Nearly two years ago, my boss suggested that I turn myself into a story.
I was halfway through a grueling round of experimental treatment for hepatitis C, a potentially-fatal liver disease I contracted as an infant. My experience had all the trappings of compelling journalism. There was a simple central tension — girl versus virus — and a simple, central question: Will she be cured? Plus, HCV is a sweeping, under-reported epidemic with the potential to cost billions of dollars and millions of lives.
The journalist in me knew all this was newsworthy, but it was Concord Monitor Editor Felice Belman who urged me to use myself as a source.
Over lunch one day, she sketched out her idea: a heavily researched, first-person narrative told in short, serial installments. The piece would explore the epidemic, the idea of medical research on humans and the reasons why so few people know about a virus that affects four times as many Americans as AIDS.
It was an ambitious project for many reasons. For starters, I felt awful. Antiviral medication can cause brutal side effects, and keeping up with my normal workload was already a struggle. Plus, the Monitor’s newsroom is small, and the demands on our time seem to grow every day.
The research and writing took months longer than expected, but we finished the project, called “My Epidemic,” last December. Each day for a week, we published a new chapter in print and online, and used social media to promote the series and to invite feedback.
The result was a profound reminder of the power of storytelling and an illustration of the potential for new media to allow our stories to live on.
Lesson 1: Share your story in a way that works for both print and online.
Yes, journalism has changed, but narrative is still effective, especially if it’s structured to work in print and online. We picked a serial format for reasons both practical and organic. The ups and downs and cliffhangers inherent in serial narratives mimic the reality of living with a chronic disease.
In print, multiple chapters were also easier to place in a tight news hole, and we had multiple opportunities to find space for graphics and photos. Online, each chapter gave us another chance to invite readers into the story through Facebook and Twitter, and to promote HCV resources we’d assembled on our website.
The project was a boon for online traffic. Visits to our website shot up 12 percent compared to December 2009 — by far the largest month-to-month increase in recent memory.
Lesson 2: Find documents, include details for context.
Writing about myself demanded more research than writing about someone else.
When I’m writing about other people, I try to climb inside their heads, which means many hours of watching them just live their lives. In this case, I needed to do just the opposite and place myself in the context of the broader epidemic.
My brother, a doctor, directed me to medical journals and helped me decipher the articles. A database at the local public library supplied archival information about media coverage of HCV, and the Congressional record revealed how public health officials are — or are not — responding to the epidemic.
The most important documents were my own medical records. They included detailed doctors’ notes about all the tests I’d undergone as a teenager and a time-stamped transfusion report that revealed exactly when I’d contracted HCV.
One of the hardest parts was choosing what to include, particularly when it came to describing my birth. There were so many details: my hurried baptism, my father sleeping on the waiting room floor, my parents in their Jeep following the ambulance from one hospital to another, not knowing if I was dead or alive. Those are all important pieces of family lore, but they didn’t advance the story. Including them would have been indulgent, a disservice to the reader.
Lesson 3: Be honest about your fears, discomfort.
I was a crummy photo subject.
For more than a decade, I’ve been trained to collaborate, collaborate and collaborate some more with visual journalists. That’s what I planned to do with this story, but it didn’t quite work out that way.
Photographer Katie Barnes joined the Monitor newsroom a few months after I’d started working on the project and was soon assigned to my story. I was hesitant to drag Katie through my medical hell, and I (irrationally) didn’t trust anyone but myself to get it right.
There were logistical challenges, too. One of the side effects of antiviral medication is temporary absentmindedness. In my case, that meant showing up to work with mismatched shoes, getting lost in the grocery store and forgetting to tell Katie when something important was happening.
Finally, she made me a list of things I might do — walk the dog, cook dinner, visit the acupuncturist — that would help her tell the story.
I know now what it means, what it feels like, to be the subject of someone else’s journalism. Our sources have so much at stake: their reputations, their public images, the truth of how they view themselves. Building trust with the people we cover is everything, and that’s why honest storytelling requires so much time.
Katie ultimately made my discomfort a part of the story, producing a video focused on my feelings about the project. I was terrified when I sat down in front of that camera, but we’d been working together for almost a year, and I understood that this was part of the story only she could tell.
Lesson 4: Tend the seeds you sow.
The response to the series was overwhelming. By the time the last installment was published, I had Twitter followers from Russia and my e-mail and voicemail were full of messages from other people living with HCV.
My editors and I decided to turn some of those responses into an impromptu seventh installment. As I was writing, I found myself wondering if such a swift, multifaceted (and international) reader response would have been possible a decade ago.
The story continues to live on. I receive new e-mails every week from people who have discovered the series, often through Facebook or Twitter. More often than not, they have a personal connection to HCV. Take, for instance, the teenage girl in California who, like me, contracted the virus as a baby and who, like me, has faced cruel judgment from her peers.
As I read the e-mail, I was devastated that another young woman had endured such fear, shame and humiliation. Then she told me that she showed her family and friends my stories and, at last, people began to understand.
Meg Heckman splits her time at the Concord Monitor between writing and exploring digital storytelling. She is a 2001 Poynter summer fellow and a graduate of the University of New Hampshire, where she now works as an adjunct instructor in the journalism program.