Bed 12 Read online

  The good news is that the third and most detailed brain scan, the MRI, shows no sign of damage. This means that Simon probably hasn’t had a stroke. I find out that the reason we’d been so desperately trying to give him aspirin that first evening, by any orifice we could, was due to this possibility. As I punch the air and do a little dance I am gently reminded by a concerned friend that this kind of medicine is an art rather than a science, and best not to rely on any findings as yet. But no brain damage is surely something to celebrate!

  Another possibility is that Simon has developed some form of epilepsy. When I arrive on the ward in the early morning of the third day I am greeted by the news that he’s had a seizure during the night. Due to my limited medical knowledge this doesn’t bother me too much, and when he has a second seizure later that morning the 30–40 seconds of twitching seem like a non-event after the much more dramatic events of the first evening. However the sombre faces of the medical team suggest that the implications are far more serious than I can understand.

  For the non-medical person a lumbar puncture might sound like quite a dangerous procedure, but in ICU they take place on a regular basis as part of the on-going investigations. An attempt is also made to measure Simon’s brain activity through the laborious process of pasting a hundred or so electrodes all over his head. This is carried out by two specialist nurses using a portable unit that looks like a combination of high tech and hairdressing equipment, with wires coming out at all angles. The problem is that in order to measure brain activity the sedative dose has to be reduced, which results in Simon constantly tossing from side to side and knocking all the electrodes off his head again. As his nearest and dearest I yearn to demonstrate a special ability to keep him calm, but am no more successful than anyone else.

  After a few busy days of tests it becomes apparent that the medical detectives have analysed all the clues, followed up every possible lead, and are basically stuck. “Encephalitis”, an inflammation of the brain, is the closest description they can come up with, with an infection as the most likely cause. It is a completely new word for me.

  Since Simon’s tests demonstrate that the encephalitis isn’t bacterial, then it is most likely to be viral. As we know from catching flu there are many different viruses and very few treatments. My brother comments that he’s relieved to hear that herpes encephalitis has been eliminated, because although it’s one of the few identifiable and treatable viruses it is very destructive to brain tissue—basically, “it rots the brain.” Some kind of reassurance! I immediately look over at my inert husband in alarm. The reality remains that with suspected viral encephalitis as the ‘last man standing’ diagnosis, nobody has any real idea of what is going on in Simon’s head, whether he will recover, and if so, how long that will take.

  CHAPTER 6

  Family matters

  “Your clerical friends have arrived!” announces the staff nurse, struggling to hide her disapproval. Two Anglican priests, the headmaster of a cathedral school (Simon’s brother) and a lay reader (his sister-in-law) have arrived to carry out the ancient Christian sacrament of anointing someone who is very ill—and very possibly dying—with blessed oil. As a general rule no more than two visitors are allowed at the bedside at any given time but we have been given special permission for this.

  Although anointing is a Christian rather than a Buddhist sacrament, I am happy to follow local custom. Over the years I have shifted from being a twenty-first century sceptic to someone with a deep respect for prayer and ritual, especially when it is rooted in a lineage that stretches back for generations. I also subscribe to the view that different religions are simply different paths up the same mountain. It feels like an insult to intelligence and common sense that the universe could ever be otherwise.

  Not only Simon’s father but both his grandfathers, his cousins and probably countless other relations who I’ve never heard about have been Anglican priests. Simon was the eldest son who bucked the family tradition. Ironically, after decades of working with homeless and mentally ill people, he now runs a charity located within an ancient City of London church and is regularly called to speak from the pulpit of other churches and cathedrals around the UK. When our wedding photos arrived, his chosen outfit of black Nehru suit and collarless white shirt caused quite a stir among some of our friends. “Wow, the priest is good-looking!”

