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| 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.
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| 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.
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