Columns

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…

‘Everybody Fits’: How Neurodivergence Affected My CF Journey

In honor of National Autism Awareness Month, I wanted to write about neurodivergence, a term used when a person’s brain operates differently from what is typical (also known as neurodiversity). A few conditions that fall under the umbrella of neurodivergence include autism, Tourette syndrome, ADHD, dyslexia, and generalized anxiety.

‘I Believe’: Blind Faith vs. Blind Trust

I’ve written about coping mechanisms before and the various ways they’ve kept me sane during my journey with cystic fibrosis (CF). Some include writing, the performing arts, and a dark sense of humor. But there’s one I haven’t disclosed: trust. I’m a believer in blind faith, but not blind…

‘Schadenfreude’: Experiencing Pain and Solidarity

I became aware of the word schadenfreude during my first viewing of “Avenue Q” on Broadway. In the show, two characters discussed how one person’s pain could make another feel happy. As a person who’s often in pain, the concept startled me. The lyrics went on, “Making me feel…

Healing From Medical Trauma Is a Challenging Process

Healing isn’t linear. The therapist in me wants to dive into the deep end, get my hands dirty, and gut out all the wounds that have compounded over my 35 years of life. The traumas I’ve experienced due to cystic fibrosis and a double-lung transplant have left monstrous divots…

Celebrating ‘Company’: Visitors at the Hospital

“Phone rings./ Door chimes./ In comes company.” — from “Company,” from the musical of the same name There was a time I wasn’t a fan of hospital visitors. Living with cystic fibrosis (CF), I needed hours of maintenance to appear clean and put together. I’d spend an hour in…

Getting a Port Taught Me the Importance of Autonomy

At my pediatric pulmonologist’s office, an anatomical diagram of lungs in the silhouette of a child, complete with labeled cross-sections of bronchi and cilia, hung on the back of each clinic room’s door alongside ads for different brands of inhalers. Above the speckled gray tables, children’s art hung on the…

‘Big Fun’: My Make-A-Wish

Make-A-Wish is an organization that offers gift experiences to very sick children younger than 19. If a child has a dream, like becoming a superhero, Make-A-Wish will make that dream come true. I was lucky enough to be a Make-A-Wish kid, but I could never settle on a wish.

Shifting Through Fight, Flight, Freeze, Fawn … Healing

Now, years past the worst of it all — you know, the health crises — I feel safe enough to ponder my trauma and its lingering tolls. Psychologists identify four trauma responses: fight, flight, freeze, fawn. The fight response triggers aggression, flight manifests as avoidance, freeze as inaction, and…