  We have many friends in the Anglican priesthood but when it comes to ritual one particular cleric immediately comes to mind. Rev. Flora has curly red hair and is an incongruous mixture of High Church vicar and Territorial Army chaplain. Simon once asked her how she puts up with being patronised by the elderly men who she often encounters in her work for the Church of England. “I quietly remind myself that I know forty ways of breaking their necks,” she replied.

  Flora arrives at the ward dapper and prompt, a dog collar complemented by her customary Chanel-style suit and pearls. She is accompanied by her husband Jonathan, who is a senior army chaplain (the equivalent of a general, I’ve been told). I notice that his shoes, as always, are impossibly shiny. Flora’s leather briefcase is full of religious accoutrements, including some special oil from Lambeth Palace just across the road, and my sister-in-law Mary Anne (who is a Christian lay reader) is asked to hold a small cross. I am pleasantly surprised by the profundity of the words, and by Flora’s thoughtfulness in incorporating substantial periods of silence so that we can each pray in the way that works best for us. Flora later tells me that she felt honoured to be asked.

  Simon’s father was not only a priest but also a musician, so this is the other family ritual to attend to. Fortunately we have a particularly sympathetic nurse on duty who happens to have written her diploma thesis on the therapeutic effects of music on artificially ventilated patients. Tim produces a CD player from his car, and—aware of Simon’s allergy to staples such as Mozart and Pachelbel—starts off with Vaughan Williams’ Sea Symphony. I am surprised by the vehemence of my reaction. “That’s far too vigorous!” I cry, in defence of the inanimate body on the bed. After a brief re-negotiation, we open with the soul-stirring lament of some vintage Portuguese fado, followed by the cheerfulness of a jazz version of The Old Rugged Cross performed by our favourite Australian musician James Morrison, followed by the serenity of Bach’s St John Passion. All bases covered.

  There doesn’t seem to be anything more that we can do for Simon at this moment. This may explain why the family turns its attention to my welfare instead. They want evidence that I can switch off and look after myself, so I decide that I will give them exactly that. I book tickets for everyone at the midday screening of the final Harry Potter film in 3D at the BFI Imax, just down the road from the hospital. It proves to be a wonderful experience. For a moment during the screening I observe a flicker of guilt pass through my mind: to be having such fun while my beloved husband lies sedated and gravely ill in his hospital bed. However as distractions go, it works a treat.

  On the short walk back from the cinema to the hospital we chance upon a festival of world food in the courtyard behind the Royal Festival Hall, and a pink double-decker bus wonderfully decorated with vintage bric-a-brac. Tim takes a photo of me lying on the back seat clasping a huge furry unicorn, which pretty much represents the strange worlds that I’ve found myself in this past week.

  Each slow moving high-definition day and evening is a weird mix of voluble family life taking place on centre stage, with the demon of anxiety and despair lurking in the wings. Simon’s brother Tim and my brother David have never had the opportunity to spend much time together, and one of the silver linings to this cloud is to see their friendship deepen as they walk and talk along the Thames. We’re also endlessly sharing family stories and digging out photos of Simon that I’ve never seen before. One evening my sister-in-law hunts through our fridge and kitchen cupboards and cooks up a storm with all the food she finds. I vaguely hope that she didn’t notice how long it is since I gave the place a decent clean. In the evening, bottles of w
ine appear on the table and my brother produces an excellent bottle of port. It’s like Christmas, except that Simon may be on the verge of dying.

  Back in ICU, my brother David asks if he can take some photos of Simon lying unconscious in his bed before he returns home to Bristol. The duty nurse agrees, although it turns out later that it’s because he understood David to be a member of the hospital staff. It’s a rule that even family members aren’t allowed to take photos of patients without their consent. When the staff nurse finds out that he’s only a visitor she gets really upset, especially when she realises that David has also taken photos of the corridor and waiting area, and she demands that he erase the photos from his camera. David responds that this is a ridiculous example of political correctness, one worth sending to his favourite magazine, Private Eye. What he fails to mention is that he’s taking the photos out of kindness in case they turn out to be my last memento of my husband.

