“I am sorry for your loss,” the message lights up the room. After inching my post-surgery body up against the pregnancy-turned-mastectomy pillow, I pick up the phone and type, “Which loss, my breast, or my father?” I delete. “Thank you,” I write instead. “I just heard about your dad, I am so sorry,” another friend writes. “Thank you,” I reply without revealing my other debit. The language of loss itself an inexactness: I have not misplaced my breast nor my father; One is at a lab, the other at a funeral home, both are being prodded for different reasons. “On a happier note, how is everything with the book?” the friend continues. “So far, so good with the boob,” I hit send before realizing the autocorrect. “I mean boob,” I write again. “No! book, not boob.” But autocorrect knows, even if the friend does not.
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The book, about language, motherhood and multilingualism, just over two months away from publication then, is in publishing’s so far, so good realm: final edits done, the cover revealed, proofs ready. My newly reconstructed breast, the incidentally found cancer removed, is accurately also, so far, so good. The father is the exception. It is the meeting of lexical analysis and a scrutiny of gratefulness or, a platitude of gratitude in the so far, so good while messages of condolence, commiseration and congratulations collide, and I exist in a perpetual state of disbelief.
I have just enough time to edit my acknowledgements before press and I add how my dad will never hold a finished copy—the ludicrous cruelty in having to meet this deadline is not lost on me. The day I begin adjuvant chemotherapy, finished copies of my book arrive and after treatment, I dutifully make an unboxing reel. In the video, the debilitating effects of chemo have yet to hit, my hair has yet to thin and for everyone who does not know the losses that overshadow my gains are none the wiser. To my delight and distraction, congratulatory comments and heart emojis flood the comment section.
A friend’s brother dies and on the day of his funeral I text, “I hope it goes as best as can be today, I am thinning of you.” A few weeks after my first chemo, my hair begins to shed. As autocorrect insists on sharing my truth, I am thinking of her, but I am also incessantly thinking of thinning hair. Every just autocorrects to Judy, a common occurrence except Judy is the name of my hair stylist who has been cutting my previously thick rib-length hair for nearly a decade. The autocorrect a relentless reminder of another “loss” in the multitude of losses. In another message, about it aptly appears on my phone as abou tit. When I am not thinking about thinning or hair stylists, I am thinking about tits. “Crazy story!” I text a friend in between treatments when I am feeling well enough to go out. “We are no longer going to Pearl Jam tonight, Eddie Vedder had to cancer the London show.”
Two days after publication day, my father’s ghost arrives in an Amazon box, the Prime logo a promise of quick arrival without the consideration of the departure in between purchase and delivery. A complicated and tortured man but a supportive dad, my father wanted to raise pre-order numbers, important for debut authors I am told repeatedly and share with my parents when he is still alive. Before his death, my dad pre-ordered 20 books to be sent to my London flat with the plan to order 30 more before publication. As I stare at the box I think of the line from Leslie Jamison’s Splinters about her own complex father-daughter relationship: “We aren’t loved in the ways we choose. We are loved in the ways we are loved.”
The searches on my laptop alternate between, “How important is Book Tok?” to “rates of cancer recurrence with chemo?” One day I type, “celebrities with breast cancer”. I look for stories of extremes, all-encompassing mourning, or joy and fear juxtaposed. I learn Olivia Newton-John was diagnosed with breast cancer the same weekend her father died. Julia Louis-Dreyfus received her breast cancer diagnosis the day after she won her sixth Emmy, saying in an interview it felt like a “black comedy” and a “bizarre juxtaposition”. Author Sarah Weinman completed her debut crime book in the same year she underwent grueling chemo and radiotherapy. “Other people tell me this is an extraordinary timeline. But what else was I going to do?” writes Weinman.
I text a friend in between treatments when I am feeling well enough to go out. “We are no longer going to Pearl Jam tonight, Eddie Vedder had to cancer the London show.”
People tell me it is extraordinary what is happening in my life at once. But like Weinman, what else was I going to do? After publication day and the shock of a diagnosis and a parent’s death morphs into numbness and survival, what I also do is read. Throughout punishing months of treatment coupled with a grief that floors me indiscriminately, I search for texts that not only parallel my own experience but allow me to consider both the corporality of mourning and disease, as well as the etherealness of a life torn apart in a world where thousands of lives are destroyed daily.
I am a linguist with no language, a woman desperate for other women to translate what is happening in my life, or at least to feel as if I am in a languageless community, one that offers an understanding of what is universal and yet inconceivable, and for each of us, a unique experience. (The irony is not lost on me I have, only a few weeks earlier, published a book on the endless possibilities of drawing on multiple languages, a book with the subtitle “finding meaning”.) Now, I crave reflections on how a story of disease and mourning is written on both the body and the page, how a lonely world of illness and grief may be filled with an abundance of creativity and sacredness, and to yes, find meaning in between the universal and the unique, the political and the personal and especially, in the ordinariness of both illness and death but also, their otherworldliness.
“Illness is an outpost: lunar Arctic, difficult to reach. The location of an unrelatable experience never fully understood by those lucky enough to avoid it,” writes Sinéad Gleeson in Constellations. “This malfunctioning version of me was a new treasonous place. I did not know it; I did not speak its language. The sick body has its own narrative impulse. A scar is an opening, an invitation to ask: ‘what happened?’ So we tell its story. Or try to. Not with an everyday voice, no, that doesn’t suffice.”
