Columns

9 Things Cystic Fibrosis Taught Me About Life

My mom has always said that “in adversity there is blessing.” For Cystic Fibrosis Awareness Month I wanted to share the golden nuggets of wisdom I’ve been blessed to learn while living with cystic fibrosis (CF). Even though it’s been four years since I had a double-lung…

‘When I Grow Up’: Aging With CF Is a Gift

The song “When I Grow Up” helps open the second act of “Matilda the Musical.” The show, which ran on Broadway, is based on the book by Roald Dahl and includes a handful of dark plot devices that the 1996 fantasy-comedy film version does not. The children of Miss…

Are Emotional Spoon Shortages Driving Your Exhaustion?

I’m beginning to rethink the sources of my fatigue. Yes, sickness and physical activity are still real sources of exhaustion, but I’m realizing I’ve neglected a deeper flavor of struggle.   Many of us sick folk are familiar with the “spoon theory.” The analogy goes…

Protecting My Health Against Stress Is Essential

The world demands my constant attention. Everything that comes across my news feed is presented as an emergency. The pressure to know the latest and greatest is at an all-time high. That doesn’t help my stress levels, though. It only adds to the growing list of issues I already have…

‘The Next Right Thing’: Overcoming Burnout

Burnout. Everyone knows the feeling, especially patients and their advocates. My burnout stems from the ongoing pandemic and the harsh contrast between government mandates and doctor advice. It stems from the quantity and quality of advocacy that I choose to post on social media every day, an activity…

Turning Problems Into Solutions Requires Energy

A few weeks ago, I started writing about the U.S. Centers for Disease Control and Prevention (CDC) director’s ableist comment, in which she claimed that masks are the “scarlet letter” of the pandemic. But something about burnout or writer’s block kept me from getting the words in by my…

The Importance of Support Systems When Managing Chronic Illness

I recently discovered “Diana: The Musical,” which follows Princess Diana and Prince Charles through their short-lived relationship. Much like Diana herself, the show is severely underappreciated. I identified with Diana immediately, especially the pressure to keep up with enormous responsibility. I receive a lot of praise for my…

I’m Honored to Share My Story at Donate Life Events

Since my double-lung transplant four years ago, I’ve shared my story in several arenas. I’m passionate about spreading awareness about organ donation and how my life was able to continue because of my donor. Through these speaking engagements, I’ve met incredible people who are connected to organ donation. I’m…


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