Bed 12
ALISON MURDOCH has catalogued paintings for Sotheby’s, established emergency night shelters for homeless people, turned a London courthouse into a vibrant Buddhist centre, set up a catering service for refugees, and run workshops in Asia, Australasia, Central and North America, and Europe. She is a regular contributor to BBC Radio including: Good Morning Sunday, the Moral Maze, Women’s Hour, Prayer for the Day, Beyond Belief, and the Chris Evans Show. Her writing has been translated into four languages. She once smuggled herself into Tibet in the back of a lorry.
Alison Murdoch
BED 12
First published in 2017
by Hikari Press, London
www.hikaripress.co.uk
Distributed in the UK by
Combined Book Services Limited
Paddock Wood Distribution Centre
Paddock Wood
Tonbridge
Kent TN12 6UU
© Alison Murdoch 2017
ISBN: 978-0-9956478-0-0
eISBN: 978-0-9956478-1-7
Hikari Press gratefully acknowledges the financial support of
Arts Council England through Grants for the Arts.
British Library Cataloguing-in-Publication-Data.
A catalogue record of the book is available
from the British Library.
Designed in Albertina by Libanus Press
and printed in England by
Short Run Press
This book is dedicated to kindness: the kindness that Simon and I have received from our family, friends and spiritual teachers; the kindness of everyone at St Thomas’ Hospital; and the everyday kindnesses that sustain the lives of every being on this planet.
‘Whenever possible, be kind. It is always possible’
– The Dalai Lama
Acknowledgements
The names of the clinical staff at St Thomas’ Hospital have been changed to protect their privacy.
Any philosophical views expressed here are merely those of the author. For a more reliable introduction to Buddhist philosophy and psychology see The Art of Happiness: A Handbook for Living by the Dalai Lama and Howard Cutler, and A Fearless Heart: Why Compassion is the Key to Greater Wellbeing by Thupten Jinpa.
Contents
Foreword by Dr Phil Hammond
Week One: Emergency
1 The ambulance
2 Prelude
3 A&E
4 The city of St Thomas’
5 Medical unknowns
6 Family matters
Week Two: Strange New World
7 Mortality
8 The kingdom of the sick
9 The human pyramid
10 Blue curtains
11 A web of support
Week Three: Life and Death
12 Self-care
13 Pneumonia
14 Prayer surge
15 Desolation
16 Domestic affairs
17 Non-recreational drugs
Week Four: Vigil
18 Odysseus and Penelope
19 Battle of wills
20 Travelling companions
21 ¡Ultreia!
Week Five: Breakthrough
22 The second lunar month
23 Patience
24 Saints and heroes
25 The blanket
Week Six: Exit
26 Wedding anniversary
27 A room with a view
Aftermath
28 Mayhem
29 Loneliness
30 Gratitude
Epilogue by Simon Keyes
Afterword by Dr Ava Easton
Some Favourite Poems and Prayers From That Time
Chapter 16 of the Tao Te Ching by Lao Tzu, English version by Stephen Mitchell
Because You Love Me, Ady Endre
May our Friendship last Forever, Nicholas Gordon
from the Office of Compline
Watch, O Lord, with Those who Wake, Saint Augustine
We Cannot Measure How We Heal, John Bell and Graham Maule
Closed Path, Rabindranath Tagore
Message from Christine Hemp
The Germ, Ogden Nash
Foreword
When sudden illness strikes wise, compassionate people we can only hope they find the strength to write about it. Alison Murdoch’s poignant account of her husband’s life-threatening encephalitis is so much more than a patient’s story. It is a beautifully written reflection on the joy and fragility of life, and how any life under threat has to be lived in the moment. It is a contemplation of the inevitability of death, and why we should not shy away from accepting death while living each day as if it could be our last. Above all, it is a love letter to the NHS, and to the everyday acts of kindness that keep it afloat. ‘On the other side of the Atlantic, Simon’s illness probably would have bankrupted both ourselves and our families . . . At its best, the NHS is an organism that functions like the barometer of a healthy society – a gesture of collective wisdom and mutual generosity which enables us to support each other through the worst of times.’
We all fall into the river of illness eventually, and this book will be of particular comfort to anyone seeking the courage and inner strength to drag a loved one back to the bank. As one of Simon’s nurses observed: “I wish everyone could have an Alison.” In times of terrible stress, we learn most from those who’ve also been there. If you want to understand the power of compassion, why comas aren’t always peaceful, and how some people recover from a near death experience and are able to laugh about it afterwards, many of the answers are in this precious gem of a book.
Dr Phil Hammond,
NHS doctor, writer, broadcaster and comedian
The heavy wooden door is designed to open inwards.
“What am I doing here?!” I ask myself, in a sudden panic.
I weigh the key in my hand, and with great resistance put it in the lock.
It turns with a quiet click, and I slowly push the door open.
Inside is a vast room, its edges lost in gloom.
In the middle of the room is a dark and silent swimming pool.
The only way in is to dive.
The water is not as cold as I expected it to be.
I start to write.
