Room for More

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Untold and unheard, stories fester.

On the first day of the narrative medicine workshop at the College of Physicians and Surgeons at Columbia University, the instructor, Dr. Rita Charon, introduces us to the idea of Volvox, a species of green algae that developed over thirty-five million years—a relatively short time in evolution—the ability to form self-contained colonies. A division of labour between the colony cells essentially mirrored the evolution of multicellular organisms. At first, single-celled creatures did everything themselves—grew, propelled across the waters they lived in, reproduced. But, in time, some gave up the ability to reproduce and began to secrete the goo that surrounded the colony, while others developed their cilia to enact movement, leaving still others to specialize in reproduction. Rita compares our group to a Volvox. We, too, will become a colony with a single unifying purpose, learning to rely on each other.

Rita has developed the concept of narrative medicine, a novel approach to medical care centred on the patient’s story as opposed to the patient’s condition. A professor of internal medicine and a scholar of Henry James, for years she was known at the Columbia University medical school as the “crazy book-lady” who told anybody who would listen about how reading literature bettered the practice of medicine. The study of narrative texts, both written and spoken, refines a doctor’s ability to hear her patients’ stories. Narrative medicine also promotes reflective writing, writing to prompts, and, most importantly, sharing one’s writing with others. Stories that remain untold and unheard fester. For the workshop, we had been instructed to bring a piece of medical writing. Now came the time to share it.

In our workshop group are eight health professionals, huddled around faux-pine laminated tables arranged in a circle in a classroom on a glorious October Saturday in New York City. Outside, the leaves on the lindens lining Broadway are beginning to change and the afternoon sun angles through the tall windows. Rita reviews the guidelines: the workshop is a safe place, confidentiality is key—nothing should be repeated or discussed outside the room without consent. Participants can pass on reading aloud. Read without preamble, explanations, or excuses. Read exactly what you have written. Participants can leave at any time without explanation.

My story has been eating at me for almost ten years. I tried sharing it in my first creative writing class three years earlier. The response from one classmate still hisses in my ear: “I hate this. I hate you for making me hear it.”

But the participants in this workshop are doctors, nurses, social workers. They have come from around the world to learn how to improve clinical medicine. They have seen the misery of the human condition. In patients and in doctors.

“Who wants to read first?” Rita asks.

“Me,” I say. I almost shoot my hand up like I used to in primary school.

I read.

I saw Savannah today. Yet another of my professional successes. A fifteen-pound grotesque of foreshortened limbs, crooked vertebrae and blown up skull. Not a single straight bone in her eight-year-old body. I have known her since before she was born, when the gray and black images coalesced to reveal a malformed spine, bowed arms and legs and bent ribs. My many attempts to paint a realistic and warning picture fell on deaf ears; her parents actually tell all that I am the only doctor who never gave up on her.

Now, after almost a year in intensive care units, after many times spent in the hospital with a breathing tube and on ventilator support—her chest and lungs are too small, you see, she is still receiving oxygen by a hole in her throat—her mother tells me that she is learning to speak in sentences, very short ones because of the breathing problems, and she is learning to use a motorized wheelchair. She loves her eighteen-month-old brother, Jack, who is already bigger than she is. With squinty little eyes with cataracts and crooked yellowed teeth she looks like a miserable little gargoyle.

What have I done?

My cheeks and neck burn. I have read it out loud, all of it, even that awful word at the end of the second last sentence. I glance around. I met these seven strangers only the night before when we shared the innocent icebreaker of writing to the prompt, “Tell the story of your name.” What do they think of me now? What I have just read is not the same as: “I changed my name from the Polish ‘Małgorzata’ when a Canadian teacher butchered it one time too many.” They laughed at that. Now they are silent.

But the faces are not turning away in disgust or recoiling in horror. Nadia, a geriatrician and former ballerina, smiles and nods at me.

