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Cover Design
Carolyn van Hoeve

How Does It Hurt?
 

Published by Victoria University Press, 7 November 2014.
www.vup.victoria.ac.nz/how-does-it-hurt

SYNOPSIS

How Does It Hurt?, is a memoir of chronic pain––a condition which, despite advances in the science of pain and alleviation of acute or temporary pain, remains little understood and poorly communicated, while silently reaching epidemic proportions. The narrative brings visibility and a measure of clarity to the lived experience of continuing physical pain. In particular, it confronts the paradox of writing about personal pain, notwithstanding pain’s resistance to verbal expression, and reflects on the ways in which other writers have lived with and written about pain; those writers include Polish poet and intellectual, Aleksander Wat, English novelist and social theorist, Harriet Martineau, and French novelist, Alphonse Daudet who believed that for victims of incurable pain, literature is ‘a solace and relief [...] a mirror and a guide’.

Winner, Nigel Cox/Unity Books Award at the 2005 Auckland Writers Festival. Unity Books observed: 'It is a necessary, profound and instructive book for which there has not been a precedent by that we mean there is nothing else like it and for which there has been a yearning gap. Like the writer Atul Gawande, de Montalk looks at science and medicine and human suffering and contemplates humankind. She does this through the lens of literature and through her own harrowing experiences. She writes paradoxically about a state that is "beyond words". In a year where there are no national book awards we could not let this book go unrecognised.'

Mike Hanne, author of The Power of the Story: Fiction and Political Change
'This is a wonderfully powerful, important, and beautiful piece of work which makes a major contribution to the understanding of the subject of pain. The success of the project lies in the fact that the author illuminates the ugly problem of pain, from so many angles, using so many light sources, with such beauty.'

Martha Stoddard Holmes, author of Fictions of Affliction: Physical disability in Victorian Culture
'How Does It Hurt? reminds us that some of the most notable and innovative intellectual and artistic figures were people with disabilities – and that the history of creativity and the history of living with suffering are inextricably intertwined. Stephanie de Montalk's own contribution is a riveting and compelling read.'

Febriani Idrus, The Booksellers New Zealand Blog, 14 April 2014, appraising the chapter ‘The Vendor of Happiness’ (an interview, in 1897, with nineteenth-century French writer and pain sufferer, Alphonse Daudet), published in Sport 42, April 2014):
‘[H]ighly absorbing [...] She gives Daudet a voice, imagines his character based on his writing, imagines how he might sit, speak and act, while [...] moving through meditations on chronic pain and suffering. A truly masterful piece of writing.’

EXTRACT, from Chapter Three, ‘At the End of the Mind, the Body’ (Paul Valery)

The pine tree leaning over the Kumutoto stream rocked. Its crown, the widest in a stand of three, moved from west to east, brushing the clouds, gathering light from behind. Its foliage, high and low, rippled equally. I watched it sway through binoculars from my bedroom window. Framed the stumps on the mid-section of its trunk. Searched unsuccessfully for nests. Elongated the waving branches until there was stillness between them, and the city hill on which the pine stood became a mountain. Taoist Masters believed in the efficacy of trees, in their ability to absorb energy out of the earth and the ‘universal force’ from the sky. The more strongly rooted the plant, they claimed, the higher it extended to heaven. Plum trees were said to calm the mind, maples to disperse ill winds and lessen pain, and the tallest trees, notably pines, to be best for healing, especially when growing near running water.

December 2003

I had a pain deep in the pelvis. It had started slowly, six weeks earlier, after a fall in Poland where I was researching a novel, The Fountain of Tears, and promoting the Polish translation of my memoir-biography, Unquiet World: The Life of Count Geoffrey Potocki de Montalk (2001). I slipped on the marble floor of our bathroom in Warsaw’s Bristol Hotel and bounced off the sharp edge of the bath, breaking three ribs on the lower left side. I thought myself fortunate at the time. I could have hit my head, fractured my spine, or punctured a lung. Or ruptured a kidney, the possibility of which caused concern at the Szpital Kliniczny Dzieciatka Jezus (Clinical Hospital of the Infant Jesus) to which I was whisked by ambulance.

