Книга - Everyday Madness: On Grief, Anger, Loss and Love

Everyday Madness: On Grief, Anger, Loss and Love
Lisa Appignanesi


‘The small translucent bottle of shampoo outlived him. It was the kind you take home from hotels in distant places. For over a year it had sat on the shower shelf where he had left it. I looked at it every day.’After the death of her partner of thirty-two years, Lisa Appignanesi was thrust into a state striated by rage and superstition in which sanity felt elusive. The dead of prior generations loomed large and haunting. Then, too, the cultural and political moment seemed to collude with her condition: everywhere people were dislocated and angry.In this electrifying and brave examination of an ordinary enough death and its aftermath, Appignanesi uses all her evocative and analytic powers to scrutinize her own and our society’s experience of grieving, the effects of loss and the potent, mythical space it occupies in our lives.With searing honesty, lashed by humour, she navigates us onto the terrain of childhood, the way it forms our feelings of love and hate, and steers us towards a less tumultuous version of the everyday.This book may be short, but life, death, madness, love, and grandchildren, are all there – seen through the eyes of a writer who is ever aware of the historical and current vagaries of woman’s condition.























Copyright (#ulink_5533f715-eb8d-57eb-8ba8-9d1c23a4ebe9)


4th Estate

An imprint of HarperCollinsPublishers

1 London Bridge Street

London SE1 9GF

www.4thEstate.co.uk (http://www.4thEstate.co.uk)

First published in Great Britain by 4th Estate in 2018

Copyright © Lisa Appignanesi 2018

Lisa Appignanesi asserts the moral right to be identified as the author of this work.

All reasonable efforts have been made by the author and the publisher to trace the copyright holders of the material quoted in this book. In the event that the author or publisher are contacted by any of the untraceable copyright holders after the publication of this book, the author and the publisher will endeavour to rectify the position accordingly.

A catalogue record for this book is available from the British Library.

All rights reserved under International and Pan-American Copyright Conventions. By payment of the required fees, you have been granted the non-exclusive, non-transferable right to access and read the text of this e-book on-screen. No part of this text may be reproduced, transmitted, down-loaded, decompiled, reverse engineered, or stored in or introduced into any information storage and retrieval system, in any form or by any means, whether electronic or mechanical, now known or hereinafter invented, without the express written permission of HarperCollins.

Source ISBN: 9780008300302

Ebook Edition © August 2018 ISBN: 9780008300319

Version: 2018-08-16




Praise for Everyday Madness: (#ulink_049ee3eb-9b49-5a93-a9c0-e8f5b5ed6064)


‘Everyday Madness offers a brilliant theory and definition of a modern malady, but what makes it so enticing is that it’s also a case study in the condition it describes. In other words, in identifying a previously undescribed territory, Lisa Appignanesi has wonderfully invented a previously unwritten form’

Adam Thirlwell

‘Keen-eyed, unflinching in her honesty, Lisa Appignanesi carries us down into the depths through an inner landscape of unappeasable turmoil, as she moves towards knowledge of love and the serenity it brings. With piercing insight and many moments of intense poignancy, she illuminates the complexity and costs of a remarkable and passionate journey’

Marina Warner

‘Wonderful, moving, extraordinary. It is sui generis. I feel enormously privileged to have read it – twice. Its structure is remarkable – an enacting of the last two years. Bravo, bravo’

Edmund de Waal

‘Thoughtful, challenging, illuminating, truthful and moving. We all bear losses. Lisa Appignanesi breaks the isolation and helps us endure them’

Susie Orbach

‘By deftly moving between the personal and the public, between childhood and adulthood, between the immediacy of feeling and the distance of reflection, Lisa Appignanesi constructs an anatomy of grief and its frequent but discomfiting attendant: rage. The private, the political, and the philosophical merge in a single story of a woman navigating the jolts, terrors, fury, and confusion that arrive after the death of her spouse’

Siri Hustvedt




Dedication (#ulink_b1826791-df1c-559e-a96c-1495f9f84962)


For John

and our first grandson,

Manny




Epigraph (#ulink_b604d07a-5f89-59dd-8683-be29ae0dd1fa)


Without the thought of death, it is impossible to make out anything in a human being. Its mystery hangs over everything.

