Bed 12

by Alison Murdoch

  Sunday is another quiet sleepy day, which is just fine by me. I am getting some much-needed space to catch my breath after feels like an extended emotional assault course. Simon is still silent but for the first time he shows interest in the whiteboard at the bottom of the bed and sits up unaided to gaze at it in a gentle and enquiring sort of way. I wonder if he can recognise any of the photos: of his bicycle, of him with the Dalai Lama, or collecting his doctorate. In the morning I had spoken of getting a springer spaniel, and in the afternoon he remarks, “The cats will have a new friend.” It is an encouraging indication that his short-term memory is back in play.

  Just before I leave, Simon suddenly announces, “I want to go to the cinema!” and makes a concerted effort to get out of bed. His identity as a film buff seems to have survived the coma. Unfortunately that thought seems to stay with him throughout the night, which is classified as agitated.

  WEEK SIX

  EXIT

  CHAPTER 26

  Wedding anniversary

  On Bank Holiday Monday I arrive at the bedside to find Simon sitting up and reaching out to shake the hands of a cluster of doctors and nurses, as if he is hosting a business meeting. When they leave, we have our first proper exchange. “I’ve missed you so much!” I say. “Guess who I’ve missed.” “The cats?” “Exactly!” Another knot of anxiety unties itself inside me—his personality is intact.

  In the afternoon it begins to get really exciting. Nurse George tells Simon that he’s been in St Thomas’ for over four weeks. “Does my mother know?” comes the response. Simon correctly remembers his date of birth and the current year, although he thinks it’s December rather than August. That’s no problem, it feels like December to me as well. I ask what kind of music he would like to listen to: classical, jazz or world? “Amira!” comes the reply, in full confidence that I will have a CD to hand from our musician friend from Sarajevo. Fortunately I have three. I ask if there is anything else that he wants. “A pint of beer,” comes the reply.

  By the evening I am sitting alongside my husband rather than anxiously opposite him. Both physically and psychologically it is a massive turnaround. We are quietly hanging out together and it really feels that the nightmare is over and everything will be OK from now on. I read him the messages in the Get Well cards that have been piling up on the shelf and tell him who has visited. I can see he is trying to slowly digest this information although he soon gets tired and needs a nap.

  The physiotherapists come by and join in the celebrations. “Extraordinary,” they say, as Simon not only stands up, but walks virtually unsupported into the middle of the ward and back.

  The other wonderful development is that Simon passes the ‘blue dye test’ and the ‘swallow test’. These are examples of ICU ‘low tech’ which even I can understand. In the first test some blue food colouring is put into his mouth, and in the second test he is assisted in drinking a glass of water that has been coloured blue. After each stage the tracheostomy is suctioned to check that the muscles at the back of the mouth are functioning properly and that no blue dye has gone down into the lungs. Success means that for the first time in nearly five weeks Simon is allowed to have an ordinary drink. To my surprise I’m told that this can be anything he wants. I scuttle downstairs and return with some freshly squeezed orange juice from the AMT café. Although the nurse is expecting him to take a few tentative sips he drains the whole cupful in one go. “Extremely nice!” he comments. I cannot imagine how wonderful that orange juice must have tasted after 36 days of nothing but chemicals and mouthwash.

  Tuesday morning finds me buying balloons. I am obsessed with the idea of tying them to the back of Simon’s bed when we wheel him out of ICU, as if decorating a ‘Just Married’ car. (Fortunately I realise just in time how grossly insensitive this would be to the other families on the ward). But when I reach the bedside my heart drops. Simon has a new consultant and a kind but particularly anxious nurse and because he was agitated during the night he has been re-sedated. It’s like a nightmare flashback: Simon is out for the count in his previous unnatural drug-fuelled state and the monitor is beeping away again above the bed. I then ask the nutritionist when the nasogastric tube will be removed, following the successful swallow test, and she replies that it won’t happen until he’s eating three proper meals a day. “That could be another week!” I exclaim. Another week in ICU—we could lose him yet. I pass the day in a mixture of anxiety and frustration.

