One dimension of our gratitude to the hospital and to the healthcare system that saved Simon’s life is that the whole experience has been completely free of charge. I can’t imagine how I would have coped with financial demands and decisions during that terrible first night in A&E, or have found the mental space and time to deal with insurance paperwork. I have friends in the USA who have taken years to pay off their debts from a routine operation, over and above their health insurance payments. On the other side of the Atlantic, Simon’s illness would probably have bankrupted both ourselves and our families.
Everything needed for his treatment and recovery has been offered. This includes not only the visible medical care, but also the invisible, such as the blood tests sent away to specialist hospitals. There were also all the practical details that supported my visits to the hospital, from the flowers that welcomed and cheered me up on the front reception desk to the clean and warm toilets in the public areas. 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.
“No one is as capable of gratitude as one who has emerged from the kingdom of night,” wrote Elie Wiesel. I have my moments of gratitude fatigue, but most of the time gratitude flows effortlessly through me like a river in full spate. When something so powerful has happened to you, gratitude seems to take up permanent residence in one corner of the mind, perhaps as a defence and counterpoint against the brooding darkness, and the possibility of its recurrence. It’s also the natural companion of our relief at a recovery so swift and complete that it has astounded even Simon’s cool-headed medical team.
Buddhism, like science, teaches that the seeds of change are hard-wired into everything in nature. It’s easy to deny such an inconvenient truth, especially when it applies to ourselves, so I also experience thankfulness for having been given a reality check that will accompany me through the rest of my life. On any day Simon could set off for work in the morning and come back half-dead. We part company after a drink in the pub (me on my bicycle, and him with Lola the spaniel) and five minutes later I wonder whether that ambulance weaving its way through the traffic is for him—or for any of our family and friends. The experiences we have shared make me acutely aware that we are fragile and transient creatures and that nothing material can be taken for granted.
There is a Tibetan Buddhist saying: “A day where you do not remember death is a day wasted”. Waking up in the morning and believing, with at least half my mind, that this might be my last day on earth is like spicing up a dull dish. Reminding myself that external sources of pleasure and satisfaction are unreliable and time-limited helps me to re-direct my attention to inner pleasures, such as spotting an opportunity to make someone else’s day a little bit easier or a little bit nicer. It’s amazing how much genuine and unassailable satisfaction this can bring—and as dust turns to dust and ashes to ashes, it’s all that will remain.
A year to the day after Simon fell ill we throw a party, both as a celebration and as a small gesture of gratitude to family and friends. Our social life has become so limited that many people haven’t even seen him since he came out of hospital. The preparations are appropriately chaotic—for example, I’m not sure that Simon’s invites are ever sent, and in the event no members of the family are able to join us. However we manage to gather together more than fifty guests for wine, food and live music in the beautiful and inspiring interior of St Ethelburga’s in the City of London.
I often have difficulty knowing what to say at parties, but tonight there’s no problem. For each person there is a thank-you: for a supportive email, an encouraging Facebook post, or a thoughtful gesture. I also enjoy the way that conversation is flowing between people from the different compartments of our lives, many of whom have never met each other before. I realise that it’s not just a party to mark Simon’s recovery but to celebrate how a community came together in a spirit of love and mutual support.
Simon has decided to make a short speech, and stands silhouetted against the stained glass window at the head of the nave, looking in better health than he ever did before. He holds nothing back, telling how even at his worst moments, pursued by demons in the darkest of places, he felt held in a web of love. “Perhaps this is what prayer is all about,” he says. It’s not your ordinary recovery speech, and the audience is mesmerised. “I’d like to thank all of you individually,” he says, “but that isn’t possible, so I’ve decided to thank just one person, on all our behalf.”
I’d noticed that when our guests arrived he’d asked each one to write their name on a piece of paper, and now the basket of folded papers is brought forward. Our friend Wallee shuts his eyes and selects one to give to Simon. Simon reads it. There is a long silence, and then in front of everyone he begins to weep. I step forward to put a supportive arm around his shoulders and I read the piece of paper myself. I never wrote my name or placed a paper in the basket but the name on this paper is mine. I step back again: he has to handle this on his own. Many of the guests weep with him as he eloquently expresses his gratitude to me and I experience an explosion of feeling inside that takes all words away.
Back home in bed, I share the Bishop’s observation that all the names in the basket could have been mine “because that’s what any sensible person would have written.” On the pillow beside me my husband pauses before he responds. “Actually, the Bishop is right. All the names were yours. I swapped the basket for another one which I’d prepared earlier.” My first reaction is deep shock. At the moment when my name was drawn our dearest friends felt the universe had spoken—what a betrayal of their trust! My second reaction is pure joy. My smart, playful, free-spirited husband is back with us, and on full form. I start laughing uncontrollably.
“Now that you’ve recovered, I can begin to recover,” I tell him. “From what?!” he asks.
