from Pain
The winds must come from somewhere when they blow
—‘Villanelle‘, W.H. Auden
1
It was a pelvic pain and it started slowly in November 2003, two weeks after a fall in Poland where I was researching a novel and promoting the Polish translation of my memoir/biography, Unquiet World: the Life of Count Geoffrey Potocki de Montalk. I slipped on the marble bathroom floor of a Warsaw 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 back, or ruptured a kidney about which there was concern at the Szpital Kliniczny Dzieciatka Jezus (Clinical Hospital of the Baby Jesus), to which I was whisked by ambulance and briefly admitted. I delayed my trip by train to Krakow and settled awkwardly, but gratefully, to resting the 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 deep, dragging discomfort sporadically for twenty years. It was typically absent overnight and on rising, and gathered pace during the day. In 1985 a specialist, detecting tenderness at the point at which the left ischial spine (a process of the lower and dorsal part of the hip bone) enters 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 a medical textbook. It confirmed a widespread condition which included a chronic form of bursitis in animals, especially horses, which lay on hard floors. I remembered that Charles Dickens was said to have suffered from ischiogluteal bursitis. I was not then a writer, but I had been sitting researching and scripting a film documentary. The symptoms made sense.
2
On my return to New Zealand in December 2003, the condition intensified. I continued to sit long hours at the computer bringing the novel I was working on—the story behind ‘The Fountain at Bakhchisaray’, Alexander Pushkin’s poema of the impossible love of a Tatar khan for a Polish countess held captive in his Crimean harem—to first draft, waiting for the inflammation to recede as it had in the past, reminding myself that, given his prodigious output, clearly Dickens had pressed on regardless.
During February 2004, 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 the concept of pelvic pain was difficult for many, and mention of ischial spine confusing.
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.
Further consultations uncovered nothing. An MRI was normal. A bone scan picked up the three fractured ribs but found no sign of ischial enthesis. Wearily I decided that if I was to live with this unanswerable condition I should follow the example of Robert Louis Stevenson, who wrote of his recurrent respiratory illness, ‘I begin to hope I may, if not at least outlive this wolverine upon my shoulders, carry him bravely like Symonds and Alexander Pope.’
John Symonds had lived his life around tubercular symptoms. Pope, with a curvature of the spine, had failed to grow and suffered life-long headaches and a heightened sensitivity to pain. These men had sought refuge in writing. Could chronic pain be an incentive for me to do the same? Perhaps this was to be the effect of the fall and the ribs were merely collateral damage.
But the pain was too consuming. Moreover, Stevenson’s burden had revived memories of John Bunyan, and Pilgrim’s obstinate progress. The book—a Christmas present when I was nine—awakened, in vivid illustration, Pilgrim in a dusty blue tunic with a water flask, staff, and a creeping shape on his shoulders, weeping and trembling, crying, ‘What shall I do?’ It also recalled, in ‘the manner of his setting out, his dangerous journey and safe arrival at the desired country’, a story more concerned with the shedding of his oppression than its management.
I pushed the metaphysical direction to write aside. Aristotle had said, ‘The prudent man strives for freedom from pain, not pleasure.’ I needed to regain control, keep making decisions. These were medically enlightened times. Why sit blindly, albeit bravely, trying to write and hoping to get better?
3
The sunlit uplands would not easily be found. The literature on pain was blocked by theory and principle, hedged like an inaccessible poem with hidden, internal workings and attempts to explain highly individual perceptions. All it could say with certainty was that, while significant progress had been made in the alleviation of physical distress, much remained individual, incomprehensible, beyond our control.
I was well aware of the consequences of this incomplete understanding of pain and its control. Twenty-seven years previously in Hong Kong, an anaesthetic for a Caesarean section had paralysed me, rendering me unable to move a finger or open an eye; but it had also left me fully conscious, pinned to the table as if beneath concrete, from a pre-operative palpation and discussion of the baby’s position, through the gagging insertion of the endotracheal tube, ripping midline incision, post-delivery ligation of the fallopian tubes and cries of constriction and pain reverberating in sound waves in my head.
The surgeon and anaesthetist had confirmed my distressed recovery-room account of their conversations in Cantonese and English, including the surgeon’s remark prior to suturing that I seemed ‘a bit light’, and expressed horror that they had mistaken the twitching responses of my concealed consciousness for involuntary reflexes. ‘Transient states of painless awakeness with incomplete recall are not uncommon,’ they had said, ‘especially during the light anaesthesia of Caesarean sections, but rarely at your sustained height of awareness and pain.’
