Reviewed: Kylie Maslen, Show Me Where It Hurts: Living with Invisible Illness, Text, 2020
One of the supreme, and indeed painful, ironies of pain is that it is so very hard to communicate, yet it always demands to be given voice. Not only as involuntary cry or anguished moan, but in visceral metaphor, as ‘knife’ or ‘burning’, or in memoir or narrative accounts that seek to ‘flesh out’ this terribly isolating state of being. These attempts at giving language to pain seem to invariably fall short. We may listen to, or read, accounts of pain and feel pained ourselves, but this feeling is mostly the sorrow of realising the other person and their suffering is unreachable, and that the pain cannot be taken away.
Not only that, but pain’s intensity rarely correlates with bodily damage. It can’t be examined under a microscope or made clear in a scan. A person can have severe bodily deterioration and feel no impact. Or they can be in ongoing agony, yet have no tissue damage at all. The biomedical model still struggles to take subjectivity seriously, particularly the experiences of women and non-binary people. So while pain cannot be imaged, is it possible for it to be imagined? And, more importantly, when a person in pain tries to communicate their pain, what exactly are they hoping might happen?
These were the questions that kept coming back to me as I read Kylie Maslen’s striking debut collection of essays Show Me Where It Hurts. Maslen is not talking here purely about pain, but also about chronic pain and mental illness. She discusses not only nameable conditions but also subjective experience, how a life can be diminished by illness and by the dominant stories we have around it. In ‘Life Support’, she writes:
My illnesses don’t fit the narrative of any Hollywood script. There is no yelling for a crash cart, no gory bleeding, no hair loss from chemotherapy. I spend a lot of time walking back and forth to the microwave to reheat my wheat bag. Every day at 3.30 p.m. an alarm goes off on my phone and I take my afternoon meds, because if I don’t set an alarm I forget to take them and an hour later I’m in pain. I go to bed early, I don’t socialise much. I spend a lot of time lying on my couch watching something that doesn’t require me to concentrate too hard, like cartoons, while absentmindedly scrolling through Instagram. In the movies this would make maybe a thirty-second montage at best. In my life it’s been happening for more than twenty years.
Maslen doesn’t waste time painstakingly deconstructing the dangerous prevailing tropes of illness. Rather, she exposes them as utterly bereft, by focusing instead on weaving together acutely honest accounts of her own life with astute takes on pop music, film, television, internet communities and visual art.
The opening essay, ‘I’m Trying To Tell You I’m Not Okay’, is one of the most moving, insightful and surprising in the book. It begins with the stark contrast between social niceties and the complexities of lived experience, how merely being asked ‘how are you?’ by a friend or doctor unleashes in someone who experiences chronic pain a torrent of unspeakable questions in response.
What I want to say:
Do you ever feel like this? Because I don’t think this should be happening.
Do you ever cross the road too late to make it to the other side without running, knowing you’re not going to run?
Do you ever have days when you’re not in pain? What does that feel like?
What I actually say:
‘I’m okay.’
‘I’m tired, but okay.’
‘I’m tired.’
Between those who are chronically ill or disabled and those who are not, there is a profound gulf. Maslen speaks into that space, and it is an unsettling, humanising experience to listen to her. She recounts the forced isolation and resting, the brain fog, the complex awkwardness of dating, the missed opportunities and economic disabling, as well as the formidable resources she and others manage to muster in reply.
In ‘I’m Trying To Tell You I’m Not Okay’, these resources include memes shared online between chronically ill people, and the familiar comfort of 1990s cartoons such as SpongeBob SquarePants. No, I didn’t expect to read that either, but it’s a potent, provocative approach. Often rendered speechless by pain and fatigue, Maslen knows well the limitations of language, as do her comrades in illness. Visual images, with minimal text, can be infinitely more articulate than a rigorous academic essay, especially in terms of garnering mutual recognition and support.
I’m sent a cartoon of SpongeBob, misshapen and sitting on the floor. One arm holds out an empty plate, the other is bent back awkwardly. He looks extremely nOt FiNe, but the subtitle reads ‘I’m ok, honest’. The caption to the meme reads: ‘When you try to hide being sick but it’s not working’.
This is a fascinating form of articulation, because it doesn’t remove or deny the difficulties in communicating suffering. Rather, these memes—as they’re shared among people who ‘get it’—are honest with the sense of isolation, grief and not-knowing, and such honesty offers genuine, life-saving consolation and solidarity.
There are also profound implications in terms of the practice of medicine. Maslen doesn’t provide any prescriptive answers, but frames the questions with urgency and clarity. For too long we have tried to drag the intensely subjective experience of pain into the supposedly objective world of medical diagnosis. What if it were the other way around? What if medicine entered into the ‘pain worlds’ (as social anthropologist Elena Gonzalez-Polledo calls them) of people in chronic illness, beyond multiple-choice answers or scales of one to ten, into visual representation, grim humour, shared cultural symbols and impersonal outbursts that point clearly towards deeply personal pain?