WEEK ONE
EMERGENCY
CHAPTER 1
The ambulance
It is 2.30pm on a sunny Monday afternoon in July. I wouldn’t normally be at home, but I have an urgent document to write and there will be less distraction away from the office. I’ve been staring at a computer screen since the beginning of the day and decide to enjoy a few minutes of fresh air before making myself a late lunch. So I’m standing on our front path in South London when I suddenly look up to see my 58-year-old husband open the gate with the unsteadiness of a man in his mid-eighties. I gasp. I’ve never seen him look like that before. His eyes are half-closed, his skin pale and his movements painfully slow, but I can’t pinpoint why he is so dramatically changed. It’s just an immediate wordless knowledge that something is dreadfully wrong.
I run to open the door, and ease him onto the sofa. “What’s happened?!” He is drawing short strange breaths and can only manage a few words. “Fell ill in Winchester … came back early”. “Did you take a taxi from the station?” “No”. “Have you had anything to drink?” “Yes”. “Have you had anything to eat?” “No.” I pull off his shoes and leave him there to rest, returning to the kitchen to prepare my lunch. I’m trying to keep anxiety at arm’s length while I collect my thoughts. Within less than a minute it’s clear that chopping salad is a ridiculous thing to be doing and that I need to get Simon into bed. So I cajole him up our two flights of stairs, standing behind him on each step in case he slips.
I only realise how serious things are when we reach the bedroom. Simon fa
lls rigid and wordless across the bed, from left to right. When I try to undo his belt buckle, he screams. “You have to tell me what is going on and where the pain is!” I respond. Silence. I know I’m married to a bit of a drama queen, but this is extreme. I repeat, very slowly and loudly: “Unless you speak to me I’m going to call an ambulance.” Silence. It dawns on me that this is now what I am going to do. To call an ambulance for my husband feels like crossing a line, breaking a taboo.
I dash downstairs for the cordless phone, then back to the bedroom. I get through immediately, noticing how strange my voice sounds, and forcing patience at all the banal questions. The operator tells me that an ambulance is on its way, to collect together any medicines that Simon uses, and to get household pets out of the way. I look down at Simon. His cat Zampano has insinuated himself into the crook of his master’s inert arm, and my cat Mina is pacing fretfully around his feet. This is a family affair, and they aren’t going anywhere.
A few minutes later I hear an ambulance siren in the distance and realise with a start that this time it is for us. Our bedroom is suddenly full of uniforms and medical equipment. When Simon is asked for our address he answers with a stream of delirious nonsense. OK, so this really is serious. Putting his arms around their shoulders, the ambulance team half-carry him downstairs without even bothering to put his shoes on. Simon has aged well—his mane of curly hair now pepper-grey, his features stronger than before. In his characteristic black jeans and an open-necked white linen shirt he looks like a wounded Byronic hero. Behind them, I move quickly to scoop up the kinds of sensible items that might be needed for an overnight stay in hospital: dressing gown, reading glasses and book for Simon, and laptop and working papers for me, so that my busy schedule won’t be unduly disrupted.
The inside of the ambulance is a self-sufficient and scaled-down version of a hospital workstation. We are stationary on the street outside our house, yet strangely isolated from the world outside. More tests are done, in a frustratingly measured and methodical way. The obvious diagnosis is a stroke but Simon’s blood pressure is fine. After what seems like a month we’re on our way. I phone the office quickly to explain that I will miss a late afternoon appointment, and ask the ambulance crew where we are going. St Thomas’. One of the best hospitals in the world—great! By now Simon is almost unconscious. I wonder why there is no siren and fret at how slowly the traffic lights change.
When we arrive at the hospital Simon is lifted into a clunky type of wheelchair that I’ve never seen before and we hurry into the Accident & Emergency department. He is asked to clench his hands. He clearly thinks he is doing this but nothing happens. The gravity of what is unfolding begins to sink in.
CHAPTER 2
Prelude
Where do ideas come from? Years ago I had a foreboding that one day Simon would go to work in the morning and never come back. Ever since, I’ve tried to be there on the doorstep to watch him head off on his bicycle and to make a wish and a prayer for his safe return.
We are both tired when the emergency happens, but that’s nothing unusual. We don’t have children but we each work at least six days a week running small charities, with the accompanying pressures of raising funds, supporting over-worked staff and juggling countless out-of-hours commitments. However, we’re going away the following Saturday with wonderful plans for the whole of August: hosting my mother-in-law’s ninetieth birthday in Devon, then flying to Galicia for a friend’s wedding, followed by a lazy ten-day meander with a tent along the northern coast of Spain. From Bilbao Simon will return to work and I’ll continue on to a programme of teachings by the Dalai Lama in Toulouse, followed by the first international conference organised by the charity that I work for. It’s a plan that brings together all the ingredients we love—family, friends and celebration; spontaneity and fresh air; outer and inner adventure.
I’ve noticed before that whenever I’m about to go away life speeds up and becomes a race to get everything done, right up to the huge sigh of relief when I actually board the bus, car, train or plane. For me, the week ahead felt challenging but do-able, plotted out to the nth degree and under the strict control of lists and priorities. Simon would typically tackle his tasks in a different way. Definitely no lists, just a chaotic whole-hearted engagement with all the people and issues that come his way and a willingness to work late into the evening to do the rest.
