Columns

I might break up with my CF clinic. It’s not them, it’s me. They are doing a good job. My CF doctor is fine. My nurses, dietitian, and support staff are really cool. And everything is basically OK. They’re nice people. It’s fine. The problem is, I’m not sure what…

Every few months, I like to take breaks from social media. Sometimes these breaks are total, self-enforced social media blackouts. I delete the apps on my phone, use another app to block the websites, and even recruit a friend to change the passwords. Social media — like other methods…

This column is about colons. Someone needs to be studying the prevalence of colorectal conundrums in people with CF and correlated diseases, especially those in their late 20s and early 30s. The number of messages I get from friends and strangers about colons is miles long (possible colon pun). They…

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…