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My old friend, pain

Essay | 19 minute read
Five out of ten? Impossible to bear? Nagging, burning, stabbing, dull? Like a rat gnawing at your toes? Lucy Scholes examines how and why we articulate pain

For six months between November 2014 and July 2015, the Special Exhibitions Gallery at Harvard Art Museum exhibited Mark Rothko’s famous Harvard Murals. Commissioned to hang on the walls of a penthouse dining room in the university’s Holyoke Centre, the murals were proudly displayed in their intended setting throughout the 1960s and 70s. During which time the original colours faded significantly, so much so that in 1979 they were deemed no longer suitable for exhibition, taken down, and put into storage for the next thirty-five years. When they reappeared for public viewing, the canvases had been miraculously returned to their full, original glory, the deep colours — dark, bruised purples, and brilliant contrasting vermilions — as rich as when Rothko first picked up his brush. This, however, wasn’t the result of traditional restoration methods, but rather a magic trick achieved by means of some innovative custom-made software and a digital camera-projection system.

Mark Rothko, Panel Four 1962 (Photo by David L. Ryan/The Boston Globe via Getty Images)

In February 2015 I visited Boston. I arrived during a momentary window of calm between snowstorms. On the second day of my trip the storms swelled up again, and everything shut down. Two days of snowbound isolation followed, during which time I stayed in bed in my hotel room, read books, watched TV, and ate the sugary, salty contents of the minibar. Then, on the third morning, I awoke to sun. The snow still lay thick and heavy all around, and it was bitterly cold, but the city had struggled back to life. I dressed myself in thick layers of thermals and wool, and took the Metro across the river to Cambridge to spend the afternoon with a friend I hadn’t seen since he’d left the UK for a PhD programme here a couple of years earlier.

A few hours later, as the last of the daylight faded to black outside, I sat in the living room of my friend’s apartment listening to him explaining the mechanics of physical pain. How we feel it, and why. My friend is an Oxford- and Harvard-educated MD, so I was talking to an expert. The details of what he told me, however, I can’t even begin to recap here. I was simply in too much pain to concentrate on what he was saying, let alone process and retain the information.

What I kept thinking about instead were the Rothko murals we had seen earlier that afternoon — I had been in pain then too, but at that point it had been distracting rather than preoccupying. After lunch, he’d taken me on a tour of the museum, and serendipity meant we’d reached the gallery where they were hung only a few minutes before 4 p.m., the time at which each day the projectors were briefly turned off so that visitors can view the canvases in their natural, deteriorated state — and thus be dazzled by the marvels of modern technology, no doubt — so we sat and waited for the magic trick to be undone, the curtain to be pulled back. A gentle whirring sound — so soft I wasn’t even aware of it until it ceased to be — wound down to silence, and with it the canvas in front of me was instantly and utterly transformed. My first impression was that of a bright light having suddenly been turned off, the dimness that followed not so much reality, but more a perception one knows isn’t real: reality stripped bare of meaning. Ostensibly the painting in front of me was still the same object it had been only seconds before, but its vitality had disappeared, as stark a ‘before’ and ‘after’ comparison as I’d ever seen. Which version was the authentic one, I found myself wondering? That which depicted the colours as the artist had originally intended, even if this was only possible due to technological intervention? Or was it the version that appeared when the projectors were turned off? That which was undoubtedly dull and faded, but unmeddled with, subject only to the natural wear and tear of existence? Either way the original work had vanished, what I was now seeing instead were two new pieces entirely. One that was dull and meaningless, though unviolated. The other a clever simulacrum of artifice. Neither quite right.

