‘One Last Time’: Saying farewell to my column

Columnist Nicole Kohr thanks her cystic fibrosis community for their support

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by Nicole Kohr |

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One Last Time” from the musical “Hamilton” is sung by the actor who portrays George Washington and sets Washington’s farewell address to music. It’s the perfect song for this breaking news: This is my final column. With that said, I can’t think of a stronger way to depart than with the assistance of two strong writers: Alexander Hamilton and Lin-Manuel Miranda.

“Talk less …/ I wanna talk about what I have learned”

When I began writing this column, I didn’t expect Cystic Fibrosis News Today to have such a positive and lasting impact on my life. As a cystic fibrosis (CF) patient, I thought this would be yet another platform where I could advocate for and explain myself. I would just write, never reaching a feeling of closure or peace.

Instead, I’ve learned to edit, and in doing so, I’ve made discoveries about myself. Dark humor, for instance, is how I’ve always coped with loss, trauma, and isolation. Turns out my sense of humor is shared by many. Aside from airing my dirty (but musical) laundry, I benefited from that feeling of connection.

Editors sent witty quips in addition to their valuable feedback. My audience of CF patients and advocates reached out to share similar stories. Other columnists shared my posts, and I shared theirs in return. Comments from my readers lifted me up through the good times and the bad. All of this validated my feelings and opened my eyes to a community of supportive storytellers. I’ve made lifelong friends just by speaking my truth — a truth I thought no one could relate to.

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“I may have committed many errors”

In any event, I’m not perfect. Since beginning this column, I’ve been diagnosed with cystic fibrosis-related diabetes. That left me hospitalized and absent for a period. I became a foster parent and elected to write twice a month instead of once a week. I had guilt over that. Many of my uploads had grammar errors, and some needed to be rewritten altogether. Despite all of this, my writing has improved thanks to my encouraging editors, and my standard has been raised.

“History has its eyes on you”

My second column was called “Learning to Embrace My Poor Unfortunate Holes,” a lyrical pun that still makes me giggle. I didn’t realize how much impact that piece would have. So many of my close friends were struggling with their self-esteem at the time (as it related to their ports and feeding tubes), and that column opened a therapeutic dialogue between us.

My “Titanic” series landed me a speaking gig about antibiotic resistance. I bonded with fellow transplant recipients after “‘Changing My Major (Organs): A Chronicle of Bilateral Lung Transplant.'” The community just started resharing my Make-A-Wish column after the recent announcement that many CF patients will no longer qualify for a wish. You never know how your words will change history.

“The nation learns to move on”

Unfortunately, now that I’m stretched too thin, I’m incapable of giving 100% to my column. I don’t want to do a disservice to BioNews, the parent company of this site, or to my own work by doing something lethargically.

I’m so thankful that I’ve had the opportunity to write on a platform that represents the cystic fibrosis community and chronic illness as a whole. I’ve not served for 45 years as Washington did, but I did write over 60 columns in the past 90 weeks. That’s proof of dedication with “an upright zeal,” yes? Luckily, there are many talented writers who can pick up where I left off. Check them out!

“Teach ’em how to say goodbye”

Overall, my need for a creative outlet has been overwhelmingly satisfied thanks to this column. Writing has been cathartic and fulfilling. Tying each story back to a musical gave me that extra challenge to overcome, and I often found myself singing through that challenge. To those who’ve read along over the past year and a half, thank you for devoting your spare time to my words! If you haven’t read any of my columns, I’d love it if you dipped your toes into the world of “Lung, Scrappy, and Hungry!”

There’s one message I’d like to leave with you all: Please tell your story. No matter what platform or medium you use, storytelling is the most important part of patient advocacy. You never know whose life might be affected by your outlook and experiences. Best-case scenario, you might wind up with an amazing audience of supportive readers and a chance to change your journey for the better.

As I approach my 800th word, I’m left speechless and thankful. Goodbye, Cystic Fibrosis News Today. I’m happy I could write for you “one last time.”

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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