Thursday, November 27, 2014

Cystic Fibrosis in The Next Breath

Today is Thanksgiving, and as most families do, tonight we went around the table and spoke about what we are thankful for. I said that, above all, I am thankful for my health and for my family's health. I am one of several million parents who feel this way and I am lucky. I especially realize this now, since learning so much about cystic fibrosis while writing The Next Breath.

I knew very little about cystic fibrosis before I started writing The Next Breath and I don’t personally know anyone who has it. So why did I decide to write about it? Well, I wanted to put my main character, Robin, in the situation of loving someone whom she felt destined to lose. I thought it would be a good back story for her, and it would explain why present-day Robin is at once so wise and stunted.

But the more I read about cystic fibrosis, the more I realized how important it was to depict this illness realistically. People don’t die suddenly from it and there so much that patients need to do on a daily basis, like airway clearance and taking lots of medication. Their digestive systems suffer along with their lungs, and children with CF are often in and out of the hospital for weeks at a time. And when it comes to lung transplants, well, they’re the most risky type of transplant, and getting one brings on a host of all-new considerations, so CF patients really need to think hard before making that decision.

I was amazed at the generosity of so many people with CF, who share their stories online. That is where I got a lot of my research: from reading the CF blogs. The young woman who blew it out of the water was Eva Markvoort, who ran the blog, The blog still exists, but sadly, Eva died in 2010. She chronicled everything, and her brave video “goodbye” to all her readers is heartbreaking. She was suffering from chronic rejection three years after her lung transplant, and she had been told that she wouldn’t recover. But she was an amazing woman: loving, strong, and an incredible writer. There is also a documentary about her, which streams on Netflix, called 65 Red Roses. (Parents often teach their children to say “cystic fibrosis” by telling them to say “65 Roses,” hence the title. Eva added in “red” because it was her favorite color.)

Parts of The Next Breath that were really challenging to write were Jed’s hospital scenes. I wanted someone who suffers from CF to be able to read it and say, “Yeah, that’s realistic.” I also wanted someone who loves someone with CF to be able to say, “Yeah, that’s how Catherine and Robin would act.”

In the end, cystic fibrosis is only one part of The Next Breath. My aim was to write a story about loss and recovery, strength of spirit, and the power of love. I hope that’s what I did, but in the process I learned so much about what true bravery and strength really are. And I learned that even still, there’s so much that I don’t know.

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