To live in pain is to find oneself existing between two not dissimilar slightly strange unrealities. Pain dulls me, wears me down, tires me out; the result of which is that both my body and my mind often feel like dimmer, drearier versions of what they once were or what they could be, especially when compared to the bodies and minds of others around me. I am familiar with pain that subdues. Pain that nags. Dull, heavy aches. The pain that expands outwards from my lower back, coursing through my hips and pelvis and soldering my bones stiffly together. The accompanying nausea that expands with it, like an all-encompassing fog. But I am also no stranger to the kind of pain that has the effect of heightening my experiences. Sometimes to be in pain is to become acutely aware of both my body — every movement a cause for concern lest it send fiery flames of discomfort across my consciousness — and the surrounding environment. Certain pain — that which shrieks through me with the effect of an electric current — sharpens my senses, leaving me in an uneasy state of high alert.

The one thing I do remember my friend telling me was that the question ‘Where does it hurt?’ is always just the beginning, useful only to a certain extent since pain isn’t straightforward enough to always manifest where it originates, nor is its quality or strength always indicative of the magnitude of the injury or disease that lies at its root. Of this, I was already well aware. I have never been especially interested in understanding the physiology behind my pain; this comes from years of both being told or reading what my pain should be like and realising that it is anything but prescriptive. Instead, what concerns me more — as well as that which preoccupies my actual energy — is the articulation of my pain. Or should I say expression? My pain articulates itself to me, within me, on me, but it is I who must convey it to the wider world. Or not, as the case may be. I no doubt spend equal time hiding my pain from the people around me as I do trying adequately to explain it. To make one’s pain public is a surprisingly daunting task — writing about it here doesn’t come easily, yet I have found myself compelled to try. I see myself as faced with the same task as an interpreter who translates from a foreign language. The same stakes are at play, those of meaning and resonance.

I have often thought I could write a natural history of pain. I have known her from childhood. We have walked arm in arm, dwelt in the same house, been fellow lodgers in the same body, and occupants of the same bed. She is, like the chameleon, of every hue and like Proteus of every shape, and often like Iris, a compound of many blended into one. She is sometimes dull and heavy, sometimes constant, and again fickle and fleeting, sometimes sharp and again flat — then quick as light or … drags her slow length along. – Thomas Smyth, Autobiographical Notes, Letters, and Reflections (1914)

Joan Didion regarded her migraine pain as ‘more friend than lodger’ (Photo by Jemal Countess/Getty Images)

I have been in pain my entire life. How much pain, and how debilitating it is varies, but it remains a constant in that I have no knowledge of a life without it. Pain has been my loyal companion for as long as I can remember; more devoted than the most faithful four-legged friend, more attentive than a doting parent, more consistent than the most reliable pal. I’m hardly the first to use such metaphors. In a turn of phrase that’s reminiscent of the sentiment expressed above by Thomas Smyth, who was writing in the mid-1800s, Joan Didion explained in The White Album how she came to regard her migraine pain as ‘more friend than lodger’.

I read Smyth’s words and it’s as if he’s describing my own experience. My mother recalls how I whinged and whined as a small child, especially when people touched me, complaining how various bits of me hurt; how I would whimper in my sleep when she tucked my blankets around me. It wasn’t until I was sixteen that I was diagnosed with a particular type of hereditary rheumatoid arthritis, my discomfort confirmed and legitimised in one go. The test is not a routine one, it is the search for a particular gene — HLA-B27 — which I can only presume is expensive, hence my doctor’s reluctance to draw the necessary blood until I was at an age when my symptoms could no longer be dismissed as ‘growing pains’. As far as I understand it, HLAs (human leukocyte antigens) are proteins located on the surface of white blood cells. Ordinarily, their job is one of protection, to help the immune system differentiate between healthy tissue and foreign substances that have the potential to cause infection. HLA-B27, however, does the opposite. It disrupts rather than aids the immune system. The paranoid schizophrenic of HLAs, it sees threat where there is none, attacking the body’s healthy cells.

Any — indeed, all — illness can be experienced as a form of treachery since the result is that one’s body no longer performs the way it should, behaviour over which we often have very little control. ‘The disease hath established a Kingdome, an Empire in mee,’ wrote John Donne in Devotions on Emergent Occasions (1624), ‘and will have certaine Arcana Imperii, secrets of State, by which it will proceed, and not be bound to declare them.’ But autoimmune disorders can seem like the keenest of such betrayals, the invader not an alien force from outside, but an intrinsically untrustworthy fifth column firmly established within.

