‘Welcome to the Renaissance’: A New Beginning for CF Patients

Nicole Kohr avatar

by Nicole Kohr |

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Welcome to the Renaissance” is the opening number of a musical comedy I discovered in 2019 called “Something Rotten!” The show follows the Bottom brothers through the development of a new play and addresses the plagiarism that some historians believe Shakespeare was guilty of. The musical, set in 1595, takes place during the English Renaissance. The Minstrel opens with:

“War of the roses, Chaucer’s tales
The brutal feudal system
Holy crusades, Bubonic plague
Can’t say that we’ve really missed ’em”

The word “plague” immediately struck a chord, and the past few years of isolation flashed before my eyes. It forced me to reflect on modern revolutions and the extent to which the world, especially the cystic fibrosis (CF) community, is experiencing its own renaissance.

The CF community has had a surge of cultural and artistic movements. Modulators have created an air of transparency and positivity that has consumed the community, and more and more patients are dive-rolling out of their chronically ill closets in a desperate attempt to connect with their peers. Even CF-facing organizations have been searching for emotional and financial voids to fill with their resources. In short, things are changing for the better.

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What other aspects of the English Renaissance are present today?

“With poets, painters, and bon vivants”

As a writer and performer, I’ve always needed a creative outlet. Writing and performing were my go-to coping mechanisms. They provided a positive distraction from the isolating world that CF inevitably creates, especially during lengthy infections or hospital stays. Unfortunately, my need to word vomit about idioms or Sondheim’s “Into the Woods” left me feeling like a party of one, especially in a hospital setting.

It wasn’t until 2019 when I received my bilateral lung transplant and publicized my original musical “Fall Risk” that I met creatives within the CF community. Since then, I’ve befriended hundreds of creatives with cystic fibrosis. Even the Cystic Fibrosis Foundation was alerted to our growing community and included our network of creatives in the BreatheCon agenda.

“Here we’ve made advances in the sciences
We have the latest gadgets and appliances”

It’s true! Our pipeline of treatments has expanded significantly and lengthened most of our life expectancies. Everything from breathing easy to pregnancy is a possibility.

Granted, modulators including Trikafta (elexacaftor, tezacaftor, and ivacaftor), a new treatment that targets CFTR protein defects caused by mutations, have their side effects. I, for instance, had to back down from the full dose of Trikafta due to mental health and weight-gain issues. Besides, there is still a percentage of CF patients who don’t qualify for these drugs.

However, modulators have removed the word “cough” from many of our vocabularies. Endless respiratory infections and a lack of drive have been replaced with marathon running, going back to school or work, or starting a family. Many of us came to terms with the fact that our lives would be shorter than our friends’, but these drugs have given us a fresh start and a chance to live a lengthy life.

“Well, our printing press has the fancy fonts”

Podcasts and poets and vlogging … oh my! The fact that you’re reading this column now lends itself to this new craze. I’m a fierce advocate for storytelling. I believe it’s the strongest form of patient advocacy, and CF-related content is popping up left and right. I’m honored to be a part of a community that exchanges stories and supports one another.

“plague”

I attribute a lot of this modern renaissance to COVID-19. We all suffered great loss over the past few years. I was forced to hide away in my home from a virus that could harm a healthy individual, let alone a severely at-risk immunosuppressed person like myself. I was fearful that my new, healthy lungs would be tainted, that I would return to the life that I lived pre-transplant.

On a positive note, the pandemic gave healthy individuals a three-year glimpse into the life of a CF patient. From what I’ve seen, it’s bred a new understanding of and empathy for the chronically ill community. The gap may not be fully bridged, but our communities are closer than they were before. If increased awareness and advocacy are the only good things to come out of the pandemic, they alone have made a huge difference.

History has proven hope is stronger than fear, and a renaissance is full of hope. We’ve witnessed lung functions, BMI, and pregnancies shoot up. We’ve seen hospitalizations and transplants plummet. We’ve seen a reestablishment of hope and dreams, but the change in our heart and science begs the question, “Now what?” In the words of the Minstrel:

“The olden days are over, we bid them adieu
Well hal-le-lu!
Welcome to the Renaissance
Where everything is new!”

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.

Comments

Paul & Debbie avatar

Paul & Debbie

I love the way you use story telling to testify of your aliveness. It is much more than only telling about CF in this way.
We also use Tales to do exactly this! An other Arts as well, like painting, singing, poetry, music and so forth.
The question "Now What" is however a typical mind-made product, always seeking for something to improve the experience of what is. This leads to cravings and unrest. In our view, the answer we have found is: "THAT", meaning everything and nothing (neverything) that presents itself naturally without our doing, wanting and craving. This f*ng miracle called Life will express itself by itself, totally free, effortless and without any agenda. WOW!

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