In the Dark Room

by Brian Dillon

  The priest intones a final prayer before the coffin is closed. Again the scene is vague and shadowed in my memory, but for the blaze of white about my mother’s face. Into that paleness at the centre of the picture, there intrudes a tiny black dot. A fly buzzes around my mother’s head. And then, a gesture: my grandfather’s arm moves into the shot, waves the insect away. But the fly is tenacious; it returns, lands lightly on my mother’s cheek, and again her father brushes it off. The whole picture seems to stiffen around these movements, repeated as my grandfather becomes more agitated, begins to cry, becomes the single awkwardly mobile figure in the stillness of the room. The image is both unbearable and strangely distant; at that moment I can think of nothing but that this is what I will remember of my last glimpse of my mother: an old man desperately trying to protect his daughter’s body. I remember thinking how unreal this image was, how it looked already as if the moment had been excised from a fiction, a cinematic cliché as remote from the reality of my mother’s dead body as my own giddy and wavering perspective.

  I seem only to recall images of this distance, to remember the gulf between my mother’s body and me, my failure to see it, to see her, as a proper reminder of who she had been. The whole day seems a series of cracked images of this misrecognition, of the severing of my body from an authentic remembrance or mourning. Later, at the church, another of the officiating priests would approach the pew where we sat and ask which of the three of us was Brian: the one, he had been told, who looked most like my father. He seemed not to be able to see me, and my sense that I was not really part of this scene at all was only heightened when my father joked that he must want to speak to ‘the good-looking one’. The poor priest was none the wiser. It was as if the familiar network of family likenesses had broken down, and I could no longer rely on my resemblance to my father. And if I had begun, in adolescence, to resent the frequent remarking of this likeness, it now seemed the marker of a physical memory in the process of being undone. In fact, I felt that I was no longer able to recognize the bodies around me, nor to make them remain solidly in their own time: at least three bodies seemed to meet in the image of my mother’s corpse. The corpse, a reminder of the living body, returns us to our own remembering body. Together, they make a frieze that is subject to the violent amputations of forgetting and the aching reminder of bodies long gone.

  ¶ The forefinger

  I am trying to picture again my mother in her coffin, trying to clear the fog that surrounds the singular clarity of her face, to see more of that scene than is given to me by my recollection of the moment of the kiss and my grandfather’s awkwardly advancing, stricken hand. But the effort is fruitless: time and again I fail to see the rest of her: I cannot see her hands. This absence is quite at odds with my memory of her when, in the last years of her life, so much of her presence depended on the condition of her hands. What exactly is it that I cannot recall there, where there ought to be a lucid picture of the body I knew so well?

  In the second chapter of David Copperfield – a chapter simply entitled ‘I observe’ – Dickens has his hero sketch for the reader a few of his earliest impressions:

  The first objects that assume a distinct presence before me, as I look far back, into the blank of my infancy, are my mother with her pretty hair and youthful shape, and [the servant] Peggotty with no shape at all, and eyes so dark that they seemed to darken their whole neighbourhood in her face, and cheeks and arms so hard and red that I wondered the birds didn’t peck her in preference to apples.

  I believe I can remember these two at a little distance apart, dwarfed to my sight by stooping down or kneeling on the floor, and I going unsteadily from one to the other. I have an impression on my mind which I cannot distinguish from actual remembrance, of the touch of Peggotty’s forefinger as she used to hold it out to me, and of its being roughened by needlework, like a pocket nutmeg-grater.

  David is unsure of the accuracy of his memory: ‘this may be fancy’, he concedes. But the luminousness of the image is enough at least to convince us that, plausible or not, the reanimated scene has stayed with David Copperfield, and has nourished his later life in ways, as he says, that have made him capable of being happy. It is only, he reflects, those who can remember such details who are able ‘to retain a certain freshness, and gentleness, and capacity of being pleased’. David’s ability to recall these moments (or, perhaps, to invent them) is enough – or so Dickens would have us believe, at this early juncture in his novel – to convince the reader of the narrator’s reliability.

  But the most striking moment in this briefly fancied recollection is surely the tiny detail of Peggotty’s forefinger. It is the one aspect of the remembered moment that is not visual but tactile. David (or Dickens) remembers, first of all, the touch of an adult hand. The child is astonished by the roughness of the adult’s finger, as if he cannot quite believe that this unyielding skin was once as pliable and youthful as his own. To the child, no other part of the adult’s body is so alien. Everything else – height, bulk, grey hairs and deep lines – is as yet too far away to impress anything of the sense of time having hardened around the ageing body. I have a very clear memory of my father’s hands. Their weathered asperity looked to me to inhabit a world of maturity and confidence of which I would never be a part. I remember this thought: my father’s hands must be less capable than my own of really feeling what they touched. If I felt too that I could never fit myself to that second skin, it must have been because, despite the tradition of my resemblance to my father, I had already identified my own body with the texture of my mother’s hands.