It’s Potocki, from beyond the grave,’ exclaimed my biography’s translator, Maria, when I returned to the hotel; she was phoning from Kraków where I was due to be filmed for a television arts programme, and had remembered my poet cousin’s capacity for denunciation when displeased, and the infections that I contracted while working with his archive: infections referred to as the ‘Curse of the Count’.

‘Not at all,’ I reassured, as room service delivered a tea trolley laden with complimentary savouries and cakes, and an allegro agitato ushered in Chopin’s Fantaisie-Impromptu on the in-house sound system. ‘I’m his executor and trustee launching his story in his spiritual homeland. I’m paying my respects to our trusty and beloved cousins. Besides, the infections were only to be expected—the archive was rat-bitten and mouldy.’ I delayed the trip by train to Kraków for a few days, and settled awkwardly to resting my ribs and staying warm in the calm but bitingly cold northern autumn.

The pain was intermittent at first. It was also familiar. I had experienced the intense dragging discomfort sporadically for twenty years. Difficult to locate and explain, it was typically absent overnight and on rising, but gathered pace during the day. In 1985 a specialist detecting tenderness at the sites of the left and right ischial spines (the bony extensions at the base of the pelvis) had diagnosed an ischial tendonitis or bursitis, explained as a complaint common in the shoulder, similar to tennis elbow, soldier’s heel, housemaid’s knee. ‘It’s usually caused by a minor but repetitive irritation,’ he said. ‘Weavers get it, writers, maybe, and others who sit for long periods. There’s no treatment necessary. Exercise and rest as pain dictates. It could take months to come right.’ I had checked the diagnosis in the library, in a medical textbook. It confirmed a widespread condition, and mentioned a chronic form contracted by animals, especially horses, which lay on hard floors. In 1985 I was not a writer, but I had been sitting for extended periods on a wooden chair researching and scripting a film documentary. The symptoms made sense.

On my return to New Zealand the condition intensified. My doctor diagnosed a recurrence of the inflamed bursa and was sure the discomfort would settle. I continued to sit long hours at the computer drafting The Fountain of Tears—my retelling of ‘The Fountain at Bakhchisaray’, Aleksander Pushkin’s poema of the impossible love of a Tatar khan for a Polish countess held captive in his Crimean harem.

During February 2004, I waited for the inflammation to recede, as it had in the past. I gritted my teeth in cafés and restaurants, shifted from hip to hip during movies, excused myself early from social occasions, alluding to my ribs, or saying ‘I’ve injured my back’, aware that pelvic pain was a vague term and ‘ischial spines’ meaningless to most. By March the pain had escalated beyond any level at which I had known it before. It dragged: a cat at the curtains. It burned: a smokeless flame, a coal smouldering. It drilled. It needled like crushed glass. It radiated out and pressed down, a non-existent weight from the vicinities of the left and the right ischial spines. On glorious Indian summer afternoons I lay on a sofa oblivious to the buzz of sun and cicadas, wondering why mainstream analgesics were having no effect, how pain of this degree and debilitation could be caused by a bursitis or tendonitis. Repeated consultations uncovered nothing. An MRI scan of the pelvis and lumbar spine was normal. A bone scan picked up the three fractured ribs but found no sign of ischial enthesitis, or inflammation The blood tests were clear.

Wearily, I decided that if I was to live with this unanswerable condition I should try to follow the example of Robert Louis Stevenson, who wrote of his recurrent respiratory illness, ‘I begin to hope I may, if not outlive this wolverine upon my shoulders, at least carry him bravely like Symonds and Alexander Pope. I begin to take a pride in that hope.’ John Symonds had lived his life around tubercular symptoms. Pope, with a curvature of the spine, had failed to grow and suffered lifelong headaches and a heightened sensitivity to pain. Had these men sought refuge in writing? Was I being directed to do so? To what end? To interpret the message of a mysterious wind? To write about pain, like Alphonse Daudet (In the Land of Pain), who daily battled ‘the fear that pain inspires’; Aleksander Wat (‘Diary Without Vowels’, an essay) who observed the ‘nervous pained quality of [his] writing’; Harriet Martineau (Life in the Sick-Room) who sent words of understanding and sympathy to fellow invalids from her ‘shadowy recess’? Was chronic pain to be the effect of the fall, with the ribs merely collateral damage?

