There is a common ingredient to all writing I find most compelling: soul-baring honesty. This is true for both fiction and nonfiction. Most of what’s considered nonfiction is actually fiction, as it’s necessarily filtered through a perception shaped by beliefs and experiences and opinions and biases. But when a writer testifies — when she writes what she knows in her blood and does it unabashedly — that’s the best kind of writing.
My agent recently sold my debut novel to an independent press. With its public release imminent, I was overcome with excitement, but in the wake of that excitement was a new and creeping terror — the novel is autobiographical and most of my family hadn’t read it yet.
A MAP OF EVERYTHING is largely inspired by my experiences with one of my sisters, Katy, who sustained a traumatic brain injury (TBI) in a car accident at sixteen. I started writing the material in graduate school when a professor asked us to think of the one thing we would never write about and write about that. She instructed that we dig in deep and get bloody with it. I remember making a whole list of things I would never write about. And I wrote out a scene or a story for everything on that list. It was the truth and it was so hard to face and to write. I didn’t touch any of it for over a year. I tried to write other books but that story kept leaking into everything I tried to write. That story, from the beginning, was crazy to be told.
So I went back to it and started shaping it into a novel. Somewhere in that process, it stopped being catharsis — facts slipped away and through fiction the greater truth of the story was revealed. I became obsessed with the work of crafting something compelling and beautiful and complicated. I researched the stages of coma. I researched other teenaged victims of TBI and the effects that injury had on their families. More and more, it became less about my life and more about the story I was telling.
The novel that eventually revealed itself to me is unconventional in structure and format. It’s told in varying prose forms and points of view, which include first person, second person, letter, and parable. Its structure is the periodic table of elements and weaving through it is an extended metaphor about volcanoes, their function in the origin of life on this planet, and how their dual role of destruction and creation is similar to that of tragic events: accidents, injury, illness.
It was beautiful and I was happy with it.
But after the newness of the book contract faded and the wave of elation ebbed, fear crept in. I worried what my family members would think and how they would feel. I was nervous that they would think I had selfishly capitalized on a family tragedy and that it was wrong. Morally wrong.
I considered talking with Katy about it when she last came to visit me, which was just weeks after I signed the contract. She will never read the book because she doesn’t read. She hasn’t since the accident. She can comprehend short bursts of text, but lacks the capacity for retention necessary to read a book. Still, I thought if I told her about the book and explained how I portrayed us — and if I did this in a setting where she would be relaxed and enjoying herself — then I could, what? Obtain her permission?
The trouble was she wasn’t relaxed during her visit. She had what I liken to oppositional defiance disorder in children – particularly about using her walker. Her sense of balance is compromised so she needs to use a walker for safety, yet she often refuses to use it, insisting that she will walk normally again if only she practices. This is not the case, as the brain injury that causes her balance problem is permanent, but because she also has short-term memory problems, no matter how many times we tell her this, she forgets in favor of her own brand of logic. Even though Katy has fallen many times; even though there have been multiple emergency room visits with stitches and x-rays; even though her body is covered in deep, malicious bruises she pushes the walker away.
Coming out of my car one evening, I fought with her. I had retrieved the walker from the trunk and held it ready. She balked at the car door, recoiling from it as if it were a snake.
“I’m not using the walker,” she said.
“Please use it, Katy. It’s not safe if you don’t.”
“I don’t need it.”
“I already got it out of the car – can you please just use it?”
“Put it back in the car.”
“It’s not safe, Katy, you’ll fall without it.”
“I’ll hold onto your arm. I’m not using it.”
This went on. I threatened to not go anywhere with her without it. She threatened to wait in the car. Finally, I roughly wrestled it back into the hatchback of my car and slammed the door. No less than thirty seconds later, I caught her as she fell, about to face-plant on the sidewalk.
“Godammit,” I yelled, “I don’t want to have to take you to the fucking emergency room!”
“The walker would have made it worse!” She insisted.
There was a pressure, a physically painful buildup of sadness and anger and frustration in my chest and I wanted to scream. Instead I offered my arm, which she held, and I took a deep breath. Silently, I coached myself not to react, reminding myself that there was nothing I could say that would convince her of the truth. Then I remembered that she had forgotten her medication the night before, so her screwy logic was even worse than usual. For her, this was real — she was recovering from an injury and getting better. She was motivated to help that process along. The reality is that her accident was 25 years ago and although there was steady improvement for several years, the majority of that time has marked a decline in her level of functioning.
I decided not to talk with her about the book.
The only member of my family who read an early draft of my book was my mom. She was able to handle everything in it miraculously well, which gave me great hope. It was that small miracle, in fact, that allowed me to put the contemplation of any unpleasant backlash from my mind. Until the book contract — when the stark realization that soon anyone who wants to will be able to read this book seized me and I was made helpless with fear.