  After my brother’s departure, the staff nurse shares her concerns all over again, so I ask Tim to make an apology on behalf of the family, in his best headmasterly voice. The next day, the consultant asks if she can have a word. “Of course!” we respond eagerly. “It’s about those photos…” So much for all the effort that we’ve been making to gain the trust of the staff and to demonstrate how appreciative we are. Family!!!

  By Sunday afternoon the initial flurry of family visits has exhausted itself. Tim is the last person remaining, and after five days in London he now has to return to work. I feel sad and lonely at seeing him go. At times I’ve been screaming inwardly for some personal space—it’s a week into this ordeal and I still haven’t opened a book. On the other hand, none of our family live nearby and I’m scared at the prospect of being on my own, especially should the situation go downhill.

  WEEK TWO

  STRANGE NEW WORLD

  CHAPTER 7

  Mortality

  As we move into Week Two, I try to cheer myself up with the thought that Simon hasn’t suffered a stroke or a brain tumour. He may be unconscious but he’s still alive, and probably with better prospects than the thousands of people starving in the Horn of Africa. Death is all around us, not just in ICU. The newspaper headlines tell me that in Norway a killer has just gunned down 69 young people at a summer camp. In a Sunday magazine I read the story of a woman who has died in a freak wave on exactly the same beach in Mexico where Simon and I swam together the year before. Some of the time these reflections on the precariousness of the human condition help me to maintain a sense of perspective and to hold anxiety at bay. At other times they don’t help at all.

  On this particular morning, I can’t get past the fact that things are not going well for Simon or me. Lying in bed, I identify three main anxieties:

  a) I suddenly get a call saying that Simon has had a dramatic downturn. In response, I remind myself that he could hardly be better monitored, and he’s on every machine and drug that modern medicine can provide.

  b) Simon gets a secondary infection. My brother the medical insider tells me that the chances are 50/50 that he’ll get a lung infection in ICU, going up to 75% if he’s on a ventilator for a second week.

  c) Simon “may not be the same person when he wakes up.” This is what the consultants keep warning me. Well, according to Buddhism, the whole universe is in a constant state of flux so he can’t and won’t be the same! But I’d rather not have any major changes. We all like and love him as he is (or was).

  The object of my concern—or rather, the entire focus of my current existence—is now lying in Bed 12, on the right as you enter the main drag of ICU 1. As soon as the possibility of a bacterial infection had been excluded Simon lost the side room that we’d initially enjoyed and which had provided welcome privacy for my morning meditation practice and for events such as the anointing.

  We are fortunate that Bed 12 is in a corner, which feels comforting, and that it has a west-facing window, although the events inside ICU tend to be so compelling that I’ve never seen anyone actually look out of a window. In any case, the drips and monitors around the bed obscure all but the occasional shaft of evening sunlight. On one side is a basin where visitors wash their hands on arrival and departure and a wall-mounted holder for the plastic aprons that we’re required to wear, which tear off a roll like freezer bags. On the other side is what might technically be termed a bedside table, although it lacks any of the familiar personal items normally kept by the pillow.

  There are four identical bed-stations in this section of the ward, each with its own attendant nurse. All the medical staff from nurses to junior doctors to consultants wear the same dark pink cotton top and trousers. These are entirely different from the starched aprons, caps and white coats that I had naively expected, and create a pleasantly egalitarian atmosphere. The ward is kept scrupulously clean by a couple of friendly cleaners. I am grateful for their conscientiousness – it may prove critical in keeping my husband alive. They even dust the top of the curtain rails every day.