In the essay ‘Ask Me How I Am’, with disarming frankness Maslen recounts bouts of self-medication, hoarding prescription drugs and leaning heavily on alcohol, seamlessly interwoven with discussion of Leslie Jamison’s book on artists and addiction The Recovering, Jenny Valentish’s Woman of Substances and Ottessa Moshfegh’s novel My Year of Rest and Relaxation. Here drug use is also placed in its broader context—a world where women are expected to be in pain and to be quiet about it, where health issues associated with the reproductive system are still under-researched and taboo, and where chronic pain fuels a complex and precarious desire for both oblivion and some measure of autonomy. So this is not a story of overcoming, but Maslen does speak of a way of living that is ‘better than before’, where she allows herself to feel the world more openly. Those of us who are disabled know, with her, that this is not purely an achievement of will or character, but relies on a strong social and medical support system, and on the patient, fitful work of time.
In Show Me Where It Hurts such themes recur like pain flares. From numerous angles, Maslen sketches how cultural forms and the communities and institutions that surround them can be immensely harmful, or helpful. The book will no doubt act as the latter for anyone who reads it, whatever their relationship to illness or disability.
The book also reminds me that essays, in a similar way to poems, rely on finding forms that are organic, that amplify the ideas and energies of the writing. Maslen’s essays, acutely intimate, underpinned by an engaged and wide-ranging intelligence, mostly inhabit a kind of ebb and flow, shifting between experience and cultural reflection. A few are adventurous and exciting in their form. ‘A Playlist for the Love Sick’ explores the complexity of sex and relationships while chronically ill, under the heading of ten songs that act as a soundtrack for exploring desire, hesitancy, dating apps, fluctuating health and the impossibility of a heteronormal life. Here music energises and broadens the writing, playfully, yet seamlessly.
Another chapter, ‘Creation’, contains a devastating account of the dismissal of women’s subjectivity by the medical system, an examination in which the possibility of becoming a parent is discussed in a purely clinical and perfunctory way, the broader life and its emotions brushed aside. ‘Two more minutes of the doctor’s time to give me a few more sentences or to draw a diagram—that’s all I wanted,’ she writes. But this is also an essay on Beyoncé, her music, her building of a life and community, and her experience of complications at the birth of her twins.
Here the form feels a little disjointed, the connection between these lives difficult to make, either intuitively or overtly. Perhaps the contrast is partly the point, because, as Maslen says, all women are ‘too often dismissed, disregarded and openly lied to in order to make us—but not our pain—go away’. But Beyoncé’s presence in this essay feels like it has emerged out of aesthetic appreciation more than necessity. The concerns of the chapter—the immensely complex questions of parenthood in the context of compromised reproductive health—deserve an approach that focuses less on juxtaposing private dilemmas with the confidence of a public figure, and more on a sustained attention on those dilemmas.
Maslen’s writing is at its most revelatory and moving in ‘Life Support’. The essay works impressively as a confident, clarifying analysis of various screen representations of illness, including Me and Earl and the Dying Girl, Silver Linings Playbook, The Big Sick and local series Please Like Me. There are some sobering arguments here about how crucial it is that disabled people be enabled to create their own stories, and (in contrast to the narrative of inspirational overcoming) how reassuring it can be to show what mental illness ‘really looks like for everyone involved’. But, to my mind, it’s this ‘everyone’ that takes the essay up another level. Maslen shows an impressively generous and nuanced understanding of how her own friends and family are impacted by her bouts of illness, particularly her mental state:
I still check in almost every day with my mum, and my brother and I text almost daily as well. I know I am a constant source of worry to them both, and it’s a burden I feel heavily. But I also know that they love me and that their concern is a manifestation of that, even if it does leave me feeling like a child at times … At face value I’m a thirty-seven-year-old woman who goes to work, dates, does many of the things my friends do. Maybe I have a few more grey hairs to show for it. But I doubt most thirty-seven-year-olds need their support system to make sure they’re still alive as often as mine does.
These impacts are not simple, on either side. Pain is isolating, but it also reverberates across bodies, through love. ‘Show me where it hurts’ is what you expect to hear from a medical professional, but Maslen reminds us that while physical pain can be located, regionally or even precisely, the hurt of someone who is chronically ill is not only physical, and not only financial, political and existential, but also spreads out into their social lives and intimate relationships. I know this. Perhaps you do too. But it is powerful indeed to find this complexity evoked with such honesty and clarity.
We need more of these books, more insight into the various ‘pain worlds’ out there. The damaging myths, expectations and systems that increase the isolation of ill people can only be demolished gradually, piece by piece, story by story, from numerous angles. Last year saw the publication of Gabrielle Jackson’s (no relation) Pain and Prejudice, a bravura account of how the medical system has failed women. No less personal than Show Me Where It Hurts, this book also provides an in-depth analysis of the issues at play, at a systemic and granular level. And last year saw the publication of Unseen: The Secret World of Chronic Illness by Melbourne broadcaster Jacinta Parsons, which promised to lay bare the shame and the insights that come from not getting better in a world designed for the well.
Pain can be incredibly isolating. But those in pain can be further isolated, further pained, by the loss of their ability to give voice to their experience. Breaking that cycle with memoir, criticism, revelation and questioning, Maslen, and others writing with grit and wisdom, not only foster our empathy and understanding but spur us towards solidarity, to work together for a world of radical care.
Andy Jackson’s most recent collection, Music our bodies can’t hold (Hunter Publishers), consists of portrait poems of other people with Marfan Syndrome. He lives in Castlemaine, Dja Dja Wurrung country.
