‘Watch What Happens’: The Importance of Writing

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by Nicole Kohr |

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The Broadway musical “Newsies” chronicles the true story of the New York newsboys’ strike of 1899. In the song “Watch What Happens,” Katherine, a journalist, scans through a selection of newsworthy headlines. The lyrics open with, “Write what you know,” a piece of advice all writers have been given. Well, I excel in two topics: cystic fibrosis (CF) and theater. Hence, my column combines the two.

The song “Watch What Happens,” however, opens the doors for a broader phenomenon: advocacy through writing.

“the right way to write it”

There is no right way to tell your story, especially if your story involves CF. I used to write audience-facing pieces, ones that lacked passion and were driven by what I thought audiences wanted to hear. Turns out, they just want to hear the truth.

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Sure, readers lend a hand with missing commas and compound sentences. In hindsight, however, these things are less important. My feelings and experiences are what inspire audiences to advocate alongside me. Now I encourage you, reader, to share your story.

It’s worth noting, though, that your story may not appeal to everyone. The words “mucus” and “poop” are often cast as leading ladies in my columns, and their reprises have resulted in a handful of unsubscribes. Lung- and gastrointestinal-related content, however, are part of my journey with CF, so I’d hate to shy away from them due to a handful of readers’ discomfort. I’ve stayed true to my voice and slowly developed a recurring audience, and you can, too.

“Poor little kids versus rich, greedy sourpusses”

It’s easy to write a stereotypical exchange between a fictional protagonist and the villain. When the villain is CF, however, an audience is harder to engage, especially if they have no connection to the CF community.

I overcome this by simplifying my story. I write as if I’m describing my journey to children. They’re less likely to engage when I define “forced expiratory volume” as opposed to the simple description of breathing through a straw. Then, I write an emotionally charged piece that an adult would enjoy and combine the two visions. I can only define “cystic fibrosis” a handful of times before I lose the audience.

“Give those kids and me the brand new century”

Each generation has its own unique set of contributions. My generation, the millennials, doesn’t have the best reputation. However, I believe today’s voice is powered by 20- and 30-somethings. Art and culture are once again flourishing, inclusion and transparency are spreading, and patients of color are being heard, along with a spectrum of genders.

“I have no clue what I’m doing … I’ll be twice as good as that six months from never”

This speaks to the internal vampire that all writers must battle, the one that sucks out our confidence. If it helps, I don’t know what I’m doing, and that’s OK. With age comes the limitless gift that is “faking it ’til you make it.” I’ve found a handful of templates that apply to a variety of audiences, and you will, too. It just takes time.

“Well that, plus the screaming of 10 angry editors”

When my writing is critiqued, especially in relation to my CF, I feel defensive. Transparency opens the door for judgments, and it makes the phrase “I didn’t understand this statement” sound more like “I disagree with your life choices.” It’s a vulnerable place to live. I turn to my support system and ask their opinions. Other times, I reassure myself that I know my story and body best.

“Not only that, there’s a story behind the story … It’s David and Goliath, do or die

This speaks to a writer’s passion. In my case, not only does writing act as a coping mechanism and a cathartic act of self-expression, but it’s also a visibility campaign that spans beyond my journey. I represent a population of people whose voices need to be heard. In place of a sword or a fist, consider my pen my weapon of choice. My columns could inspire a mother’s research and lead to an early diagnosis. They may calm the nerves of a fellow cyster, fibro, or spoonie. Columns may even encourage a company to donate to the Cystic Fibrosis Foundation.

Like they say, you must start somewhere, and all my best writing stems from truth. Words spread like viruses, and if those words spread awareness, let’s spread them far and wide. Writing is therapeutic, so when you share it with others … watch what happens.

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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