  Wednesday is our wedding anniversary, and to my delight and relief the consultant rota has unexpectedly changed again and we are back with Richard. This is where the consultant’s familiarity with a patient can really make a difference. On the morning round Richard takes one look at Simon and asks for the sedation to be stopped and for both the tracheostomy and catheter to come out. Our nurse Janet also knows us well and when she hears that it’s a special day she arranges for her and John the physiotherapist to take Simon down to the river in a wheelchair. The sun is filtering down onto the water through the giant plane trees, John and Simon are discussing their favourite beers, and I am trying to believe that this is really happening. “What a strange wedding anniversary,” Richard observes, back on the ward. “Not at all: all the important things were in place,” I reply.

  “Thank you for looking after me: teamwork,” Simon says to me that evening. It is unmistakeably his style, his personal way of expressing his feelings, and it is the best anniversary gift that I will ever have.

  On my Thursday morning cycle ride into the hospital I stop to buy some bananas. Simon is sitting up in a chair beside the bed and eats one enthusiastically just as another new consultant arrives on her rounds. “This man looks far too well to be in intensive care,” she says, before I can even ask her name. “What did he have for breakfast?” “Half a piece of toast—and a banana!” I respond. “Take his nasogastric tube out, then, and find him a bed somewhere else,” she instructs Simon’s nurse Jim.

  Just before 1pm, Jim tells me that another bed has been found and departure is imminent. My face drops. My friend Lucy is coming up especially from Sussex for lunch—can the move be delayed? The answer is a reluctant yes, but only for an hour. The staff are willing to wait because the amount of clutter that we’ve accumulated around the bed will require at least two people to carry it all. I scuttle out for a quick but very good lunch washed down with a celebratory glass of champagne. As soon as I’m back on the ward our little cavalcade sets off. There are two porters pushing Simon in his bed and Jim and I bringing up the rear with his medicines and a ragtag of plastic carrier bags. We are waved out of the ward as if it was a royal procession. No balloons needed.

  The lift goes up and up until we reach the very top floor of the main hospital block. We turn into Hillyers Ward and I glimpse a private room with an enormous glass picture window. Surely not? The answer is: yes! After over a month of dim shadows and artificial light we are led into a room suffused by brilliant sunlight. The window takes up an entire wall, and we are looking down on the glistening river Thames as it curves its way from Westminster Bridge to Tower Bridge and Canary Wharf. It is awesome, dazzling, extraordinary—one of the best views in London. Simon is the first to break the silence. “Happy ending,” he says, and we both begin to cry.

  CHAPTER 27

  A room with a view

  Simon is now subject to St Thomas’ normal visiting hours: 2pm– 8pm. I have to admit this is a relief for me after the total immersion experience of intensive care. I luxuriate in my first free morning for over a month, and relish going out and about on errands such as buying some respectable pyjamas and slippers for his convalescence.

  Arriving on the ward just after 2pm is a rude awakening. Simon looks terrible. He hasn’t slept at all, is consumed with anxiety, and claims to have had a fall in the night. In contrast to ICU, there isn’t a nurse in sight. When I eventually find one she is adamant that there was no fall. This is our first experience of ‘confabulation’: a mind-bending mix of physiologica
l and psychological factors in which Simon’s brain, instead of functioning properly, appears to be making things up. In the circumstances, the nursing team agree that it’s best if I can resume my all-day visiting routine. It’s a disappointment to realise that my morning of freedom and fresh air was a one-off.

  We are now back in the cash-strapped, under-staffed part of the NHS. The nurses are lovely but they’re clearly stretched to the limit and have little time for anything more than supplying meals and medication and dealing with appointments and crises. What a contrast to the intensive care ward, a privileged realm in which nothing seemed too much trouble or expense and there was always a supportive medical team on hand. A doctor pops in briefly to see Simon on that first Friday and we then have no medical input of any sort until Monday afternoon, with the exception of one of the ICU nurses, despatched with typical 5-star thoughtfulness to check that we’re OK.

