Columns

I was repulsed by my body. My arms were scarred and barren of muscle, thin as twigs. They hung from a bumpy, pale torso — bumpy from the ribs that protruded, the port-a-cath that sat beneath pockmarked skin, and the rubber feeding tube above my belly button.

FOMO. Fear of missing out. Ever heard of it? I don’t have a lot of phobias. Yeah, being alone in a dark room creeps me out, but I’m not afraid of needles, heights, snakes, public speaking, or even dying. When my boyfriend and I get…

Gaining weight can be just as difficult as maintaining lung function for many with cystic fibrosis. Most have heard people without CF joke that they wish they had our problem with gaining weight. But for those who experience the struggle of malnourishment and unstable weight, we know…

This afternoon, while browsing the fiction shelves at a local bookstore, I saw my own ghost. As I turned over a colorful paperback copy of Meg Wolitzer’s “The Uncoupling,” a small, optimistic cough flew past my left ear. At first, one. Then…

I’ve seen videos of people with cystic fibrosis, messaged other patients on the internet, and knew some as a child. But since the early years I barely have any memory of, I haven’t verbally spoken with a CFer. I had a phone interview today. The interviewer kept…

While making small talk with a friend last weekend, I asked what she had done that day. She shared that she had gone to class, worked in her professor’s research lab, and hung out with another friend — all before our conversation at 4 p.m. “Dang,…

I crawled into my closet and pulled out a dusty, battered Ultimate X-Men: Vol. 1. Sunray slivers peeked through the slightly-ajar door, lighting sections of the comic book as I read beneath my jackets on their hangers. I was in 10th grade and had just lost the…

Twenty-four years of living with cystic fibrosis allows for a plethora of learning lessons — mostly through mistakes I’ve made. There are many things I wish I had done differently regarding my health to improve the effectiveness of my treatment. If I knew then what I know…

Cystic fibrosis (CF) is unpredictable. Some days I feel like I can run my fastest personal mile, and on others I feel like I’m staring at the treadmill waiting to hit my goal distance. I’m a person who likes to find patterns in things — from patterns…

Many label their lives with cystic fibrosis a “battle.” I prefer “war.”* There’s the daily grind: The clinic visits are strategic meetings. The treatments are patrols. The two-week antibiotic courses are skirmishes. Then there are the defining moments of the war — the brutal flare-ups when bacteria or…