“I don't have anything interesting to write,” I said. I meant it.
My journalism mentor, Jay Hartwell, crinkled the skin between his eyebrows and stared at me in surprise. Then, he laughed.
“You're a writer, Brad, and with more stories than most thanks to your disease.” It was that simple to him. But, not to me. Not yet.
I had been offered a column with HuffPost in 2015, and I sought Jay's advice on whether I should take the opportunity. I'd eventually turn it down because I feared boring my readers or appearing egotistical by writing about myself.
At the time, I wrote magazine profiles about small businesses and personalities whose stories I'd deemed infinitely more intriguing than mine. But, then I was kicked into end-stage cystic fibrosis and I became deaf, so I couldn't interview anyone. I sat in total silence with my thoughts and memories for months. Eventually, the memories made me realize my life wasn't so boring after all. In my last essay for a magazine I worked for, I wrote about learning to tell my own story.
While awaiting a double-lung transplant, unable to work, I found companionship in people who followed my story for inspiration and perspective. This added purpose to my journey; it was something shared and so, despite my deafness, I didn't feel alone. My voice was heard in the most alienating circumstances.
Two years post-transplant, after writing hundreds of blog posts and columns, I haven't yet run dry of material. I've used my story to advocate, spark awareness, comfort, and -- occasionally -- make others chuckle during tough times.
Cystic fibrosis gives us darn good stories. We aren't all masterful or even slightly competent storytellers, but we all do have stories, yes? The genetics of a compelling story include unique experiences and perspectives, and maybe even tragedy or an underdog-overcomes-the-odds tale. I haven't met anyone with CF whose life isn't saturated by those qualities.
“Write when emotion begs it,” that's what Paul Lyons said. A professor with severe melanoma, Paul taught a class called Autobiographical Writing About Illness. We discussed writing's therapeutic value, the dilemmas of romanticizing disease, and how to force an audience's eyes on you. He also taught me to respond to those begging emotions -- rage, grief, mania, anxiety -- by harnessing them for art. He helped me build the skills to make CF my story, my controlled narrative.
Over tea one day, Paul demanded I compose a memoir. He said I'd be wasting a good story if I didn't write. I said I lacked the skill and he charged me with wonderful words about my writing, saying to stop doubting myself.
Now, I write directly to the CF community, realizing that I had so dearly respected Paul because he intimately knew illness. He exhibited empathy, the most powerful communicative and therapeutic tool for a condition that alienates us from not only common society but from our own disease community.
I eventually moved from my blog to a weekly column for Cystic Fibrosis News Today so I could share my story and that therapeutic empathy with many more people. I then transitioned to being in charge of columns for dozens of other rare disease news sites.
Last March, I told Paul what he'd done for me and how grateful I was. Days later, on Easter, cancer stole Paul away. He left legacies of written word and empowered students. I've begun drafting his requested memoir.
Paul once wrote about sitting in hospital waiting rooms and watching the Food Network while he mourned the taste buds burned from his tongue by chemo. He wrote it in torment, later telling me it was his only comfort.
Now, when I find myself under intense emotional distress, I focus on rapidly jotting down one-liners, metaphors, and thematic ideas for later use. Thinking of my life narratively reminds me that each torturous period is only a chapter in my life story. I respond to horrific events by saying, “This will be a funny story later.” If I get cancer (transplant medications make that likely), I get a memoir sequel. I remind myself that my favorite type of memoirs end with the peace of ending a long, tough journey and realizing everything is OK. I will have that ending.
Writing is therapy. Release pain by purging worries onto paper -- catharsis. I'm not saying you should become a professional writer (though you shouldn't fear the idea). You don't need to be a skilled or published wordsmith. Just write -- in a journal or a blog, on a napkin or receipt, for a magazine or foundation. Or paint. Or make music. Or act. Or direct a film. Experiment with art that filters the suffering from your psyche. Pursue art and don't let CF suffocate it. Instead, make CF your creative fuel.
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