|Damien Wilkins launches How Does It Hurt? (photo by Matthew Bialostocki)|
It’s a privilege to say a few words about Steph’s incredible book. Incredible not just for what’s in it, of course, but also for the circumstances of Steph’s life which made, and continue to make, writing of any kind a form of heroism—though she wouldn’t like that word.
The fact that writing under such a hostile and capricious force—and I’m not talking about the Faculty of Graduate Research at Victoria University—writing not just about pain but in pain, through pain, that this has earned Steph a doctorate and now resulted in this sustained piece of prose—a work already recognised by health professionals as ground-breaking and riveting and beautiful—well, it inspires awe. So probably all I need to do to communicate the effect of this book is to sort of stand very still right here, looking stunned.
But launch speeches come with words so let me try. I came in at the very end of the PhD process with Steph, following Bill Manhire’s retirement and, working alongside Kathryn Walls, all I really did was express wonder and pleasure at the potency of the text and especially the shape the narrative had taken—it’s probably important to say that how she tells this story is key. The book’s title puts How first—How Does it Hurt? And that question quickly becomes How Do I Speak? (How do I tell people I meet about this thing that’s happened, that’s happening to me, in ways that are accurate to the experience, and then How Do I Write? What words in what order to communicate to readers who are often strangers the significance of chronic pain not just in one life but in the unwritten lives of other sufferers?
Because that’s the powerful, broader remit: this is not a narrow confession, though it’s full of candour; indeed I’ve always thought that Steph as a poet is among the least confessional we have; or perhaps her confessions are so well-hidden they slide by in the dark hood of her unusually formal diction. Steph certainly steps forward in this book but again she wants to make some larger points: about nursing, which she feels has moved in the wrong direction, about the relationship between different kinds of knowledge—her quest for release from pain takes her in many directions, from Touch Healing to surgery; from Eastern philosophy to poetry to the contemplation of the pine tree in her backyard. The tree is a bit of a star in the narrative. The book is political, fierce, open, buzzing with ideas about how the body treats the mind and vice versa.
It’s an unflinching account, terrifying and bleak in its tracing of nerve pain’s unpredictable torture methods. Steph at one point characterizes her pain as a gremlin fiddling knobs—yet even that image quickly feels too homely as we catch the idea that this pain is not only secretive in that mostly you can’t tell the person has it but also that it—the pain itself—has secrets from the sufferer, secrets about its intensity that are only disclosed in viciously random ways. An hour of ‘not too bad’, followed by a day, a month, a year of ‘hideous’. We might ask the sufferer, ‘How are you?’ but that can only set off an unthinkable, inexpressible set of recursive notions, ‘You mean this minute?’ It’s actually what Steph said to Wallace Chapman when he asked this question on Radio New Zealand the other week. We may want something definitive, brief and promising: ‘A bit better, thanks.’ But, as this book points out, that’s our conventional need to be consoled and move on and it discounts the sufferer’s cyclic ongoing involvement with torment.
Still, I think it’s more than my own clutching at straws to find in this book, dare I say it, fun or at least a savouring of ironies and absurdities. I love the scene in the hairdressers when Steph is reading Schopenhauer and she covers the title of the chapter with her hand when the stylist comes over. The title of the chapter is ‘On Suicide’.
I’m also going to take my pleasure where I can find it and if the defeating of a narrative pattern—its lack of a progress—is one of chronic pain’s most cruel manoeuvres, this book is itself a triumph of patterning. Here’s the opening sentence of a section about half way through the book: ‘Word was out that the surgeon in Sydney was about to become the Southern Hemisphere’s first pudendal neuralgia and entrapment specialist.’
I think it’s a measure of how deeply engaged we’ve become in the story of Steph’s pain that this sentence is not only intelligible but exciting, as exciting as say hearing in a 19th Century novel that someone has set the date for their wedding. Oh good, we think, Sydney finally has a pudendal neuralgia and entrapment specialist!
How Does It Hurt does two things at the same time: it practices an extraordinary embrace, making us come closer and closer, while at the same time reminding us of the arm’s length of suffering. As good readers trained in empathy we feel the pull of the writer’s terrible plight—yes, we silently agree, I hear you—but we also experience the necessarily harsh corrective of Steph’s exclusivity—since it is, according to this powerfully argued text, only the fellow-sufferer who can connect finally. Everyone else is just a literary tourist.
