Bed 12 Page 7

  In the midst of these inspiring thoughts and glorious technicolour images I feel a light tap on the head. I turn to see the Bishop of London, Richard Chartres. For the past seven years Simon has been the director of a project close to the Bishop’s heart. St Ethelburga’s Centre for Reconciliation and Peace was established in a medieval city church that had been largely destroyed by an IRA bomb in 1993. This is the church where Simon now works, with the Bishop as his Chair of Trustees. The Bishop’s secretary had alerted me that her boss might drop by after a session at the House of Lords. Although it is less than ten minute’s walk away over the River Thames I know he has a packed diary and didn’t really expect to see him.

  I update the Bishop about Simon’s condition while his nurse bustles about her duties, entirely unfazed by the presence of a purple-shirted dignitary wearing an extra-large and very blingy crucifix. Bishop Richard has brought Simon the gift of a small icon of St George slaying a suitably writhing dragon. He says some prayers over Simon in both English and Latin. As we walk back down the corridor, I talk about the challenge of holding on to a view of ultimate reality—that whatever happens, Simon will be OK—at the same time as navigating the relative realities of hospital life and giving everything I can to the struggle to bring him back to health, millimetre by millimetre. “It’s like keeping my heart open in hell,” I say. Although he doesn’t reply, I feel that the Bishop understands. He comments that the visit will help him visualize us during his daily prayers.

  Afterwards, Simon seems unusually peaceful. With the late afternoon sun slanting through the window and plainsong playing gently in the background I take his hand in mine and fall asleep.

  CHAPTER 16

  Domestic affairs

  The front garden of our house is really getting on my nerves. The bay tree in the middle has lost its shape, the hedges are tumbling out over the pavement, and the flowerbed is full of weeds. There’s a voice in my head telling me that this really doesn’t matter—I only pass through for a few seconds each morning and evening—but I also have some faith in the Chinese art of feng shui which advises that a messy front garden will bring further mess into your life. It seems common sense that our environment has an effect on the way we think and hence on how we choose to act. And I don’t need any more mess right now.

  As an experiment, I decide to come home from the hospital one Sunday lunchtime to do some gardening. It turns out to be a bad idea. The friend who offered to join me changes her plans. The initial pleasure at being active fades away as it begins to rain. The final straw is when an elderly man walks past, and comments in a friendly way, “You should get your husband to help with this!” I burst into tears so vigorously that my neighbour Jean comes out of her front door to see what’s going on.

  Jean invites me to join her and some friends for lunch. Her guests include a man whose wife has just died. He sits silently at the end of the table totally absorbed in his grief with no energy for anything except the basic necessity of getting some sustenance down his throat. As Jean pulls up a chair for me at the table I wonder if I will soon be in the same condition. Aware that I’m incapable of talking about anything except hospital life I too keep my mouth firmly shut. It’s not too difficult: I’m finding it hard to relate to the chit-chat, banter and discursiveness that make up everyday conversation.

  After three hours away it’s a relief to head back to St Thomas’. The experiment has failed. Our house is laden with the traces and memories of weekend routines together and to come back to it alone has been a horrid experience. To compound this, I now have to make the mental and physical effort to cycle to the hospital for a second time in one day, not knowing how I’ll find Simon. It is much more appealing to remain within the walls and embrace of the great hospital city and to draw on its many resources whenever I need to distract myself or take some rest.

  Nevertheless, domestic life continues to make demands. The following morning a team of plumbers arrives to sort out the blocked loo in our upstairs bathroom. Two men arrive for the task: one young and technical, the other an older guy called Dave with tattooed arms who immediately inspires my trust and takes me under his wing. Another father figure—great! I’m collecting them as fast as I can. With the water turned off and the bedroom filled with equipment, I give Dave a set of keys and head off for St Thomas’. When they ring later to say that the loo is back up and running at what feels like an enormous price, all I can do is trust and pay up. The practical part of my mind tells me that I can’t risk Simon coming out of hospital to a loo that doesn’t work.

  Another mundane task is to put in an insurance claim for our cancelled summer holiday. Friends have offered to help but I don’t see how I can guide them through my inbox to hunt down all our various bookings, even if they might be in a better state of mind to calmly work their way through the maze of requirements. My first attempt to contact Ryanair gets cut off, so when I eventually get through all the automated phone choices and am told to ring a different extension I go into meltdown. “Please stop crying, Madam!” says the operator in a panic. “I can’t stop crying, my husband is seriously ill in hospital!” It’s very cathartic, albeit at her expense. When she breaks all the rules to ring me back—a phone call FROM Ryanair!—I manage to be suitably chastened and appreciative.

  The challenge of recovering Simon’s bicycle proves more enjoyable. On that first day in late July he had cycled away in the morning and struggled home on foot so it’s a puzzle to be solved. Our target area is Waterloo Station, where he boarded his train, and members of the family have been scouring the streets with some amusing results. Simon’s extremely respectable headmaster brother Tim successfully located a bike that met my description—a black racing bike with straight handlebars—in the racks outside the station. He opened the lock with Simon’s keys, only to find that there was a second lock and to realise that the bike was a hand-made Claude Butler rather than an off-the-peg Ridgeback. Tim beat a swift retreat, looking over his shoulder in alarm at the bank of CCTV cameras.