  Simon lies in a blue back-fastened gown under a white cotton sheet. His mouth is perpetually open to accommodate the plastic tubes of the ventilation machine that heaves and puffs above him. He has needles in both hands and arms, which are changed every three days and leave red swollen patches. The nurses have traced a line around each red patch using a black ink pen so that they can see whether the swellings increase in size. Some of the nurses seem particularly adept at making him comfortable, for example by lovingly placing his bruised and battered hands on folded pillows. For the last few days he’s been trying to sleep on his side, just as he does at home, but it’s difficult for him to roll over without pulling out any of the wires and tubes that tether him to the bed. I painstakingly ask all the staff to look out for the tell-tale crease between Simon’s brows that indicates when he’s uncomfortable or stressed. Even in his deep state of sedation, these basic physiological reactions still seem to function.

  I now know that one of the drips is filling Simon’s body with the anaesthetic Propofol, which is constantly monitored and adjusted to keep him at an appropriate level of sedation. When I arrive at his bedside at around 7am each morning, my daily greeting is “Hello Simon” (never treat the patient as inanimate) and then, turning to the nurse on duty, “How’s he been during the night?” and “What sedation level is he on?” Every twelve hours or so, the nursing team carry out what’s called a sedation stop, a kind of mini-experiment to see what state a patient is in without the Propofol. It seems amazing that the tap can be turned on and off so quickly, and in Simon’s case I understand that the results aren’t pretty. I’ve never been allowed to be present and I can tell they don’t want to talk about it with me.

  The consultant rota has changed and a fair-haired older man called Dr Jones is now in charge. Dressed in the same regulation cotton top and trousers as everyone else, and wearing white leather clogs, he immediately inspires confidence in me precisely because he is so relaxed and informal. When I ask if he’ll be around all week it’s oddly reassuring to hear him drawl “I’m afraid so”, perhaps because of its normality. I find out later that he’s the top ICU expert and has an international reputation.

  One of the changes introduced by Dr Jones is that what I nickname ‘the bolt’ has been inserted into Simon’s neck. It looks like a plastic plumbing device and means that there can be three drips going simultaneously into his jugular. The advantage is that the patient doesn’t need to have so many needles going into his hands, legs and feet, and that the bolt can stay in longer than the individual lines, or cannulas. However it also makes Simon more vulnerable to infection, suggests that he’s being seen as a long-term case, and generally presents a much bleaker picture of our situation. My husband is beginning to look like Frankenstein.

  CHAPTER 8

  The kingdom of the sick

  “We are all dual citizens of the kingdom of the well and the kingdom of the sick although we all prefer to use only the one passport,” wrote Susan Sontag when she was being
treated for breast cancer. Simon and I are now firmly in the kingdom of the sick.

  My friend Anna has made the inspired suggestion that I should approach our family emergency as if it were a Buddhist retreat. This immediately resonates for me. With the exception of our two cats, both fully supportive in their own inimitable way, I have no children or other dependents and am therefore free to devote all my energy to Simon’s recovery. I run a charity which I set up myself so I know from the start that the trustees will be supportive about me taking compassionate leave. We have spent most of the year organising an international conference in France, which is due to start in less than three weeks’ time, but although it will be our biggest event to date I’m confident that my wonderful team can carry it off without me. So I decide to switch off and tune out from all engagements and distractions and settle into retreat routine for however long it takes.

  Most traditional Tibetan Buddhist retreats follow a strictly-structured daily regime designed to ground the physical body so that the mind can go on its adventures: whether soaring into space (very occasionally) or (more frequently) clearing a path through a personal undergrowth of restless thoughts and emotions. My particular Buddhist teachers encourage their students to do retreats of three months and even three years, or at the minimum—for those of us with regular jobs—a month in every twelve. I’ve been quite slack about this since I got married, but have previously managed a full ten weeks in a stone hut up at 14,000 feet in the Himalayas and six weeks in a timber cabin buried deep in the national forests of Montana. Each in their own way was an extraordinary and life-changing experience in which the extreme solitude enabled me to dig deep into my psyche and taste the power of techniques developed over centuries to help us recognise and transform unskilful patterns of thinking and behaviour.