Epilogue
Simon Keyes
January 22 2017
My last memory of the outside world is of sitting on a platform at Winchester Station having given what I thought was a careful briefing to my colleague. She says it was gobbledegook. How I got home I cannot recall – perhaps my memory had shut down by then or maybe pain or drugs erased it later. Still vivid though is the image of Alison and I the previous afternoon, dawdling with ice creams by the sunlit Thames after watching Ibsen’s The Emperor and the Galilean at the National Theatre. I remember that, I didn’t need to look it up.
The next physical sensation of which I was aware was an endlessly-repeating beeping sound, two different notes, the memory of which still fills me with dread. Then unfamiliar voices coming and going. A hammering on my neck. And a growing awareness of the beautiful presence of Alison, like a sun rising.
Between these two points I felt nothing. No pain, no movement, no world. But in my own private world of awareness I still existed. It was a terrible place. Here are two experiences that stay with me.
I am being pursued through a snowbound forest at night. My breath freezes in the air. I’m alone but I can sense a lurking presence – the only way I can describe it is like the crackling you hear beneath a high-tension power line – something inexplicably evil. Something dreadful has happened. I shout but I have no voice. I run into a house – a fire is burning but all the windows are open and there is snow on the floor. There’s a row of orange anoraks on the wall but there‘s no-one here. I know I have killed them. I am trying to run away from something terrible I have done and I am being followed. I’m desperately cold, terrified, totally alone. Abandoned.
I find myself in a white room, everything ordered and impeccably clean. I float in mid-air. One wall appears translucent and I’m aware of dim shadows behind it. I hear the voice of my friend Philip saying, “You are in hospital, you are very ill, you are safe”.
It is very hard to put these experiences into words. They read like dreams. No doubt there are psychological or, given tha
t my body was awash with drugs, pharmacological explanations. But this was my reality. I can’t say how long these experiences lasted, only that these places still exist somewhere in my mind. When I returned to consciousness I felt I had been away for a long time.
By Alison’s account I returned to some degree of functionality in ICU but my memory of it is scrambled. Only when I moved to a ward upstairs did I begin to establish some bearings. In ICU I remember standing up and people looking at me. I remember being in a wheelchair talking about cycling with a doctor. I remember tubes being pulled out of my nose. I recall the taste of marmalade. I think I went to the cinema at some point. When I returned some months later to have a look at the ICU ward it was completely unfamiliar. I couldn’t work out where Bed 12 was and I didn’t recognise any of the staff.
Everyone seemed delighted by my improving condition but I found the first few days very difficult. I couldn’t walk or hold my balance. My right hand didn’t work and something had happened to my hearing.
Mentally I was all at sea. During the day when Alison was with me most of the time I felt safe. She told me what had happened and gradually I was able to piece together the story of this book. Between conversations I would sit contentedly watching boats on the Thames below. But once I was alone my mind ran riot, looping obsessively over random things. I couldn’t stop rehearsing a list of the films of Béla Tárr. My recall of detail was extraordinary – I found I could name the cinematographers on Tárr’s films something I didn’t realise I even knew. It was as if my memory had been reshuffled and long-hidden material suddenly exposed.
My emotions were alarmingly volatile. When two kindly volunteers came to visit all I could do was sob. They didn’t return. I found I couldn’t read. I could understand the words separately but couldn’t connect them in my mind. One morning a priest arrived and invited me to read from the Bible. Laboriously I read each word as if there were a full stop after each one. They made no sense. Trying to watch a film was the same – each shot was disconnected from the next.
The worst thing was not being able to sleep. The room was very cold at night making the snowbound forest seem very close. My mind was a riot of violent thoughts and the terrifying sense of guilt I had experienced in the forest swept over me again. One night I gazed at a blue neon strip on the façade of a hotel opposite the hospital and experiencing such a depth of loneliness that I wanted to die. In the morning a nurse asked how I was but I couldn’t find the words to explain and just cried. I found it hard to understand why no-one asked me about what was happening in my mind since for me this was a far more distressing problem than my physical condition.
To add to my confusion I was told that I was suffering from confabulation – false memories. I am sure, for instance, that one night I had a fall and another night had a conversation with a consultant, neither of which apparently happened. Those night terrors still linger in my mind, though, and for me they remain real.
I dreaded nightfall. And then on the fourth night after leaving ICU I finally fell into a deep sleep and found myself in a glorious dream. I had arrived at a beautiful old house on top of a hill, with an ancient orchard looking out over a landscape of trees and lakes and islands. Our two cats were stretched out in the sun. I had a small hovercraft and could flit around the countryside at will. I awoke with a feeling of radiance and knew that everything was going to be all right. From that moment everything was transformed and I experienced an euphoric feeling of life flowing back into my body which lasted many weeks.
