An Opera Singer's Facial Cancer
And Life Transposed
REARRANGED tells of leaving the operatic stage for a starring role opposite the Big C. Bone cancer in my cheek ended my career as an opera singer and brought me face to face with mortality, disfigurement, the meaning and uses of beauty—and a lot of left over pieces.
A small corps of medical elites convened to excoriate my diseased bones with surgical wizardry and lethal toxins, and stayed on to restore me to myself through a brutal alchemy of kindness and titanium screws.
REARRANGED is a tale of letting go to hold on, of putting old pieces to new uses—and of the unlikely arrangements that make it all work out.
READ AN EXCERPT:
ONE DAY IN A TRACHEOSTOMY WARD subdivided by wavy walls of striped muslin, as I lay half-reclining in a disoriented haze, one low, confidential sentence rose to my ears above the racket of skittery curtain hooks.
“Honey, I’m a monster...”
I looked over to see the silhouette of a tall figure backlit by a long fluorescent bed lamp, half-hidden by the partitions between his cubicle and mine. He cupped the mouthpiece of a hospital phone close to his face, but I heard it—hollow-throated, suppressed, and breaking into a dry sob. His long torso buckled on the thin edge of his hospital bed.
My eyes stung with his sorrow—knowing neither the extent of his injury nor to whom he spoke. Then, for the first time, the thought of disfigurement crossed my mind. And I had the time to lie there thinking about it.
When a patient loses his face to a predacious disease like cancer, he may feel himself prey to the surgeon’s blade as well, even as the blade saves his life with a deft slice at his tumor—the tumor, and any identifying features in the way.
What’s left of me now? he may think. Who am I anymore? Or, I might as well be dead.
Psychologist Nicola Rumsey, founder of Britain’s Changing Faces charity, writes, “...disfigurement [is] initially a sort of bereavement, followed by a tremendous, almost overpowering, sense of inadequacy and isolation.”
The battle for life may be waged in the craniofacial OR but not won in any conclusive sense. It continues into the tracheostomy ward, where the challenge is somehow to rally patients like us, rescued from the brink of death, to take up devastated lives most of us are woefully unprepared to face. All that can be done has been done, and we’re now disease-free. Just “ugly.” No longer at hazard of death. Just ugly. Ugly for life.
As the drama of the life-or-death crisis subsides with recovery, the disease-free patient’s road back is not only grueling but also lonely. For scant prior experience prepares a patient to face what Lucy Grealy described as “the deep bottomless grief...called ugliness.”
People fall apart in lots of ways, but when the wreckage is in the face, restoration to any meaningful aliveness depends as much upon a surgeon’s shamanistic insights, and the quality of adjunct services, as upon mere scalpel and stitch.
“The disfigured face is the most public of all faces... always on display... [such that] disfigurement may come to define a person’s whole existence and persona,” writes neurologist Jonathon Cole.
It is no comfort to know psychologists study disfigurement under a clinical entity called the “Quasimodo Complex.” Quasimodo, the deeply empathic Hunchback of Notre Dame, of whom Victor Hugo wrote there is “nowhere on Earth a more grotesque creature.”
The human predilection for pleasing harmonies, even as experience everywhere veers toward disharmony, is universal, and not unique to our own exhibitionist era. Thus, from the Golden Age of Greece to the Golden Age of Hollywood, beauty is virtue by equivalence. From Leonardo’s Vitruvian Man to the Cosmo Cover Girl to social media—physical beauty, in the shape of its times, signifies to all what is good and devoutly to be wished.
In the United States of the Gay Nineties, for example, there arose an architectural reform movement called the “City Beautiful” proposing to advance moral and civic virtue through municipal planning and urban beautification. Accordingly, many American cities also passed “Ugly Laws,” some of which remained on the books through the Nixon administration:
... Any person who is diseased, maimed, mutilated or in any way deformed, so as to be an unsightly or disgusting presence... shall not therein or thereon expose himself or herself to public view...
