As a CFer, I Found Community in Punk Rock Music
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…
Understanding Nonsense — William Ryan
William Ryan is an adult with cystic fibrosis and cystic fibrosis-related diabetes. William is from Bayonne, New Jersey, a small peninsula city roughly 20 minutes from New York City. Along with being a columnist, he works in local government helping senior citizens, disabled citizens, and veterans. He was diagnosed with CF in early 1993. He has a rare mutation of CF, mostly affecting his digestive system rather than his respiratory system. William and his wife, Gina, have two dogs, Otis and Ruby. He hopes you’ll enjoy reading his columns as much as Otis and Ruby do.
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With my nonsense mutations, Alyftrek offers new hope
As a proud son of New Jersey who’s married to a woman who’s half Italian, I’ve found that fresh mozzarella is a key to happiness in life. I’ve never had a bad day when…
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Disabled Politicians Can Lead the Way
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…
Feeling Different From Other Kids as a Child With Cystic Fibrosis
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…
Running the New York City Marathon to Support CF Patients
When I was a kid, my goal was to play second base for my favorite baseball team, the New York Yankees. When I realized that I couldn’t hit a baseball, arguably the hardest thing…
The Ups and Downs of a Cystic Fibrosis Hospital Stay
Being hospitalized for any length of time is a never-ending grind that never ceases to amaze me, both in good and annoying ways. I wouldn’t say bad, necessarily, but it definitely feels like I’m…
How NBA Legend Phil Jackson Changed My Perspective on CF
I don’t know about you, but I constantly sweat the small stuff. It’s probably not healthy and makes me come across as a control freak. If left in my hands, I do my best…
The Benefits of Having Dogs to Accompany Me on My CF Journey
My two best friends love to wake me up every day around 6 a.m. They’re hungry and a little thirsty from a good night’s sleep. They’ll hang around in the kitchen and wait for…
Yet Another Test to Find the CFTR Modulators That Work for Me
This past March, I found myself in Baltimore to get my nose swabbed. “Isn’t that a little out of the way for a COVID-19 test? You’re from New Jersey. Baltimore is hours away!” Well,…
What Jesuit Education Taught Me While I Was Hospitalized
I’m the proud product of a Jesuit education. For eight years, I studied under the tutelage of wise educators who were Jesuits, a religious order of the Roman Catholic Church that was formed by…
The Importance of Friends in My Health Journey With CF
I’m going to declare my opinion that LCD Soundsystem’s “All My Friends” is the best song of the 2000s. The song, which is only two notes and about seven and a half…
What Is Survivor’s Guilt and How Do We Process It?
There is never an ideal way to encounter survivor’s guilt. It’ll be foisted upon you like a dumpster on your front porch. It’s unnecessary baggage that you didn’t know you’d have to carry, but…
Living With CF Does Not Make Me a Hero
In a 1993 commercial for Nike, NBA star and 1992 Olympics hero Charles Barkley declared, “I am not a role model.” The commercial was controversial and garnered backlash, but Barkley was right.
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