I have read many illness memoirs over the years; it is a subject that has always fascinated me, not because much of what I’ve read rings true to my own experiences, but precisely because in many ways it doesn’t. I am envious of the imposition of structure that these narratives demand: the illness or the injury, immediate damage control then the necessary long or short-term treatment, followed by the road to recovery, then there’s wellness again. The norm is reestablished, the patient has endured, they are not unscathed but they have emerged on the other side, and with this the narrative finds its conclusion. Those of us who suffer from chronic conditions don’t recognise such a prescribed chronology. Our experiences of ill health and pain can’t be neatly contained within the absolutes that traditional plot, chronology and narrative structure demands. We must experiment with new fragmented forms if we’re to come close to describing our particular lived experiences.

As Hilary Mantel reminded us in her 2009 London Review of Books essay, ‘What is going on in there?’, there’s a particularly cruel limbo reserved for the undiagnosed as they’re passed from pillar to post: ‘like stateless persons, ejected from the office of one consultant, washed up at the door of another specialty, booted out of a third clinic with question marks all over their notes; sometimes it is a relief, however hellish the final destination, to be granted leave to remain.’ This particular realm of uncertainty is not that in which I find myself — though I have plenty of first-hand experience of the frustrations involved in being batted back and forth between medical specialities as different parts of my body succumb to inflammation — instead, mine is one of false permanence. If, as Susan Sontag so eloquently suggested, we each of us hold dual citizenship in both the kingdom of the well and the kingdom of the sick, to suffer from chronic pain is to have a visa that allows entry to both, but ultimately denies one permanent residency in either. I vacillate between the two, putting down roots in one only to find myself cast unceremoniously back into the other.

To read about both illness and pain is to learn that metaphors of geography and travel abound. ‘Empathy,’ wrote Leslie Jamison in The Empathy Exams, ‘comes from the Greek empatheia — em (into) and pathos (feeling) — a penetration, a kind of travel. It suggests you enter another person’s pain as you’d enter another country, through immigration and customs, border crossing by way of query: What grows where you are? What are the laws? What animals graze there?’ As these metaphors correctly suggest, one inhabits illness. One lives in pain. Sontag’s metaphor is an illuminating one, well suited to those diagnosed with tuberculosis, cancer, or AIDS, yet it ignores a fundamental aspect of a life in chronic pain: one of the sharpest felt cruelties of the experience of pain is just how isolating it is, how completely and utterly alone one feels in the midst of suffering. Those in pain dwell in their own lonely kingdoms, rattling around in castles built for one. This, of course, is one of the reasons being able to successfully articulate one’s pain — whatever that means in each individual circumstance, whether it’s being able to obtain the correct pain relief, or put to rest suspicions of malingering — is of the utmost importance.

Alone in the exam room, I stare at the pain scale, a simple number line complicated by only two phrases. Under zero: ‘No pain.’ Under ten: ‘The worst pain imaginable.’

The worst pain imaginable … Stabbed in the eye with a spoon? Buried under an avalanche of sharp rocks? Impaled with hundreds of nails? Dragged over gravel behind a fast truck? Skinned alive?

Determining the intensity of my pain is a blind calculation. On my first attempt, I assigned the value of ten to a theoretical experience — burning alive. Then I tried to determine what percentage of the pain of burning alive I was feeling.

I chose 30 percent — three. Which seemed, at the time, quite substantial.

Three. Mail remains unopened. Thoughts are rarely followed to their conclusions. Sitting still becomes unbearable after one hour. Nausea sets in. Grasping at the pain does not bring relief. Quiet desperation descends.

