Liz Sutherland reviews Breath by Carly-Jay Metcalfe


by Carly-Jay Metcalfe

ISBN 9780702268359



Breathing was one of the few things in life I took for granted. Until I was 20, out with pneumonia for four months, three fractured ribs from excessive coughing. Then again at 32, post-COVID coughing for three months, two fractured ribs that time. Sickness and disability have a way of reframing things we otherwise consider inevitabilities: breathing; life.

Metcalfe establishes the tone for her bodily experience of Cystic Fibrosis (CF), and of the relentless heartbreak of losing friends to CF, at the outset of Breath. As a reader, I’m scraping into ‘stiffly laundered white sheets’ (5) with her as she wonders if these same hospital bed covers were recently the shroud of a child who’d just died. A morbid thought I push to the back of my mind anytime I walk the halls of a hospital. Places where people, lovers, significant others have died. Will die. Metcalfe reminds us of our mortality in the same breath as calling out the West’s culturally ingrained fear of death and dying.

‘The only thing promised to us in life, is death’ (211).

This inevitability, and our cultural reticence to witness it, is the pulse of Metcalfe’s memoir and her broader vocational drive. She doesn’t shy away from the impetus of her career and life choices: how they’ve been shaped by her experiences with CF and everything the illness created in, and stole from, her life. Where her fragile human body experienced intense and prolonged trauma and grief, came out the other side, survived. Against all odds, when others did not. Survived, but at what cost?

‘Some kids held on for weeks, while others only took a few days, but the end result was always the same: we were left breathing out our guilt in their absence’(17).

Breath centres on a lung transplant Metcalfe received at the age of 21, oscillating forward and backwards through time. She wields memory as a literary device and plays on subjectivity, flicking between past and present tense and timeframes, sometimes within the space of neighbouring sentences. At times dizzying, it’s articulated with self-awareness of how memory melds and warps with time: ‘I have a knack for opening jars of memories, but these moments are often trapped with an eternal present, and I can’t reconfigure them into a memory because they are so pervasive’ (34). Metcalfe struggles with forgetting: she can’t.

She expresses her ‘catalogue of traumatic events’ (11) as almost viral. Clinging tightly to her cells and nerve endings and brain paths as the decades pass. It may have been easier if she were able to fall into self-protective amnesia like some of the people in her life. But as her experiences with CF were grounded in the visceral, so too were her memories sutured deep under the skin.

‘Over the years, a faint memory – of surgeons pushing through skin, muscle, and fascia, and cutting through the strata of my chest until they strike bone – grows into something more tangible […] What happens in our lives writes itself into our flesh. There is wisdom in the body – a deep wisdom that beats its way through your blood. The body remembers’ (94).

Metcalfe’s memoir truly shines when she relates this pervasive, almost viral nature of living with CF to that of COVID and HIV. When she speaks of COVID from her perspective as an immunocompromised person, it is hard to ignore the mass disabling event that has created another layer of fear of death and dying. Where governments worldwide in the 2020s have decided that the economy is worth more than people, especially disabled and immunocompromised people, governments of yesteryear made the same calculations with queer people, sex workers, and people who inject drugs. Metcalfe compares cancer in the early 1980s with AIDS, similarly stigmatised and misunderstood. The kids with cancer were housed in cubicle A of Turner Ward, a ‘trinity of linoleum, stainless steel and suffering, it was a waiting room for death within the Royal Children’s Hospital’ (12), whereas the kids with CF stayed in cubicle E. This ghostly estate forms the backdrop of much of Metcalfe’s memoir. A spectral character in its own right. The harsh words of doctors clogging up its arteries. Dying children’s struggling breaths inflating its lungs. In speaking with a doctor who worked with people with HIV/AIDS on Oxford Street, Sydney in the 80s, Metcalfe realises their survivors’ guilt are kin.

‘We were talking about how many CF friends I’d lost, and he shared his own experience of collective and cumulative grief from losing hundreds of people in his community’ (177).