But the pain was too consuming. Unlike these writers, I could expect that in the medically advanced twenty-first century, the pain, although inexplicably insistent, would eventually be treated.

Moreover, Stevenson’s burden had revived memories of John Bunyan’s The Pilgrim’s Progress—a Christmas present when I was nine, and still on a bookshelf. The pilgrim, vividly illustrated in a dusty blue tunic with a water flask, staff, and a creeping shape on his shoulders, had wept, trembled, cried, ‘What shall I do?’ Then he had set forth on his hazardous journey, achieving hard-won arrival at the Celestial City, more concerned with the shedding of his oppression than its management.

I would extricate myself from the swamp, head for the Wicket Gate, dodge the proximal arrows, pay the keeper and enter the King’s Highway. Aristotle had said, ‘not pleasure, but freedom from pain, is what the wise man will aim at’. I needed to regain my bearings, keep making decisions. Why sit blindly, albeit bravely, trying to write and hoping to get better?

The sunlit uplands would not easily be found. The medical literature on pain was blocked by theory and assumption, peppered with words like ‘think’, ‘believe’ and ‘suppose’, bewildered by individual responses, hedged like an inaccessible poem with hidden internal workings.

René Descartes’s seventeenth-century model of pain, which first recognised the role of the brain in sensory perception, held sway with few modifications until the mid-1960s; it likened the nervous system to a grid of electrical wires carrying pain signals directly from sites of injury to the brain where sensations appropriate to the degree of tissue damage were recorded as pain. Pain is produced, states Descartes in Treatise of Man (1662), ‘just as pulling on one end of a cord, one simultaneously rings a bell which hangs at the opposite end’. In 1965, Ronald Melzack’s and Patrick Walls’s Gate Control Theory (GCT) of pain replaced Descartes’s hypothesis, and despite ongoing modifications and expansions essentially remains in place; according to Melzack and Walls, certain nerve cells in the spinal cord admit and intensify or reduce pain impulses before either transmitting them to pain centres in the brain or impeding transmission altogether. In 2002, Clifford Woolf and Michael Salter, noting physiological changes in the pain conduction pathways of chronic pain patients, raised the possibility that long-term neurological alterations function as a ‘pain memory’ akin to that of brain-maintained memory.

Beyond these neurobiological frontiers, all that could be said with certainty was that while significant progress had been made in subduing the symptoms of physical distress, the mechanisms that produced pain were not fully understood.

I was well aware of the consequences of this incomplete understanding of pain.

In 1977, in Hong Kong, while undergoing a Caesarean section, I was given a general anaesthetic that appropriately paralysed me, rendering me unable to move a finger or open an eye, but which also left me able to hear, feel and remember.

Already in labour, I’d greeted with relief the decision to proceed to surgery and left the threshing woman in the next bed (epidurals were not then widely available). On arrival in the operating theatre I was lifted, between contractions, onto the table, catheterised and painted with iodine. My arms were positioned on either side of my body and matter-of-factly strapped down. An intravenous needle was inserted. A mask was placed over my face. I was invited to count backwards from ten.

As I knew from previous surgeries, the routine was not in question. I closed my eyes and anticipated a quick delivery (to limit foetal anaesthesia); a sub ‘bikini line’ incision (with fewer complications, less bleeding and a more comfortable recovery than the classical vertical midline approach); surgical oblivion, the reversible coma, the most welcome of sleeps.

However, seemingly within seconds, I heard an overloud rush of Cantonese punctuated by English. I wondered, was I waking—was the surgery over? The voices settled and became clear. I tried to open my eyes but my lids were too heavy. I waited to be shaken and roused. Braced myself for the lift back to the trolley.

‘P.O.P,’ said the familiar voice of the surgeon.

Persistent occipito-posterior, I thought. Neither transverse lie nor breech presentation (as ventured in the absence of prenatal sonography). No need for the Caesar, but good to be spared the long labour.