SVETLANA ALEXIEVICH



The death of a loved one is actually also the death of a private, whole, personal and unique culture, with its own special language and its own secret, and it will never be again, nor will there be another like it.

DAVID GROSSMAN


Contents

Cover (#ufa1c7bc3-ce81-5bce-a03e-f36c8fa7ebc5)

Title Page (#udfbd52ee-e5b4-58ca-918b-7b7658ecdc5d)

Copyright (#ucfa84fd3-6054-571b-8f15-9d42f0ebd5f4)

Praise for Everyday Madness (#u48e7bf75-2e92-596f-8b19-43b89ae3de04)

Dedication (#u5c66227d-56bd-575c-aa49-c613daa39c16)

Epigraph (#ucf298a82-ffd6-59c6-857b-687e38fab80f)

Prelude (#uf1134749-3a0c-5058-a9bd-6989f9b86c64)

GRIEVING (#ucd849fe4-5842-5a71-b0a4-df6238e529e2)

Chapter 1 (#u67b18268-8ac0-5486-b31d-2a3c74ec540c)

Chapter 2 (#u5811adfe-b971-58f3-8280-48d58075fd29)

Chapter 3 (#u38d69d6a-0b0c-5c15-8e1e-e6800eda0bff)

Chapter 4 (#ue1f62fe0-66ad-57a0-8ddc-93f608d43cf3)

Chapter 5 (#u3e7a8d02-91bd-5905-a27b-32a25b8d1ef8)

Chapter 6 (#u64c6bb84-80eb-59b7-aa93-33f6a7d7c1a5)

Chapter 7 (#ue8f941a7-6d65-5d68-8676-6cd8471cb419)

Chapter 8 (#uc8eceb0d-213a-5985-b806-a0ea7f6a4788)

Chapter 9 (#ua4e8a9c0-118c-5f8e-9fdb-fbd356d14052)

Chapter 10 (#uf236b7fd-a6db-52cd-9355-b461af3931cd)

Chapter 11 (#ucfe9519c-3aa4-5374-b4d7-7d7ebc05a927)

Chapter 12 (#u527e6151-d02a-5e7d-9ad3-97bd83d646e0)

Chapter 13 (#uc050c6f5-0d72-5075-a1a6-8af0bb4540f4)

Chapter 14 (#u5d9ba825-b35a-5652-a543-86ee2b86407c)

Chapter 15 (#u65105e39-1fa6-5061-a92e-5862b6dab05a)

Chapter 16 (#ufa60ffe5-5699-5ceb-a27b-57e0295fe391)

LOSING (#uf4d1451b-9ef5-52a7-8dfa-5a5aa7622ea9)

Chapter 1 (#ue670053b-95a9-5a9a-9de2-be91c0905c86)

Chapter 2 (#ubfaa7e93-74f6-5e7c-affa-bcefa823a18c)

Chapter 3 (#ua858ce31-0ede-586b-8195-6286ed947435)

Chapter 4 (#u0e602dde-b99b-52fa-a6c8-6e564bb34c3b)

Chapter 5 (#udd98a14d-f234-57cb-8ea1-279bcc2c2aa5)

Chapter 6 (#uf02340ad-8c9e-5e31-8bfd-c28658e7f78b)

Chapter 7 (#uf0a2cf63-0575-5598-9df5-997011813def)

Chapter 8 (#ub72499c2-6e47-516d-bd07-4cca20f6d342)

Chapter 9 (#u4ef9c2f2-3d61-5131-882c-f6705035e7b5)

Chapter 10 (#u831409ec-b36e-5515-bb08-0d8ba7d6046a)

Chapter 11 (#ua3be3766-a287-5f5a-8733-17fc9a52caaf)

Chapter 12 (#u5ec8fa6f-bb65-5b32-a748-fc9954b8a83d)

Chapter 13 (#uf20d1274-5805-5d90-a803-b89acfcb2a1e)

Chapter 14 (#u790814ee-0979-5dfc-8d56-bc0026a8b8c8)

Chapter 15 (#ud04eae05-a2ef-550e-b30e-b22b1cec4935)

Chapter 16 (#u3b73da09-456f-5061-8dea-9bc05fcd6d0b)

Chapter 17 (#u395d37e1-ab1b-5350-86a3-cea125df1386)

Chapter 18 (#u9258f622-5253-5da3-b489-18d0b26e29a6)