  Simon has always loved the Royal Festival Hall, so one lunchtime I take a prowl, wander past a rack where we’ve parked our bikes before, and there it is! I feel like a hunter who has tracked down their prey. The twist in the plot is that I’ve forgotten that he recently switched over to a combination lock. I try various sequences of meaningful numbers without success.

  Our friend Paul is a very practical and helpful person who originally came to the UK as a Kurdish asylum seeker and who now works as a chauffeur. A few days later he meets me by the bike with a huge pair of bolt cutters. As it’s broad daylight I tell a nearby security guard what we’re doing and why, and then with one easy snip the bicycle is in the back of Paul’s 4x4 and we drive it back to our house. Paul also looks at some other DIY jobs that need doing in the house before driving me back to the hospital.

  DIY, along with IT support and cooking, is probably the most helpful thing that anyone can offer to someone in my situation, especially when they take the initiative rather than waiting for me to ask. Most of the time I’m too preoccupied to even know what to ask for. One evening I get back to find a plastic carrier bag on the doorstep. Inside is a loving note from my friend Della and a casserole containing enough hearty and comforting food to last for three days. On another evening my neighbour Jean appears uninvited but oh-so-welcome with a bottle of red wine and a homemade apple pie.

  In the evening, I pay my first visit to a supermarket in over two weeks. Until now I’ve got by on what was already in the fridge, or whatever our lodger Sue has put on the table. I look at the multi-coloured shelves in a daze. I used to be a bit of a foodie, but now I couldn’t care less about what I buy or eat.

  “Check up!” Lama Yeshe always used to say. Can the mundane objects to be found in a supermarket or shopping mall really bring us lasting happiness and satisfaction? If not, then why do we devote so much time and energy to them? Instead of endlessly chasing after external objects and sensations, surely it makes more sense to r
edirect our energy into cultivating a more relaxed and spacious mind. A medieval Indian monk called Shantideva compared this to covering our feet with leather instead of foolishly trying to make the whole world smooth to walk on. Is Simon’s illness putting me on the fast track to realising this important truth? I doubt it—but there is something in me that relishes the current rearrangement of my priorities to focus on what is most important in life.

  Tim devises an elaborate scheme to bring his mother up by train to London Waterloo, then over to the hospital in a wheelchair, and then back to our house for the night. I find it heart-breaking to see this quiet and dignified woman sitting at the side of a hospital bed trying unsuccessfully to communicate with her delirious eldest son. “Simon, it’s Mum. Mum’s here!” I’m hopeful that he is hearing her on some level, but there’s no outer sign to justify my wishful thinking. Seeing them off at the station the following day I have a fleeting impulse to jump on the train myself, and consciously have to hold my body back. Simon’s mother asks me to look after her son.

  CHAPTER 17

  Non-recreational drugs

  Rajeev has been our ICU consultant for the whole of this week and a rock of strength in difficult times. He is a tall slim Indian man who moves with the soft suppleness of a tai chi master and listens to everyone with the same old-world courtesy. He is clearly held in great affection and respect on the ward. When Simon’s wires get tangled up one day, Rajeev immediately steps forward and sorts them out, which has the nurses seriously impressed.

  According to something called the Glasgow Coma Scale which was developed in the 1970s to measure the eye, verbal and motor movements of severely ill patients, Simon is still in a coma. However it’s not the peaceful state that this word suggests. Although he’s unconscious all day long he thrashes from side to side, which means that someone needs to constantly be on hand in case he pulls out one of his lines or twists his catheter tube around his torso. Again and again he tries to sit up, and again and again I put an arm gently round his shoulders and guide him back down onto the pillow. He regularly stretches his legs out until his feet protrude through the bars around the bed and have to be gently manoeuvred back in before he twists an ankle. On one occasion he nearly gets them down onto the floor.

  Rajeev is discussing with Angela the staff nurse whether to give up the struggle to stop Simon falling out of bed and take the radical step of putting him onto a mattress on the floor instead. This might also enable them to lower his sedation levels. They kindly enquire whether I have a preference. Nurse Clare had earlier shared a vivid image—straight out of José Saramago—of neurological patients being placed in cushioned indentations in the floor where they can writhe about without damaging themselves. Nurse Eva tells me that in Australia, where she comes from, Simon would be restrained. So a mattress on the floor feels like a good compromise, and I’m sorry when—for whatever reason—they decide to bow to protocol and keep him in his bed.

  The straightening of sheets and plumping of pillows continues hour after hour, day after day, as well as throughout the night. I observe how our lovely Glaswegian Nurse Janet starts the day full of energy and optimism but by the end of her shift is clearly struggling to hide her stress and physical exhaustion. It is an impossible task for one person to handle alone so at least I can play a useful supporting role.

  Up until now Simon has been dressed in the same back-fastened operating gown as all the other ICU patients. This constantly rides up around his waist as he twists and turns and has to be straightened again to keep him decent. This week one of the nurses has had the brainwave of putting him in a pair of the coral-coloured cotton pyjama bottoms that I later find out are standard issue on other wards. A problem that has caused endless bother is solved by one simple intelligent idea.