In the years since, other patients have come forward, law suits for emotional trauma have been taken and compensations awarded.
More importantly, a Patient State Analyser and Bispectral Index, capable of detecting and measuring changes in brain waves during sedation, are in development and may soon enable anaesthetists to mix hypnotic and analgesic agents with greater accuracy.
Yet, for all this, the exact cause of the newly-named ‘Anaesthetic Awareness with Explicit Recall’—or ‘Silenced Screams’, as a survivor entitled her book on the subject—outside obvious equipment failure or inadequate medication, continues to elude researchers, and the phenomenon—in my case forever reminiscent of Edvard Munch’s work of anguish and alienation, The Scream, and a matter of inward panic each time I approach the doors of an operating theatre—remains a mystery.
*
The difficulties of diagnosis and treatment posed by the hidden process of pain seemed to be especially prevalent in the assessment of chronic pain: that mysterious landscape beyond the known impact of acute and obvious tissue damage; of childbirth’s pain of purpose, surgery’s pain of healing and prevention of harm, and injury’s intention of warning. All too frequently chronic pain languished, not readily understood in the areas of medicine and surgery: a territory of disorders, syndromes and cycles; of past experience, unique personality and the interplay of family, social and employment environments; of psychological and psychiatric attention.
It had little in common with the old Cartesian Theory of pain which likened the nervous system to a grid of electrical wires carrying signals from sites of injury to the brain, where sensations appropriate to the degree of tissue damage were recorded. It was closer to the newer Gate Control Theory of ‘input modulation’, which presumes that ‘neural mechanisms in the dorsal horn of the spinal cord act like a gate’, admitting, blocking, intensifying or reducing pain impulses before transmitting them to pain centres in the brain; that, during transmission, the signals are again modulated and pain is experienced when their arrival at the pain centres exceeds crucial levels.
Pain-gating further presumes that, if the pain gate changes or becomes damaged—as it might as a result of chronic or unrelieved pain—it stays open, even after the tissue has been treated or controlled. In such instances pain, often out of proportion to the original injury and level of harm detected by diagnostic means, and known as neuropathic pain, continues, at which stage the pain itself becomes the diagnosis or disease.
‘As this long-term, unrelenting pain process continues,’ a brochure on chronic pelvic pain concluded, ‘as conventional treatments yield little relief, even the strongest person’s defenses can break down.’ The outlook was grim: limited physical and social activity, depression, displacement in the family and society.
I moved through the brochure’s section on diagnostic testing (all that could be done, had been done) to ‘Therapeutic Approaches’: discussion of individual perception of pain in body and mind, the resultant rise of ‘multiple interactive problems’, the importance of patience, the assistance of mental and physical therapies, medication as ‘a temporary supportive measure until other therapies kick in’.
But I was beyond patience and nebulous therapies, beyond breathing and relaxation. I needed conclusive solutions and unequivocal medications. The bio-feedback, distraction, imagery and other transmission modulating cognitive activities could come later. The pain was intractable, intense; surely this signalled significant physical injury, as the unfashionably simple Cartesian specificity theory proposed?
4
One bleak morning, ‘under the power of [Bunyan’s] Giant Despair’, I typed ‘ischial spine’, location of my supposed tendonitis, into Google. The words quickly took me to a pelvic pain forum and from there to the site of a rare and obscure disorder known as Pudendal Nerve Entrapment (PNE). I stared at the screen in disbelief. The essential symptoms matched my own. The pain was nerve related. No wonder it flared and played games. Of course it would not respond to the usual medications. Furthermore, its chronic nature probably also meant that by now the control gate and pain pathways were affected.
Just as quickly I closed the site down. The stories of fruitless visits to physiotherapists, chiropractors, osteopaths and acupuncturists; orthopaedists, gynaecologists, urologists, proctologists, neurologists, psychiatrists, even dermatologists; the well meaning but misadventurous testings and treatments, were unsettling reading. The young man in North America who spoke of consulting twenty specialists in five months, and the young woman from Britain who wrote, ‘I can’t go on’, were by no means atypical.
However, the next morning I returned, although not to hover at the edge of Tophet. For the rest of the week, relieved and apprehensive—partly because at last the pain had a name, also because there was no certain cure—I roamed the Internet, downloading information and excluding problems, amongst them ischial bursitis, with which the condition was often confused.