At first I wanted to wait, perhaps sending them all an advanced reader’s copy, or even signed copies from the first printing. About a week later, I decided to just get it over with. I sent my three other siblings (all but Katy) and my mom an email asking if they would like to read the manuscript in its current state — this was about a year prior to publication. All replied that yes, they would. I put copies in the mail and walked through the next series of days in agitated anxiety. People close to me offered advice. My girlfriend suggested changing small details to further remove characters from their real-world inspirations. My best friend suggested including a disclaimer at the beginning similar to those you see in certain television shows like: “the characters in this book, although inspired by actual people, are works of fiction,” or, “this book is a dramatization of actual events.” I liked both of these suggestions and planned to employ them. My nerves remained.
Although the bones of my story are fiction the marrow is truth — easily recognizable to those of us who lived through it. What if they hated me for revealing that truth?
Jeanette Winterson, one of my favorite novelists and greatest influences, wrote her first novel based on her life. After publishing it and winning an award, her mother wouldn’t speak to her. If you’ve ever read or heard of Oranges are Not the Only Fruit, you would know why. Even though it was a novel, her mother took it personally and hated her for it. This is the risk writers take when they write with honesty about their life and the people in it and I worried that my family, like hers, would hate me. But I also had a small hope. The fact that our family shared a profound and perpetual grief had historically bound us together. The fact that each of us worked differently within this grief wouldn’t necessarily shatter our bond.
And then there was my friend who said the thing that stopped my breathing for a time. She said: “You have to face the fact that you’re prioritizing the importance of this book over the feelings of your family members.”
After I cycled through defensiveness and denial I settled into the discomfort of acceptance and guilt. But then she told me it wasn’t a moral issue.
“Of course it’s a moral issue.”
“No,” she said. “It’s what every artist must do. The art has to be more important than its subject. Otherwise, no art would ever get made.”
The altruistic warmth of that assertion instantly calmed me, but this mindset was short-lived. I heard back from one of my siblings a week after sending the manuscripts and it was clear that there was nothing at all that I could adopt in my defense. Many words in many emails did not assuage the betrayal this sibling perceived and though my other two siblings’ reactions were mixed (one was mildly embarrassed and pained, the other blithely supportive — understanding that it was fiction and that was all) the anger I had feared left me feeling empty and exposed.
I considered pulling the book from publication. I wrote to my agent and the publisher explaining what happened. Both were understanding and supportive, but in favor of going forward with publication. I took several days and waded into difficult conversation with my siblings and with my mom. I chose to go forward, but only after making an additional pass at my manuscript — eliminating certain sensitive parts and altering details — determined to honor the moral obligation I had to my family without dishonoring the necessary truth at the heart of my book.
The day after I decided to move forward with my book’s publication I learned that Christa Donner, my first choice in artists for the novel, had accepted the publisher’s invitation. Jaded Ibis Press puts out each book in several formats: color print, black and white print, digital, and a fine arts edition. Each book is partnered with an artist and Christa will create the cover art and 20 illustrations for the book.
Christa Donner is a world-renowned artist who teaches at the School of the Art Institute of Chicago. Her work “explores the complexity of internal and external body image and the ways that we interpret our physical selves. Illness and injury, reproductive systems, bodily function, power, culture, and mass media are all key elements.” I have been following and admiring her talent and her career for fourteen years and I took this news as a sign — this book was meant to be in the world.
After her visit, I took my sister to the airport for her return flight. I got a gate pass as usual so that I could accompany her. Although people mean well, I find myself annoyed with those who condescend to call her “sweetie” and “honey” — offering my sister that cloying tone of voice typically reserved for babies and children. Fortunately Katy doesn’t seem to notice or mind, accepting it as kindness. Still, my urge to tell the woman at the security checkpoint that she was speaking to an adult woman and should therefore speak respectfully reminded me of how, when we were kids, I used to stare down strangers whose curious gazes lingered too long on my sister.
The dog-like protectiveness I felt over Katy at first seemed at odds with the honest writing I did about her in this soon-to-be-published autobiographical novel — a book that reveals the particular vulnerabilities of people living with TBI. But in the airport terminal, after standing prone and barefoot under the gaze of the TSA’s full body scanner, I realized what might reconcile my seemingly polar motives.
At the gate I said goodbye to Katy and watched her walk away. After a few steps she turned around and held up her hand making the sign for “I love you.” I reciprocated, and we smiled. I felt torn open and ripped apart by powerful, pure love. This was the same intense love that I have for all of the people in my family. It’s why I feel the need to protect them and it’s the force that drives my pen in every sketch and scene and chapter where I reveal them with my words. And maybe, hopefully, that will be what shines through most brightly when people read the words within my book — the only words I could have chosen; the ones that bare my soul.