The surgeon paused and continued in Cantonese. Was he speaking to me? I tried to reply. I couldn’t speak. I felt oddly submerged, mentally alert but physically sluggish, as if the post-op anaesthetic reversal had been halted. Instruments clinked. Was the scrub nurse checking the retractors, clamps, forceps; the circulating nurse counting the sponges; my baby lying nearby in a linen crib with a plastic tag on its wrist blinking at the whiteness of the room?

Then, without warning, something hard and wedge-like was being forced into my throat. I choked. The choke echoed silently ––a gulping cough, in my head. My chest was immobile. In a second, in rising panic, I realised that the endotracheal tube was going in, my gagging was not visible, the operation was just beginning and I wasn’t properly under.

I strained to raise my head. Turn. Move a leg. Lift myself off the table. Nothing. I was immobile, pinned, flattened as I pictured myself at the time, as if beneath concrete.

The scalpel perforated my abdomen just below my umbilicus. I screamed. The scream passed through the roof of my mouth into my head. I couldn’t recoil. The blade ripped relentlessly downwards, magnified, jerky, unexpectedly clumsy, jagged, like the neck of a broken bottle (a beer bottle, a wine bottle), shredding skin, fat, fascia (less incision than crude wound), on and on through the abdominal wall to the uterus. In the background, the surgeon’s requests, followed by the scrub nurse’s muffled replies. In my head (with no sense of a face, with no mouth, open or closed), reverberating screams, images of sound—of waves exploding against a curved wall of grey bone.

‘A boy.’ The voice of the surgeon.

‘Two-twenty-seven.’ A nurse for the medical record.

Proof, with the classical midline incision, this was no ether dream.

A pause.

A scorching plunge either side. In my mind’s eye, hot iron, branding, numbers, the sizzling hides of cattle in close up. I registered scar tissue, sterilisation, the pre-arranged ligation of my fallopian tubes.

Silence.

A sentence in Cantonese.

A reply. The tones of the language.

Another sentence, interrupted by English with ‘suture’ and ‘closing’ and in English again, ‘She seems to be light, better put her under a bit deeper.’

The direction was no sooner given than an unfamiliar voice close to my ear said, ‘Wake up.’

I sensed a shift in surroundings. The room felt nearer, smaller. Was I in recovery or back in the ward? Or was I still in theatre?

‘Is it over? Is it over?’

‘It’s all over,’ said a nurse.

‘Are you sure?’

‘It’s all over, you’re fine.’

‘I felt the whole thing. I wasn’t properly under.’ My eyes opened. Where was I exactly? I felt slow, as if still submerged. The walls were hazy. Was I off the table? Was the conversation real?

What’s wrong?’ The surgeon and anaesthetist appeared alongside. ‘I wasn’t under.’

‘What do you mean?’

‘I felt everything—it’s a midline incision.’

‘Yes––in keeping with your previous scars.’

‘It’s a boy, born at 2.27—P.O.P.’

The surgeon confirmed all I told them. I was starting to surface, becoming restless. ‘Twitching was apparent throughout,’ he said, horrified he’d mistaken my attempts to move for involuntary responses to stimuli. He conferred in Cantonese with the anaesthetist.

John, sitting on a bench in the corridor, was called in. ‘You were distressed and frightened,’ he recalls. ‘I was shocked. I’d never seen you like that.’

I was lost between anaesthesia and reality and couldn’t be placated or convinced he was John. As the trolley swung into the corridor, and all the way to the ward, I rambled. ‘Are you real, John? Am I dreaming? Am I still on the table? How can I be sure that it’s over?’

The house surgeon ordered an injection of strong sedative.

‘She thinks she felt it all,’ whispered one of the nurses at the foot of the bed.

The next day, the chief anaesthetist came to see me. We discussed the transient and painless consciousness with incomplete recall occasionally reported by patients, especially after the light anaesthesia of Caesarean sections. He stressed that my state of sustained awareness and pain was so rare as to be almost unknown. A technical malfunction was mentioned, my slightness, the low dosage of anaesthesia administered to similarly sized Chinese women, a referral for psychological assistance.

