Columns

“Ella, you were at a bar?! I thought you were going to the hospital?” I received this perplexed (and perhaps skeptical) text after I posted a picture to social media of me at a local brewery for a cystic fibrosis-related fundraising event. I was smiling with a group…

Dear “How are you feeling?” folks, Those of us with a chronic illness hear repeatedly — and secretly dread — questions such as the following: “How are you feeling? How have you been doing? Are you feeling any better? Are you hanging in there?” We try to smile and reply…

I gaze through a frosted window on a mountaintop near Lake Tahoe. It’s a church youth group retreat. The students play in the snow, sledding and laughing. I’m sipping Earl Grey while scrawling notes into a journal — combined with snowfall, it’s a recipe for sentimentality. I glimpse…

Growing up with a terminal disease, it was not a secret that one day I would become disabled. What I didn’t expect was how messy the process would be. There’s no handbook or guide about how to become disabled. It’s not as though one day you wake up…

It was unlikely that my parents would bear two children with CF. When both parents carry a CF mutation but don’t have the disease itself, there is a 1 in 4 chance that a child will have CF. To determine the likelihood of two events independent of one…

Editor’s note: This column discusses suicide. Sometimes, the day is raw, a knife grinding round and round and round in my gut. The day also almost feels like fiction; a thing I’d prefer to fade into my life annals among the other bad things, mere pen strokes that have long…

It’s hard to understate the benefits of exercise for healthy people, let alone people with CF. According to the Mayo Clinic, some of these benefits include: It controls weight. It combats health conditions and diseases. It improves mood. It boosts energy. It promotes better sleep. All of these…

“Alcohol gel like it’s going out of fashion.” “Giving the stink eye to the colleague who came to work with a cold.” “Hot tea with six cloves of garlic, crushed, and five rotations under a full moon.” Ask anyone with cystic fibrosis…

A running joke among my friends is that “Brad hates kids.” Maybe I did. I could blame that on my obsession with having adult friends as a teen — in comparison to them, children seemed so naive. So yeah, people would always find me rolling my eyes…

A couple of months ago, I did back-of-the-envelope calculations on basic CF stats. Here’s what I asked: In a year, how much time do I spend doing treatments? How many pills do I take? As I wrote last week, the spectrum of CF presentation is about as…