How Alex Edelman’s comedy helped me reflect on my life with CF

Last weekend, my wife and I went to Manhattan to see comedian Alex Edelman perform his one-man show “Just for Us” on Broadway. The show revolves around how he initially sneaks into a white nationalist meeting as a joke (he’s Jewish), but comes out of it with a greater sense of how his faith and cultural background were shaped by the lens through which he views life.

As a former wannabe comedian, I appreciated how painfully funny the show was and how he was able to beautifully weave small stories about his life into his larger story.

I began writing my column for Cystic Fibrosis News Today about a year ago, and as I approach the anniversary of “Understanding Nonsense,” Edelman’s show has helped me reflect on the moment I understood that CF had shaped my view of the world, as well as how it led me to write this column.

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Having lived my entire existence with cystic fibrosis (CF), I’m safe in saying that it’s informed my worldview. Yes, other aspects of my life have shaped my viewpoint, such as being an only child, having a Jesuit education, and growing up in New Jersey. But it’s CF, more than anything, that’s fashioned who I am.

I was hospitalized with sepsis in January 2019, and it infected my gallbladder and appendix; my gallbladder caused me many issues until it was removed. That might not seem connected to a respiratory illness like CF, but because I have a rare mutation, CF has affected my digestive system more than my lungs.

Since I had a fatty liver and enlarged spleen, my gallbladder always worked a little harder than that of the average person to help digest foods with high fats. Yet when it failed to help me digest wagyu steak and led to that sepsis attack, I spent eight weeks between the attack and the surgery reflecting on what it meant to have CF.

Cystic fibrosis has affected nearly every decision I made. Whether it’s a conscious choice (including the career I want) or a subconscious pull (such as how hard I want to drive to the basket in a pickup game of basketball), my disease has always been the deciding factor.

Once I realized this, I knew I wanted to strive to be a better person. I also knew that I wanted to use my writing talents (humble, I know) for the greater good. I began writing a blog, mostly about sports, after my surgery. Occasionally, I’d post about my life with CF.

One of those entries would end up inspiring one of my earlier columns, on how I gravitated toward punk rock at a young age. That came from my feelings of being an outsider, even within the CF community, because of my rare mutations and nonsense genes.

Growing older is about getting comfortable with who and what you are. I couldn’t help what I was born with, but I knew that if I wanted to feel comfortable with myself, I had to embrace CF and the online CF community.

This column has led me to explore ideas I never thought I’d have, as well as ones I didn’t know existed a year ago. I now understand where my empathy comes from, my values, and the strength of the CF community. While Edelman’s act may be known as “Just for Us,” my column is for more than just us. It’s for everyone.

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.