It’s been a long time coming for me to write directly about my life with cystic fibrosis in a body that gives me no choice but to balance illness with society’s definition of a normal life. I am here, in part, to be honest, and to find connection within that…
Columns
Most cystic fibrosis (CF) patients are admitted to the hospital for “tuneups,” which are hospital stays meant for IV antibiotics and additional treatments. CF patients are known for having frequent respiratory infections, and tuneups are done either proactively or reactively, based on a patient’s needs. Some patients have more…
What you read here is a lie. I don’t always know what life looks like from the outside in, but I know that most of us can never tell what’s really going on in someone else’s. Even when we share a lot online. Even when we write a…
The Benefits of Being Sick
Prior to my double-lung transplant three years ago, becoming deathly sick allotted me time to slow down. I shifted my perspective to what I could do during this time. I focused my energy on what I could learn because I knew this season of opportunity wouldn’t last forever. The…
A funny female pediatrician named Dr. C diagnosed me at age 5. After years of Mom begging doctors to pay closer attention to my symptoms, she stumbled upon Dr. C’s existence when my regular pediatrician wasn’t available. After listening to my mother for a mere 20 minutes, Dr.
I didn’t write my column last week. It’s the first time I’ve missed a column in months. If I have a surgery or a conflict, I write ahead of time, because one of the best (and most challenging) things about working for a company run by sick people is…
“Everybody’s gross.” It’s a motto that I live by, as well as the opening number of my original musical comedy about a girl with cystic fibrosis, “Fall Risk.” Cystic fibrosis (CF) patients have an unfortunate amount of mucus that overwhelms our entire bodies. This leads to excessive…
Note: This column was updated Aug. 2, 2022, to reflect the column’s new name, “Lung, Scrappy, and Hungry.” I was busy in June 2019. I had been evaluated for a double-lung transplant earlier that March at the Hospital of the University of Pennsylvania (UPenn) after a drastic decline in…
I wish someone actually talked about marriage. And not just marriage to a sick person, though I am one. And not just how to fix a marriage. I don’t want someone to offer advice on what I’m doing wrong (plenty). I just want someone to talk about it honestly. I’ve…
“Wow, look at the COVID-19 stats in the U.S.! Our numbers are awesome! With so many people getting vaccinated, we can finally start going back to normal.” — Seemingly everyone but me It feels like I’m the only person in my part of the world that still has to…
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