More magnanimous municipalities designated discreet areas of color-coded blue benches for any such persons who might wish to take the air.
The archetypes by which we measure each other and ourselves have deep roots which do not “die back” within mere decades of disability theory or adventurist portraiture. Even in 2005, Canadian research could conclude that “parents take better care of pretty children than they do of ugly ones.” The New York Times quoted a churlish scientist spinning outmoded Darwinisms: “There are a lot of things that make a person more valuable, and physical attractiveness may be one of them.”
Long after surgical improvements, one facially deformed man reported, “...I find myself so unattractive that I feel I should not be mixing with others. I feel as if I am letting [them] down. I get nervous, and that makes [them] nervous. I give out bad vibes...”
For a time after my own cancer surgeries, I felt as bereft of myself as I was of my voice. I could scribble my needs, issuing updates from behind my mask of stitches and steri-strips, but my face was unable to deliver the myriad mini-movements that orchestrate the words, giving them life, personal meaning, identity. And I missed seeing my reflection in the faces of others. I began to lose track of my own subtexts, and myself.
Of course, some form of mask had always been required. Come on, smile! This smarmy tip from chirping men has dogged women forever, an indictment and a veiled rebuke—however innocuous its intent. On a theory that shapelier brows would fix me, I sprang for my first tweezer at fourteen. Sadly, my neutral expression has always been an unladylike glower, moody, preoccupied. Disqualifying. Come on, smile! It can’t be that bad! That disarming comeuppance, always surprising, undermining, infantilizing.
Writing on the bodily aspects of operatic singing, authors Linda and Dr. Michael Hutcheon write,
Singing not only demands top physical condition but also top psychological condition... The psychic state of the singer onstage, open to intense public scrutiny and competition, [is] of crucial importance... [and] that psychological state often has physical manifestations.
When I sang the role of Sieglinde in the American provinces, I applied myself to the role with all my might. The love scene, the mad scene, the shadowy Norse gestalt. I was totally into it. My naturalistic performance moved one influential critic to opine:
[This soprano] is a beautiful woman, but she kept making awful faces, perhaps for vocal/technical reasons, perhaps for inappropriately exaggerated acting ones...
I read the review in the morning paper while strap-hanging to my day job as a bank teller, as every neck on the train craned to watch my world implode. It was all I could do not to wrap my burning face in the Boston Globe.
Within days, that review was answered by a personal letter from a Wagnerite who knew me only by my performance: “. . . the critic’s remarks remind me of my wife’s father, who tells her she is not very attractive when she is angry. . .”
Many years earlier, my own father had scalded me with the same reproach. But in an instant, this nose-gay from a stranger soothed not only my performer’s ego, but my old wound as well. When my tears spilled onto the page I realized how long I’d been craving redress.
A violinist in the orchestra said to me of the mad scene she watched from the pit, “I don’t understand German, but when my aunt began to hallucinate with her dementia, she looked exactly like you up there. So I figured...”
My opera company contract called for a second round of performances in New York City. I had less than a week to pull myself together and reprise my role where the stakes would be even higher. Just days to hurt, heal, and reclaim my battered self-image. To relearn to love my face—the organ of my expression. I had to know what I knew and be who I was, “awful,” “inappropriate,” or “exaggerated.” To follow through just as I was, I would have to locate a definition of beauty, for myself, to ferry me forward, whatever storms may howl.
My New York performance was rewarded with a round of soul-soothing huzzahs, and at least one critic found my Sieglinde “Best of all. . .”
Now lying abed under a welter of tubes and heavy dressings, my face an unsightly mash of what it used to be and was yet to become, under the weight of the neighbor patient’s sorrow and my own, something gentler surfaced. Nothing substantial. Just a little something to hold onto, a float bobbing in the chop. Just a sense that we probably are not monsters. No matter what we read in the papers.
An opera singer's facial cancer
And life transposed