Narrative Medicine and Me

By Kathleen Watt

Once a painter from New England, Kathleen Watt became a New York opera singer. Bone cancer in her face transformed her into a writer. REARRANGED is her first book. Learn more at www.kathleenwatt.com.

As a New York opera singer in 1997, I loved everything about performing on the operatic stage—the music, the camaraderie, the full-body athleticism of operatic singing, all channeled into a shared artistic purpose. And I was peaking, anticipating a full-time position with the mighty Metropolitan Opera Chorus. But all that abruptly ended with a diagnosis of maxillofacial osteosarcoma—bone cancer. In my face. My reconstruction required more than thirty surgeries and most of a decade.

Still, nearly thirty years later, I am reluctant to call my saga “tragic.” Osteosarcoma irrevocably altered my life, it’s true, but the whole experience was much too interesting to be merely tragic. For at every juncture, it was life. It was my life, and I was determined to live it. 

In so doing, I learned a kind of awareness I might otherwise never have discovered. It is the kind of close attention that medical students and others now learn through the discipline of Narrative Medicine, with the three pillars of its moral architecture: 

Attention - skilled listening as a vessel for another person’s truth
Representation - the faithful rendering of experience through storytelling, making it shareable Affiliation - the ethical partnership that grows between people who share genuine witness

Through the exercise of close witnessing and faithful representation, medical trainees begin to cultivate the keener sensibilities that engender affiliation in deep empathy with their patients. As a patient, I learned that the patient, too, must pay close attention, and be accountable for  truthful witness, to oneself as one would to another.

Consider, for a moment, the incontestable fact that serious illness is profoundly boring. Apart from undeniable spikes of high drama, much of catastrophic illness unfolds in waiting rooms, hospital corridors, sleepless nights, long days alone. Time thickens. Identity disappears. The healthy world recedes to a distant rush, while illness creates its own tedious tempo. But time is life, however speedy or slow. And inescapable boredom, properly embraced, can be revelatory. 

One day, for example, I was so idle and bored that I noticed myself watching the second hand of the wall clock move deliberately from tick to tock. How absurd, I thought—and how interesting! I began to practice noticing, to witness myself and my environs as one might pay attention to another person whom one hoped to understand. I began to credit minutiae, like the crawl of the second hand, like the shapes of morning light across the ceiling, the rhythms of nurses’ footsteps... I determined to make an art of noticing. Because for one thing, intentional noticing makes everything interesting.

As shamans and great artists admonish, “You must look until you see...”  A painting professor once bent over me to observe, “What you need is more colors that say green!” For green, of course, is never just green, but Prussian blue, alizarin crimson, Payne’s gray, yellow ochre light... 

I began to notice thoughts and sense-memories that surfaced in the stillness, often bringing insight to an absurd present. Once in the tracheostomy ward, for example, I remembered a time long past, when every Sunday I saw a young man whose quadriplegia had left him permanently flat on his back. His family wheeled him into church, impeccable in Sunday suit and tie, on a high gurney from which he noticed everything. Chaz was the eldest of seven siblings, all of whom deferred to him. In time he married his nurse; his life was full. But no matter how they jacked up his gurney, he was always flat on his back, surrounded by people standing. Lying there just like that myself—supine, silent and invisible amidst others standing—I often found myself thinking of Chaz, and the peculiar invisibility of the supine self.

During one long afternoon, my idle gaze fell upon a businessman in a gray business suit, standing in a circle of others who looked just like him. One hand jingled the coins in his pocket. In the other hand, an ice cream pop was melting. The more he licked, the more he angled out, hinged by the hand in the trouser pocket, in a sort of businessman hokey-pokey, as the ice cream began to slide. When all he had left was the stick, he began a little sidewinding sashay toward the trash bin, leading with his elbow, impossibly light of step. 

I was spellbound. The blithe, weightless effortlessness of his sashay to the trash bin and back. That very morning, upon limbs of poured concrete, I myself had spent more than half an hour and all my concentration just getting there. Yet this man in gray seemed completely unaware of the miracle he had just performed. 

