Sharrona Pearl reviews Rearranged: An Opera Singer’s Facial Cancer And Life Transposed by Kathleen Watt (Heliotrope Books, 2023).
For a memoir about an extremely rare form of bone cancer in her face and a subsequent seven years of facial reconstruction surgeries – many of which were unsuccessful, became infected, or were otherwise logistically, practically and medically challenging – Kathleen Watt’s Rearranged contains surprising few words about pain. There was pain. There had to have been pain: excruciating, physically and emotionally debilitating, energy-sapping and hope destroying pain is, simply, inevitable across this many surgeries and this much disruption of life and livelihood and living. But Watt doesn’t tell us much about the pain. Instead, following the classic writer’s guidance, she chooses to show more than tell. But even still, Watt keeps it subtle, sometimes sly, with the showing glimpsed around the corners and lurking in the shadows even as it threatens to overwhelm…much like pain itself. This memoir is in fact not the story of pain, nor is it the story of patienthood or even adjusting to a new face and a new way of being in the world per se. It is, instead, the story of a life lived, under extraordinary and demanding circumstances, surrounded by family and loved ones and allies and advocates. It’s the story of a face lost and a new, different, artificially constructed face gained, but it’s also the story of the quotidian details of making a life, waking up and caring for pets and cooking dinner every single day. For Watt, the quotidian details include relearning how to breathe, how to eat, how to see with an eye patch and how to quite literally regain her voice (for talking and singing), because that is, and now always will be, her life.
Negotiating a Life Rearranged
It has been, Watt is careful to make clear, a good life: filled with music (she’s a professional opera singer) and love (from her before-gay-marriage-was-legal-in-the-US wife) and family (she’s one of many siblings whose lives are enmeshed and whose bonds are deep even across distance). And it is, still, a good life after and even during the many years that her primary relationship to it was as a patient and person always deeply tied to the consumer medical system. Watt recounts the realities of US health care and its many, many shortcomings in a tone that alternates between dry and rather surprisingly upbeat, not blinking when she learns that her doctor (egregiously, and in a shocking bioethical breach) told her cousin to “prepare for a funeral” (52), even as she locates an unexpected “window of personal agency” after “the high drama of catastrophic diagnosis subsides into a long slog of problem solving” (56).
As Watt tells the story of her life rearranged, her life reconstituted, she shows us a lot about medicine, particularly skull reconstruction, in a skilled, accessible and deeply personal way. We see through her narrative the endless frustrations of bureaucracy and scheduling and insurance, none of which ever works as it should. Nor, as it emerges, do the surgeries themselves, if and when they aren’t cancelled at the eleventh hour after arduous preop was already complete. It’s hard. As Watt shows more than tells, it’s really freaking hard. Alongside the hard – and not because of it – is the good and the beautiful in precarious balance. There is partnership with her lover Evie, who is beside her (quite literally snuggling and sometimes sleeping in the hospital bed), and the care of her siblings, and the joy of her nieces. There is, as this richly woven story of a richly woven life shows us, presence. It is, even at its most challenging, a life full not least of the opera and what it means to be a singer in body and soul and have that taken away.
There’s not a lot of lament here, but like the pain, it sneaks up on you. Beneath Watt’s narrative is a struggle to come to terms not just with what she has lost, but about her own sadness around it. She says often – every time she seems to overhear herself sounding less than chipper – that she knows how lucky she is. And of course, as she recounts, she is breathtakingly lucky to have survived such a rare and devastating disease, and to have ultimately, after untold surgeries and complications, stabilized with a totally reconstructed face. And yet: it would be okay to be angry. It would be okay to be heartbroken. It would be okay to be really, really sad about what she had to go through, and what it cost. Perhaps Watt felt all those things alongside the depression she alludes to but doesn’t much discuss, or the alcohol dependence she describes but doesn’t much examine. I don’t know for sure, and I absolutely understand why, even in an honest and open memoir, she (or anyone) would hold some pieces and feelings and experiences close and private. What I do know, because Watt shows (rather than tells) us is that she felt deeply conflicted about feeling anything other than grateful. Watt’s complicated honesty in turn complicates dominant celebratory narratives about disability while at the same time insisting, in a deeply personal way, that disability is not only about loss. We can perhaps detect traces of Ellen Samuels’ framing of crip time in Watt’s embrace of the experience of becoming and sometimes staying disabled, in all its complexity and challenge and difficulty that is not all or even mostly about stigmatizing loss.
Adapting to and living with disability can be really hard and as Watt again shows, it takes its toll. I don’t want to spoil too much, but I’ll say this: as Watt takes us through her life post-diagnosis, her partner Evie is by her side every step of the way. Together, they navigate Watt’s cataclysmic diagnosis and subsequent surgeries with humor, grace, support, and deep and enduring love. And even still, as Watt shows us in the increasingly long pauses and emerging cracks in the relationship, this process is a heavy one, and anyone (and any two) would stagger under its weight. Watt’s tone is unfailingly generous (to everyone, and especially to those she holds dear), so you really have to work to see the breaks in this strong partnership, even as Watt shows and tells us how they are mended.
Narrating Feeling, Visceral Reading
This memoir is (as it would be from an accomplished professional singer and artist) a deeply sensory experience. I felt the words in my body even as I read them in my brain and was moved by them in my soul. When Watt described her first attempt at eating with her tracheotomy (178) I had a visceral reaction, feeling my own body and straightforward experience with chewing and swallowing, newly aware of the feel of my tongue and my saliva and the movement of food through my body. I read her description of her eyelid complications (187) with my own eyelids lowered, my fingers splayed as I peeked at the words exactly as though I were watching a particularly unsettling scene in a film that I couldn’t look at head-on. Watt’s style of showing enrols a powerful experience of feeling which isn’t quite knowing, but it’s as close as we can get.
Watt wants us to look at the uncomfortable parts head-on. She, in strong resonance with disability studies theorist Rosemarie Garland-Thomson’s notion of staring, insists that having a child look at her eye patch, at her reconstructed face, is “much sweeter than being invisible” (222). An act of emotional generosity causes her to be “delighted at being seen” (224). We can only see, Watt shows, if we look: not just at people’s faces, but who they are and how they live their lives. That’s the most powerful message of this narrative, and why Watt chooses time and again to show instead of tell us about her medical experience as part of, and interwoven with, her overflowing, everyday capacity to give and receive love. In so doing, she causes us not only to look but also invites us into her life, in all its challenging, beautiful, disabled complexity.
Garland-Thomson, Rosemarie. 2009. Staring: How We Look. Oxford: Oxford University Press.
Samuels, Ellen. 2017. “Six Ways of Looking at Crip Time.” DSQ 37:3.
About the Author
Sharrona Pearl is Associate Professor of Medical Ethics and History at Drexel University. She is a historian and theorist of the face and body and has published widely in Victorian medicine and science, media and religion, critical race, gender, and disability studies, bioethics and medical humanities, prison studies and written on face recognition and AI. Her latest book is Do I Know You? From Face Blindness to Super Recognition (John Hopkins UP, 2023) explores the face recognition spectrum. Pearl maintains an active public writing profile, and has published articles in The Washington Post, Real Life Magazine, Lilith, Tablet, JTA, Chronicle Vitae, and Kveller.