos Creek spilled over and the neighborhood electricity blew out — a true tragedy in Tech Titan Valley. Mom sparked candles perfumed with…

I breathed 23 years of invisible illness before retching tan-green Silly Putty into city trash bins while leashed to a bulky, wheeled, metallic canister of oxygen. Twenty-three years of rotting beneath my skin before the disease turned inside-out. All eyes were on me as I puked, a…

What is victory for us? I know we crave a cure above all, but what is attainable in the meantime? When I began this column, titled “Victorious,” I viewed victory as a single objective: positivity. Living joyfully despite this horrific illness. And yes, I still think that is…

“A childhood disease.” That’s what they called cystic fibrosis back in my day. (Man, that makes me sound old. But that’s kinda the point of this column.) A childhood disease yet we grow old so fast. Scarred souls, battered bodies. Maybe death before our…

Cystic fibrosis is a complicated disease. As patients, we are taught that mutations in our cystic fibrosis transmembrane conductance regulator (CFTR) proteins are what lead to many of our symptoms and disease trajectories. However, research has shed light on many other proteins and biological processes…