Columns

Every night when I came home from caring for our daughter in the neonatal intensive care unit (NICU), I would gather our mail to sort through it. It was a task I used to distract myself and make life seem a little more normal. As the holiday season approached, I…

Imagine this: As an established patient with lifelong illnesses, you walk into any pharmacy, slide an access pass, and walk out with your prescription drug refills in less than five minutes. It didn’t require you to phone in your prescription. And you didn’t have to talk to anyone, unless you…

There is power in finding a community where you belong. For example, many people love Marvel and bond with one another over their shared love of the iconic movies and comic books. I’ve always loved Batman because he’s an outsider who’s spent his life trying to fight corruption. He just…

“How is this possible? We did everything right!” I couldn’t comprehend what my daughter Claire’s pulmonologist was telling me at her quarterly cystic fibrosis (CF) clinic visit. He explained that her most recent chest X-rays showed signs of disease progression. She was only 2 years old. Up until that…

It’s that time of year again — time for the regular reminders that “’tis better to give than to receive.” In a great many ways, I agree with this. There aren’t many material things I need, and nothing beats treasure hunting for items that will put a smile on a…

When I did standup comedy back in the day, I had a bit I worked on for a while, but could never quite get right. The routine assumed that if I, a person with cystic fibrosis, ever decided to run for political office, I’d be forced to make myself…

More often than not, I act healthy when I’m actually sick. Many people with chronic illness will pretend like everything is fine, even when it’s not, due to societal pressure to present an appearance of perfect health. I struggle to be honest about how I’m feeling because the answer…

Second in a series. Read part one. In my previous column, I described my complicated relationship with antibiotics and antimicrobial resistance (AMR). As a cystic fibrosis (CF) patient whose pre-transplant lungs were greatly impacted by the lack of available antibiotics, I’m one of many advocates fighting for a new…

Last week, I went to my first indoor, in-person event since January 2020. Honestly, I’d spent a majority of the time since the COVID-19 pandemic began thinking that my days of attending indoor events were behind me. The fact of the matter is that the more people go unmasked…

Those of us who have cystic fibrosis (CF) each has a story about the first time we felt different from the other kids. That moment tends to have a huge impact on the rest of our lives and how we interpret every interaction with strangers and loved ones alike.