But where there is mutual understanding in some ways, Metcalfe seems to pull away from the possibility of camaraderie. Referencing Susan Sontag’s Illness as Metaphor, Metcalfe refutes the universality of the concept of a “before” and “after” illness. Her experience is that of being born into illness; born into a constant state of grief and resilience. This does lend her to being uniquely qualified to write this book, but I found myself frustrated that connections of this nature weren’t explored more fully, despite, or even due to, what set them apart.

As Metcalfe herself notes: ‘sickness has a way of making people seem less banal and far more interesting than they actually are’ (128). Though balancing the personal with the political or social in memoir is a tightrope act that rarely executes a perfect performance, I wished she went deeper into her own and other philosophical beliefs and mythologies around death and histories of CF and other chronic illnesses. There are moments when she leans into tangential storytelling as a reprieve from the self-contemplative nature of memoir, linking the personal to the other. These reflections are fleeting, however, and tend instead towards the rhetorical.

I recognise, though, that it’s in the personal that disability justice and medical advocacy becomes most effective. Metcalfe transmutes her survivor’s guilt into action by bringing to light some of the many facets of receiving medical care in this country. She recounts cavalier and callous medical professionals, many of whom were doing their best under a system of budget cuts and not enough staff. Some of whom resorted to eye-rolling and dismissing her pain post-op. Others who tactically and maliciously abused her and other CF children.

Metcalfe undoubtedly traversed harrowing and traumatic terrain over the course of her life thus far, and reading even a glimpse of it engenders an affinity for her perspective. Where I struggle with personal disability advocacy, however, is when it veers into violent illusions and exclusionary language. At times, Breath feels insensitive to the situations of other people, using them as metaphorical fodder to get the point across: ‘Ollie and I drove to McDonald’s, then we stopped at a lolly shop where I scraped half a kilo of diabetes into a brown paper bag, before driving back to Ollie’s where I ate like a starving refugee on his bed’ (66). Comments like this, and others centring around fatphobia, were difficult to read as a disabled person with a history of eating disorder.

It struck me as odd in a memoir about death literacy, disability justice, and advocating for organ donation, that Metcalfe at times eschewed specificities in lieu of generalities. I wished that she’d taken readers on her interior investigations into why she occasionally defaulted into using well-trodden and discriminatory phrases to describe something about her life. Examined what is repulsive or fearsome about diabetes? Questioned what it is that draws to the plight of people fleeing genocide and persecution to illustrate a personal experience? Even in our advocacy, we must still be aware of how our nation has treated people of refugee status for decades, and how our society and medical industry treat fat and disabled people. But none of this should be taken to minimise the impact that Metcalfe’s Breath will hopefully have on public opinion and public health systems as they view and relate to those with chronic illness and disabilities. 

‘More than once, I’d felt the breath of my friends’ departures, the timbre of their spirit winding down, the sad predictability of history repeating’ (5).

Despite its limitations, Breath is both a love letter and a call to action. Honest, lyrical, raw, and moving. It remembers the ones who died too soon, and reminds us to embrace this body, this life we have right now. Because we never know when this breath we take for granted will be our last.


Works Cited

Metcalfe, Carly-Jay. Breath. UQP, 2024.
Sontag, Susan. Illness as Metaphor. Farrar, Straus and Giroux, 1978.

LIZ SUTHERLAND (they/them) lives on the unceded lands of the Wurundjeri people of the Kulin nation. Liz is studying a Master of Arts (Writing and Literature) at Deakin University, is the COO of a nonprofit organisation, and recently joined the Board of Overland. They were a finalist in the Pearl Prize 2024 and the 2023 OutStanding LGBTQIA+ Short Story Awards. Their writing has appeared in the Hunter Writers Centre Grieve Anthology, the Wheeler Centre’s Spring Fling event ‘Stripped Queer’, ScratchThat Magazine, Into the Wetlands Poetry Anthology, at Q-Lit festival events, and more.