Columns

Trust Me, You Should Talk About It

“This just feels so sudden,” I said to the doctor who had just become my sister Mary’s new CF physician. Days before, she’d been transferred from one CF center to another in need of an emergency lung transplant. Though I had always known that my sister would eventually need a…

You Learn (About Cystic Fibrosis)

“Fall Risk” is a new musical comedy about cystic fibrosis (CF) and transplant written by yours truly. CF education and awareness are very important to me. One of my favorite takeaways from the show has been how educational the rehearsals have been. Last year, during dry runs for…

For Anxious Siblings and Their Parents

In my last column, I talked about how having a brother with cystic fibrosis affected my mental health growing up. In this one, I’d like to discuss how anxiety manifested for me as a child, and how it still affects me today. It’s important to mention that anxiety has…

‘And I Am Telling You I’m Not Going’ (to the Clinic)

Clinic anxiety is real, especially if you’re frequented by bad news. When I was little, I never wanted to go to the doctor. “Clinic” meant hearing speeches that felt disciplinary in nature, adding medications to my regimen, or being threatened with a lengthy hospital stay. Needless to say, I…

If You Do Anything Today, Get a 2nd Opinion

Get the second opinion. I used to think second opinions were for privileged celebrities who dared to defy the doctoral hierarchies of the world. Those who don’t mind being branded as a “doctor hopper” or an “inconsistent patient” because they can pay for whatever bills or bylines that come their…

This Is Not Alex’s Story, It’s Ours

When I was a kid and adults learned that my younger sister, Mary, had cystic fibrosis, their standard response was a meaningful sigh coupled with a slow nod. Then, they’d often tell me, “Oh yes, I read the book.” I knew what they were going to say before the words…