Bed 12 Read online

  In my role as Simon’s personal DJ I select appropriate tracks for each phase of the day and leave a small pile of soothing albums by the bedside for overnight use. My most regular tracks are Gregorian chant, Palestrina and Bach, or else sitar, oud and qawalli music from India, Pakistan and the Middle East. My instinct is to avoid anything emotional such as Brahms and Beethoven, or the noisy Romany brass bands, Bartok, and Ligeti we’ve enjoyed together over the years. Various friends deliver favourite CDs to the hospital or offer to put together special compilations. The most common suggestions are to play Mozart and Pachelbel’s Canon, both of which he particularly dislikes. That won’t bring him back to us! Our singer-friend Carolina Herrera has made a recording of Spanish and Colombian ballads which I play so often that the CD wears out. She happens to be working as a doctor at St Thomas’ this same summer, and one afternoon turns up in person just as her beautiful voice is weaving its magic around the bed.

  Even on an open ward each bed seems to become an independent emotional pod where the patient’s family can sit, talk, read, and—within reason—play the music of their choice. Only once does a seriously ill man in the bed alongside Simon use sign language to indicate, unmistakeably, that our plainsong is driving him round the bend. I have never turned a CD player off so quickly.

  In between the music I read to Simon. Doris Lessing on cats, poetry by George Herbert, Lao Tzu and DH Lawrence (more cats), and Father Brown short stories. I get through an entire volume of Chesterton’s gentle vignettes, probably more for my benefit than his. Somehow I’m never drawn to read the newspapers to him. On every level they seem too noisy and grubby.

  One day I decide to focus entirely on Rumi. Our friend Amira in Sarajevo sends us a poem that particularly resonates for me:

  Last night,

  I saw the realm of joy and pleasure.

  There I melted like salt;

  no religion, no blasphemy,

  no conviction or uncertainty remained.

  In the middle of my heart,

  a star appeared,

  and the seven heavens were lost in its brilliance.

  The nurse is looking a bit baffled, so I explain that Rumi is a Sufi poet from Eastern Turkey whose writing we particularly enjoy. “Does that mean you do a lot of travelling together?” she asked. Rumi would have liked that.

  I am concerned about what Simon will see when he first opens his eyes, so I buy an acrylic picture frame that will neatly hide all the scary-looking medical instruments on his bedside table while being easy to keep clean. I fill it with images of Devon, of the cats, of myself with the cats, and with a postcard of the mysterious painting Pilgrimage to the Cedars of Lebanon which hangs in the Hungarian National Gallery in Budapest, and which we used as the theme for our wedding 15 years earlier. Painted by an artist called Tidavar Kosztka Csontvary, it shows a crowd of diverse and mysterious figures dancing joyfully under the spreading branches of a huge cedar tree. I have always seen it as a metaphor for our marriage, whether here in the hospital or in happier times.

  The pièce de résistance is the whiteboard. I’ve always been drawn to whiteboards, and when I see one alongside one of the other beds in ICU my fingers start twitching in anticipation. I tackle one of the staff nurses. “Can we have one of those for Bed 12?” “They’re in short supply,” comes the reply, sensitively avoiding the question of why a patient in a coma could possibly need a whiteboard. “Can I bring in my own?” “No, that’s not allowed.” “Can I donate one to the ward?” “No, that would be too complicated.” My eyes stray to the technical specifications on the back—how difficult would it be to source an identical whiteboard, and smuggle it in? Before I can expedite my devious plan, the staff nurse, clearly sensing a Wife On A Mission, miraculously produces a whiteboard to put at the end of Simon’s bed.

  The day nurse picks up the whiteboard pen, asking “What are the names of your cats?” “No, really, it’s OK, I can take care of this for you,” I respond, trying to be both tactful and firm. Of course I can take care of it—I’ve been thinking of little else for days. Within 24 hours, the whiteboard is covered with photos: Simon with the Dalai Lama and various other spiritual teachers, Simon collecting his honorary doctorate, and a favourite image of his bicycle silhouetted against the evening sky—a reminder of when he cycled solo across the great Hungarian plain. In the middle, I put a verse of poetry by Simon’s late father:

  I will go out and gaze on the infinite spaces

  Of the unclouded sky

  Beyond all colour and form and the changing graces

  I seek His mystery.

