Every Third Thought Page 8

  In the popular mind, to be ‘a patient’ has connotations of submission, passivity, and acceptance. One serving nurse has addressed the contemporary association of the term: ‘I am interested in this word because I think that nowadays the quality of being “patient” is essential to all staff who work on the frontline in the NHS. We all have to be “able to accept or tolerate delays, problems or suffering without becoming annoyed or anxious”. This leaves me wondering: who is the patient?’ Certainly, the invalid’s experience of enforced isolation evokes a variety of responses.

  As a sick person, you might find yourself to be more restless, angry, and difficult – ‘im-patient’ – than you expect. Here, etymology provides a helpful corrective. Patient, the noun, has nothing to do with tolerance; rather, it is all about suffering. The word itself originates in the Middle English pacient, from Anglo-French, and from Latin patiens, or the present participle of patior to suffer. The word’s first known use comes in the fourteenth century when it refers to ‘a sufferer, one who suffers patiently’. In 1484, the printer/publisher William Caxton connects the word to illness with ‘Whan the pacyent or seke [sick] man sawe her . . .’

  The experience of ‘the patient’ reinforces his or her solitude. Only patients can possibly understand what they are suffering. Hospitals are lonely places, especially at night. That isolation sponsors fear and uncertainty. The existential mystery of being unwell, towards the end of life, might become a consolation. It might also inspire the black realism of Samuel Beckett, in the words of Pozzo towards the end of Waiting for Godot:

  One day he went dumb, one day I went blind, one day we’ll go deaf, one day we were born, one day we shall die, the same day, the same second, is that not enough for you? They give birth astride of a grave, the light gleams an instant, then it’s night once more.

  Is this not a subtle allusion to that Anglo-Saxon sparrow fluttering through the smoky mead hall? Beckett’s vision of man’s fate is universal to the older self and that increasingly urgent internal dialogue about becoming reconciled to human ‘insignificance’ and getting lost in the infinity of time and space.

  *

  In the realm of patient-hood, there can be few stranger tales than the twentieth-century experience of the survivors of the ‘sleeping sickness’ pandemic of 1916–17, a story reported in Oliver Sacks’ medical classic, Awakenings, a book that has inspired short stories, poems, novels, and plays, notably Harold Pinter’s A Kind of Alaska. Its central themes – falling asleep, being turned to stone, being awakened, decades later, to a world no longer one’s own – grip the imagination like the best drama.

  The ‘sleeping sickness’ pandemic of 1916–17, a development of Parkinsonism, ravaged the lives of nearly five million people before it disappeared, as suddenly and inexplicably as it had appeared, in 1927. A third of those afflicted by encephalitis lethargica, a virus of the mind that causes a kaleidoscope of bizarre neurological symptoms, died in its acute stages, usually in advanced states of coma. Patients who suffered an extremely severe somnolent/insomniac attack often failed ever to recover their original vitality, and lived out their days, cut off from humanity, in a deeply strange, inaccessible, frozen state (‘a kind of Alaska’), oblivious to the passage of time, or what had befallen them.

  ‘Patient’ hardly begins to do justice to the torments endured by these survivors. Perhaps their best consolation was that they were unaware of their suffering, like ‘extinct volcanoes’ according to the doctor who first identified encephalitis lethargica. They would sit motionless and speechless all day in their chairs, totally lacking energy, impetus, initiative, motive, appetite, affect, or desire. According to Andrew Lees, who worked on British ‘sleeping sickness’ patients at Highlands Hospital in North London, it’s a measure of the brain’s inscrutability that the exact cause of this strange affliction is still a mystery. Everything about ‘sleeping sickness’ was capricious, he remembers. ‘Nothing was predictable.’ It was his job to ‘decipher a chaos that appeared to defy the laws of pharmacology.’