It isn’t unknown for us to stay up all night before a holiday to clear our emails. Yet whenever someone tells me that we work too hard, I respond that we relax hard as well. Our first honeymoon was to Hungary, which for a host of unfathomable reasons is Simon’s favourite country. I found it such hard going that the following year I organised what became known as ‘the revenge honeymoon’ to my own favourite country, Tibet. “My heart yearns for a simple English country church,” said Simon ungratefully, as we exited from yet another fantastically-decorated temple in which he’d watched his new wife pore over rows of statues with the distinctive smell of over-ripe butter. My mother later remarked that the fact we’d survived that trip together gave her some optimism that our marriage would also endure.
Before he met me Simon was in the habit of taking long-distance cycle trips—from Nice to Barcelona, from Bucharest to Budapest, and most memorably from Sofia to Istanbul. The last of those journeys had been interrupted by the loss of his bike, when thieves decided to saw down the tree to which it had been chained. Just before his fiftieth birthday, Simon was inspired by Satish Kumar’s book No Destination to make a longer journey, this time on foot. He saw this as the interval between Act 1 and Act 2 of his life, and since there was nowhere he particularly wanted to walk to, he decided to walk home to me and the cats. As a lover of Hungary, his plan was simply to fly to Budapest, follow the Danube north and then turn west at Krakow.
Simon’s solitary pilgrimage across some of the most historically rich landscapes of Northern Europe took three and a half months, and when we met up in Calais I hardly recognised this whippet-thin and introspective man wearing frayed and faded clothes, topped by a beard straight out of a wilderness movie. From my side, my initial admiration at the carefree romanticism of setting off without a map, sleeping rough in the woods and making a solitary crossing of the snow-bound Tatra mountains had turned to mild irritation at the hotel and opera bills that I was expected to pay as he walked his way across the Weimar Republic, paying homage at the shrines of his heroes Bach, Beethoven and Goethe.
This time, our departure on holiday was complicated by Simon having been ill the preceding weekend, with the kind of flu virus that often results from being a bit run down. On the Friday evening he’d organised the kind of romantic evening that we didn’t often have time for these days. The early stages of our relationship were full of riddles and clues about where and when to meet that could easily land me inappropriately dressed and ill-equipped at the wrong end of London or even of Europe. “Lunch in an interesting city, followed by a voyage to where the mountains meet the sea” coupled with a deliberately misleading “bring your grey watercolour paints” was all the advance information I received for a surprise summer holiday in Sardinia, reached via a flight to Genoa and an overnight ferry crossing. I was glad that I’d decided to pack my bathing costume, just in case.
The invitation that previous Friday had been relatively simple: “138 Kennington Park Road, 7pm.” I looked up the address online and found it to be the White Bear pub theatre not far from our house. Simon’s unpunctuality is so habitual and extreme that he’s jokingly known as The Late Mr Simon Keyes, but on this occasion when he turned up late and ordered a soft drink I could see he wasn’t feeling well. At the interval we decided to go home and get an early night. The next day he stayed in bed while I met my mother and niece for lunch, and on the Sunday he felt so much better that we went to a matinee at the National Theatre. We both remember this being a particularly sweet and special day, as if tinged with golden light. In the evening, he cleaned the bathroom while I mowed the lawn.
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On the Monday morning Simon had slept badly and was feeling off colour again. He didn’t have a temperature, just aches, pains and a headache. I sat down with him on the sofa. “Don’t go to work.” “I have to, there’s a meeting I can’t miss in Winchester.” “You won’t achieve anything feeling like this. Can you postpone it?” “No.” “Can someone else go instead?” “No.” With a sigh, I gave him a tall glass of fizzy vitamin C and a bowl of muesli with yoghurt and fresh fruit, both of which he left untouched. Half an hour later I watched him disappear round the corner on his bike, noticing a bit more of a wobble than usual.
CHAPTER 3
A&E
Things go rapidly downhill as soon as we arrive at A&E. When Simon is asked to stick out his tongue, as he had done for the ambulance staff less than an hour before, he can no longer do this. Without a hint of NHS delay he is wheeled straight into a cubicle where a huddle of white-coated doctors cluster around his trolley bed. I am pleasantly surprised to find that most of the time I am allowed to listen in. Every now and again I am asked to leave and the blue curtains are drawn around the cubicle to conceal what’s happening inside. These are the worst moments.
Afterwards, the doctors use euphemisms such as “agitated” and “combative”. Actually, it looks and feels like something out of The Exorcist. Simon is now completely delirious, writhing from side to side and pulling back in agony whenever someone touches him. When the medical team try to make him swallow an aspirin he spits it across the room. At one point it takes several uniformed men to hold him down and his screams echo down the corridors. When his blood pressure drops to 60 over 40, a beeper goes off and eight people rush around the bed and slam an oxygen mask on his face. I am blessed with an almost complete lack of medical knowledge, and only find out later how serious this could have been.