Columns

This column was my first official writing gig. I started my blog almost three years ago, but my posts were inconsistent and didn’t have a clear voice. “Mutations & Conversations” provided me with a space to write about the many facets of life with cystic fibrosis (CF) without…

I’m going to say something many people won’t like: I struggle with the word “disability.” In the eyes of society, I am technically “disabled,” but that doesn’t stop me from struggling with the term. If it isn’t illness keeping me in and out of the hospital (consistency is not my…

Last week, I was invited to speak to the Cystic Fibrosis Foundation to discuss my personal experiences with cystic fibrosis (CF). Coincidentally, my speech happened to fall on the anniversary week of the beginning of this column — which has been critical to the development of my skills as…

There are a lot of things I haven’t done. Things the internet says I should. I’ve never announced a pregnancy to overjoyed family members. Instead, I was a junior in college and scared out of my mind. I’d always wanted to be a mom, but I found myself crying on…

When I met Alexander, he was thin, his nose bled a lot, and he had tubes in his ears. I was a lonely first-grader fresh to Hawaii, and just as thin and malfunctioning as the brother I didn’t yet know. How could I ever adequately thank the teacher…

In the days after I got new lungs, I’d pray for the healing to move faster so I could get on with life. I’d stand in front of a mirror and stare at the transplantation scars that cracked my chest as they shifted from blazing red to…

“There’s no other way to paint it. I’m in pain. That’s my life. And no one can help me.” That was what I texted my husband after the third day of injustice from my biliary system. For the past few weeks, I’d deluded myself into thinking that what I…

Few phenomena fascinate me more than human happiness. So often we get caught up in the idea that we would be happier if so-and-so happened. I’m sure I won’t be the first to tell you that the grass ain’t always greener on the other side. This idea is known as…

We need to talk about pain. Growing up, there was a clear delineation in my mind: Cystic fibrosis (CF) could be painful sometimes, but it wasn’t a disease that caused constant pain. It was almost a mantra in my mind: “At least I’m not always…

At night I lie awake and I worry about you. I worry if you’ll drive home safely that night. If the ache in your chest is really a ticking time bomb, rather than a proton pump inhibitor problem known by most. I worry because I love, and I love…