Chapter 19 (#u6c72db41-82ac-5e63-9f4b-6a1e69bae6d4)

Chapter 20 (#u94218073-f971-5711-9d95-ac5a3bbe315f)

Chapter 21 (#uee110bd2-c154-501c-a13d-41b8565e6d19)

Chapter 22 (#u48efdc52-c320-59ef-a4da-12df055a2376)

Chapter 23 (#u4255ffdd-f042-5ef7-918b-0603cd7f83ad)

Chapter 24 (#u352033ff-c175-500b-8914-85182c37699d)

LOVING (#u166fc812-6076-5687-a588-df867dad79d9)

Chapter 1 (#ufa23aedd-60eb-50e1-87b7-8e332ce90551)

Chapter 2 (#u4b7e4ebb-14a6-59f9-bdcc-8cce5b670528)

Chapter 3 (#u487d5d01-b44b-5417-bc5d-d1bff7524eac)

Chapter 4 (#u7d0d7e3a-0c71-5267-890a-3f733aec7bfc)

Chapter 5 (#uf0120b37-8111-54fa-8f4d-8043e14e3c5a)

Chapter 6 (#u0a6785bd-e003-53aa-85b1-d2a962906d4a)

Chapter 7 (#ubccc626d-c9ae-59ca-b3e4-f6ea28447385)

Chapter 8 (#u2e529c98-0c0b-5a99-a9c7-ea6d80492d65)

Chapter 9 (#u7bc5c78d-8ce6-5320-a2ef-bc70110f4a89)

Chapter 10 (#ucce67329-d15d-5c5b-83ad-628e47530d36)

Chapter 11 (#u2f95f709-5282-59a4-9160-0109d29c8ab0)

Chapter 12 (#u9d5bb26f-a316-5f1a-b428-ebc922d06bb0)

Chapter 13 (#uabe77f20-3c6b-5ac7-a650-5cfdcffd5e50)

Chapter 14 (#u4cb391d2-f1a2-5579-95cd-ed59e46758cb)

Chapter 15 (#ucebe67fe-c24c-51e8-b420-b32874a08857)

Chapter 16 (#u27c6ceab-356d-5f95-9a50-be3a4651ee64)

CODA (#u902ea364-fb4b-59f5-a276-9262f913b450)

Footnote (#u30f399b8-969e-5c23-b3ae-6223e53420c7)

Notes (#u360daa99-420d-54ea-97ab-fd5c447e9dfc)

Acknowledgements (#uaeb4b52f-53c8-5983-b639-e6b748dd6919)

Credits (#ud27bcc17-02f3-533c-aaba-210436f4df89)

By the Same Author (#uec01c0f2-9bd9-5a12-9d1b-aa6c9633b99c)

About the Publisher (#u7ac17092-024c-59e6-b50a-bb93e6888f3b)




PRELUDE (#ulink_c6329095-d7ec-5fbf-baf7-39d8a247aecd)


THIS IS A BOOK about the kinds of states that float somewhere between diagnosed madness and daily life. They are ordinary enough states and yet they are extraordinary. Without toppling us over into the register of specified mental illness, they can nonetheless hover close and scary. They are part of what make us individuals and not statistics, subjects for narrative, rather than objects for the sorts of studies that feed drug trials, corporations, advertising campaigns or state records. Humans are ample, often suffering beings. The machine model of cognition, of information processing, just isn’t adequate to our complexity.

I am the principal ‘case’ in what follows, though really only a woman whose husband has recently died. His death launches me on a journey. It’s not one that has an identifiable destination. Perhaps because of that the political and social atmosphere of the moment hover very close.

I have tried in the middle section of the book to investigate the ways in which our historical moment and the wider world could be understood as sharing a set of emotions with my own grieving state. Anger and loss are political, not simply personal feelings. They bleed into us collectively: the media and the social networks play their part. I have a hunch that the time we spend as and with ‘disembodied’ beings feeds into these dark feelings, too.

Sometimes they can be assuaged or at least counterbalanced by hope. Luckily that’s where I landed in the final part of this book.

I hope my children will forgive my exposure. I have tried to be circumspect. Their mother is a reliable enough person, but when it comes to writing, the writer steps in.