  When the door is closed our room has the quiet tranquillity of a remote cave high on a mountain, free from all the unnatural sounds of ICU. This tranquillity is rudely shattered on the first day when a pair of upbeat physiotherapists bounce in with an invitation for Simon to participate in a study of patients who have been on ventilation machines. Even for me they’re speaking too fast to follow, and Simon’s confusion levels rise exponentially. “We only came out of intensive care yesterday—give us a break!” I protest. Margaret, the senior of the pair, gets the message immediately. Over the coming weeks it proves a huge bonus for Simon to be involved in the study, and to get the extra attention and support that comes with it. However today it leaves me wondering how a fragile patient just out of ICU could possibly stay afloat without someone there to shield and support them.

  When they have left Simon’s habitual sense of hospitality comes back into play. “I must share this wonderful view with other people. We will invite someone different for lunch every day!” he proclaims. There is something very sweet and touching about such imperious beneficence, entirely oblivious to the rules and constraints of hospital life, and I don’t want to cramp his style. “How about inviting someone to tea?” I venture. “Very well, we will invite my team!” Sure enough, on that very first day out of ICU six members of the St Ethelburga’s team arrive for tea. The rule is that only two visitors are allowed at any one time, so I smuggle them across the corridor in pairs like a latter-day Noah. We keep the visit very brief, but that’s all it needs to be—for them, the Ark is the reassurance of seeing their boss alive with his personality intact.

  In an echo of home routines, we treat the weekend as down time and I begin to realise how exhausted I am. I’m functioning like a zombie. I requisition an abandoned armchair and footrest from a remote corridor of the ward and settle into a blissfully dozy and lazy couple of days in Simon’s magnificent private room. The weekend is punctuated by visits from some of my own cautiously ecstatic core team: Philip and Mike, brother David, Tony and Denise. It makes a welcome change to be the quiet one while Simon is the centre of everyone’s attention.

  Simon doesn’t have the concentration to read yet, so most of the time we just gaze out of the window together in contented silence, mesmerised by the silent fresco of the river landscape twelve floors below. He has seamlessly regained control of his mobile phone and is surprising family and friends with phone calls. From my side I’m enjoying the challenge of sourcing him the tastiest and most tempting of morsels from the hospital M&S, because one of our most pressing tasks is to get his appetite going again after so many weeks of liquid feed. “That was the best thing I’ve ever tasted!” he declares after eating an over-priced individually wrapped stick of mature cheddar. The room is perfumed with relief, and the scent is delicious.

  The hospital systems whirr into action on Monday with a speed that suggests that Simon is likely to be discharged at the earliest opportunity. I can understand that he has made a sudden and miraculous recovery and that the bed will be needed for someone else, but it’s still a shock to realise that very soon we will be out of here and largely abandoned to our own devices. I had welcomed the suggestion of ICU staff that Simon would probably need four weeks of supervised convalescence in St Thomas’ because of the space it would give me for my own recovery and transition. I had it all planned: mornings catching up at work, afternoons at the hospital, and evenings unwinding in front of a box set of Downton Abbey. Instead, my frail husband is about to be returned to my care 24/7.

  One of the reasons that the nurses on this ward are so busy is because of the vast but invisible task of arranging for their patients to get to all their specialist appointments in different zones of the hospital. In Simon’s case, first he’s seen by a general consultant, then by the neurologist, and then referred for another EEG and for hearing tests (it’s becoming clear that hearing loss may be one of the biggest legacies of his illness.) Every outing from the ward demands a porter and one of the clunky wheelchairs that I’d first encountered in A&E. I’m not allowed to take him myself so if a porter shows up late the whole schedule of appointments collapses.

  On the Wednesday, a mere seven days after leaving intensive care, Simon amazes Margaret the physiotherapist—and everyone else—by walking a full half mile along one of the hospital corridors. The weeks of delirious agitation have clearly kept him in shape, and it’s a huge and very helpful boost to his confidence.