  In the majority of cases, these patients had their thoughts and feelings unchangingly fixed at the point at which their long ‘sleep’ had closed in on them. For many survivors, this was the 1920s, a time more real to them than any subsequent decade. Their minds remained clear and unclouded; and yet, unable to work or to see to their needs, frequently abandoned by their friends and families, these patients were put away in chronic hospitals, nursing homes, and lunatic asylums and forgotten, like lepers of the twentieth century. Yet some lived on, getting older and frailer, inmates of institutions, in Sacks’ words ‘profoundly isolated, deprived of experience, half-forgetting, half-dreaming of the world they once lived in.’

  In 1969, after more than forty years of lives as insubstantial as ghosts and as passive as zombies, these ‘extinct volcanoes’, scattered in hospitals for chronic neurological disability in Britain, France and the USA, erupted into life through the intervention of a remarkable new drug, L-DOPA (laevodihydroxyphenylalanine), which had extraordinary ‘awakening’ powers. In one hospital in particular – the Beth Abraham in the Bronx, New York City – some eighty patients, long regarded as effectively moribund, returned explosively to life. Oliver Sacks was the brilliant young neurologist who administered the wonder drug. Awakenings became his account of a unique experience, the return to humanity of men and women whose personalities had become immured in post-encephalitic torpor.

  Sacks kept meticulous notes on his patients’ recovery. ‘I cannot think back on this time without profound emotion’, he wrote later. ‘It was the most significant and extraordinary moment in my life, no less than in the lives of our patients. All of us at Mount Carmel [Beth Abraham] were caught up with the emotion, the excitement, with something akin to enchantment, even awe.’

  Sacks’ stories become a kind of memoir, a neurological romance and a profoundly sympathetic essay on the human condition. For me, at this point in my journey, Awakenings teaches many lessons. In hospital, as patients, suffering the torments of isolation, two things occur, in opposition: we lose our individuality, joining the continuum of the unwell, while becoming more self-obsessed, having the leisure for introspection. Here, in the hospital bed, we can reflect on God’s conundrum: he gives us life, and an irrepressible instinct for it, but not a clue about death, or how and when we will die. I know from experience that, as patients, we experience the flow of Time as acutely as any lover. The hours, minutes, and seconds make up days that form into a pattern of interminable waiting – for visitors, nurses, doctors, and surgeons – punctuated by irruptions of treatment. But set those moments against the historical panorama of humanity, and they seem trifling. This, too, becomes another dimension of ‘insignificance’.

  For the patient, this plays out as another version of the mind–body problem. Patients suffer physical afflictions, of course, but the real battle is fought inside their head: matters of life and death become, fundamentally, matters of consciousness, and the stories that patients tell themselves. In our own time, the post-war generation has too much of an investment in willpower to welcome a new narrative over which they have no control.

  And here’s the rub. The real world is both achingly precious and, at the same time, indifferent to our plight. The sun goes down, the tides ebb and flow, and the rain rains every day, steady and relentless, as it has always done. Elsewhere, the landscape shifts a bit here and there but – this side of the next Ice Age – essentially, it remains immutable, resilient, and settled. Even with global warming, the planet’s continuities seem to dominate the discontinuities. Let’s be optimistic. Resilience is possibly one of Earth’s best qualities, and one that continues to shape the lives of its inhabitants.

  The patient becomes a microcosm of humanity. Considering our response to illness and mortality, it seems to me that humanity tells stories, or makes new tunes, to be at peace with its eternal predicaments. During the course of 2015/16, I arrived at the conviction that the internal dialogue provoked by �
��every third thought’ can only be resolved through narrative. Once upon a time, that was the role of religion. But what kind of self-justifying stories can patients tell themselves to sustain their resilience in an age without faith? The short answer – following the theme of this book – has been the assertion of the self, in that cocktail of optimism and defiance we call willpower.

  It is perhaps part of humanity’s intrinsic nobility of spirit that very many individuals, facing the inevitable endgame, discover an urge to be positive and undaunted. For the anonymous patient, grappling with ‘insignificance’, this becomes a reassertion of identity and meaning. Willpower often tells another story. And so, often amid degradation, sorrow, and despair, there are many inspiring tales of grace, courage, and dignity.