GRIEVING (#ulink_fec48466-38b1-59c6-bd30-82a97205e079)


What I’m talking about now is a very ancient part of human awareness. It may even be what defines the human – although it [was] largely forgotten in the second half of the twentieth century. The dead are not abandoned. They are kept near physically. They are a presence. What you think you’re looking at on that long road to the past is actually beside you where you stand.

JOHN BERGER




1 (#ulink_ea851c04-3ab6-512d-80d4-bf2dabf40bce)


THE SMALL TRANSLUCENT bottle of shampoo outlived him. It was the kind you take home from hotels in distant places. For over a year it had sat on the shower shelf where he had left it. I looked at it every day.

I couldn’t bring myself to move it or use it.

When I finally picked it up, it was caked and slightly clammy to the touch, like perspiring, not quite healthy skin. I put my glasses on to make out the indistinct print on the front of the curve. For the first time I could see that, next to the stylized palm tree, vanishing letters spelled out Memory of Senses.

I put the bottle back on the shelf. Quickly.

Though I had rid the house of bagsful of clothes, unopened packs of tobacco, wires that belonged to defunct machines, and some of the other random leavings of life, I somehow couldn’t chuck that tiny bottle.

Superstition.

We all know the dead inhabit select objects. Even when we might also believe that they’ve gone to meet their maker or joined the elements in a field or river, or their everlasting souls have travelled up to Heaven to be judged by a supreme court at which angels bear witness to their deeds, good and bad, and eleven months of purgatory await.

Superstition: from the Latin ‘over + stand’. A presence stands over us, one whom we fear or who might just bring us luck. Or perhaps, as in surveillance, that presence compounds security and fear. Cicero, that hoary old philosopher who, according to one of my school teachers, had intoned something about diseases of the mind being more common and more pernicious than those of the body, had considered the word to be a derivation of superstitiosi – literally those who are left over, the survivors or descendants. It is they who must perform the funeral rites for their dead. It is they who need superstition.

One of my superstitions as a performer of funeral rites seems to lie in a miniature bottle of shampoo, latterly found to bear the name Memory of Senses.

Had I unwittingly taken in that name well before noticing it? None of my senses had been behaving particularly well in the fourteen months, and rising, since he had died. My sight and hearing had all but abandoned the world. They were overrun, smothered by the assault from within. Maybe I had something in common with that other addled mourner, Hamlet, whose father’s untimely death alongside his mother’s way of grieving – curtailed too swiftly and sexually from his perspective as a son – sets up a fury in him that some term mad. He feels surveilled – by the state, by his father’s ghost, and most of all by his own watchful, overwrought self.




2 (#ulink_1a18297f-7a8e-59e6-8e18-8baaa65bc4f9)


DEATH HAD COME suddenly for John. It wasn’t expected. Not by any of us. Even though he was undergoing an extreme new treatment, the details of which I can’t seem to rehearse. Even though he had been in treatment for the first time just a little over two years before, then again in that last year. Twice. We had carried on laughing and arguing and walking and watching too many thrillers on the telly, and life didn’t feel as if it were ebbing in any more definitive a way than usual. There was plenty of black humour and blunt speaking about mortality, but somehow these were jokes and quite unrelated to the real. On top of it all, he looked fit. Like himself.

So when the real came, it was utterly unexpected. A shock – like a wall toppling, knocking you down into rubble. Things smelt strange there, rot and ash. When you raised your head, skewed hallucinative vistas opened.

Part of the shock resided in the sheer corporeality of death. Nothing virtual there. The body turned to unresponding stone, massive, unforgiving, as it lay there on the raised bed in the intensive care unit. That unmoving body was more intractable than mere absence. It was stubbornly indomitable. It couldn’t be wooed, or bargained with, or budged. Certainly not by me. Not over months of remembering. It was just there. A blunt fact. Somehow it was also a reprimand: how had we let him die?

We tend to think of dead bodies as abject in their lifelessness. I should have felt sorrow and pity. I had earlier while he was still breathing, but now – perhaps it was fear, or panic, or guilt, or all of them at once – his sheer stony immovability carried a visceral threat. Was it the latent violence of so much shiny steel and the high-tech tools that brought murder to my mind?

The evening before, I had had a loud panicking exchange with a bullying emergency-room doctor, who wanted to operate instantly: he just wouldn’t listen when I said anyone from the cancer clinic would tell him that, given John’s non-existent immune system, he couldn’t be operated on. I was quietened by another doctor, and in the end, when the detail on John’s file was read, no operation took place.