  This affinity was rarely made tangible by touch: I have no memory of holding my mother’s hand. A single photograph records a moment in a park sometime in the mid-1970s when it seems I did actually clasp her hand (perhaps only for the camera?), but my memory of her is dominated by the condition of her hands, and the photograph serves only to make me wonder if the hand I am holding there is already the hand I remember. The symptoms must have arrived slowly, almost imperceptibly, her new sensitivity to the cold giving no clue to the pain that would later, by a horrible paradox, separate her from the touch of the world around her at the same time as it sealed her body in an unbearable sensitivity. I remember an eventual diagnosis: Raynaud’s syndrome, an inherited circulatory disorder which, it turned out, afflicted several members of her family. It must have seemed at first a mere annoyance. She needed to wear gloves well into spring, to avoid immersing her hands in even tepid water (we acquired a dishwasher), to have her fingers regularly massaged back from the blue edge of advancing cold (a touch I do recall). I remember that I became accustomed, on wintry afternoons and then in warmer seasons, to shopping trips in search of warmer gloves and, later, of fleeced boots chosen from catalogues that arrived regularly in the post.

  I can only imagine how my mother’s gradual retreat from health must have felt. As I remember it, there was no sudden plunge into sickness, just this protracted drift away from the shores of ease with the world and into icy currents of pain. I can piece together only the flimsiest of chronologies: I know that her hands suffered first, and that one summer, on returning from our usual holiday at her father’s house in Kerry, she noticed that some patches of skin on her neck and chest were untanned. I can picture her now, standing in front of the big mirror in her room, examining these peculiar blotches, but I can no longer tell whether this image derives from a time before or after the diagnosis that would set her on an uncertain course.

  Sickness is a kind of time travel. It does fearsome, paradoxical things to our sense of chronology, tipping us into an alternate time which seems to accelerate, dizzyingly, or to slow to a geological crawl, setting us apart, as if airlocked, from the world around us. The poet John Donne, having recovered, in 1624, from a long and life-threatening sickness, wrote of this plunge into a painfully personal time:

  Variable, and therefore miserable, condition of man! this minute I was well, and am ill, this minute. I am surpris
ed with a sudden change, and alteration to worse, and can impute it to no cause, nor call it by any name. We study health, and we deliberate upon our meats, and drink, and air, and exercises, and we hew and we polish every stone that goes to that building; and so our health is a long and a regular work: but in a minute a cannon batters all, overthrows all, demolishes all; a sickness unprevented for all our diligence, unsuspected for all our curiosity; nay, undeserved, if we consider only disorder, summons us, seizes us, possesses us, destroys us in an instant.

  I wonder now if my mother lived through such a moment. If so, I never saw it for what it was. It was only later that I remembered her returning from a hospital appointment and telling my father her diagnosis: a rare autoimmune disease called scleroderma (I became so familiar with the word that it was only years after she died that I stopped to think of its Latinate meaning). Even then, perhaps a diagnosis was not, in her mind, such a terrible blow. The symptoms were disturbing but not as yet crippling, and perhaps for a time there was at least a sense that in naming her illness she had begun to accommodate herself to it. I remember this much of what she told my father: that the disease would tighten and discolour her skin. She grew accustomed to the comments of neighbours and friends who thought she looked very well; what looked like a healthy tan was in fact evidence that the disease had taken hold of her whole body. And I remember this: her doctors’ assurance that, although the disease was incurable, and would slowly debilitate her, it would not kill her.

  ¶ Prognosis

  Scleroderma, it is true, is not always, or often, fatal. Of its two varieties – ‘limited’ and ‘diffuse’ – the first, while debilitating, painful and disfiguring, is more in the order of a manageable, chronic condition than a life-threatening disease. And even the second is unpredictable, the patient’s prognosis depending largely on events in the first few years after diagnosis, when the illness usually announces its long-term intent by the presence or absence of damage to the internal organs. The name ‘scleroderma’ – denoting, in recognition of the most obvious effect of the disease, a simple hardening of the skin – was given to a set of symptoms in the middle of the nineteenth century, but the first recorded case seems to be that of a seventeen-year-old girl in Naples in 1752. Carlo Curzio, a physician at the city’s Royal Hospital, recorded, the following year, that the girl had come to him barely able to open her mouth or move her head, so hard and tight had her skin become. Curzio prescribed warm milk, vapour baths, bleeding of the foot and small doses of mercury; after eleven months of these treatments, he writes, his patient’s skin had returned to its former suppleness. Reading modern accounts of the myriad tortures which scleroderma inflicts upon its victims (its later title of ‘systemic sclerosis’ is closer to the reality of a disease which merely announces itself on the skin), I wonder what became of this poor girl. If Curzio is indeed the first to describe the disease that killed my mother in a few short years, this cannot have been the end of her suffering.

