Shaping the Fractured Self: Poetry of Chronic Illness and Pain (UWAP 2017) edited by Heather Taylor Johnson was launched by Jennifer Harrison at the Dax Centre, University of Melbourne on 11 May 2017.

In a marvellous SBS documentary about New York women who live octo-nonagenarian lives full of vitality and insouciant style, one of the women noted, “As you get older, if you have two of something one of them is always in pain.”

Pain, then, is something that confronts us all with age. This week my mother, who is in her late 80s and lives interstate, has spinal pain. After we had talked about it for a while on the phone she said suddenly, “That’s enough about me. I hate talking about me this way. Tell me about you.”

Illness and pain are also very private and personal matters that often alienate us from the general discourse of daily health and vigour. Sometimes people feel too vulnerable to talk about pain, as if ashamed of their experiences. Shaping the Fractured Self addresses the psychological ethics and lived experience of pain and chronic illness. The book asks: what is normality? what is reality? who defines pain?

I’m so glad that the editor and publishers invited the Dax Centre to launch the book in Melbourne. The anthology’s themes reach into everything the Dax Centre holds dear to its historic art collection, and to its more recent child: The Dax Poetry Collection. The Dax Centre has always believed that it is the lived experience of mental illness and psychological trauma that most powerfully helps us to understand mental illness. To empathise is to counteract stigma. Shaping the Fractured Self is very much a book about lived experience. The insights into chronic pain are deeply powerful. The poetry is vibrant, exciting and emotionally engaging. This is poetry with something to say.

Melbourne book launch of Shaping the Fractured Self with editor Heather Talyor Johnson (pictured far left). Dax Centre, University of Melbourne, 11 May 2017. photograph by Bel Schenk

When I think about the themes of the anthology my own identifications are threefold: I’m a doctor, I work as a child psychiatrist with young people with disability and their families, and I struggled with relapsing cancer for ten years in my 30s. I have always felt that by having cancer at a young age I did the psychological work of becoming 90 at 30. In other words, I ‘did’ the work of death early in my life, earlier than most. And I notice that this book is not only about the illnesses of elderly experience but also about the effects of chronic illness on early adult trajectories (work, relationships, financial striving). It is a testament to those who adapt, ‘live with’ their pain and refuse to submit to it.

All of us have a body. All of us are vulnerable to illness, every day. We have colds, appendicitis, tooth aches. These are episodic reminders of our vulnerability. In these pages are poems about all kinds of conditions: migraines, Ménière’s disease, Marfan syndrome – just to name some of the “Ms”. Not only did the poems reawaken my own (slightly dormant) illness narrative, but I could dip in and out of the images – relating, identifying, or not identifying. This is one of the book’s strengths: it is a moving prism of possible identifications, mirrors.

But these are also specific stories and it is an inspired decision by the editor Heather Taylor Johnson to include the framing narratives at the beginning of each contributor’s poems. I fell deeply into these narratives of pain, illness, resilience and fortitude. I then fell differently into the poems. It’s as though the two forms, prose and poetry, encourage each other, sometimes mysteriously, sometimes angrily, but always reminding us that a person is more than the sum of his or her suffering. As Peter Boyle says, “Illness, suffering, disease are not the whole of the story.” And, again, in his poem on the experience of having polio as a child (‘Paralysis’) he writes, “What does it matter / that I am only eyes / if I am to be carried / so lightly / under the trees of the world?”

The natural world and its resonances, both as solace and as a reminder of the vulnerability of life, is a frequent theme in the collection. In Beth Spencer’s ‘The Shipwreck Coast’ with its wonderful evocation of isolation and struggle in nature along the Great Ocean Road, she asks, ‘Rising and sinking. / Is that a form of swimming?” And elsewhere in the poem, the flow of the seasons also shapes the fractured self:

The grey beige relentlessness of my haven,
and the constant howling ripping of the wind
ate into my brain.

And then just as I was about to crack
one morning the sun came out.

And the wind relented just a little.

And I fell instantly in love.

Still later in this long poem, nature brings death closer in perspective, “. . . a dead penguin on the beach, / its feathers slicked with oil. / Everything after all, just a step away.”

Poetry is the distilled art of language. Nothing is briefer, more somatic, more sensory. It is language under pressure, experimental in its purest form. And what art form can better express what the body senses in a paralinguistic sense?  The poems and prose texts reach towards the unsayable, often towards the interspaces between a smiling doctor and a devastated patient. The power inequality in these poems is addressed and recalibrated continually. Andy Jackson indicates that he came to poetry for two reasons – “to try to feel at home outside the church, and to try and feel at home inside my own body.” He says, “When language is placed in the hands of people who have been marginalised, and then spoken in a public space, small transformations can be triggered.” This is indeed a profound truth, a neurolinguistic philosophy, of a kind: that writing effects cultural change as powerfully as culture affects writing.

There are three poems from each of the contributors. Voices of carers and doctors are here too but do not drown out the lived experiences. A terrific introduction by Rachel Robertson references the controlling technologies of medicine, how the self is changed by illness experience, how narrative fragmentation is often the most appropriate form to illuminate the body’s actual experience of pain – but she also discusses how the lyric poem gives us entry into hope and a positive sense that the ‘darkness can be navigated’.

Many poets talk about how hard it is to write and share these poems. As Heather Taylor Johnson says, “I hated the poems I wrote on illness.” Yet her metaphors on Ménière’s disease (like so much imagery in the book) are fresh and engaging: “Still, you want to write about the sound in your left ear. You want to say it is time’s drone, molecules swimming past your head or the dam that will tug you under . . . None of this is natural.” (‘Trying to Write about Ménière’s Disease’).