Had I been wrong? Was I complicit in the death? And did that mean, in the too many interpretations that accompany death, just as they accompany love, that I somehow wanted it?

He had lain there for a whole night before turning into stone. A night that stretched into infinity and gave way too soon, while the machines around him blipped and danced, with waves and reels of shining numbers. He still inhabited his body. He might not have been conscious, but we felt he was holding on beneath the closed eyes. Surely they would open again. His face wore a peaceful, benign expression, a counter-statement to the noise around him in that machine-crowded space.

When the children and their partners arrived, we all felt he could sense us, hear us. We stroked his forehead and, clustered round the bed, sang his favourites – Bob Dylan, Leonard Cohen, the Beatles, campfire songs. As if he were the fire. We talked to him one by one, too. I don’t know what I said. I know there were tears – from the boys in particular. They were men returned to childhood by the death of a father, for one, a mentor, for the other. We willed him awake and simultaneously wanted to ease whatever passage there might be, if there was to be one. We hugged each other and him. No one quite knew who was holding whom up.

Around eight in the morning, the nurses had their rota shift and urged us all out for breakfast. We went obediently, sipped cappuccinos or double espressos with the office crowd at a Tottenham Court Road café. We talked inconsequentially. Or maybe it wasn’t inconsequential. I don’t really know.

We got back to the hospital in no time at all. But the room was uncannily quiet. The dancing screens had gone dark. A nurse I didn’t recognize addressed me with a look that needed no words. He had used the opportunity. While we weren’t looking, he had slipped away, like a dying animal seeking the shelter of the woods. Or perhaps they had just unplugged the machines that were functioning as his kidneys and other organs. Switched off the life-support. No life can be lived without support.

Now there was corporeality alone. A cooling body inelastic to the touch. Stony smooth. Both smaller and bigger than life, and accruing a spectral charge the longer I looked at it and held our daughter – though she might well have been holding me.

After that, time imploded. It was impossible to mark the sequence of days, of sleep and waking. It wasn’t that, like W. H. Auden, I called out for the clocks to stop. They did so of their own volition. They stopped keeping time, moving the minutes and the hours, the days and eventually the months. Without their structure to cling to – a set of moorings so internalized we forget their existence – everything was cast adrift. There was no more continuity in my life, or rather in my self.







3 (#ulink_350db5e9-7a98-5e93-85d3-f75c2dcac7d2)


MY FATHER HAD DIED in the same University College Hospital thirty-four years and three days before. I say ‘the same’, though in fact the old Victorian red-brick hospital no longer houses wards. The morgue on the lower-ground floor where I went to see my dad is now a lecture theatre.

Death had come for my father in the dank November when he entered his sixty-eighth year, old to me back then, though only two years older than my partner of thirty-two years, who seemed far too young to follow him.

I push away the image of my father at the last, cold and small in the great vaulted chamber that, in my memory, dwarfs everything inside it, though the figures – the prostrate one of my father, my mother bent over him – glow as if someone had turned a stage spotlight on them.

My mother is talking. She is whispering to my father, wrapping him in endearments, speaking Polish and Yiddish and French, though not English. I don’t know why she is talking to him, since to us, her nearest family, it seemed he hadn’t heard her for years and certainly can’t now. Anyhow, I tell myself, she didn’t love him – at least, not any more. They were always battling. She’s not crying, I can see that. Where are her tears? Her keening? Her visible sorrow? Her words are empty and have no resonance.

I gaze at my father and know that just the evening before he had pleaded with me to get him out of there, out of the hospital. It was me, his daughter, he had asked – though in the delirium that took him back to the terror of the war years, I was his sister. He hadn’t asked my mother: in his hallucination she was off cavorting with the SS guards.

Without realizing it, and because I probably preferred it that way, I took on the mantle of my father’s wayward emotions. I didn’t yet understand that the fragility that accompanies extreme illness, with the inevitable sense of diminishment it puts into play, often induces persecutory fear. Nearest to him, my mother had appeared complicit in his illness, so for him I was the loyal one, she the traitor.

That’s why there are no tears in her wide blue eyes, I told myself, back then.