This in turn summoned to mind a poignant, long-quiet sense-memory. Arriving unexpectedly at my parents’ home, I’d found my mother in a curious grapple with my grandmother, navigating the hallway from bedroom to bath. It wasn’t far. But my grandmother seemed rooted where she stood, her gaze fixed and far off. My mother, normally a clever problem-solver and infinitely kind, was by then exhausted and heartbroken over her own mother’s steady, pitiless losses to the vagaries of age. Having tried every other encouragement, my mother was at that moment bending to move my grandmother’s locked knees by hand. My eyes met hers, as they welled in frustration and sorrow. “It’s almost as though she’s doing it on purpose!” she cried. 

At the time I thought I understood my mother’s anguish. So many years later, watching that improbably light-footed man in the gray suit, while my own legs felt like stone pilings, I suddenly felt I understood my grandmother as well. Her stubborn step may have been the effect of confusion or medication or insidious nightly mini-strokes. But maybe she’d been stricken by something more elemental. Something like astonishment, the terrible bewilderment of no longer commanding one’s own body. In just this way, deep witness generates empathy, and once-opaque experience resurfaces to illuminate present mysteries. 

Conversely, the crucial clinical importance of the Narrative Medicine skillset is suggested in my encounters with physicians. At the outset of my illness, one preeminent surgeon, arriving unapologetically late, gave my scans a quick once-over, pronounced facial reconstruction impossible, and directed me to his PA to schedule an immediate hemimaxillectomy. Questions irritated him. My curiosity offended him: “Well! Ha, ha! I’m not going to teach you surgery!”

My instinct was to flee with a howl of indignation. This illustrious chief surgeon saw before him only a problem to be dispatched according to protocols. The prosthodontist consult that followed was more dismissive still, devolving into a spectacle of graphic photographs with derisive commentary; he brandished failed procedures, weaponizing his prodigious skillset. 

I left those consultations indignant, diminished, erased from my own story. Certainly these “bad” doctors failed me, but not because they lacked technical skill. They lacked narrative imagination. And by the same measure, I was deeply replenished by the “good” doctors:

In the first foggy hours after my initial seventeen-hour surgery, I awoke to find the chief of microvascular surgery standing quietly at my bedside. Moving my tray table aside, he sat down, looked at me with an expression almost tender, and whispered, “You made it.”

His words flowed over me like sunshine. Dissolving in surprise and gratitude, I mustered a feeble thumbs-up. Smiling, he pressed his own thumb lightly against mine. A tiny celebratory gesture. A high-five from the huddle. A victory kiss from Mr. Thumbkin.

You made it. 

Not “I saved you.” Not “The surgery succeeded.” 

You made it.

In three words he had restored agency to me. He had acknowledged that protocol includes survival, and that patients are participants. He had welcomed me back, into a partnership with my life, and with those whose skills would help me live it. If this is not a certified recovery room technique—this and Mr. Thumbkin—perhaps it should be.

Likewise my prosthodontist visited me during the delirious haze of postop week one. My eyes opened upon him at the window, far, far, far away in my tiny room, turning carefully to say, “First of all, Kathleen, I want to tell you how sorry I am your reconstruction was not successful.”

A helium cloud of gratitude filled me at this unexpected kindness. He had paused to simply mourn with me, which hadn’t even occurred to me yet. In that moment, empathy itself, not just for my condition but for my loss, was a healing potion. For in that moment, nothing could have been more restorative.

Indeed Narrative Medicine insists that healing begins in attention, in willingness to commit close witness to life, without and within; follows with the faithful representation of experience, rendering it visible, intelligible, shareable; and develops through affiliation, the ethical and emotional partnership formed through genuine witnessing—thus restoring human efficacy where illness threatens to erase it. 

So too my illness introduced me to the fine art of noticing, such that even catastrophic boredom, attended to closely enough, contains a revivifying array of colors. And intentional noticing makes everything interesting, at the very least.