  Determined to avoid complete defeat, the nurse then adds a plastic clock, which promptly smashes to the floor.

  On a ward where everything unique and comforting has necessarily been stripped away the whiteboard gives an unmistakeable message about who Simon and I are, and what we care about. On at least one occasion I find it being used as a teaching tool for student doctors on how to help their patients retain dignity and individuality. As the weeks go past, one of the registrars observes: “Simon is no longer simply the patient in Bed 12.”

  A few days later a new staff nurse introduces the idea of stimulating Simon’s sense of smell. “Wear his favourite perfume,” she advises me, “we’ve heard it can help.” On the basis that neither of us are spending money on much else at the moment, I gleefully make daily use of my special-occasion scent, Penhaligon’s Love Potion No.9. In reserve, I carry a travelling eau-de-toilette spray of my more modest second favourite, Sensuale from M&S, until the day that the spray mechanism jams. At lunchtime I abandon my retreat boundaries to cycle to the nearest store. There’s a long queue at the desk, and I observe myself becoming hysterical. “My husband’s in Intensive Care and my perfume spray has jammed!” A large and comforting M&S matron comes to the rescue. “I’m so sorry dear, please just take another one off the shelf.” This also gives me an opportunity to purchase some more white underwear. I can’t bear to wear anything black at the moment.

  William is the new ICU consultant for the week and mentions that aromatherapy has also been medically proven to be helpful for long-term coma patients. I appeal to our Facebook group and am given the contact details of an experienced aromatherapist. To my surprise she declines to get personally involved, saying this is not a job for a professional, but for the person who is closest to Simon: me. Her advice is to purchase a mixture of lavender, frankincense, rose, camomile and clary sage essential oils, which can then be diluted with sweet almond oil and used to caress and massage him. I purchase all the ingredients by mail order and set to work. Some of my early concoctions smell awful, while others are somewhere between OK and gorgeous. At the end of the first day Simon shows no sign of appreciating my efforts but our nurse Katherine thanks me for providing such a relaxing work environment.

  Simon’s head feels off-limits, too fragile to touch, so I focus on massaging his feet and hands. Then one afternoon while still in his unconscious state he suddenly turns over on all fours and sticks his butt in the air. Acting on a hunch, I quickly rub my palms with oil and start to massage the area around his coccyx. The muscles are bunched in tight knots just as mine would be if I were stuck in bed all day. I rub in the oil using all the strength in my thumbs until with a satisfied sigh Simon turns over and lies down again. This occurs repeatedly from now on, although the nurses tell me that it’s only when I’m there in person to respond.

  Sometimes I worry about how the medical team are coping with having Simon’s wife at the bedside for up to 12 hours a day. So it touches me deeply when Nurse Jane comments that “every bed should have an Alison.”

  CHAPTER 19

  Battle of wills

  One morning in the chapel a phrase arises unexpectedly in my mind: “Be still and know that I am God.” I feel fortunate to be relatively comfortable with the term ‘God,’ unless it happens to be paired with what is, for me, the unconvincing image of a white-haired old man on a cloud. As Archbishop Rowan Williams said at
a Christian-Buddhist talk I recently attended, it’s important to remember that God is not an It. But what draws me is the essence of this advice: to relinquish attachment to any particular outcome, and to surrender rather than to stress and strive. I find it unexpectedly calming and serene.

  As a child, I loved the Hornblower books. During one adventure, the entirely admirable Lady Hornblower proposes that there’s no purpose in worrying about something you can change: just get on and change it! Equally, there’s no purpose in worrying about something you can’t change. Decades later I was intrigued to hear the Dalai Lama say exactly the same thing, and I keep trying to apply this same wisdom to my present situation. There’s no point using up energy to worry about whether Simon will survive or not because it’s pretty much out of my hands. Every now and again I feel I’m succeeding in not worrying, but then I lose the plot again.

