Last week I was lucky enough to go to Wellington and spend some time with some really incredible people. I arrived home utterly exhausted and completely exhilarated. How Does It Hurt? goes some way to explaining why. 

As is usual for my visits to the city, I had a million things to do and less than a million hours to do them in.

I’m always uncertain about how much my health is going to allow, so I have to brutally prioritise and compromise, which makes me deeply unhappy, but that’s the reality of illness.

My main goal was to spend as much time with special and important people as possible, and I can report I well and truly ticked that box. Thank you so much to everyone who housed me, fed me, fit me into their schedules, and listened to me gush incessantly about New Zealand literature, writing and/or dinosaurs.

I also had two other very important things to do. The first was attending a workshop with my writing mentor, Steven Gannaway. Steven is a wonderful man who likes to think that he’s really mean but he’s not and I’m totally going to ruin his street cred by telling you all that. I went in fully expecting to have my work torn to shreds, my goals exposed as ridiculous and impossible, and to be left a broken shell rocking in a corner whispering ‘paragraphs, paragraphs, paragraphs’ gently to myself.

Instead, I was plied with grapes and gluten-free cookies, constructive critique, encouragement, hilarious anecdotes, and super incredibly helpful advice that left me feeling excited and assured about my chosen path. (Then I talked with Fergus Barrowman about Creative New Zealand’s review of literature funding and gave up on the idea of having a financially viable writing career forever). (I’m joking). (Mostly).

The other Very Important Thing I Had To Do was attend the launch of Stephanie de Montalk’s How Does It Hurt?

Fair warning: You’re going to hear me talk about this book a lot in the next few weeks. Like, a lot a lot.

I first heard about Stephanie through a friend who told me I ‘might appreciate’ her 2005 essay about pain in Sport.

I read it immediately. I was spellbound, struck with horror and familiarity, stuck fast in my chair despite my increasing physical and emotional discomfort with what was in front of me.

This was my introduction to Stephanie’s journey with chronic pelvic pain, which began with a fall in 2003, followed by years of uncertainty, misdiagnosis, a minefield of medication, and, of course, the ever-present, relentless restlessness of the indescribable pain itself.

“By March the pain had escalated beyond any level at which I had known it before. It dragged and burned: a cat at the curtains, a coal smouldering; it needled like crushed glass; it radiated out and pressed down, a nonexistent weight from the area of the left ischial spine. On glorious Indian summer afternoons I lay on a sofa oblivious to the buzz of sun and cicadas, wondering why mainstream analgesics were having so little effect; how pain of this persistence and degree could be caused by a bursitis or tendonitis; how Dickens had continued to write.”

It’s quite difficult for me to relay how I felt reading this. I had never read anything that cut so close to what I was experiencing. I felt this amazing bursting in my chest because someone knew, someone understood, followed by an immediate crushing because of the breadth of what we are dealing with.

In the face of her pain, and the many obstacles it provides, Stephanie began her PhD through the International Institute of Modern Letters.

“In 2010, I set myself the task of examining the lived reality of chronic physical pain as a PhD in Creative writing entitled How Does it Hurt?: Narrating Pain. I hoped to bring visibility and a measure of clarity to the condition – to break the cycle of misunderstanding, silence, isolation.”

Damien Wilkins, the Director of the IIML, introduced the book with this speech, which is very worth reading in full.

“The fact that writing under such a hostile and capricious force… 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.”

Of course, he did not, but I myself felt stunned, even just to be in the same room as this woman, whose words had been so much a comfort and so much an education and almost a torment of their own for me in my journey.

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.

– Damien Wilkins.

“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.

“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?’

That’s actually what Steph said to Wallace Chapman when he asked this question on Radio New Zealand. 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.

“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.”

If you or anyone close to you has suffered chronic pain, you may be starting to get a feel for what this book means to me.

Stephanie’s life, as referenced by Damien’s ‘supine’ comment, is lived either standing or laying. Her pain renders her unable to sit. And here she was, standing before me. And that in itself made such a statement. “I will not lay down.”

I am sure I do not need to point out the parallels in my own life, as a woman with chronic pain, and as a writer trying to write through it. I utterly detest the word inspiration. I loathe it with the fire of a thousand suns. And yet, there seems no other I can use here. Her work, her persistence, her bravery, her eloquence, her elegance, and the resulting tour de force that is this book could be nothing less for me.

In her launch speech, (some of which is here), Stephanie said: “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.”

Yes. It is. And I while am lucky enough to have a huge support network, it’s incredibly rare to find someone who can actually speak my language. So though I only got to meet Stephanie for a second, it was an overwhelming moment for me. I said “Hello, I’m Sarah. I have Ankylosing Spondylitis.” And she touched my face and said “My poor dear.” And in those three words were everything I had been waiting to hear for so many months, because I knew she knew. I knew the empathy was as real as it could possibly ever be. It wasn’t platitudes. It was like a weight lifted off my shoulders and a breath of relief filled my chest and I know that moment will stay with me for a long time.

In the book, Steph relates the tale of Philoctetes. Abandoned on an island with a gangrenous leg, Philoctete’s anguish grows more from his isolation than the pain itself.  “The play is a sustained depiction of the toll of unrelieved pain on the sufferer’s language, emotions and spirit.. ‘I looked everywhere / but all I found around me was my pain.’ [The writer] Sophocles further suggested… that the utterance of pain does not necessarily engender the fellow feeling and compassion that would lessen the sufferer’s isolation.”

Meeting Stephanie and reading this book is, for me, stepping off the island and finding a boat.

I am only a few pages in. Reading it is of course in itself a challenge for me. I am uncomfortable staying still for any period of time. In addition to the physical pain, I am confronted with an emotional journey. Many of Stephanie’s experiences of pain, her questions, her suffering, are so similar to my own. It would be impossible for this to be anything other than deeply personal.

I intend to do a formal review once I have finished it, but that may take some time, so I’ll share pieces as I go.

If you’d like to get a copy, it’s available from VUP books instore and online, at Unity in Wellington, and in Page and Blackmore in Nelson.

Special thanks to Fergus Barrowman for meeting with me and inviting me to the launch, to Elizabeth Knox for discussing cats and technology with me, and to Kirsten McDougall for my book.

Thanks to Stephanie for everything.