Rita holds the silence a while longer. Finally, “What did you hear?” she asks.

“How much she’s hurting,” a male internist from Long Island says. “How it’s eating away at her.”

“It’s so dark, though,” Nadia says.

“How can she make it better for herself?” Rita asks.

“She can’t change the memory,” Krisann, a social worker, says, “but she can change how she looks at it.”

“What if…” Rita stops, thinks. “The name—Savannah. Is that her real name?”

“Yes,” I say.

“How about instead of thinking of her being trapped in her body you play with the image of her name—big spaces, the openness of the African savannah. Free, boundless.” She peers at me sideways, head tilted like a curious bird. “Hmmm?”

I nod, even though I am not convinced that this mind trick will change anything. I have always thought of Savannah as a ruined medieval castle. But something has already shifted inside me.

“It feels so, so great to have read it,” I blurt out. “It makes such a difference that you all listened.”

“See?” Rita says finally, her warm grey eyes on my face. “You made room for more.”

A few months after my return from New York City, I receive a consult on a woman at thirty-three weeks of pregnancy: an ultrasound has detected “an abnormal profile” in her baby girl. In the radiology suite, the baby’s ultrasound images show a bulging forehead and tiny nubbin of a nose and prominent lips but the heart, lungs, kidneys and brain all appear normal. When I enter the counselling room in which the mother has been waiting with her husband I have no idea what the baby may have.

The woman looks vaguely pugilistic: thick, crimson lips, a broad nose and a wide chin. Her face glows as if she has sat in the sun for too long and acne spots her forehead. When she says hello, her voice resonates almost as deep as her husband’s baritone.

I explain the ultrasound images and admit that I don’t know what is going on with the baby. “I don’t think we’ll know until she’s born,” I say. “You have thick lips, so maybe the baby comes by it honestly.” Reassure, write your notes, I think; deal with the baby when she’s born, it’s too late to do anything at this late stage of pregnancy.

“This is not the way I normally look,” the mother says.

I’d like to think that I would heed these words without the training in attentive listening, but “narrative medicine” flashes in my mind.

“What do you mean?” I ask.

“That’s true,” her husband says. “She’s been telling her doctor and midwife but they keep saying it’s just the pregnancy.”

This is not the way she looks, I repeat in my mind. Whatever this means, nobody has paid attention to what she’s been saying.

“Do you have a photo of yourself from before?” I ask.

Her husband pulls out his phone. Chiseled cheekbones, aquiline nose, skin as clear as porcelain. I look from the photo to the woman before me and back at the photo, mind whirring as her husband says, “April, just before she got pregnant.”

The evidence before me “moves me to action,” as Rita would say. After three weeks of blood tests and investigations, we find testosterone levels four times the upper normal limit in the woman’s blood; the endocrinologist suspects that she has a tumour either in her ovary or her adrenal gland, a common cause of elevated androgens in a woman. But after the baby girl is born four weeks later with anomalies of her airway and skeleton—none of which were detectable on ultrasounds—I make the diagnosis of a rare biochemical condition that causes excess production of testosterone in the baby. It was so high, it spilled across the placenta into the mother’s bloodstream and caused her to become virilized: over several months nobody noticed the changes in this young woman’s body because nobody heard what she was saying. I almost made the same mistake when I first saw her.

Later that fall, I follow Rita’s prescription to “reframe Savannah” and go to talk to her ICU physician, who for years managed her ventilator, and to her G-tube nurse, who has been following her regularly for surgical site care and for nutrition. I learn that at school she rules among a bevy of friends who fight for the privilege of pushing her wheelchair and that she arbitrates math—she always gets the answers first. Her younger brother Jack adores her. Everybody agrees: Savannah is happy; she loves her life. Savannah’s life brings joy to her and to others around her, the ones who see beyond her appearance and disabilities. She is not suffering, as I have always feared. Slowly, disbelieving at first, I accept that. And that I have been wrong.