Through the lens of time, I recognize this as a daughter’s narrative, one that comes with a propelling mythological force and is often replicated in ordinary families. The father-daughter bond is strong. Even where there’s paternal jealousy of the line of suitors, the bond has none of the murderous or competitive charge of that between fathers and sons. Mothers are far more difficult for their daughters to come to inner terms with.

Athena, goddess of wisdom, never needed a mother at all and leaped fully formed from her father Zeus’s brow. In Euripides’ play, Electra urges her brother Orestes to murder their mother, Clytemnestra. She helps him push the sword down her throat, thereby avenging their mother’s murder of their father, who had himself brutally sacrificed their sister – a fact Electra chooses to forget, at least until the deed is done. Antigone, at the end, leads her blind, ailing father Oedipus to Colonus. Freud, who reinvigorated the Oedipus story for modern times, called his own daughter, Anna, his Antigone. She became his voice and companion in older age, never betraying him with another man, often deprecating her mother, not only where intellectual matters were concerned.

We grow into our families and our myths simultaneously, the latter often enough shaped by the former, but the shaping also happens the other way round.

The mother-daughter bond is both trickier and stickier than the paternal one: daughters love their mothers but they need to leave them as far behind as Persephone did Demeter, descending even to Hell, to wriggle or leap somehow into independence and sexual awakening.

In adolescence, and often far beyond, it is imperative not to become the clone of that irritating, delimiting figure. The mother’s ageing body – in Elena Ferrante’s resonant Neapolitan Quartet, Lena’s mother even has a telling limp – needs to be shed like a constricting skin and certainly barred from any associations with sex, even with Daddy. Yet we’re glued to our mothers with that formative, largely wordless bond, which is a set of embodied gestures and rarely visible habits. She keeps coming back, smiling through our lips, lifting a hand to our hair, chiding the child we no longer are, but who is now another.

Back then, when my father died, I distrusted my mother. I was suspicious: she had never been able to give me a full medical history of my dad’s ills (or hers, for that matter). I couldn’t bear the thought that she harassed him for smoking. I would point out that she was killing him by forbidding him his killing cigarettes, so that he had secretly to wander the streets in search of them, losing his bearings in the process.

The daughter I then was treated her mother none too well. I couldn’t fully embrace her. I questioned her judgement. I questioned the reality of her love for her husband of a lifetime. How was it that she could smile at a passing attendant, even while my father lay dead in front of her? Indeed, I colluded with my dying and delirious father’s view of her: as we stood over him in the morgue, both terrified by the inert body between us, one of my few thoughts – or, rather, fantasies – was that perhaps if I had led him out of the hospital the previous evening, he would still be alive. Some part of me believed or wanted to believe there were hidden truths in his diabetic delirium.

After the visit to the morgue, I took my mother home. Once my brother had flown in, I left her in his hands. I convinced myself she preferred them. After the funeral, just a few days later, I went off to make love to a man I barely knew – as if enlaced bodies could save us from death’s inertness.

Am I wiser, now that I have grown children of my own, about mothers and daughters, about the tug of unknown forces that lurches us into word or act or simply overwhelms and undoes us?

Perhaps. Perhaps not. Whatever the case, my children will inevitably see my blind spots and limitations. I know this, just as I know that I treasure them and they hold me dear. But knowing, though it helps, often can’t save you from feeling, and the contradiction between the two, and everything it brings in train, can create a condition akin to madness.

I suspect we all experience it, just as we are all thrown into disarray by that other universal experience: death.




4 (#ulink_70bf0723-2178-571d-83b4-08d1dfa8f7c4)


THIS IS NOT A ROMANTIC TALE. I would have liked it to be a story of adoring and honouring and tears of sadness over the great loss of a fine man. It is that, too, but it’s not that alone. Death, like desire, tears you out of your recognizable self. It tears you apart. The eyes and arms, the recognition that used to hold you together as you, are no longer there. That you was all mixed up with the other. And both of those have disappeared. The I who speaks, like the I who tells this story, is no longer altogether reliable. Though now that I can begin to shape a sentence with that pronoun in it, I feel a little more like my old, if altered, self.

A day before he died, the morning after he had been moved into the fortress-like high-care hospital room from the cancer clinic next door, John uttered the words that resonated through me for months. Words can be performative.