“The body is an afterthought,” Gleeson begins her collection of essays about illness, pain, womanhood, motherhood and a body that requires medical attention often, “Until one day, something changes…” Gleeson holds her often-suffering body, diagnosed with monoarticular arthritis at 13, one that undergoes countless interventions, at 28 is diagnosed with leukaemia, and some years later, births first a son, and then a daughter, in revered holiness, for literary interpretation but also as an offering to the reader of the most beautiful brokenness and endless healing that occurs in a woman’s life. When my need to ask not, ‘why me’ but, ‘what did I do to make this happen?’ arises, I turn to Gleeson’s words to consider the extremes occurring in my life as simply one part of my story despite residing forever in my body: a singularity in what I hope to be a sea of endurance: “From ill health to heartbreak, we live inside the same skin, aware of its fragility, grappling with our mortality,” Gleeson writes. “Surgery leaves scars; physical markers of a lived experience encouraging pain.”
I crave reflections on how a story of disease and mourning is written on both the body and the page.
I devour The Undying by Anne Boyer. As soon as I am done, I begin again, pausing on impeccable phrases that echo, with both existential precision and often a much-needed humour, my experience with breast cancer and its pain, other people’s reactions and especially, as Boyer writes, the “self-preservative self-destruction” of chemotherapy. In a timeless void after my diagnosis, I grasp at notions of normalcy until Boyer reminds me there is now a before and an after: “To be declared with certainty ill while feeing with certainty fine is to fall on the hardness of language without being given even an hour of soft uncertainty in which to steady oneself with preemptive worry, aka now you don’t have a solution to a problem, now you have a specific name for a life breaking in two.”
As wonderful and well-meaning friends count down my treatments, I am both enveloped in much needed and appreciated love and care but simultaneous feel resentment at the implication there is a finish line. “Sensation is the enemy of quantification,” writes Boyer while in another part of the book, lists all that breast cancer negates, or its “total strikes”, some temporary others forever including, hair, eyelashes, eyebrows, thought, language, vigor, maternity, productivity, breasts. And yet, this “disassembly crowds a cosmos, organs and nerves and parts and aspects announcing themselves as unfurling particulars: a malfunctioning left tear duct—a new universe; a dying hair follicle—a solar system; that nerve ending in the fourth toe of the right foot—now eviscerating under chemotherapy drugs—a star about to collapse,” she writes. We are bodies and we are time, but we are also so much more.
I first gravitate to Kate Bowler’s Instagram after the algorithm serves me a post where the author and professor thoughtfully scrutinizes gratefulness: “Gratitude is not the solution to the problem of pain,” says Bowler who was diagnosed with stage IV colon cancer in her mid-thirties not long after the birth of her son. Her social media posts become mantras: “Hope is not a strategy”; “You are not the bad thing”; “You can’t choose joy”. I order Bowler’s Everything Happens for a Reason: And Other Lies I’ve Loved. In its pages, I find the practical—an appendix on what people should/shouldn’t say in response to illness and grief! —but also the permission to discard the pithy and ubiquitous, no matter how well-meaning, comments and judgments from friends and strangers. “The world is a balance sheet,” writes Bowler. “Subtract from one column, add to another, as if we could all agree to share pieces of this too-short, too-long life.” As Boyer also notes in The Undying, “Women with cancer are often forced to watch themselves dissolve, lamentable objects intolerable as lamenting ones, witnesses to everyone else’s sad stories but socially corrected as soon as a sadness issues from their own mouths.”
Both Gleeson and Boyer write about other artists and writers that held and comforted them during the dark days of illness. For Gleeson, Lucy Grealy, Frida Kahlo and photographer Jo Spence were “lights in the dark for me, a form of a guidance. A triangular constellation,” she writes. On the last pages of her memoir, Boyer, references writers who died young and who she wished had lived: Mary Wollstonecraft, French-Peruvian philosopher, Flora Tristan and philosopher Margaret Fuller. “Before I got sick, the work of these dead women had kept me company…and in my forty-first year, I gathered these writers around me, too, detached myself from the things of the living little by little.” (Boyer was diagnosed at 41.) For me, I needed stories of the living, women who had made it through not intact as this I learn is an impossible feat, changed forever but still here. As Boyer had hoped and writes in her epilogue, my lost body parts steadily regenerated via her book’s sentences, as did my soul. And as other women had done for Gleeson and Boyer, they, along with Bowler and their texts were, and continue to be in a life navigating the after, my lights in the darkest of times.
At my post-surgery check-up, three months after my mastectomy, my surgeon’s colleague examines my reconstructed breast and evaluates the symmetry of my cleavage. “Do you feel you need any adjustments?” she asks. I would like an adjustment to the past six months of my life, I want to say. Instead, I say, no, I am relieved I healed well and am grateful for the cancer-free breast. I think back to the morning before my surgery when my surgeon marked up my chest with a Sharpie. In the moment, I nervously complimented her red clogs, a love of the footwear influenced by childhood memories of my father wearing IKEA clogs. An ocean apart, I had yet to learn of his death then, or to master the language of illness and loss, two vernaculars that now influence me immeasurably. I had yet to receive texts of condolence, and as few friends knew of my diagnosis then, of disbelief and sympathy. I had yet to read Boyer, Gleeson or Bowler and be saved by their words or find, as Boyer writes, my own condition of “lostness” that finally made me real.
The first time I meet my surgeon days after my diagnosis, in between tears, I tell her about my then forthcoming book. She tells me she has just listened to a popular radio show on whether the languages we speak influence the way we live. During the meeting, I promise to get her a copy when it comes out. Back at the post-surgery appointment I ask her colleague to pass on my book and before I leave, I take out my Sharpie to mark-up my work the way the surgeon marked up hers, my breasts the morning of my surgery. In the dedication, I want to write, “Thank you for saving my life” or, “Thank you for the reconstructed breast” or, “Thank you for the symmetry”. Instead, I scribble, “Thank you for everything,” and sign my name. The surgeon (re)wrote a part of my story on my body, I offer her a part of it on the page.
