Columns

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…

When I first met my lung transplant surgeon, she remarked that cystic fibrosis patients have a great post-transplant life expectancy because we tend to be best prepared for it. We know how to shovel pills by the handful into our mouths two to three times a day.

Having cystic fibrosis makes life sometimes stressful, sometimes lonely, sometimes painful, and oftentimes scary. But it can also make life seem more valuable, brighter, more optimistic, and more fun. Figuring out how to balance the good and the bad, and come out from tough situations on the positive end can be challenging,…

Military hospitals handled most of my cystic fibrosis (CF) care. Many members of the military worship pain (“Get some! Rub some dirt in it, hooah!”), and assume you do, too. CFers inevitably encounter intense pain throughout the treatment of their disease.

Kathleen belaying Brad as he climbs. Not quite near the top yet. (Courtesy of Kathleen Sheffer) There are times I feel especially mortal. Such as when I’m feet from the top of a rock climbing wall, and I realize I’m relying on a single rope…