  I also warm to the Muslim phrase “Trust in God, and tether your camel.” There’s a lot of camel-tethering going on in ICU. Yet if God has chosen to re-order Simon’s brain, who are we to argue with that? We had no hand in creating his brain in the first place!

  Philosophy aside, my bottom line hasn’t really shifted: I want Simon back, please, just as he was, so that we can continue our life together. And it’s often the little things that get to me. For example, this week I am dogged by the incongruous anxiety that if he comes round we will no longer share the same sense of humour and be able to laugh together at comedians such as Bill Bailey. I see how much of our life has revolved around sharing small pleasures, and marvel at the fragility of that.

  In my quiet zone at the back of the chapel, time, concepts and boundaries merge and dissolve. “Who is Simon, anyway? Am I trying to compress him into one static moment or memory of my choosing? That makes no sense, and will never work!” These intense weeks at St Thomas’ are teaching me the importance of embracing the unknown. If I resist the unexpected, clinging only to familiar memories and concepts, then not only am I unable to appreciate what is unfolding but I also find myself brittle with fear about whatever could happen next. I recall the Japanese proverb: “The bamboo that bends is stronger than the oak that resists.”

  Perhaps unwisely I attempt to share some of these philosophical ramblings with the Facebook group, and receive a storming response from our Rabbi friend in Florida. “Dearest Alison. Although I am neither a Buddhist nor a Christian, my Jewish soul screams out against any thought that God in any way, shape or form decided that Simon’s brain should be re-arranged, altered, whatever, or that God might have decided to afflict Simon. Any God Who would do such a thing I want nothing to do with.” I can feel Rabbi Mark’s explosive wrath from across the Atlantic, and decide it’s prudent not to respond.

  Meanwhile, oblivious to the theological debate raging in his absence Simon is going through his own battle of wills. Arriving on the ward just after 7.30am I can see immediately from Nurse Ed’s shoulders that he is worn out—“shattered,” he says. Simon hasn’t stopped moving around all night long and looks equally shattered. There are dark rings under his eyes, and bruises on his arms and legs where he’s hurled himself against the metal bars of the bed. It’s clear that he desperately wants to sleep, but it’s as if there’s a chemical alarm clock in his body that wakes him up again every 60 seconds. I can tell that the nursing staff are unhappy with this state of affairs. They have the power to make minor changes to his sedation levels, but the general strategy is determined by the consultants, leaving the nurses to manage the consequences.

  Simon’s gestures and movements are becoming increasingly familiar to me, but he repeats them endlessly in slow motion. His eyes are now often wide open, but dazed and uncomprehending. There are moments when the expression on his face is so agonised and terrified that he reminds me of Goya’s etching of Saturn consuming his children. At other times he looks more confused than scared.

  All day long I whisper in his ear “You’re safe, everyone’s safe, there’s nothing to be afraid of, if you’re seeing frightening things it’s only because of the medicines the doctors are giving you, you’re getting better every day, we’ll go home soon, I’m here and I love you so much.” He lies back down, docile and peaceful, until the cycle resumes a minute or so later. I’m proud of the fact that there’s no sign of any anger or aggression in him, just puzzlement and deep confusion.

  One of the nurses has such an uncanny ability to get the bed comfortable and in order that I secretly label her ‘the pillow queen’. She has the manner of an old-fashioned nursery nurse and this has a visible effect on Simon’s behaviour. I muse to myself about whether this is an inborn skill or something that can be learned alongside the many other more technology-based tasks that an ICU nurse has to master.

  Following on from Nurse Ed’s challenging shift, the ward sister Angela assigns two overnight nurses to Simon’s bedside rather than just one. I’ve never seen that happen before and wonder what impact it has on the budget. But to everyone’s surprise, Nurse Lau and his colleague conjure up such a relaxed and nurturing atmosphere that they even find time to give Simon a massage, raiding my store of scented oils.