I learnt that entrapment of this nerve caused, for no apparent reason, pain that was characteristically heightened by the mechanics of sitting and bending—activities that increased pressure on the pelvis and thereby the nerve. That determinants encompassed accident trauma, endometriosis, longstanding irritation and scarring of the nerve resulting from prolonged sitting, surgery and complicated childbirth, and sports-related activities like high mileage cycling, weight-lifting and rowing. Also, that discrete variations in tissue mass and nerve routes possibly explained why most people could endlessly sit, ride, or row, while the nerves of others became inflamed and, in due course in the case of an unfortunate few, confined by scar tissue and adhesions.
I was alarmed to discover that only a handful of physicians and surgeons—in the USA, Egypt and France—offered conclusive testing and treatment.
Nantes—home of the world’s leading PNE neurosurgeon, Professor Roger Robert, pioneer of the trans-gluteal approach to surgical relief—seemed to be the centre of choice. In 1987, Robert, together with neurologist Jean-Jacques Labat and radiologist and pain specialist Maurice Bensignor (now deceased), concerned about ‘the consistency of complaints of severe pain with sitting’ expressed by sufferers of deep, chronic, pelvic pain, began to investigate the possibility of entrapment of the pudendal nerve.
A hundred years ago surgeons had severed the pudendal nerves of patients suffering this intolerable pain without knowledge of the underlying condition. But the catastrophic effects of sexual dysfunction and incontinence had quickly caused withdrawal of the procedure, and the pain to remain undiagnosed.
Initially, working with cadavers—six men and six women—Robert and his colleagues identified the area known as Alcock’s canal, and sites between the two ligaments of the right and left ischial spines, as ‘areas in the course of the pudendal nerve where entrapment could occur’. They found, by simulating sitting in the cadavers, that the nerve does not lie flat but ‘describes a curve which drags it around the regions of the ischial spine which it straddles like a violin string on its bridge’, hence the pressure applied and the pain caused by sitting and bending
The team members had confirmed their research in 1988, in Surgical Radiologic Anatomy, in which they found that the clinical manifestations of entrapment—aside from pain—were few, and the character of the pain, which was ‘piercing and very comparable to acute toothache’, comprised ‘sensations of burning, torsion or heaviness, and also of foreign bodies’. They determined that the symptoms, sometimes precipitated by a fall, could be of ‘indolent’ development; and, crucially, that ‘activities requiring the seated position . . . are no longer available to these patients, whose mental attitude is one of chronic pain sufferers so obsessed with their miserable state as to be rapidly regarded by their doctors as psychiatric cases’.
This is a pain, summarised the web site, ‘sometimes so intense that suicide is considered. But since a change of day to day habits can alleviate the pain some or a lot, people make those changes and learn to tolerate the pain that remains’. The entry further noted that, while occasionally the symptoms had been present for as long as twenty years, most seemed to be in the five-to-ten-year range, presumably because that was how long it took to come across a doctor who could correctly diagnose PNE.
The Nantes specialists reported that the non-surgical approach to freeing the nerve—a series of precise, CT (scan) guided injections of steroid into the area of entrapment—worked for some. Of surgical patients—whose progressive and relentless symptoms rendered steroid infusions impractical—up to two thirds achieved varying levels of relief from decompression and transposition of the nerve, while the rest experienced no improvement or a worsening of pain, usually because the nerve had been badly damaged. Additionally, and a potentially successful surgical outcome aside, the pain could increase for up to a year owing to the handling of the already traumatised nerve.
I checked the Comparative Pain Scale—a PNE-tailored assessment devised by an American sufferer. The scale provided for the subjective comparison of pain with clinically established levels of pain and behavioural change. It divided colour-friendly sections headed Minor Green, Moderate Yellow and Severe Pink into subgroups which ranged from the One of the ‘barely noticeable pain [of] a mosquito bite, or a poison ivy itch’ to the Ten of ‘unimaginable’ pain causing loss of consciousness.
I decided I was experiencing typically unstable pain, rising from the ‘distressing’ Yellow Four of ‘an average toothache’, to an ‘utterly horrible’ Pink Eight, ‘comparable to childbirth or a real bad migraine headache’, in minutes.