‘Three is nothing,’ my father tells me now. ‘Three is go home and take two aspirin.’ – Eula Bliss, ‘The Pain Scale’, Harper’s Magazine (June 2005)

A pain scale at University of Colorado Hospital’s emergency department, 2017 (Photo by RJ Sangosti/The Denver Post via Getty Images)

On a scale of one to ten, how bad is your pain? This is a question I have been asked on more occasions than I care to remember. Every time I see a rheumatologist — that’s routine appointments once every three to twelve months, depending on how well I am at the time, for the last twenty years of my life — it is one of the first things the doctor asks me. I also get asked it when I turn up in A&E because my pain has become unbearable — or perhaps I should say ungovernable, when the prescription opioids I reserve for bad attacks are no longer strong enough to keep the pain in check. Although it might feel unbearable at the time, by definition it isn’t, since I am bearing it while I explain the situation to the nurse who triages me, then again to the doctor who treats me. I have borne it and lived to tell the tale here too you might point out. Less practised at performing my pain — the choice of word here isn’t meant to be flippant, pain is necessarily performative, especially if one wants medical professionals to take one’s claims seriously — when I was younger, I too found myself tripped up by the pain scale, afraid that I was making a fuss about nothing, worried my tolerance for discomfort was embarrassingly low. I know now, of course, never to attempt to understate my pain. I possess my own internalised pain scale on which I monitor my pain month-by-month, day-by-day, sometimes even hour-by-hour.

Recently it has been brought to light that certain societal groups — namely women and people of colour — face problems attempting to have their pain taken seriously. The stories about sufferers of endometriosis who spent years being told by their doctors that their pain was all in their heads, the recent revelation that it’s not uncommon for period pain to be as bad as that endured during a heart attack, of the woman whose excruciating — and life threatening — ovarian torsion was nearly diagnosed too late because male doctors refused to believe she was in as much pain as she claimed, and African Americans who are refused the same pain relief that’s unquestionably handed out to white patients, a barbaric reminder that past horrors — the long-held belief that black bodies didn’t feel pain to the same degree as white bodies — still linger today. The claim that one is in pain is often simply not enough.

Doctors today are trained in bedside manner; we expect them to show a certain degree of empathy for our pain, yet this hasn’t always been the case. Before the arrival of anaesthetics and analgesics, being too empathetic could incapacitate a physician. If it’s your job to amputate a wounded soldier’s gangrenous leg, to slice through sinew and saw through bone, to dig out a tumour from deep within flesh, all without even a whiff of ether to dull the poor patient’s senses, one cannot afford to be distracted by being reminded — or imagining — what torment your intervention is inflicting. An unsympathetic doctor may be frowned upon, yet recent studies have demonstrated that ‘observing somebody in pain activated similar neurons as if the observer were feeling the pain himself.’ To begin to imagine another person’s pain is to inflict that pain on oneself, and who, beyond the sadomasochists of this world, wants that?

For those of us in pain, however, the knowledge of another’s suffering can be strangely comforting. When I am in pain, I often attempt to console myself by recalling the horrors of others, both as a reminder of just how much agony a body can endure, but also as a point of comparison: Take solace in the fact you are not at the 10 of being stabbed in the eye with a spoon or skinned alive, I repeat to myself like a mantra. The example that most often enters my mind is Fanny Burney’s now infamous account (in a letter to her sister Esther, collected in her Selected Letters and Journals, 1812) of her mastectomy, performed in 1811 by ‘seven men in black’ who quartered her breast, removed it, and then ‘scraped’ the breastbone bare of all remaining flesh. My skin crawls just thinking about it. Or the case of Joseph Townsend, born into a poor, working class Lancashire family in the early years of the nineteenth century who, at the age of three, suffered extensive burns across the right side of his torso and that arm. So severe were his injuries that during the course of his recovery (astonishing as it is that he survived), his arm ‘adhered’ to his side. When Townsend was eighteen, he hurt his wrist in the cotton factory in which he worked, and upon presenting himself at the Manchester Infirmary for Paupers the doctors took it upon themselves to not only treat his injury but to also sever his damaged arm from his side by means of an excruciating surgery. Anaesthetic had not yet been invented, and analgesics were not offered. The mind boggles.

