Last weekend, my wife and I had the pleasure of seeing comedian Alex Edelman perform his one-man show, “Just for Us,” on Broadway in Manhattan. The show is a compelling exploration of identity, centered around Edelman’s experience of infiltrating a white nationalist meeting. Through humor and poignant storytelling, he delves into how his Jewish faith and cultural background have shaped his understanding of the world.
As someone with a past aspiration to be a comedian myself, I deeply appreciated the show’s sharp wit and Edelman’s masterful ability to weave personal anecdotes into a larger, thought-provoking narrative. It was genuinely funny, but also deeply insightful.
Recently marking my first year writing my column for Cystic Fibrosis News Today, and reflecting on my initial column “Understanding Nonsense,” Edelman’s performance resonated with me on a profound level. It prompted me to consider the pivotal moment I realized that cystic fibrosis (CF) wasn’t just a condition I lived with, but a fundamental lens through which I perceive and interact with the world, and how that realization spurred me to start writing this very column.
Living with cystic fibrosis my entire life, I can confidently say that it has significantly shaped my worldview. Of course, other aspects of my life have contributed to my perspective, such as being raised as an only child, receiving a Jesuit education, and growing up in New Jersey. However, it is undeniably CF that has been the most formative influence on who I am today.
In January 2019, I experienced a severe health event – I was hospitalized with sepsis. The infection affected my gallbladder and appendix, and in particular, my gallbladder became a recurring issue until it was eventually removed. While this might seem unrelated to a respiratory illness like CF, my specific rare mutation primarily impacts my digestive system rather than my lungs.
Due to a pre-existing fatty liver and enlarged spleen, my gallbladder was always working harder than average to process high-fat foods. When it struggled to digest wagyu steak, leading to the sepsis attack, the eight weeks between the onset and surgery became a period of intense introspection. I reflected deeply on the profound impact of living with CF.
Cystic fibrosis has been a silent, yet decisive, factor in nearly every choice I’ve made throughout my life. Whether it’s a conscious decision, like choosing a specific career path, or a subconscious inclination, such as how aggressively I play in a casual basketball game, my health condition has consistently played a pivotal role.
This realization was transformative. It ignited a desire within me to become a better person and to utilize my writing abilities – however modest they may be – for a greater purpose. Following my surgery, I started a blog, initially focusing on sports. Over time, I began to occasionally share aspects of my life with CF.
One of these personal entries inadvertently became the seed for one of my earlier columns, exploring my youthful gravitation towards punk rock music. This connection stemmed from my feelings of being an outsider, even within the CF community, due to my rare mutations and “nonsense” genes.
Growing older is often about coming to terms with oneself, embracing your identity. I couldn’t change my genetic makeup, but I understood that to truly feel comfortable in my own skin, I needed to accept CF and actively engage with the online CF community.
This column has opened doors to exploring ideas and perspectives I never anticipated, some entirely new to me just a year ago. I’ve gained a deeper understanding of the origins of my empathy, my core values, and the incredible strength and resilience of the CF community. While Alex Edelman’s show is titled “Just for Us,” my column, in its own way, aims to resonate beyond just “us” – it’s for everyone seeking connection and understanding.
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