I was also of the view, having experienced all three readily treatable and short-term comparisons, that their equation with the fatigue and despair relevant to the rare and unreachable entrapment of the burning nerve was too approximate to be useful, even though the terms ‘distressing’ and ‘utterly horrible’ seemed close to the mark. And I remained unconvinced that levels of pain could be ‘clinically established’, for while my own, prolonged experiences of childbirth, for instance, were indeed ‘utterly horrible’, the experiences of others, according to personal physiology and duration of labour, might be more, or less, so. Pain, like happiness, I adjudged, can be exactly established as a zero or a ten, but only individual thresholds can measure the distance between.
Nonetheless, my options were clear. Either I consult a PNE expert, confirm the entrapment and work towards a form of recovery, or I hope for a remission, as had apparently happened in the past. Surprisingly, I chose the latter option even though early diagnosis and treatment was urged: France was hardly around the corner; the nerve might not be entrapped; the outcome of treatment was uncertain and my twenty-year history of pain rendered the odds doubly unfavourable. It was easier to stop sitting.
5
During March, April and May I strove to bring the pain under control. All the while the ‘Pessimism of the Intellect’ strained against the ‘Optimism of the Will’—to appropriate Antonio Gramsci’s activist slogan.
But, as I persuaded myself that hyper-avoidance of sitting would allow the inflammation to ease and the thinning nerve to slip free, I also agitated: to what purpose was I to stop driving, dining out, going to the cinema; to eat and write standing all day, plate perched on a sideboard, computer uncertain on a coffee table balanced on top of a work station and keyboard wobbling on a box on top of an ironing board? Unlike Stevenson, Symonds and Pope, was I being discouraged from writing? If so, by whom and to what end?
Was I to accept the veracity of metaphysics—described by Arthur Schopenhauer as man’s ‘most sublime tendency’—in which case was the pain good ghost, goblin, or ambivalent jinn? Was I to set conventional medicine against fringe disciplines, amulets and small synchronicities; to explore metaphor, myth and random events; and to embrace the dictum of fifteenth-century Austrian physician and surgeon Paracelsus that ‘Magick is a Great Hidden Wisdom—Reason is a Great Open Folly?’
Or was I to pursue the fruits of philosophy: Marcus Aurelius’s reasoning that ‘What we cannot bear removes us from life; what lasts can be borne’; Michel de Montaigne’s advice that we should ‘learn to suffer whatever we cannot avoid’, and his conviction that the key to living a complete life is the ability to make positive use of adversity; Friedrich Nietzsche’s premise that just as ‘a tree that is supposed to grow to a proud height [cannot] dispense with bad weather and storms’, a fulfilled life (the attributes of which, unannounced by Nietzsche, are assumed to include courage, ambition, humour, independence and artistic dedication) is not possible without pain; or, to return to Schopenhauer, the proposal that ‘we require at all times a certain quantity of care or sorrow or want, as a ship requires ballast, in order to keep on a straight course’.
The isolation from informed medical expertise was magnifying my credulity, the doubt of self-diagnosis my uncertainty.
I delivered PNE printouts to my GP, a sports medicine specialist, a neurologist, and a pain specialist—the consultant of last resort. The condition was not known to them, but, unlike medical professionals condemned on the Internet, they were keen to be informed.
In accordance with my new diagnosis, amitriptylin—in low doses a neuropathic analgesic—was prescribed. Long used as an antidepressant, amitriptylin’s pain-reducing value (discovered by accident more than a decade ago) at a dose below that effective in the treatment of depression, like anticonvulsant medications such as neurontin which work in much the same way, lies in its ability to stabilise or block nerve pain receptors. The drug, taken at night, was befuddling and dried my mouth, but enabled sleep. I was also prescribed codeine, natural derivative of opium, now manufactured from morphine to which it reverts in the body, for alleviation by day. The efficacy of codeine for nerve pain was held to be uncertain: opiates, I was warned, are quick to build tolerance, can be habit-forming and provide minimal relief for only a few.
I brushed aside questions of dependence, determined an opium-related drug would work for me. Thomas de Quincey had taken tincture of opium to relieve facial neuralgia and succumbed to its ‘dreams and noonday visions’. Addiction had been the lot of Samuel Taylor Coleridge too. Surely an enhanced literary output would compensate for the inevitable withdrawal and descent to reality? Moreover, I responded to the idea of using a derivative of ‘the aspirin of the East’, valued since antiquity: of Arabia’s ‘gift of God’; Greece’s ‘the juice’; the basis of soothing, costly, luminescent laudanum as Paracelsus had first mixed it, combining the powder he dried from the milky juice of the unripe seeds of the poppy scored in the morning with a knife, with the powdered, whisper-thin softness of gold and delicate rose of Indian pearls. The basis, furthermore, of the strong, modern, semi-synthetic narcotics (including heroin) derived from morphine; and the inspiration for thousands of synthetic opoids (like methadone and pethidine). A drug powerful enough to access the central nervous system, rather than toy with the peripheral pain receptors as the non-narcotic analgesics had done.