I must admit during the time I was a supervisor of the PhD, I struggled with this exclusion and prodded at Steph more than once. Didn’t she think the capacity of her account to move people—and it has this capacity—show that she was communicating something? Maybe not the interior world, the cave, as she calls it, or the cliff, of her pain, but at least its affective power? Wasn’t that a tiny victory in the battle for expression, for a language that did more than just hint at what it’s like to be inside her skin? But Steph is unwavering. No, no, you haven’t understood. You can’t. To be honest, I still haven’t come to terms with this no. Since it goes against all my carefully built-up instincts of hope, as well as my writerly tools: the grounding faith in the potency of description, analysis, suggestion: the idea that story in all its forms is revelatory.
At one point Steph quotes Alphonse Daudet: ‘Pain is always new to the sufferer but loses its originality for those around him. Everyone will get used to it except me.’ Yes, I think, I am used to the Steph who when we meet has to be lying down. Even though I knew her before she was supine, I realise I’ve made an adjustment that she hasn’t made, that she is working against constantly. Daudet is depressingly right. Yet I also want to adapt that observation and say, having read this book, I think it’s harder to lose a sense of the originality of other people’s experience. Books like this one remind us we should never get used to anything.
|Stephanie de Montalk (photo by Matthew Bialostocki)|
Three primary concerns underpin my memoir and study of chronic pain.
The first is a notion posed by a Canadian academic and long-term sufferer by the name of Lous Heshusius. How, Heshusius asks, can such pain be put on paper? She says: “Love would be easier. Or joy, or pleasure. Things people desire. Then you can evoke that which cannot be said. The reader will gladly fill in the meanings left unsaid by the words. Trying to speak of chronic pain, on the other hand, the unsaid meanings are not easily imagined. For who wants to know what constant pain is like? How to tell of this dark, dark place?”
The second consideration is that of the distinction between chronic pain and acute, or temporary, pain. By definition, this separation seems obvious. But it's one that I have found to be woefully under recognized. Unlike acute pain, which is ubiquitous, familiar – shareable to some extent – and, importantly, relievable and finite, chronic pain is relegated, in the words of writer, Alice Sebold, to 'the Wild West of medicine'. The mechanisms of transmission that sustain this renegade pain long after an injury or illness has apparent been resolved, or for which a cause or treatment cannot be conclusively identified, are far from understood. As a result, much chronic pain cannot be adequately relieved, and sufferers, unable to articulate and share their condition, frequently dismissed as complainers and malingerers, tend to retreat, their physical suffering heightened by emotional isolation and distress.
The third concern expands on the sense of exile I've just mentioned: a state in which I found myself after the onset of my own pain, and one that led to this memoir. I was first alerted to the idea of raising the profile of chronic pain, and easing the aloneness of sufferers, in 2005, the year I was writer in residence at Victoria University's International Institute of Modern Letters (IIML). It happened like this: My colleague, Damien Wilkins, came to my room one morning, held out a small hard-backed publication by the 19th century French Writer, Alphonse Daudet titled In the Land of Pain, and said 'This book has your name on it.' I read Daudet's brief but powerful account of more than a decade of the pain of his tertiary syphilis, and I felt strangely consoled. I also felt empowered by his honesty – by his graphic descriptions, penetrating observations and absence of stoic pretense. Moreover, I felt validated by Damien's unexpected acknowledgement of my own hidden condition. That morning, a door opened in pain's wall, and although it would be another five years before I embarked on the dissertation from which my memoir is adapted, that day remained a watershed pin my thinking about the need to confront what is increasingly termed 'chronic and intractable non-cancer pain'.
A statistical aside: As we live longer – and as previously fatal conditions and injuries become treatable – the incidence of chronic pain silently raises. Today, it is described as reaching epidemic proportions. In the United States, there are one hundred million sufferers – one third of the country's population – of whom ten million are significantly disabled by pain. In New Zealand, one in six are said to suffer varying levels of on-going pain: that is, 700,000, of which as many as 70,000 may be seriously and lastingly incapacitated.
To recap then: How Does It Hurt? aims to give informed weight to the phrase 'chronic pain'; it hopes to fill in some of the meanings that the words 'constant pain' leave unsaid, to lessen the misapprehension of bystanders and to ease the exile of sufferers – for it's difficult to come to terms with a life-changing pain that no one talks about or understands.
How Does It Hurt? can be purchased on our online bookstore here or in all good bookshops in NZ. $40, h/b.