Columns

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 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…

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…

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…

If you’ve ever met more than one person with cystic fibrosis, it’s likely they had very different experiences than you. First, their approach likely will be different; chronic disease affects everyone differently mentally, so some are vocal and “embrace” it, while others are quieter and choose to consider it a…