  10

  THE WILL TO LIVE

  ‘People’s capacity to survive, one way or another, loss and even devastation is at once a banal and remarkable fact. The sheer stubbornness of the so-called “will to live” is often cause for celebration.’

  Adam Phillips, Darwin’s Worms

  For my friend Kate, a woman just in her fifties, but who could easily pass for a seasoned forty-something, the battle between ill-health and self-esteem has been fought in mind and body, at the front line of sickness, and in close combat.

  At times, it can feel as if breast cancer among the middle-aged women of the twenty-first century has become an epidemic. Fifteen years ago, when my sister Elizabeth survived a brutal encounter with the disease, bravely facing down its threats, I learned at first hand its traumatic effects on family life. In March 2016, I was completing a first draft of this book when Kate, an experienced broadcaster, emailed with the news that she had recently been diagnosed with an aggressive Grade 3 tumour in her left breast.

  In the UK, some sixty thousand women will be diagnosed with breast cancer every year: that’s one every ten minutes. As everyone knows, breast cancer remains inexorably a killer, but 85 per cent of patients will survive beyond five years, a figure that a woman in Kate’s position must cling to. Her awareness of life’s transience has paradoxically strengthened her life, renewing her natural kindness, good humour, sympathy, and candour. All of this, remarkably, has flowed from the exercise of her willpower.

  Kate has always been blessed with an irrepressible joie de vivre. Her determination to grapple with the shadows of ill-health as part of the human condition has made her, strangely, more alive than ever. Kate is singular and exceptional, but she is not unique. Defiance is essential to ‘the will to live’, but so is optimism. She has never been less than courageous, positive, and optimistic.

  ‘I think I’ve been lucky,’ she begins when, a few days later, we talk it over together in a cafe one spring afternoon in Notting Hill. Outside, the world is drenched in April sunshine, and bursting with new growth. Within, not even Kate’s defiance can quite dispel the menace of cancer’s deathly fingers. ‘I do now wonder about my luck,’ she repeats, turning over the latest sequence of events in her life. Not only had her tumour been caught early, her diagnosis was the fortunate outcome of a bureaucratic cock-up.

  All women over fifty in Britain are entitled to an NHS scan every three years: Kate had been given the all-clear just a year before. But then, inexplicably, she was called in by her local hospital for another routine mammogram. In the midst of a busy life, she decided to go. When she arrived for this appointment, the receptionist seemed confused by the mistake, but said, ‘You’re here now, so if you want to have it . . .’

  Kate replied, ‘How many women are in front of me?’

  ‘Just two.’

  ‘So I thought,’ she continues, ‘all right then, I’ll have it. But now – had I been told, There are six women waiting in front of you – I wonder if I might not have said, “Oh, stuff it,” and gone home.’ She laughs. ‘So I consider myself to have been lucky.’ We reflect on the strange tricks of chance. She admits that her fear of dying was trumped by the more immediate fear of mutilation.

  ‘In the two-week period between being called back for more tests and the final diagnosis of cancer, obviously I was frightened of dying, but I was also really, really, frightened of losing my breasts. Here I am – I thought – I’m a fifty-four-year-old woman. I’ve already had to go through the indignities of the menopause. Evolution has already told me that I’m useless. Now I’m going to lose my breasts – and my hair – which I’ve always thought were a rather good feature.’

  In fact, Kate found her luck holding: ‘One of my first questions to the surgeon was, “What am I going to lose?”’ When he replied that he thought he would be able to perform a lumpectomy, and save her left breast, Kate says, ‘I felt this incredible sense of relief.’

  Her oncologist embarked on treatment with bewildering speed. Even with her ‘luck’, Kate could not escape an overwhelming sense of a malignant Fate. ‘I don’t believe in God,’ she remarks, ‘but I did come to imagine a wrathful Greek god who was taking revenge on womankind. I mean, can you think of a more evil disease than one where they strip away your breasts, and make you lose your hair? Isn’t that a kind of torture?’

