On Writing the CF Experience: Whose Story Is It Anyway?

We each have a story that deserves to be told, says columnist Kate Delany

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by Kate Delany |

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(Spoiler alert: It’s yours.)

A writer friend of mine regularly reminds her memoir students: “If you drive your friend to get an abortion, that’s your story, the story of you driving your friend to get an abortion.” The point of this reminder is that even when you’re not in the starring role of a dramatic situation or crisis, if you’re in the story, it’s your story, too. Of course, you can’t tell anyone else’s story, nor should you try to. But you can and should tell your own story — what you saw, what you felt, what you learned. After all, according to author and academic Jonathan Gottschall, we are all storytelling animals; it’s our storytelling that makes us human.

From time to time, I’ve had to remind myself of my friend’s advice. As the elder well sibling of a CFer, cystic fibrosis has played an oversized role in my life, even though I myself do not have CF. I’ve written about CF-prompted anxiety and depression, though not as someone with CF grappling with those issues. I’ve written about transplantation, though I was not the one getting new lungs.

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Who holds the truth?

Sometimes I fact-check my life experiences with my older sister. (“Did it really happen this way? Do you remember it that way, too?”) I check in with her about my memories, because as fellow elder well siblings, we went through many crises together while my mom was with my younger sister and my dad was at the job he worked Monday to Saturday, 8:30 a.m. to 6:30 p.m., for most of my life. Usually our memories align, but even in recalling the same memory, we might emphasize different things or mark different moments in the story as the turning point. One of us might see humor or heartache where the other does not.

In her short, creative nonfiction piece “Three Takes on a Jump,” author Jill Christman explores this phenomenon that is likely ubiquitous in all families. We have a predictable repertoire of stories and a set way of telling those stories. Telling them differently would be tantamount to heresy. But we don’t need to retell the family story. We really only need to tell our own story, the one filtered through our own lived experience.

You should really write that down!

I think we’re sort of conditioned to believe that the only people who should write about their lives are the rich and famous, those who have done something “important,” or those who have experienced a miracle or a tragedy. Really, though, whether you’re a royal or an office worker, you’ve experienced love and loss, joy and betrayal. Those feelings are not made more keen by where you are on the social strata.

Though most of my life I’ve been a poet, increasingly I find myself drawn to creative nonfiction. When composed effectively, it provides a chance to find clarity and to pivot back and forth between the granular level and the 30,000-foot view. Writing your story can help you process trauma. Writing your life, or a story from your life, can be a piece of yourself you leave behind or give to others when and if you choose to share.

As far as I know, I am the only member of my family to write my story of our collectively lived, cystic fibrosis-centered experiences. Maybe one day other members of my family will write their stories of some of our shared experiences. Maybe our stories will fit together neatly like pieces in a puzzle. Or maybe they will overlap, a collage of different images and perspectives on shared scenes. Only time will tell if those stories will find the page and what they might contain.

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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