I read On Being Ill, by Virginia Woolf. What schoolgirl piffle, I think. It’s like one of those compositions by young ladies mocked in Tom Sawyer. I can’t understand what she means when she complains about the ‘poverty of language’ we have to describe illness. For the sufferer, she says, there is ‘nothing ready made’. Then what of the whole vocabulary of singing aches, of spasms, of strictures and cramps; the gouging pain, the drilling pain, the prickling and pinching, the throbbing, burning, stinging, smarting, flaying? All good words. All old words. No one’s pain is so special that the devil’s dictionary of anguish has not anticipated it. – Hilary Mantel, ‘Diary’, London Review of Books (4 November 2010)

It is not that we can’t articulate pain. Everything I have read in preparation for writing this essay suggests otherwise. The nineteenth-century French novelist, playwright and journalist Alphonese Daudet described in detail the cruel manifestation of his tertiary syphilis, in his 1930 book In the Land of Pain, which was edited and translated by Julian Barnes in 2002. ‘Warning signs going back a long way,’ he writes. ‘Strange aches; great flames of pain furrowing my body, cutting it to pieces, lighting it up.’ In a later entry, he elaborates on the pain’s ‘varieties’: ‘Sometimes, on the sole of the foot, an incision, a thin one, hair-thin. Or a penknife stabbing away beneath the big toenail. The torture of “the Boot”. Rats gnawing at the toes with very sharp teeth. And amid all these woes, the sense of a rocket climbing, climbing up into your skull, and then exploding there at the climax of the show.’ His work is fragmentary, consisting of staccato paragraphs, each unhinged from the next. This, I think as I read the volume, is what pain feels like: fundamentally it is an untethering experience, one in which chronology has no place, and time takes on a strange elasticity. Articulation, of course, is not the same as the true conveyance of an experience, but Daudet impressively attempts — and achieves — something of the latter. I recognise the landscape he describes, it is a land I too have travelled through, though our itineraries therein differed. His pain is his alone to know, as my pain is mine.

In one of the most quoted lines from her book The Body in Pain, Elaine Scarry claims that physical pain ‘does not simply resist language but actively destroys it, bringing about an immediate reversion to a state anterior to language, to the sounds and cries a human being makes before language is learned.’ As Mantel admitted in her essay ‘Diary’, in the LRB, yes, this can be the end result — the cry of agony when all else fails — but pain is not untied from language to begin with: ‘Pain may pass beyond language, but it doesn’t start beyond it.’ We might think of it as the battle Julian Barnes describes in his introduction to Daudet’s work: pain as ‘the enemy of the descriptive powers,’ something that attempts to ‘drive[s] out language.’ I consult the ‘devil’s dictionary of anguish’ in order that I might render my pain comprehensible to others. I have no idea, for example, what it feels like to be stabbed deep in the bone with a skewer, but that is how best I can describe a particular pain that’s plagued my right hip for the past few years. Daudet most likely never knew what it felt to feel actual rats gnawing at his toes; nevertheless it’s an evocative image. Like many others employed in pursuit of the same end, these descriptions involve an aspect of attack and violation. When describing pain, it is not enough to simply convey the unpleasant sensation; apparently one must also communicate the sense of assault too.

It’s ironic then that the wealth of metaphors and similes that are employed in the service of the language of pain sit in sharp contrast with the impact pain has on one’s experience of the world. ‘[J]okes make him feel like crying,’ wrote Susan Sontag in a 1964 short story, ‘Man with a Pain’, in Harper’s magazine. ‘The world is flat, everything is what it is. Tea is dark water, bread is straw, a book weighs a pound, newspapers are black and white.’ We muster all our powers of imaginative description in order to depict the sensations we’re experiencing, but fundamentally the experience of being in pain often precipitates a failure of imagination. Perhaps that’s why my memory of those Rothkos has become so entwined with the way I experience pain. Everything is what it is: a Rothko that’s no longer a Rothko, just a piece of material pinned to wooden planks, daubed with faded paint.