We had been living for two weeks on the top floor of a building overlooking London’s busy Tottenham Court Road, a three-minute walk from the shiny new clinic where the daily treatments took place. This was the hospital hotel. Each room had a patient and a partner or carer in it. There was a lounge and a breakfast-dining area. From one point of view, it was a tourist’s delight – modern, clean, functional, central – but it was also a hellhole of illness and suffering. Everyone smiled, pretended cheer.

I was a star Pollyanna: though I’m a terrible and impatient nurse, I seem to be able to see the bright lining of most clouds, even thunderous ones. That night, I couldn’t. It might have occurred to me then, or perhaps it was later, that no one at the hospital – in all respects a wonderful and pioneering institution – ever talked of death. They talked only of chances. We were gamblers in a high-tech casino, playing against unknown odds – unknown not only because of the newness of the treatment but because each body, let alone each mind and set of emotions, is so uncooperatively individual.

That evening, we had watched a DVD of some stand-ups and laughed uproariously. In the middle of the night, John fell over on his way to the bathroom some three metres from the bed. I was meant to take him to the clinic if that happened. Falling. It was a signal we had been warned of. He was in neutropenia – a pretty word used to describe a scary state of no immunity in which infections can rampage. It was four days after Day Zero – the apocalyptic name given to the day when the harvested stem cells had gone back into his chemically cleaned system. But the cells hadn’t yet started their rebooting activity.

John flatly refused to leave the hotel room. He said he was fine and we would go in the morning. He was a man of considerable authority and stubbornness. I gave in without much argument. He did seem sort of fine now that he was in bed again. Rousing an emergency nurse might be worse than just sleeping. Or so I told myself.

In the clinic the following morning, we learned that an internal infection had set in. The nurse chided. A move into the multi-storey University College Hospital would follow imminently – or, rather, when a bed came free in the haematology ward with its sealed quarters. That only happened in the evening. With John in a wheelchair we were led along a subterranean passage through a block and a half of London streets. As the corridor twisted and turned, I wondered whether we were skirting the morgue where my father had lain.

Just like a thriller, I tried to joke.

Only as I write this does the body count my attempted joke may have conjured up for him come to me.

I waited until he was settled and asleep, then went to that now foreign place called home.

The next day was a Sunday. I drove to the hospital: it made it easier to bring food and fresh books. So focused was I on John getting better that I conveyed a week’s worth. When I got to his room, he was asleep. Staff were busy elsewhere. There was no one of whom I could ask questions.




5 (#ulink_ae912ffa-89d9-5fd1-92d5-445562538c58)


I AM SITTING on a plastic chair beside his bed. We are relatively high up, but the windows are murky and the light that comes in is grey and blemished. He is dozing, it seems peacefully. His lips are parched, and when he opens his eyes, I ask him if he’d like some water or some of the ice cream I’ve brought for him, thinking it might go down well. I’ve been inspired by the large number of lollies he was forced to eat while the harvested stem cells were introduced back into his blood with a drip.

He’s weak and I feed him – just a few mouthfuls. He dozes off again, and sometime in that doze, he murmurs, ‘I’m glad you’re here.’

I stroke his hand. Tears come to my eyes. In all these gruelling weeks he has never before said that to me.

A little later he wakes again. This time he is more troubled. When the nurse comes to check on him, he grunts and groans. She has nothing to say to my questions, so I leave her to him, making my way through the two sets of doors that barricade the room from invisible killers. I stretch my legs. I realize that the dark is setting in. I also realize I haven’t brought my specs with me and need them to drive in the dark. When I’m back with John, I explain I have to make a dash home. He tells me to take his pyjamas with me and wash them.

In the toilet the reek is overwhelming. I see a cascade of diarrhoea – in its midst sodden pyjama bottoms.

I come out and tell him there’s no point. I’ll bring fresh ones.

‘No, take them,’ he says. His eyes are two angry slits. ‘Take them.’ He raises his voice.

I know he loves these pyjamas above any others. They’re ancient, but his favourites.

I go back into the toilet, not allowing myself to breathe, and realize I simply can’t lift this squelch of body and other materials. I feel defiled. I will dissolve, liquefy into the stench. My body is turning to waste, mirroring his, yet I’m being called upon to be mother to this ageing toddler.

‘That’s all you’re good for,’ I hear him shouting. ‘Cleaning shit.’

That was the last sentence he uttered to me. It hit me with the force of a body blow and mired me. Engulfed.





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