  Scleroderma is incurable and, in its origins, enigmatic. Some connection to physical or emotional trauma has recently been conjectured. The mechanism by which it wreaks havoc in almost every part of the body has been isolated – a generalized build-up of collagen in the body’s connective tissues – but this hints, for the layperson, at few of its atrocious effects, and, for the specialist, at not many more of its possible causes. The list of symptoms (a list I don’t need to read) is almost incredible in its extravagance, in the insidiousness with which the disease infiltrates every interstice of the patient’s body. Its visible portents are also its first agonies: it is prefaced by the slow onset of Raynaud’s syndrome, a not uncommon affliction by which the hands, when subjected to cold, turn white, then blue. (More than one generation of my mother’s family exhibits these signs; every winter, I pay close attention to the numbness of my fingers, waiting for my turn.) There follows a thickening of the skin which may be confined or diffused about the body: the skin hardens, becoming shiny and impermeable (pores close, hair follicles are destroyed). At this point in its progression, the disease can be most distressing simply in its alarming effects on the face. The patient, it is said, feels as if she were being given a slow facelift. But the process continues until the face has not merely tightened, but noticeably altered in shape. Experts have offered the grotesque term Mauskopf to denote this new and, for the patient, terrifyingly alien face, which looks as though it were being pinched, contracting around the nose and mouth. The face, in fact, becomes a mask: lips, nose, eyelids and cheeks all lose their mobility; speech becomes difficult, and eating more so, as the mouth shrinks and sharp lines are incised around the lips. Later, the newly impassive face may be marked by deep lesions, typically extending vertically down the forehead. Again, the terminology is appalling: this stage is given the far too vivid name of ‘scleroderma en coup de sabre’, as if the victim’s face has literally been lacerated by the blow of a sword. Eventually, once the disease has entered what is called its ‘atrophic’ stage, the skin relaxes once again; but it now begins to be marked by patches of ruined blood vessels, which manifest almost symmetrically, composing a ‘butterfly’ effect.

  Such symptoms are only the beginning. In turn, all major organs are attacked directly (except, as if by some wretchedly poetic irony, the heart, which suffers only as a result of ravages elsewhere). The oesophagus contracts and becomes rigid, taking on – so the literature has it – the appearance of a solid ‘glass tube’. What little food the patient can swallow causes an excruciating acid reflux, leading to further scarring. The intestines cease to absorb nutrients efficiently. All of this leads to pronounced weight loss. The lungs are subject to a stealthy fibrosis, so that the patient is exhausted and breathless after the slightest exertion. (Scleroderma has unfathomable affinities with the occupational diseases of miners and those who have worked with and been poisoned by solvents and pesticides.) The salivary glands come under attack, leaving the patient permanently dry-mouthed, making speech even more uncomfortable. Muscles begin to waste, joints to stiffen and bone to produce excrescences. Calcified, bone-like deposits appear beneath the skin, threatening and disfiguring its surface further as they break through. At last, as happened to my mother, the kidneys start to fail: this is what kills most of those who die from scleroderma.

  Of this comprehensive and horrific array of symptoms, the one that haunts me most is the effect of the disease on the patient’s hands, for this was the pain of which my mother complained most, and the debility that seemed, to me at least, to cause her the greatest frustration. Her hands gradually became useless: blood flow was cut off, the skin became as hard as wood, and vicious sores and infections erupted in her fingertips to remind her that she still, despite her body’s hardening against the world, had feeling there. She wore gloves when leaving the house, no longer only to protect her already ailing hands against the cold, but to avoid comment on the sight of her fingers turning inwards to form (as, once more, the medical accounts I have read put it with, for me, an unwarranted precision) a pair of immobile claws. She baulked, I remember, at the clumsy remedies to which she was invited to resort to help her carry out the simplest tasks. Sometime in the last couple of years of her life, she purchased a pair of electrically heated gloves that attached to a heavy rechargeable battery. I think she rarely used this awkward technology, and resisted to the end a dismal catalogue of utensils designed for the use of the aged, infirm or arthritic. She must have wanted to maintain at least the illusion that she could reach out to the world of her own accord, although every touch, every effort to make contact with the things or bodies around her was a reminder of how she had retreated from that world.

  My mother’s case, as a doctor once informed her, was the worst (the most aggressive, the most rapidly advancing, the least responsive to treatment) that the several specialists who attended to her diverse sufferings had ever come across. What little they could do for her by way of alleviating specific symptoms had, on occasion, even more debilitating effects. In the
last year of her life, one drug caused such a rapid depletion of potassium in her body that she ended up in a psychiatric ward. I was old enough to know that this was a particular cruelty of the disease: to have subjected her to the keenest degree of a pain with which she was already too familiar. For years, she had fought against a depression that, as I recall it, predated her physical illness by several years (I have the vaguest recollection that I knew there might be some connection between the two: the mysterious origin of the disease in the body’s response to trauma or distress must already have been suspected). Her depression had come and gone like a malign sort of weather. It engulfs, or recedes from, many of my childhood memories, hovering as an indistinct pressure at the edges of my recollection of specific times, or spiralling to enclose a very clear image: for instance, her endless round of medications, of which the then current and mostly useless recourse to crude tranquillizers is the most vivid in my memory: a profusion of little green pills that, long after she died, still turned up sometimes in dusty drawers and cabinets.