One year ago, I was six months post-lung transplant. I was still fumbling about, trying to sort out my new body and aspirations to help other CFers with my second chance at life.
- I didn’t know how to inspire others to strength if I could barely walk.
- I didn’t know how to reconnect with the cystic fibrosis community when I felt like an outsider thanks to my healthy lungs.
- I didn’t know how to work when heavy medication doses fried my brain.
Those worries were kinda really stupid. Writing countered all of those problems, and I’d already been doing it for years.
- I could write without much physical exertion and use writing to chronicle my journey toward strength.
- I could write about CF issues to affirm my place in the community and remind myself and others where my origins are; I could also write to dispel the “Transplant Boogeyman.”
- I could even write with a fried brain. (Like now. I’m stupid-tired. It’s 2 a.m. and I accidentally took my sleeping med before realizing I had this column due in the morning.)
Some history on me as a writer: Once upon a time, I wrote nothing more than the occasional school essay. I never thought I’d try publishing anything. Except maybe when I imagined being the next J.K. Rowling in fifth grade. I went to college to be a history teacher.
In September 2013, a classmate cornered me outside Gentle Dental in Hawaii. She’d peer-reviewed some of my essays in English. She was aggressive about recruiting me for the school newspaper’s features desk she headed as editor and my gums ached from equally aggressive dental work (Gentle Dental wasn’t gentle!). So I agreed to write some movie reviews to shoo her out of my hair so I could nap.
I wrote some movie reviews for Ka Leo O Hawai‘i. Then, some food reviews. Then, some investigative news and op-eds and profiles. I became features editor in January 2014, then managing editor in May 2015. I caught the “journalism bug” and abruptly ditched my teaching aspirations, to the shock of loved ones. I explored outside the school paper, writing small business and personality profiles for a media-magazine collective called Nella Media Group for a year, then enjoyed a brief stint as the executive editor at Honolulu’s Abstract Magazine before I moved to California for my transplant in 2016.
By the time I moved, I’d become deaf, courtesy of IV amikacin. I couldn’t interview people anymore. It was devastating. I’d come to revel in the thrill of meeting eclectic interview subjects and mining memory for juicy anecdotal-based reporting. To get my writing fix, I started a “medical journey” blog called Adamantium Joy — in comic nerd speak, that’s “Unbreakable Joy.” It introduced me to writing therapy. I fooled around and vented some; I didn’t think it’d be taken seriously. I’d already turned down a HuffPost blog offer because I didn’t think I could write anything about myself that others would find interesting.
So, I was reluctant when an editor from BioNews Services, the mother company of Cystic Fibrosis News Today, reached out one year ago to inquire about me writing a weekly column. I thought back to a pre-graduation conversation with a brilliant professor, Paul Lyons. He’d taught the only creative writing class I’d taken — “Autobiographical Writing About Illness.” He sat across me at Starbucks, my crumpled essay in his hand, and urged me to keep writing. “You’ve got something. You’ve got a story. Use it.” (He passed away on April 1 from melanoma.)
I emailed the BioNews editor back and used my story. Forty-nine times, so far. This is my 50th post.
Accepting the offer was one of the best things I’ve ever done.
I chose to title the column “Victorious.” I was uncertain about how post-transplant life would go. But I was determined to come out on top.
I’ve had the privilege of connecting on an intimate level with hundreds of CF patients and caregivers. Some were mad — especially about my claim that many CFers struggle with treatment compliance, or my thought that CFers should cut excess sugar from their diet. But being angry is OK. Dialogue is integral to progress. I was more concerned with how many of you related to my piece about CF’s traumatizing brunt — 40,776 of you read that. And I laughed at the comments on my marijuana post, and was a bit alarmed at how many people messaged to say they tried it out because of the post. (Me to Mom: “Does this make me a drug dealer?”)
I look forward to many more memories with you, my friends!
As I said at the end of my first “Victorious” piece on Aug. 1, 2017: “Check back weekly on Tuesdays to hear more of my story and how I came to see the world as glass half-full (of mucus). I promise I won’t stick in too many bad jokes like that.”
(Oops. Last week’s post burst with awful jokes.)
By the way, check out my adventures on my Facebook Page.
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 Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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