  When she met with her surgeon after the initial diagnosis, Kate’s profound relief that she did not require a mastectomy still came with some unwelcome news. Her treatment would involve six weeks of radiotherapy, and ‘probably’ (in their consulting rooms, doctors cultivate euphemistic imprecision) some chemo as well. She was alarmed at the prospect of intensive radiotherapy. The more she looked at it, the bigger the commitment of time – five days a week for six weeks – which seemed to threaten her professional life. But then: more luck.

  Kate heard from a close friend about a radical new treatment known as IORT (inter-operative radiotherapy). This involves cutting out the growth, then targeting the tumour bed and ‘zapping the cancer’. Kate immediately put on her journalistic hat and contacted the surgeon involved, who proudly told her how successful his trials had been.

  Kate began to press for the new treatment at once. For her, the attractions were obvious: IORT would mean a one-off session of radiotherapy. (Kate’s tumour was over her heart, and her consultant had advised her that there was still some doubt about ‘the long term effects of radiotherapy on the heart’.) IORT would minimize the irradiation of the cancer so close to a vital organ.

  Kate’s IORT would be performed on the day of her lumpectomy. ‘Zapping the cancer at once seemed a good idea,’ says Kate, in her breezy and forceful way. ‘I was going to take control of this. That’s the kind of person I am.’ Accordingly, at the appointed time, her surgeon performed the operation, and then the German-designed IORT machine was wheeled into position. Kate’s wound, and the tumour bed, was ‘zapped’ for forty minutes with a single, targeted beam. There was no burning to the skin (a typical side-effect of conventional radiotherapy), and afterwards the surgeons sewed her up. ‘I went home the same day,’ says Kate, quietly triumphant. ‘I was back at work a week later.’

  Still, she had undergone a life-changing trauma. Today, on this sunny spring afternoon, with her surgery behind her, but still in the midst of chemotherapy, Kate speaks, candidly and with some passion, about her fears in retrospect. As well as her fate as a woman, there was also her sudden and poignant fragility as a human being. She found herself lying awake at night, ‘feeling really, really frightened’, and sobbing uncontrollably in the dark. ‘I was imagining the worst,’ she continues. ‘What if the cancer had spread? What if it was all over me? What if . . . ?’ Kate stops: those had been unthinkable thoughts.

  In the complex transaction between mind and body, I have often speculated about whether it is possible to influence, or even cure, an illness by taking thought. People talk about ‘fighting’ cancer with ‘a positive mental attitude’. During my convalescence in the years after my stroke, I would sometimes affect a ‘no surrender’ attitude which at least made me feel better about my unresolved and chronic disabilities. Some stroke-recoverers even punish their bodies in the hope of firing up pathways of n
euro-plasticity.

  In my experience, thoughts more often tip the other way into the abyss of ‘What if?’. What if I never walk freely again? What if, with ageing, my mobility becomes seriously restricted? What if I fall in a crowded street? What if my instability is connected to neuro-degeneration? What if I can no longer function in the working world? These ‘What ifs?’ seem to offer the prospect of isolation, solitude, and prolonged physical restriction. Cabin’d, cribb’d, confin’d, like Macbeth, we become prey to saucy doubts and fears. All this, of course, takes place in our hyper-active and hyper-imaginative brains. For the successful breast-cancer patient, the catalogue of ‘What ifs?’ is almost infinite.

  Later in our conversation, reflecting on these desolate moments, but speaking carefully, as if feeling her way into a difficult subject, Kate admits: ‘I wish I did believe in something. I’ve certainly felt that . . . the need . . . In those days when I was waiting to hear if I’d got it or not – and I was convinced that I did – in those moments, when you’re so frightened it’s as though the blood running through your veins is ice-cold, then I did wish I believed in God.’