As I said, I have had a very personal response to the book – as a doctor and child psychiatrist. I’ve just returned form the Royal Australian and New Zealand College of Psychiatry’s annual congress in Adelaide, where so many interesting discussions and papers were presented, and I know that the only way forward in medicine is through co-dialogue with patients – where all services at every level of development are made and shaped in conversation with patients, and their families. It is quite strange to me that this is a new idea. Doctors might have training in medical expertise but it is a service not a power. In Andy Jackson’s poem ‘Nothing Personal’ he says (referring to the doctor), “He is not talking to me, but to my mother”. In her poem ‘The Waiting Room’, Jessica Cohen notes, “Another waiting room, . . . as bland as the beige of the walls / as monotonous as the grey ceiling tiles.” Drab hospital environments, uncaring treatment and cruel numbers (statistics often standing in opposition to the uniqueness of suffering, individuality). In her poem ‘The Numbers’, Fiona Wright emphasises the distancing effect of statistics when she glimpses the contents of the locum’s bag, “one sandwich in blue plastic, one nectarine, / three crackers, pink wallet, keys” and also later in the poem when she is given ‘three standard questionnaires, at twenty-eight-day intervals.”

Doctors smiling as they tell bad news can be particularly painful, a defence. But sometimes there are also helpful care narratives, as in Rachel Mead’s ‘At the Psychologist’ when she says, ‘But you catch it all, deftly, the tissues / placed just so. . .”

Often, the chronic conditions cannot be completely understood or defined by traditional medical diagnoses. Pain falls between categories. Many poems speak to the shortcomings of medical insight. In the poem, ‘The Body Electric’, Steve Evans notes, “But still I cannot sing it right. / Even if I go quite slow there are / glitches in transmission” and later in the poem, “I see the poor machine I am.”  Patients can easily feel themselves blamed when they don’t fit a diagnosis. Sometimes the treatment makes things worse. In ‘ENDONE^.  Oxycodone hydrochloride 5mg*’ Stuart Barnes advises, “. . . do not show your new / -born child to a doctor or a pharmacist.”

Many poets speak of what chronic debility has cost them in terms of work, career advancement, educational opportunities and wellbeing. In her prose narrative, ‘From Clinic to Consulting Room’, Fiona Wright talks about the solace she has gained from writing but also notes, “I’m still not sure if this can ever be a consolation commensurate enough for what I’ve lost.” Nevertheless, Wright also sees that writing has a restorative, reclaiming power, “My glass hands lift . . .” (‘Her Arms and Legs are Thin’).

I want to emphasise the strange and often fragile beauty I found in many of the poems. Rarely have I read work that stilled and shocked me with such forceful immediacy. There are many wonderful images in the anthology. For example, Anne Carson in ‘Axiology’, “If I was ceramic I’d be kindsukuroi, / pottery which has been knocked, // dropped, broken into shards then /mended with gold or silver lacquer . . .” and here, Rachael Guy’s taut subjectivity in her poem ‘Discontinuation’: “I watch as skin crawls up my wrists, another person’s arms colonising my sleeves.” Fragility, however, is tempered with toughness and determination. In ‘Blade of Grass’, Sid Larwell reminds us to be careful of pathos, “But don’t compare me to a blade of grass. / I want to be something bigger, something stronger.”

Some authors contextualise their writing to a specific illness; others are more interested in the body in space and time, the disempowering or empowering experience, the way poetry sings both to and against death, towards medicine and against constriction. The work of Quinn Eades, for example, challenges our basic ideas of illness when he discusses the concept of the body as ‘outlaw’. Eades explores what becomes possible when “I write the body” and looks at how the “body falls right where we need it, falls here, in the writing, in the fragment, in poetry.”  This is an argument for deconstruction of prejudice and stigma.

Alongside Eades’s keenly academic appraisal of the place of fragmentation and power in art we find a kindred psychology in the work of a poet like Kristen Lang. Her writing, which explores themes of anorexia, also investigates ideas of empowerment/ disempowerment, through lyric, and is especially insightful about the effect of chronic illness on youth. Here is Lang’s entire poem ‘Hole’:

The dark breaks on the sea of its own rising,
a moonless tide swelling into shadow. At its centre,
a woman stands on a float of leaves, on their reds
and browns, their veins decaying and the not-

night waiting below. The black leans into her blood, full
and heavy with emptiness. Balancing on the leaves’
frail bones, she barely moves. In her heart, a stuttered
cry . . . this . . . this way . . . this way now. But the dark

swirls and the sound is swallowed. Her eyes
dig for the fall She is held by wire, the thin
clamour of her pulse.

I wanted to mention every author in the book, quoting a small insight from each of his or her works, but soon realised that this would not be possible in a short talk like this. And so, with apology to all the poets I have not yet mentioned, I return to a medical perspective, to Leah Kaminsky, a doctor and a poet, who asks in the final poem of the book (‘In Memoriam’), “What is a body, if not grace?”

In conclusion, Shaping the Fractured Self is a dialogue between the body and self by poets who assert their right to shape their own experiences of illness and pain. As Kaminsky wryly notes in her prose narrative, ‘Death and the Doctor’, “Poetry has a surgical eye”. This small epigrammatic insight encouraged me to reflect on the nature of poetry itself: how the poems in this collection carve deeply into what chronic illness feels like, how it is experienced, and what it means.

Congratulations to the publishers, to Heather Taylor Johnson for bringing such a terrific swag of writers together, and to all the contributors. This conversation with the book is my own. Yours will begin as soon as you open a page.

-Jennifer Harrison

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Shaping the Fractured Self: Poetry of Chronic Illness and Pain is available from UWA Publishing: https://uwap.uwa.edu.au/products/shaping-the-fractured-self-poetry-of-chronic-illness-and-pain

Read a book extract from Shaping the Fractured Self