Let’s Maintain Hope, Even When History Repeats Itself

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by Nicole Kohr |

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I recently watched the 2021 remake of “West Side Story.” It was my first viewing of the musical, a surprising twist if you’ve read my columns. In short, I’m obsessed with musical theater and its parallels with the cystic fibrosis (CF) community.

“It’s like ‘Newsies,'” I said as I danced along with the opening number. “Wait, it’s more like ‘Hairspray,'” I thought as the movie continued. The snaps that open the song “America” are the same snaps that open “In the Heights,” and I recognized Maria’s songs from other modern movie soundtracks. Watching the original story that my favorite musicals are clearly derived from opened my eyes to the world that existed before my time. The song “Something’s Coming” especially piqued my interest.

“There’s somethin’ due any day”

Sung by Tony, a recently paroled young man who formerly led an all-white gang called the Jets, the song paints a picture of a promising future. Tony was exposed to trauma in his youth, but his newfound optimism reminded me of my cysters and fibros.

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Using the Past to Choose Hope for the Future

I was diagnosed with cystic fibrosis back in 1997. There was doubt that I even suffered from CF due to my mixed race, despite producing an overwhelmingly positive sweat test. Books, at the time, depicted the short life that I would live due to chronic respiratory infections, and only two medications were available to me. However, I’d grown so accustomed to the outdated statistics and my status as a minority that discomfort was normal.

Modern-day advertisements show patients from a variety of backgrounds, including people of color and different genders. Books paint happier pictures that claim patients can do anything they set their minds to, and the median age of survival is about 50 years old.

“Gleam in its eye, bright as a rose”

Tony’s feeling of hopefulness was rejuvenating and progressive. On the flip side, immature characters like Riff did not grasp the realities of the situation. It made me wonder: Does the younger generation of CF patients understand that the generations before them lacked available treatments? It’s not their fault if there’s a gap in empathy.

The evolution of therapies created several clearly defined generations of patients with completely different stories. Many younger patients have vest therapies that allow them to travel farther than a 3-foot radius. They can begin a cocktail of medications prior to accruing lung scarring and use the internet to communicate with other patients. They tend to have a “gleam” in their eyes and a greater chance of living healthier lives outside of an isolated hospital setting.

Should I feel jealous? No. It’s empowering to know I’m part of yet another generation that is making positive change. I want more for the generations of patients after me, and if I benefit from advancements in the interim, great. Yet younger patients may never, unfortunately, grasp the impact of CF-related milestones.

“Door’ll knock, open the latch/ … Maybe just by holdin’ still, it’ll be there”

In 1938, CF was recognized as a distinct disease, which mysteriously took the lives of kids. The CFTR gene was discovered as recently as 1989 — a mere three years before I was born. This means the generations of patients before me had no understanding of the foundations of CF until 1989 and no CF-related medications until 1993.

Should I feel guilt? No. The platform on which change will continue to present itself is unclear, but changes that occurred in the past give me hope for the future. Perhaps CF will finally stand for “cure found,” and funds will go toward lengthening the lives of bilateral lung transplant recipients like myself.

Unfortunately, I too can say I’ve lived through a recession, a pandemic, and riots. There must be merit to the theory that history repeats itself. Otherwise, the “West Side Story” remake wouldn’t feel relevant. In a twist of fate, its applicability makes me feel like I must look back to safely move forward.

Understanding CF milestones also makes me grateful to the scientists who made advancements in my lifetime, but what advances should future generations expect? Is it a millennial’s job to fight for results, or is it our turn to hold still?

“West Side Story” was an important musical whose themes still affect modern audiences. This is proof that we must find ways to connect generations of CF patients from different walks of the same path. Many voids have been filled in my lifetime, but perhaps there’s room for more growth.

Let us continue to rewrite the stories and explore their value within a new generation. Continue to hope for a bright tomorrow in spite of yesterday’s challenges. When someone asks what we’re smiling about, let us look out the nearest window onto a bright sunny day:

“I got a feelin’ there’s a miracle due.”


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.

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