  Simon is tall and fit, and with bare torso and loose coral-coloured trousers he looks like a warrior on a Greek vase, especially when he rises up on his knees in frustration at being tethered through the nose by the nasogastric tube. We still have no idea what is going on in his head but his great spirit shines through: dazed and confused yet unfailingly gentle and courteous. It breaks my heart to see my beloved in this state.

  Rajeev takes the decision to wean Simon off his ventilator. This can be risky. We have been warned that after a long period of artificial ventilation many patients find it difficult to breathe unaided. However in Simon’s case it seems to be no problem. Puffed up with vicarious pride I am the least surprised, because of my confidence in my husband’s strength and resilience.

  In addition to getting Simon to breathe normally again, the medical agenda of the week is to reduce Simon’s drug regime. He is now receiving quite remarkable levels of sedation—more than six times what it would take to knock any of us out, Rajeev tells us—which could cast shadows over his long-term health. Apparently it’s particularly important to slow the build-up of lipids in his liver. I keep quiet about the fact that I have no idea what lipids are, but the word is vividly onomatopoeic and it doesn’t sound good.

  One afternoon Rajeev introduces me to Debbie, the hospital pharmacist, explaining that she did her PhD on exactly the drugs that are being given to Simon. Debbie tells us that it takes at least 48 hours to test each new combination of drugs. I wonder briefly what Dr Masuru Emoto, the Japanese researcher into the relationship between water and consciousness, would make of it all. At least two thirds of the human body consists of liquid, and the medical team are dripping chemicals into Simon all day long without knowing how they will collectively impact on his unique physiology. Rajeev admits that he’s been phoning around specialists in other hospitals, but that this is unknown territory.

  On the Sunday morning, I arrive to find that in his overnight agitation Simon has knocked out his nasogastric tube and missed two doses of his drugs. Rajeev puts his head in his hands, visibly upset. “We spend six days fine-tuning it, and then this happens!” he exclaims. Replacing the tube is a major undertaking that requires extra sedation followed by an x-ray to check that the tube has safely reached the stomach. The upside is that the x-ray shows that Simon’s lungs are clearing up after the pneumonia. However something evidently doesn’t go right, because Simon spends the rest of the day wiping his battered and bloodstained nose on pillowcase after pillowcase, until each one is covered in yellow-red stains. It’s wretched to observe him in such frustration and distress and be helpless to do anything about it.

  This is the last day of Rajeev’s one-week shift on the ward. Sundays have a more gentle and personal atmosphere in ICU and we slip into conversation. I mention that pujas are being recited for Simon in South India and Rajeev responds that he was born in Kerala. I find out that Rajeev’s father is a Brahmin priest and that he is familiar with some of the ashrams that Simon and I have visited. Rajeev feels he’s too young for all of that. I respond that this is a characteristically humble Indian approach: in the West, we have no hesitation about striving for spiritual wisdom in our twenties.

  Rajeev clearly cares deeply about Simon. At a family consultation at the beginning of the week this lovely caring consultant had made a bet with us that by the end of Saturday he would have him sitting upright in a chair. Even though the idea seemed preposterous at least it gave us all something to hope for. Instead, despite the best efforts of Rajeev and the ICU team Simon remains unconscious and completely out of reach, endlessly and deliriously tossing from side to side in his bed. Rajeev shares his view that we are now in the mysterious zone where the medical and the spiritual converge.

  WEEK FOUR

  VIGIL

  CHAPTER 18

  Odysseus and Penelope

  I’ve now spent three weeks—or over 200 hours—watching my nearest and dearest navigate a private world that nobody else can access or interpret. To start with his only movement was the regular rise and fall of the chest as life-giving air was pumped in and out—a rhythmic process, powered by machines, which doesn’t seem to qualify as breathing. More recently he has been thrashing about li
ke an imaginary warrior who is fighting for his life. Meanwhile the rest of ICU carries on all around us. Shifts begin and end, shadows shorten and lengthen, and patients come and go, either to recover and transfer to other wards, or to lose the fight for life and pass into the next world.

  Images from myth and fairy tales come to mind. Simon’s spirit is absent, gone on a long and dangerous journey from which he may never return. I imagine him stranded on a distant shore, stuck at the bottom of a deep well or lost in a dark forest. Hospital wards, particularly ICU, are designed to keep killer germs at bay and in the process everything soft, comfortable and familiar is scrubbed and hot-rinsed away. Why would Simon be drawn back to this environment, I wonder? What can I do, as his beloved wife, his Penelope, to give him a stronger incentive to return?

  We have already started with sound. Sound is the most basic and primeval of the sense objects, as St John (and many of the Tibetan classic texts) knew well: “In the beginning was The Word.” Sound is also free and one of the few things that, within reason, the patient’s family can bring into this stark environment. Bed 12 has a shelf alongside it and I have been allowed to commandeer the space on top of the shelf for “a few CDs.” I bring new music each morning from our extensive home collection and take the equivalent number of CDs away each evening, making an effort to keep the music library down to about 30—a reasonable number, I tell myself.