I’ve written recently about getting more feedback and input from the CF community for this column. I love sharing my journey with you, but I’m only one person. Through this column, it’s my ambition to start some big conversations on the impact the CF community is…
Columns
Why I Shout My Story
A dad at the church I attend came up to me and said his newborn daughter had been diagnosed with cystic fibrosis. He looked tired; his motivation for telling me was mostly to ensure that the situation wouldn’t be a cross-infection problem (it isn’t yet, due to…
I have been in a huge rut for quite a while due to my health. I think people often have the perception that I’m always positive and happy. It’s probably because I often take a step back or hide when I’m not feeling so happy.
We all play different roles in our lives: We are friends, children, siblings, parents, cousins, employees, and more. In each of these roles, we assume the jargon of that role when we talk in those environments. In our workplaces, we may use the scientific, technical, or specific jargon…
I wish my life was a Cameron Crowe movie. If it were, then after I left my doctor’s appointment this morning, things would have gone differently. If my life was a movie, my nurse would have been a kindly but…
Growing up with a chronic illness like cystic fibrosis has always bordered on terrifying, which is something I hadn’t quite come to terms with until recently. How does a kid respond to concepts of mortality and suffering, anyway? Parents of kids with CF often…
My column focuses on working life and professional ambitions for people with cystic fibrosis. I write it for two reasons. The first is to speak to carers, parents, and young people growing up with CF on the spectrum of a hopeful future…
Heard enough about “Five Feet Apart” yet? I know you’re begging to read just one more piece about it, right? I saw the movie about a week after its release and wasn’t planning to write about it. Certainly not about how ethically (and cinematically) good or bad the…
For nearly three years, I’ve worked alongside brilliant CF doctors, scientists, and PhDs at a great research hospital. Before that, during college, I worked closely with CF scientists and PhDs at the University of Kentucky. All in all, I have about five years of experience in CF science.
Lying Is Good for My Health
I am a liar. OK, not in a bad way. As an actual profession, I am a liar. As a professional dancer, it’s my job to “lie” to the audience in show after show by transforming into an entirely different character.
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