Right around the time my wife got sick, I learned what makes a good story. It was a coincidence really — Christina’s illness popped up like some demented specter just before I started a graduate program in journalism. And over the past five years, as sickness took over our lives in ways most young people have the good fortunate of not experiencing, I had a hard time overlooking the fact that the devastation in my personal life had all the elements of a great piece of radio.
Going To Jesus
When we met, Christina was the healthiest person I had ever known. She had an athlete’s body and mind — an ability to push herself to her physical limits. She knew the names of muscle groups. Her father fed her organic before that word became part of our national lexicon. Before there were juice bars everywhere, she juiced.
But Crohn’s disease has nothing to do with your lifestyle. It’s an autoimmune response, like allergies or multiple sclerosis. The immune system goes haywire — out of the blue — attacking something that does not truly pose a threat: the digestive tract.
As detailed in the piece “This Is Crohn’s Disease” for the PRX STEM Story Project 2.0, over time we came to realize Christina had one of the rarest, toughest-to-treat manifestations of Crohn’s. The treatments for her started as drugs and surgeries, then progressively turned into science experiments.
And as my radio career became something resembling solid ground under our feet, I constantly found myself seeing our troubled life as a radio story. As we would be driving frantically over the Triborough Bridge to Mt. Sinai Hospital’s emergency room, or sitting down for any number of life-changing conversations with surgeons, I often thought, “If only I were recording this!”
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Christina and I both had a desire to share our story. But when the rubber hit the road and the mic started rolling, we had to navigate how to expose the most intimate, distressing details of our marriage — without damaging our relationship in the process.
One problem was I had a great narrative with no tape, no structure, and — troublingly for our peace of mind — no resolution. I never had the gall to start recording until last March when we got an appointment with Dr. Bo Shen at the Cleveland Clinic — his patients called him “Jesus.”
Our trip to see him would have all the elements of a great story: a strong character (and a good talker, to boot) meeting a challenge and making a life-altering decision. It felt to me like some storybook legend about a sick princess climbing the mountain to the sage, with the tiniest hope for redemption and healing. I know that sounds melodramatic, but it was not. This was real drama, not melodrama. This was our life.
Christina agreed it was an opportunity to record something monumental. I considered pitching the idea before going, but ultimately I just put out some feelers. I wanted whatever was about to happen to be authentically “us;” I did not want to have to cram our life into the format of a particular show. I recorded everything: airports and planes, every word the doctor said to us, the before and aftermath of an exam under anesthesia, late-night confessions.
I came home with a mile of tape, every word of which was more personal than any piece I had ever produced.
Let’s be clear about one thing right here. Both of us, Christina especially, had hesitations every single step of the way.
The microphone altered how she interacted with doctors and nurses, making her self-conscious in a way probably no one can hear but me. For months she would grow sheepish around friends when I said I was producing a story about her, rather than a story about Crohn’s disease (it’s both). As I started pitching the piece — talking to and getting feedback from strangers — a level of realness set in for Christina — as in, “Wow, people might actually hear me talk about myself. That’s embarrassing.”
Christina was not afraid of what most people thought, just a certain group: sick people. They were her audience, and she was afraid — despite the hell she has been through — that she would sound like a complainer. She did not want to share a depressing sob story with the world, something that would make sick people feel more afraid. Instead, she was thinking of this as a sort of survivor’s manual for the chronically ill.
The thing Christina really couldn’t hear objectively was how genuine she sounded. Here’s one of my favorite scenes, a moment when she is weighing the costs and benefits of taking a higher dose of an intimidating drug…
On the other hand, the things I had second thoughts about were almost inconsequential to Christina.
Crohn’s disease is deeply personal and embarrassing. It forces you to suffer alone in the bathroom, and the details can be gruesome. I had to write through a series of scenes describing bowel surgeries and uncontrollable bowel movements. That is, my wife’s uncontrollable bowel movements. I had become very protective of Christina since she became ill, and I questioned my judgment once I realized what exactly I would be sharing in this story.
But as it turned out, Christina wasn’t afraid to talk about poop. She had been forced to focus on it for five years; the shock value had worn off. I was the one who was distressed by the idea of people hearing these gory details about my precious wife. But facing that fear helped me realize just how stupid and petty our stigmas are — and really why was I making this piece if not to confront those stigmas head on?
That’s why I started the piece the way I did. In the first 30 seconds of this 18-minute story, I wanted listeners to know they were about to get pulled into a very dark, weird place. I started this piece with physical pain and a touch of nudity, as if to say: “Get used to it. This is our life…”
Details, Jargon, Memories And Other Useless Information
When you take a deep dive into a story, there is always a struggle to come up for air in the writing and production process. You get too close to your facts and want to share too much with your fragile, confused listeners.
This challenge was magnified because I was, let’s say, too close to my subjects — both Christina and the science behind the disease. How to sort through all the memories to pick the most salient examples? Should I mention that her heart stopped beating on an operating table once? Or that right before she died on that table, she woke up during surgery? Too distracting from the story’s narrow plot, as it turned out. Plus it was all in the past, and I had no tape from those crazy, crazy days.
That’s why I relied heavily on two things: a very good editor (thank you, Maria Balinska) and the absolute best tape I got in Cleveland — only clips that moved the story forward and illuminated the twisted technical details of the disease. Probably my favorite clip in the piece is below. Christina sat down with Jesus for about an hour. You wouldn’t understand the majority of what was said — too much background, far too much jargon.
And then Dr. Bo Shen asked Christina to explain her quality of life — with and without a drug called Humira — in terms everyone could understand. As soon as I heard this, I knew it would be in the final piece…
I Actually Let My Subject Edit The Story
Yes I did. It was the most uncomfortable thing I have ever done for a story. Here’s how it happened.
In the two months between PRX accepting the piece and the first draft of the script being completed, Christina’s treatment plan changed dramatically. She got well, and strong — for the first time in five years. Yet my draft excluded all of it because I had my head set on a certain way of telling the story and couldn’t hear how to include all the new information.
Christina and I agreed she should read the script before I produced it, just to make sure there was no detail that felt too personal to share. I did not expect that she would basically say she did not like the story, or that it did not correctly portray her views.
I got very prickly. She did not understand, obviously, because she was not the radio producer. She was the subject. It was highly unconventional for a subject to hear a piece before it was finished, and for this exact reason, I tried to explain; you are too close to see it objectively, dear wife.
And then she said something that got into my head and my heart like a fiery little worm. “It’s your story, Jack. Do it how you want.”
I had always thought about this as our story, not mine. If anything, it’s HER story more than mine. Despite everything we have been through together, Christina’s comment brought something sharply into focus: I did not have the right to tell our story strictly the way I wanted to. Without her advice, it truly would be MY story — and that would disqualify it from being authentically US. I had to let go of my vision to see hers was just as valid, and that her ideas could elevate the story to something I could not envision on my own.
I re-interviewed her to add tape that better framed the story at the top, and I totally restructured the end. The basic structure of the story stayed the same, but we took a more scenic route to get through it all.
The Last Thing
Every trade has rules, and journalism has more than most. There are all the little writing rules regarding sentence structure — nouns and verbs and such. Then there are the ethical policies about treating people fairly, and the meticulous attention to facts. Add to all this the layers of radio guidelines about good sound and narrative structure, and you’ve got one big pile of To-Dos when you set out to make a story.
But when you write about yourself, you have to get cozy with breaking all the rules. Facts filter through your personal memory of events. Objectivity? Forget it. Everything is a conflict of interest.
All for the better, as far as I am concerned. You don’t get good at something by doing it the way you are supposed to.