Welcome to ‘Understanding Nonsense,’ About My Life With CF

Nonsense can be defined as “an instance of absurd action.” That’s kind of how doctors described my cystic fibrosis (CF) mutations. It was as if my mom hit the New York Lottery and my dad hit the New Jersey Lottery on the same day at the same time. My entire being is an instance of absurd action.

I have cystic fibrosis, a disease that thickens the mucus in my lungs, causing respiratory and digestive issues. I’m not sure where to begin in describing all the ways it’s affected me.

Nonetheless, I’m also relatively healthy for a CF patient. I haven’t had a lung transplant, my pulmonary function tests have rarely been below 70%, and I can count on both hands — with room to spare — the number of times I’ve been hospitalized since I was 2.

I know I’m lucky. Maybe it’s in the Irish name?

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However, because I have rare CF mutations, I don’t qualify for CFTR modulators such as Trikafta (elexacaftor, tezacaftor, and ivacaftor), Orkambi (lumacaftor and ivacaftor), and Symdeko (tezacaftor and ivacaftor), which have been lifesaving therapies for many people with CF. I also have a harder time qualifying for certain tests and studies. While most tend to focus on CF patients’ lungs, I’ve had more issues with my pancreas and liver — but I’ll get to that in future columns.

I’ve spent the last few years of my life reflecting on what all of this means. The word absurd is used to define nonsense, and I think that’s fitting to describe my life. Currently, I don’t have a driver’s license (I’m working on that, though), but I can navigate pretty well by memory. Sometimes my brain thinks faster than the words come out of my mouth, but I did stand-up comedy for years. And yes, I’ve been incredibly blessed to be as healthy as I’ve been, but life often reminds me that I have cystic fibrosis — a rare kind at that.

Here’s another fun fact about me: My favorite band is Radiohead, and my favorite song of theirs is “Weird Fishes/Arpeggi.” As the song builds to its climax, Thom Yorke sings, “Yeah, everybody leaves/ If they get the chance/ And this is my chance.”

For a long time, I ran away from cystic fibrosis, as it causes my life to be drastically different from that of the average person. Yet despite how hard I tried, I’m still an adult with CF. Adults in the CF community were outliers fewer than 20 years ago.

As science and technology have advanced, my feelings have changed, too. Through all of life’s absurdity that curves like a Clayton Kershaw curveball, I’m simply trying to understand myself and my role in the larger CF community.

This is understanding nonsense.

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.