I had arrived upstairs on a Thursday and, other than a quick check by a young doctor, I didn’t receive any medical attention until the Monday. If I had felt abandoned since leaving ICU now the National Health Service delivered magnificently. Teams of doctors came to look at me and ordered batteries of tests – for brain, legs, ears, and hands. I got to see a top audiology consultant straight away. Various species of therapists waited on me, helping me stand up, testing my hands with playdough, fitting me with crutches (adjusting the slotted aluminium poles was quaintly called “cutting a stick”). I had fun falling off large balls onto the padded floor of a gym provided just for people like me. A man even came to cut my toenails and told me jokes which I enjoyed no end. A nurse offered to help me take my first shower for six weeks and when she didn’t show up I managed to do it on my own. Clutching a bar of soap was beyond me and I fell over, joyfully wallowing around the shower trough in a fit of giggles.
One day a researcher called in and asked if I would consent to being part of a study she was conducting. I agreed and am very pleased I did so. Her tests, which included some curious magnetic shocks, mostly involved walking between orange cones laid out in a quiet hospital corridor. This provided me with a physical and mental challenge and after stumbling round the course for a few days I managed to “walk” half a kilometre without crutches. I felt Olympian.
After the dream I found I was able to begin to read again. There was a mountain of cards which I studied one by one over several days. I discovered that a Facebook page had been set up in my name. The knowledge that hundreds of people knew about my condition and had, in their own way, prayed for me was difficult to take in and I found I had to read the posts in small chunks to avoid being swamped with emotion. I was delighted to hear that some Buddhists in Singapore, whom I had never met, had bought live fish in a market and released them back into the sea in my honour. If my “forest” experience had been one of terrified abandonment, then the knowledge that I had not been spiritually alone was immensely comforting. I believe that all these good wishes may, in some mysterious way, have kept me alive.
There was one moment of real disappointment. Alison took me down to hear the hospital’s resident pianist play. He asked what I would like to hear and I suggested the Chopin Ballade in A-flat, a favourite. He nodded and began to play. But all I could hear was an unrecognisable jumble of sound. It was a shock to realise that music, one of my great loves, might be lost to me in future. The audiologist speculated that the drugs which kept me alive may have caused permanent damage to the inner ear.
In all this I experienced no pain, just weakness. There was a regular flow of experts to my bedside who kept me busy with tests and exercises. Friends visited, and I enjoyed the camaraderie of other patients on the ward. I learned to eat again and when my appetite returned I found the taste of food intensely enjoyable. My sense of smell was particularly acute for several days. I realised I wouldn’t be returning to work for some time and managed to dictate a list of outstanding tasks. More than anything, being with Alison was blissful, deepened by a growing awe as I gradually realised what she had done for me.
I was allowed to go home when I could demonstrate that I had mastered the art of climbing stairs with crutches. Being in my own bed, attended by two purring cats, was the safest place in the world. During the fine autumn days, Alison would take me to Kennington Park and leave me in the lovely café there. I would happily sit on the deck outside for several hours listening to the wind in the trees and watching the world go by, occasionally joined by friends.
Looking back, I can see that it was difficult for me to understand that I was still ill. I had no sense of the crisis I had been through and my euphoric mood masked my physical weakness and mental vulnerability. I was very difficult to live with. I kept losing things and leaving tasks incomplete. I was impulsive and could fly into fits of temper at the least provocation. One day I startled Alison by throwing a pile of CDs across the room, something I like to think was quite out of character. I was very slow to realise how tired and bruised Alison was after weeks of intense stress and putting the rest of her life on hold. Emotional intelligence was something I had to relearn. After a couple of weeks I was well enough to be left alone and she returned to work. I sensed in her a mixture of relief and regret.
Six months after the illness struck, I returned to work for one day a week accompanied by my occupational therapist who explained to my team what had happened to me. I soon demonstrated
that I could perform as well as before and my interest in the work was rekindled. Somehow, though, I never really recovered my poise. Perhaps the organisation too had been bruised and got used to managing without me. I resigned and we left London to live in the countryside with Lola the spaniel. A few months later I was offered a professorship at a local university which has given me a wonderfully rewarding new career. I try to remember to thank Alison every day for saving my life.
Many people have described my recovery as “miraculous”. Divine intervention? Who knows? There are certainly some strange things about it. I had been very severely ill and yet woke up relatively unscathed. Another encephalitis patient in St Thomas’ at the same time as me who was unconscious for a much shorter time had to learn to speak again. The Encephalitis Society says starkly that “some loss of brain function is … a probable outcome of encephalitis”. My long-term symptoms – concentration lapses, absent-mindedness, emotional volatility – are barely distinguishable from the general decline of middle age. The “euphoria” may have subsided but it has left in its place a new sense of joy in being alive. The way almost one hundred medical and care staff collaborated in saving my life and returning me to health is certainly a miracle of medical organisation and skill. The scale and warmth of the support Alison and I received from my family and friends, from colleagues far and wide, and even from strangers (the fish!) is extraordinary. I have seen so much of the essential goodness of people. All this is miraculous to me.
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