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Exploring disfigurement and self-worth

Kathleen Watt
Conditions
September 21, 2023
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An excerpt from Rearranged: An Opera Singer’s Facial Cancer And Life Transposed.

In the usual post-op haze after reconstructive surgery, in a wide-open, multi-bed recovery room partitioned by wavy muslin walls, I heard one strangled sentence rise above the racket of skittering curtain hooks.

“Honey, I’m a monster!”

My gaze swiveled toward a half-hidden silhouette backlit by fluorescent bed lamps. His large palm cupped the hospital phone close, but I heard it—throaty, stifled, breaking into dry sobs, his long torso buckling. My heart flipped, remembering my own disfigurement, with hours to just lie there remembering.

Any patient who loses his face to a predacious cancer may feel prey to the surgeon’s blade himself, even as the blade saves his life. What’s left of me? he may think. Who am I now? Or, I might as well be dead. Psychologist Nichola Rumsey, OBE, calls disfigurement “… initially a sort of bereavement, followed by a tremendous … overpowering sense of inadequacy and isolation.”

​No battle waged in the craniofacial OR can ever be won outright, of course, but rather protracts over months, even years of tracheostomies, osteotomies, other -otomies … The crucial challenge is to rally patients like us—rescued from the brink of death, but facing devastation no one can ever anticipate. Whatever can be done has been done; we’re now disease-free. Not dying. Just scarred. Ugly. Ugly for life. The disease-free craniofacial patient’s road back thus becomes not just grueling, but also lonely, in what memoirist Lucy Grealy described as “the deep, bottomless grief … called ugliness.” So, meaningful restoration depends as much upon a surgeon’s shamanistic insights, and the caliber of his adjuncts, as upon scalpel and stitch.

Neurophysiologist Jonathan Cole calls disfigured faces “… the most public of all … always on display … [which] may come to define a person’s whole existence and persona.” Indeed, psychologists study disfigurement as “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.”​

Alas, the human predilection for pleasing harmonies is universal, and not unique to our own exhibitionist era. From the Golden Age of Greece through the Golden Age of Hollywood to the Viral Age of TikTok, beauty becomes virtue by equivalence. Physical beauty, in the shape of its times, signifies what is good, and worthy of pursuit. In Gay Nineties America, e.g., an architectural movement called “The City Beautiful” proposed to advance moral and civic virtue through urban beautification. Accordingly, many cities also passed “Ugly Laws”:

​Any person who is diseased, maimed, mutilated or in any way deformed … an unsightly or disgusting presence … shall not expose himself or herself to public view …

Discreetly color-coded benches were designated for any such persons who wished to take the air. In some cities these laws remained on the books well into the Nixon administration.

The archetypes by which we measure each other and ourselves have deep roots which do not die back within mere decades of disability theory. Even in 2005, The New York Times could cite Canadian research concluding that “parents take better care of pretty children than they do of ugly ones.” One churlish scientist is quoted spinning outdated Darwinisms: “There are a lot of things that make a person more valuable … physical attractiveness may be one of them.”

Moreover, disfigurement encumbers interpersonal relations. For even ordinary human communication relies upon mini-movements of tiny facial muscles, orchestrating our utterances, giving them life, conveying subtext and personal identity. Indeed, human faces in conversation instinctually mimic others’ mini-expressions—thus affirming ourselves in our conveyed identity, seeing it reflected in others’ facial mimicry.

After my initial barrage of facial surgeries, I couldn’t form any facial expression whatsoever. No micro-expressions issued from me; precious few rebounded. I found I missed seeing myself reflected. Behind my mask of stitches, staples, and scars, I began to lose track of my own subtext. I began to feel bereft of myself.

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Then again, the mask itself is equally intrinsic to ordinary interpersonal communication:

Come on! Smile! This smarmy tip hounds women still, as indictment, veiled rebuke, and invitation to mask. Alas, my natural neutral facial expression is an unladylike glower. Moody. Preoccupied, perhaps … Come on, smile! It can’t be that bad! I’ve heard it forever. That disarming comeuppance from chirping superiors, always surprising, undermining, infantilizing.

Contemplating the performing arts, musicologist Linda and Michael Hutcheon, MD, write, “the psychic state of the singer onstage, open to intense public scrutiny and competition, [is] of crucial importance … [and] that psychological state has physical manifestations.” (Bodily Charm, 2004)

Singing the role of Sieglinde, for example, I immersed myself unreservedly. The love scene, the mad scene, the shadowed Norse Gestalt. I was totally into it. So much so that one influential critic was moved to opine: “[Sieglinde] kept making awful faces, perhaps for vocal-technical reasons; perhaps for inappropriately exaggerated acting ones …”

I read the morning paper while straphanging to my day job as a bank teller, as every commuter 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. Still, my public humiliation did shake loose some unexpected fan mail.

“The critic’s remarks remind me of my wife’s father, who tells her she’s not very attractive when she’s angry …” read one. This nose-gay from a stranger sweetly assuaged not only my performer’s tender ego, but an ancient wound as well. For, decades earlier, my own father had scalded me with the same reproach. When my tears spilled onto the page, I discovered how long I’d been craving redress. Of my mad scene, a violinist in the orchestra said, “I don’t understand German, but when my aunt began to hallucinate with dementia, she looked exactly like you up there, so …”

Such reassurances shored me up to reprise my role the following week in Manhattan, as required by my contract. To overcome my shame, I would have to locate within myself an authentic definition of beauty, and repossess my face, my organ of expression—however “awful,” “inappropriate,” or “exaggerated.”

My next performance was rewarded with soul-soothing huzzahs. One local critic even pronounced my Sieglinde “best of all …”

Now, tethered abed, an unsightly mash-up of what was and what was yet to be, heavy-hearted with my neighbor-patient’s sorrow, and my own, I sensed something gentler surfacing. Nothing substantial. Only a little something to hold onto, a bobbing float in the chop. Just an inkling. A sense that maybe we’re not monsters. No matter what we read in the papers.

Kathleen Watt is an opera singer and author of Rearranged: An Opera Singer’s Facial Cancer And Life Transposed.

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Exploring disfigurement and self-worth
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