I declined the therapy. I was a nurse–– medical misadventures occurred. I was thirty-two-youthful, resilient. I had four healthy children, a happy family; I had a live-in amah who lit incense and left fruit on the altar in her bedroom to appease restless spirits, and swept the graves of her ancestors during Ching Ming in the Third and Ninth Moons. At sunset, junks sailed past our balcony overlooking the South China Sea. On Saturdays and Sundays we played tennis, shopped at Wah Fu, swam at Deep Wave Bay. As a member of the Red Cross mobile blood collection unit (moving from the colony’s boardrooms and shopping malls to housing estates, colleges and prisons—yes, even secondary school students and prisoners were encouraged to donate), I observed the workings of a pragmatic society. I preferred to detail the event on paper—a firm narrative I could repeat, if necessary, without thinking—and tuck it away in a file, where it couldn’t haunt me.

Had my personal circumstances been less positive, or the procedure more prolonged, the mental consequences of the trauma might have been significant. As it happened, the immediate effects seemed surprisingly few. For some months I felt threatened when I lay on my back, and would cover my abdomen with my hands. And if I was tired, a pulsating rhythm would begin in my head, as if waves were pounding a sea wall, and I would hear, one, two, three: try now, try now—the repetitions with which I’d urged myself to move, to break through the weight of the anaesthesia. A flashback also occurred, one hot humid afternoon during Tropical Storm Harriet a few weeks after the operation, as I sat in a minibus in traffic on Pokfulam Road below the hospital—reminding me, as I focused on the rain, that beyond common knowledge the connections between the body, the brain and medical science are frail and erasable.

However, the moment of intubation and realisation that I was suspended without communication between consciousness and insensibility continues to hover. It is reminiscent, if I allow myself to think about it, of Edvard Munch’s work of anguish and alienation, The Scream. The only other emotional repercussions have been a stirring of inward panic, as a patient, at the immediate prospect of approaching the doors of an operating theatre—overcome by taking a sedative in advance and closing my eyes on the trolley; and a reluctance to speak of the experience—not wanting my children to fear hospitals, wary, as some wonder in disbelief why I had not lost consciousness, of dissecting the horror.

The most enduring effects (still present) proved to be physical. Within six weeks of the surgery I had developed problems with balance. I became dizzy in fast lifts, lost my sixth sense (that is, the physiological sense which prevents falling when one is walking or standing motionless) and tripped if unable to see my feet: symptoms confirmed by a nystagmus—a jerking movement of the eyes (related to the fibres between the brain and the eye that control eye movement), when I was directed to look to the side. Investigations, including a brain scan and a lumbar puncture, produced no conclusive pathology. A neurologist thought I might be developing multiple sclerosis. I put the symptoms down to ‘the fuse I blew on the table’.

Recollection of the surgical pain’s intensity faded with time, and I remembered the sensations as less agonising than my notes suggested. I imagined that, over the years, my memory had telescoped those sensations into rational fact and lodged them deep within the cerebral cortex’s convolutions and fissures—confirmation that acute physical pain, once past, is all but forgotten.

In the years since, other patients who have been ‘awake’ and ‘feeling’ throughout surgery under general anaesthesia have come forward. Lawsuits for emotional trauma have been taken and compensations awarded. More importantly, monitors that record levels of consciousness by detecting and measuring changes in brain waves during sedation are now available to assist anaesthetists to mix hypnotic and analgesic agents with greater accuracy. Yet despite such advances, the parameters of consciousness remain indistinct and the precise functioning of general anaesthesia is not fully understood. Patients continue to experience minor episodes of anaesthesia awareness, even when their index readings are within anaesthetic limits. And the exact cause of ‘anaesthetic awareness with explicit recall’—or Silenced Screams (2002) as psychologist Dr Jeanette Liska entitled the book she wrote after her ordeal during a hernia operation—is a mystery. Liska’s account of that surgery—of ‘searing agony’ and ‘screams that reverberated again and again off the cold walls of [her] skull’—is eerily similar to my own.