‘Nerve pain is unlike that of trauma or surgery, in character and habit,’ the pain specialist concurred, ‘and chronic, unrelieved pain at your level will be difficult to control.’
He explained that changes to the nerve fibres were producing an abnormal signalling system. This was the reason amputees felt the pain of phantom limbs, and surgeons during World War II amputated early before the neurons became confused and started to send incorrect messages; and the reason only specific neuropathic drugs like amitriptylin could ‘down-regulate’ the receptors of damaged nerves and calm the pathways. Dosage would be a question of trial and error, he continued, codeine, at best, an ancillary tool.
I enquired about a TENS (Transcutaneous Electrical Nerve Stimulation) machine, the impulses of which block pain by confusing it, and closing a gate of transmission. ‘The nerve is too deep,’ he said, setting the suggestion aside.
6
The pain was indeed difficult to control. When there seemed no way forward, I was driven prone on the back seat of the car to a chiropractor for two weeks’ intensive attempts at pelvic adjustment. I was soothed by heat packs and treated kindly, but to no avail, in a room overlooking a twisted tree.
I carried a handkerchief embroidered with yellow and white flowers which had been offered by a friend for prayer at her church, together with a slip of paper on which I had written ‘the nerve is smooth and free in a cool breeze’ in my left pocket.
I composed paragraphs of happy, healing words: words like optimism and good health; better, and best, and best step forward; violet and yellow, the colour of pansies and crocuses; orange, the colour of poppies; pink, the tinged peace of roses.
I turned my small herd of elephants and occasional ornaments on the bookshelves, so they wouldn’t feel trapped, their trunks and noses facing the door.
I investigated Buddhism and pondered my accumulation of negative karma, and Zen Buddhism which suggested that as long as I continued to be a slave to ‘words and logic’ I would experience ‘untold suffering’.
I sought the teachings of Confucius who advised against taking unfamiliar medicine and, if ill on the occasion of a princely visit, assuming a supine position beneath courtly robes, head facing east. The theological intelligence of C.S. Lewis, who admitted his thesis, The Problem of Pain, was written without personal insight of pain, from which I most usefully deduced that animals suffer less because they have no capacity to imagine the future. The Celtic wisdom of my husband’s grandmother, parent of eleven children, who used say, ‘You’ll always be where you’re meant to be,’ and, ‘If you’re meant to be punished you will be.’ The spinning thoughts of Persian mystic, Jalaluddin Rumi, who wrote in ‘Enough Words’:
You must have shadow and light source both.
Listen, and lay your head under the tree of awe.
I considered growing hashish, or rascals’ grass, as Arabs once called it; trialling methadone; graduating to slow-release morphine.
In the lowest moments, when the pain escaped the pelvis and developed a pallid, external life of its own, when it became a cloud filling the room, closing me down, and it seemed neither words nor ‘the world of men’ could help me, I fantasised about oblivion. I eyed the squat, brown bottle of codeine, carried it in my pocket, counted and recounted the tiny white pills; contemplated the weightlessness of stepping late at night from a high window or bridge into the wind, curling beneath a fern into oneness with nature, sleeping in the transforming softness of moss and of gathering leaves.
Later, when the pain was less relentless, I did not find this need to surrender unreasonable or unreal. The body releases the surface memory of short-term pain. But chronic pain hides in the mind; waits, as if haunting the walls of a building or the wood of an instrument long played, storing and orchestrating sounds for the future.
As my novel—the unrequited khan, the captive countess beset by ‘the heaviness which, like the night before and the day ahead, never leaves her’—languished; as the days shortened, and each evening I drew the curtains and lit and heated the house; as I repeated my encouraging mantras and paragraphs of positive words; as I read Henri Charrière’s Papillon and Jean-Dominique Bauby’s The Diving Bell and the Butterfly; I felt locked, without recollection of summer and little prospect of lifting spring, between Warsaw’s autumn and the onset of the Wellington winter.