  What comforts me most is to see how Simon is beginning to reclaim the richer depths of his mind and personality. A few days into his stay in Hillyers Ward he dreams that we are together with our cats in a huge old house with an orchard and that everything is peaceful and safe. It is a psychological turning point for him. Soon after, the ward consultant asks what his memory is like. “I’ve been wondering that myself,” replies my husband. “Have you heard of the Hungarian film director Bela Tarr?” The consultant, like most of us, is not familiar with this august but relatively obscure Hungarian auteur. Simon continues, undeterred. “Well, during the night, I managed to remember every film he’d made and put them in chronological order.” The consultant, who had probably been thinking of a simple question like “Can you name the Prime Minister?” beats a hasty retreat.

  The film theme continues, not only because it’s so close to Simon’s heart but also because we have a tantalising aerial view of the National Film Theatre from his room. When Simon gets out of here, he decides, he will set up a film club. In November, free from the constraints of a working diary, he will have a bonanza at the London Film Festival. He recalls the year when he went to so many films in the Festival that he had to create a special spreadsheet to analyse the minimum cycling time between each venue.

  Not everything is positive. One evening I rush in excitedly with the news that John Maver the Australian pianist is playing downstairs in the Central Hall. I get permission to take Simon down in a wheelchair only to find that all he can hear of Chopin and his adored Beethoven is a painful and discordant crash of chords. It’s a sobering moment. Nevertheless the EEG results are fine and Simon is told that he will be discharged in two days time. To celebrate, he dictates his own message for the Facebook page—very, very, slowly—and we post some photos of him wearing a Moroccan gown instead of an invalid’s pyjamas.

  On the last evening, despite my misgivings, we organise a family breakout from the hospital so that Simon can collect his very own London Film Festival brochure from the NFT. We make a worthy addition to the parade of eccentrics to be seen on London’s South Bank: Simon in a dressing gown, leaning heavily on a crutch, and me bringing up the rear with a hospital wheelchair that I have sneaked out of the building for the return journey. Clunk clunk clunk! I take a photo to celebrate this special moment, with Simon waving the brochure like a flag to mark the re-conquering of his physical, psychological and territorial freedoms.

  In retrospect, the joy of these magical eight days suspended between earth and sky in Hillyers ward is something I will always treasure, particularly as it acted as a buffer zone between the drama and intensity of Simon’s mon
th in a coma and all the challenges to come. Learning to cope with the aftermath of his illness while being suddenly severed from the all-embracing love and care we had experienced at St Thomas’ was to prove harder than I could ever have imagined. I had no inkling of how much I would miss the camaraderie and profound bonds that had been forged in ICU and how lonely and difficult the coming year was going to be.

  AFTERMATH

  CHAPTER 28

  Mayhem

  Simon declares that the autumn immediately following his illness is one of the happiest times of his life. As he explains it, he isn’t in any physical pain (a rarity among convalescents) and has unprecedented leisure time in which to relish being alive as never before. The doctors, by contrast, are labelling his state of mind ‘post-traumatic euphoria’. “There are things we can do about it, if it goes on too long,” says his neurologist, in a chilling flashback to One Flew Over the Cuckoo’s Nest. I resolve to keep our distance. From a Buddhist point of view, Simon’s childlike joy and technicolour appreciation of everything he sees, hears, smells, tastes and touches is a natural consequence of coming back into circulation after a deep interior experience.

  Only three things hold him back: his hands, his hearing and his head. Weeks of thrashing about in an ICU bed have damaged the ulnar nerves in his elbows so his hands are partially paralysed. What was previously a mild hearing problem is now much worse, probably as a side effect of the powerful antibiotics used to combat his pneumonia. He also experiences hearing distortion: for example, walking along the shore one day he hears the surf as church bells. In addition it’s evident that his memory, his ability to concentrate and prioritise, and his emotional intelligence have all taken a hit.