We in the disabled community should control our own narratives
While scrolling through social media this morning, I learned that the rapper Fat Joe’s eldest son, Joey, is autistic. He wished his son a happy birthday and posted a nice…
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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Working through the trauma of pulmonary function testing
I can still envision it: The top half of the wall was painted a shade of beige, while the bottom half was covered in blue wallpaper with white stripes. That’s how I remember the…
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I’m becoming an advocate by watching others advocate for me
We spend much of life transitioning between roles. Nothing is supposed to last forever, and the time you spend in one role is already preparing you for the next. Aware or not, I’ve been…
My grandma can teach caregivers about showing up for their patients
Nana’s husband, my grandfather Bob, passed away a little less than three months before she found herself standing in the maternity ward of a New York hospital. There she stared at her new grandson,…
In this CF life, I won’t give up trying
When I was in my late teens and early 20s, before I met my wife, I would go anywhere and do anything at a moment’s notice. Staying out until 3 a.m. at a random…
I used to hate my birthday, but I’ve learned to appreciate it
Growing up, I hated my birthday. It brought a wave of attention from everyone I knew and, more importantly, made me think about my mortality. People with cystic fibrosis (CF) are all too…
My dedicated early-morning routine makes a difference in my health
Talking Heads is one of my all-time favorite bands. One of their most popular songs, “Once in a Lifetime,” has a refrain in its bridge that goes, “Same as it…
Why the CDC should mandate masks in medical facilities
Over the past few weeks, I’ve attempted to focus my thoughts on an area that many of us within the disabled community know all too well: the waiting room. That room is a microcosm…
How I manage fatty acids, weight loss with diet and a supplement
Like others with chronic illness, many of us with cystic fibrosis (CF) have met someone who has recommended something that would “cure” us of our disease. Someone once told me that some kind…
CF-related diabetes and liver disease affect me every day
All symptoms aren’t created equal. They can be visible or invisible and range from manageable to unbearable, even debilitating a person for days on end. With cystic fibrosis (CF), symptoms can last…
The cystic fibrosis cough is normal — and in public, it’s embarrassing
It’s the coughing. It’s always going to be the coughing with cystic fibrosis (CF). It makes everyone uncomfortable, whether they admit it or not. Everyone who knows me knows I can have a…
The evolution of chest physical therapy has made life with CF easier
In my nearly 31 years of life, I’ve watched technology evolve at a rapid pace. Millennials like me have watched cellphones, video games, and computers transform from their rudimentary beginnings into the efficient tools…
3 ways I combat brain fog when I don’t get enough sleep
At least twice a week, as I’m lying in bed, I can hear the voice of Paulie Walnuts from “The Sopranos” whispering one of his famous quotes in my ear: “A man…
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