  With the morning shift, the agitation resumes. Although still unconscious, at one point Simon actually gets his feet onto the floor. Angela is now at the end of her tether. She gets on the phone and negotiates to borrow a bed with cot sides from the paediatric unit. It’s brand new with a brushed-cotton fitted sheet and padded sides, and is also longer than his previous bed. One side is missing its padding but this is quickly improvised using pillows held together by plastic forceps. Crash mats are placed on the floor each side of the bed in case Simon makes another bid for freedom and the bed is lowered to within a few inches of the floor. The entire arrangement is a triumph.

  I don’t know why I am so much less anxious than the nurses. Is it because I bear no direct responsibility for Simon’s physical safety? Or is it because I’m unaware of all the risk factors for his long-term health, both from the original illness and from the drugs and other treatments that he’s received over the past weeks? Or perhaps it’s just because I’m closing down emotionally, out of self-preservation. The image that comes to mind is of a mussel that’s only a chink open. However what I do observe, and Philip agrees, is that Simon’s familiar gestures and poses are gradually re-emerging out of the fog. Despite the delirium, it feels as if he’s gradually coming back to us.

  CHAPTER 20

  Travelling companions

  “My pet hate,” says a ward sister one evening, sharing a confidence while we watch Simon’s bed being changed, “is the families who think that their situation is unique, and that they matter more than anyone else.” I listen and take note, avoiding the obvious question: “Do you mean us?” I now have direct experience of how easy it is to be blinkered to everyone else’s problems when you’re holding onto your sanity and composure by the tips of your fingers. Whenever I do find the strength to look up for a moment, it’s obvious that everyone who enters ICU is in crisis. Every family is riding a roller coaster, with their own back-story, soap opera of characters, and narrative of hope and heartbreak.

  The hub of our fragile community of ICU family and friends is the Relatives’ Room just inside the entrance to the ward—which through a Freudian slip I keep referring to as the ‘Residents’ Room’. The worn and grubby nature of this small space, which is hardly 8ft by 10ft, belies the emotional depth and breadth of what goes on here. It’s a sitting room for relaxing over a reassuring cup of tea, except that there’s no tea, no relaxation and little reassurance. It’s an airport lounge for people who are waiting on experts and technologies beyond their control, but who have no wish to travel anywhere. It’s a local bar or pub with its regular visitors and familiar topics of conversation, except that nobody is here by choice. The faded carpet is made of eggshells.

  Along with the other long-stay visitors I watch the new families arrive, shell-shocked and teary, and can imagine that even a day or two in this place seems like hell. Withi
n the week most of them are gone, before their application to our macabre private members’ club has dried on the page. These temporary visitors can also fail to understand the discreet protocols of the club. One day, two young men sit together laughing out loud as they experiment with new ringtones for their flashy smartphones. They completely miss the fact that other people in the room may be trying to cope with negative test results, catastrophic downturns, and the lives of their loved ones slipping away from them.

  The family of Miranda, the young woman admitted with encephalitis the week before Simon, are my natural friends and allies. Her parents have taken compassionate leave from jobs abroad and, like me, have turned hospital visiting into a full-time occupation. We are discreet about our past lives and intimate about the present—except when we intuit that our good news could destabilise the other’s fragile ability to cope. I celebrate with them when Miranda comes out of her coma, while secretly mourning their imminent departure from the ward. My teacher Lama Zopa encourages his students to consciously and repeatedly rejoice at the good fortune of others as an antidote to envy and jealousy. On this occasion I find myself applying the antidote with all my might.

  Other families have a different style. A young man appears in the bed next to Simon. He’s covered in bruises, but when you look into his eyes there’s a much deeper and darker pain. He is visited by two Sikh men who to my surprise stand rather than sit at the bedside with their arms crossed and sometimes even turn their back on the patient. On the landing outside the ward one of them opens up a conversation. “Is that a photo of your husband collecting a doctorate?” I assent. “You must be very proud of him. Whereas our brother, all he’s doing is to drink himself to death. We can’t even marry him off to a good woman in this condition.”