John (my husband) started coming home for lunch. The children brought a burner and bergamot, lavender tree and orange sweet oils; a lambskin rug for the sofa, a pair of opossum fur boots, a hand-stitched hot water bottle cover, a regular supply of dark chocolate, a pot plant, daily words of encouragement.
I absorbed the support. I achieved a measure of acceptance. The world became simpler, gifted with time and the fascination of small things. The clutter of life—deadlines, appointments, extraneous obligations—fell away. Energy and optimism slowly returned. I began to focus for short periods on writing; placating the ‘animal in perpetual unrest’ with the controlled stories of less immediate worlds: a modern translation of Pushkin’s poema, a third collection of poetry.
The pain held on, a cohesive influence, a necessary edge to my thinking. I was reminded that Wordsworth had compared the spontaneity of childhood expression with the measured ‘philosophic mind’ of later years; and that the American poet Louis Simpson had spoken of his awareness of the ‘power and intelligence of things’. Pain was those later years, that power of things.
What of the neurosurgeon, Professor Robert in France, I started to wonder, as poetry—the pleasure of rhythm, the grace of words, the power of thinking in lines—cleared my mind, and the medications and constant standing tempered the pain. What of Nantes at the Atlantic mouth of the Loire, childhood home of Jules Verne; three hours by fast train, or an hour by plane, south-west of Paris?
7
Appointments in Nantes proved difficult to arrange. Emails and faxes, Urgent et Confidentiel, went unanswered. Key people were not available to take phone calls, their secretaries all shielding. My GP, fluent in French, spent half an hour on the phone one evening speaking to doctors in hospital corridors, and gave up. ‘This is typical of things here,’ commiserated a cousin in Toulouse, who had been similarly unsuccessful.
The uncertainty caused the pain to rise. I was aware that studies on wounded male soldiers and civilian patients after major surgery had revealed an interesting response to anxiety. It showed that while four out of the five civilians asked for pain medication, only a third of the soldiers requested relief, despite their greater tissue damage. The pain thresholds of the latter—free of the threat of battle—were higher than those of the civilians whose anxiety about not surviving the surgery had increased the post-operative need for narcotics.
I emailed Houston, Texas instead. Over the phone at four in the morning, I finally spoke to a knowledgeable medic: a sports medicine specialist, who had trapped his pudendal nerve in an accident and undergone surgery in France. Two years later, when he had his ‘life back’, he had returned to Nantes to work with Drs Labat and Bensignor and Professor Robert. As a result, in 2002 Houston offered the first expert diagnosis and treatment facility in the United States.
‘Don’t do anything that brings on the pain,’ he advised.
‘The pain is constant. Does this mean I shouldn’t walk?’
‘Not if it brings on the pain.’
‘I’ve stopped sitting. Could the nerve spontaneously disengage?’
‘No,’ said the specialist who was happy for me to come to Houston but agreed that, financially speaking, I would be better to go to France. ‘The nerve’s had enough; you’re at the top of the curve.’
Like Sir Richard Burton, weak and depressed having barely started the march that would lead to the discovery of Lake Tanganyika, I fretted about ‘the sorry labour of waiting and reloading asses, the exposure to . . . morbific influences . . . the wear and tear of mind at the prospect of imminent failure’.
Like Burton’s wife Isobel, who permanently injured her back and ankle after slipping in a Paris hotel, I might have written, ‘Strong health and nerves I had hitherto looked upon as a sort of right of nature, and supposed everybody had them, and had never felt grateful for them as a blessing.’
A day later there was a message to contact Professor Robert. He spoke English, and was receptive to the symptoms I listed by phone. In due course, an email questionnaire arrived. Then, after multiple intercessions from friends who spoke French, dates for testing and surgery in August.
I completed the collection of poetry; had my hair cut, standing; on better days met friends for coffee in cafés with counters and bars.
In late July, shortly before leaving for France, the pain’s base level had dropped to a Green ‘blow to the nose’ Three. Was this self-resolution, at last; should I cancel the arrangements in France?
I rang Atlanta, Georgia and spoke to the author of the PNE pain scale, and the website on which I had first made my diagnosis. Formerly entrapped, and freed by Professor Robert, he too had stopped sitting early and reduced his symptoms. On arrival in Nantes almost pain free he had been sent home, only to return the following year.
‘It’s playing hide and seek,’ I said in a panic. ‘It’s devious and capricious. Soon I’ll need it for testing and it might not be there.’
‘Start sitting,’ he urged. ‘You should aim for at least a Three in Nantes for the tests to show cause and effect.’