Columns

In my journey to make sense of the world of work while having a life-limiting illness, I have often wondered, “What does it look like to be a leader with CF?” To help answer that question, I spoke to Rob Bates, a creative director from London.

The night I received my first Hill-Rom Vest — at age 5 — was a fun one. It was a beast of a machine in the mid-1990s, a white box weighing maybe 50 pounds. Large, plastic, hollow coils connected the machine to a bulky, black vest, which fitted around…

I have a theory: All truly sick people have mental illness. I’m not saying that people who have physical diseases are crazy. (Although some of us may or may not be convinced that Jack Black is the sexiest man alive, but I’m not naming names.) Yet, I do believe…

What qualities does it take to start your own business? Grit, determination, capital, and a good idea will surely all help. Good health is rarely included in the list of qualities needed for wannabe entrepreneurs. That’s because it’s a given. But what about those…

When we say “me” or “I,” what exactly are we referring to? Are we referring to our bodies, our minds, or the combination of the two? It’s both a scientific and philosophical question, who we are. In a casual manner, we often speak in the first person when referring to…

The worst thing about being a writer is being unable to escape old drafts of yourself. Would you believe that the photos you see here were taken on the same day? (See also the Facetune skills, circa 2015, that have since been forgotten.) (Courtesy of Bailey…

The cystic fibrosis (CF) community was in an uproar during the lead-up to the release of the film “Five Feet Apart.” Viewers had many reactions, such as the following: “It glamorizes our disease.” “There should’ve been more involvement from the CF community.” “But it creates awareness.” In this column,…

Growing up, I was lucky to attend school almost entirely uninterrupted by cystic fibrosis. I didn’t see the inside of a hospital for more than occasional appointments until I was 19. Until then, I saw no reason to do anything differently than the people around…

There’s a rattle in my chest when I inhale. I sweat and dig my nails into my palm. I feel it, microseconds of dread and fear as the rattling gives way to something like the plugging and unplugging of suction cups in my airways. That quickly escalates into a “cough…

I can remember the day I discovered the truth that I had already suspected in my heart: cystic fibrosis (CF) is a life-shortening disease. I’m just old enough that I couldn’t Google whatever I wanted to at the time. I learned this information from a calendar sitting in my CF…