Columns

A Life Intimate with Death Is Not a Life Deprived of Beauty

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…

My Family Had 2 Children with CF

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…

My CF Symptoms Have Made Easy Bullying Targets

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…

My Thoughts on Exercise and CF

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…

The Burden of Care in the Life of a CF Patient

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…

Making Dreams Come True in Uncertain Times

Last week, I introduced this column to share my experiences while working with cystic fibrosis (CF): the highs, the lows, the mid-meeting IVs — those kinds of things. In this column, I want to focus on the future; specifically, the dreams that I have…

What Storm Drain Adventures Taught Me About CF Treatments

I have a story for you. In my teens, I often ditched CF treatments to explore storm drains beneath my Hawaii suburban neighborhood. When entering the concrete tunnels (maybe 15 feet in height and width), they’re so dark it feels like you’re stepping into nothing, a vortex. Many…