Bed 12 Page 9
In my first few weeks here the hospital corridors functioned as nothing more than a hurried route from A to B. Now it seems my capacity for empathy is beginning to return, and I’m developing a fascination with the carnival of people at different points in the hospital cycle. There are young women pregnant with the mystery of their first baby, hospital regulars with the strangest of bodies and the biggest of smiles, and patients and their families full of relief at finding out that their particular drama has a happy ending.
Wherever you wander there are stories. A woman in the café, probably in her late sixties, visits St Thomas’ every month with her husband so that he can have his blood cleaned and replaced. They have learned to make an outing of it, she tells me. They go to the nearby Hole in the Wall pub for supper, where he’s allowed just one pint, and stay overnight in a hospital guest room. The previous night the hospital had mistakenly allocated them a room with a single bed so they’d had to share it top to toe. “You just get on with it,” she says. A young mother is enjoying a rare morning off from caring for her disabled child. She’s chosen to spend it in the hospital café because she feels a special sense of belonging here, in this community of people who know at first hand what it is to lack ease and safety in their lives.
Walking into the hospital one morning, I encounter a young man in pyjamas who is smoking just outside the doors. Taking great care not to sound heavy or critical, I venture, “I hope you’ll be able to give up smoking at some point: my husband’s in intensive care and probably wouldn’t have survived if he’d been a smoker.” The young man replies, “Sure, but my arm is being amputated tomorrow.” A few days later, there he is again, smoking with one arm, and he asks me for a tenner. How can I say no? I find that out soon enough the following week, when the ask goes up to fifty pounds.
Apart from the cafés, the social hub of St Thomas’ is the panelled Central Hall, an open space located at the intersection of the main corridors in the centre of the old building. It’s used on an occasional basis for fundraising sales of cakes, jam and second-hand books (organised by the Friends of St Thomas’), and on a daily basis for music. Every afternoon the corridors echo with magnificent piano music played live on a Bechstein grand situated just in front of the statue of Florence Nightingale. I wonder how they find such talented musicians to donate their time until I’m told that there’s actually a waiting list, because few pianists can practise in a London flat without disturbing the neighbours.
“Friends, Romans, Countrymen, my kingdom for a piano!” says my favourite musician, a virtuoso Australian pianist-composer called John Boswell Maver. He is 79 years old, has flowing white hair, and dresses all in black like a jazz player. I ask him if he takes requests, and he pauses imperiously for a moment, with hands poised and eyes closed, and then launches into a Beethoven sonata for me. He tells how he once experienced heart palpitations while playing the piano here and was immediately whisked away to one of the hospital wards.
On one of my most anxious days, I wander down to the Central Hall for a free lunchtime concert. It is advertised as music from Serbia, Hungary and Argentina, with special mention of the tango composer Astor Piazzola. This is exactly the kind of music that Simon and I have most enjoyed together. I walk in just as the musicians are introducing the ethnographic work of Bartok—Simon’s all-time favourite—and the dark-haired violinist begins to play one of our favourite dances. I stumble across the room, my eyes blinding with tears, and crumple in a heap at the bottom of the polished wooden staircase. Each successive melody brings more sobs and tears. I’ve hardly cried since that first evening in the ambulance bay and now I can’t stop.
A family of three shyly approaches me, asking if I need either company or a handkerchief. They tell me that their beaming toddler has just emerged from four months in intensive care following the successful transplant of a kidney from his father. In this extraordinary place, which strips away all pretensions and disguises, I feel closer to my fellow human beings than I ever have before.
CHAPTER 21
¡Ultreia!
Karma Dagpa, the Tibetan sage who picked up on Simon’s imminence to death the previous week, has made another, equally striking, observation. “The first month will be critical, but if Simon survives this then he’ll be OK.” Once again, I am surprised by my deep instinctive faith in his judgement. Having first established that, according to tradition, his reference is to a lunar rather than a calendar month, I batten down my emotional hatches and internally cross off each day that my husband continues to be alive. This is not something I can discuss with anyone else: it is my private conversation with fate.
Meanwhile the medical team has decided to check up on Simon’s progress in their own way by carrying out a second MRI scan. The previous MRI took place on Simon’s first full day in hospital and didn’t show any brain damage. Nearly four weeks of coma later, the consensus seems to be that brain damage is somewhere between extremely likely and inevitable. The euphemisms flying around include “He may not be the same person when he wakes up” and “The illness may have left a legacy,” but it’s the bald words “partial recovery” that send the most shivers down my spine.
St Thomas’ has a special MRI machine in the children’s section of the hospital that is particularly suitable for patients who are sedated. This means that they have to transport Simon—in his bed—from one end of the hospital site to the other. The technical preparation for this outing is extraordinary: it looks like the run-up to a lunar expedition. An apparatus that resembles an IKEA bookcase is clamped to the end of Simon’s bed with spare supplies hanging off it and a red insulated bag labelled with his home base: ICU 1. Philip and I watch the gang of nurses and technicians bustling around checking and re-checking every detail.
In the midst of this frenzy of activity, I suddenly notice a change in Simon. He’s lying quietly on his side with his eyes open, as if he’s thinking. I immediately make my way around the bed to speak with him, and I’m sure that he hears me. Philip does the same. Everyone else is carrying on with their preparations for the MRI and is far too busy to notice. It’s like a play within a play, with two completely different stories happening on stage at the same time.
Suddenly, out of the corner of my eye, Debbie the pharmacist comes into view. I rush up to her and asked her to come over to the bedside before it’s too late. She asks Simon three questions, and gets a clear nod in reply to each one, clear enough for her to note it in his clinical records. Like us, Debbie is grinning from ear to ear. She holds out a hand to shake mine over the bed. I am suddenly crying, yet wanting to whoop and cheer at the same time. Debbie warns us that this is only a tiny step. “Wretched boy,” I reply, “He’s taken 25 days to do this!” Seconds later the anaesthetist’s needle goes in, Simon is completely out for the count again, and trundled off for his scan. The timing couldn’t have been more precise—and more exasperating.
Philip and I retire to Shepherd Hall canteen for tea and chocolate. Debbie had suggested a drink, but that feels premature. It’s the first definite evidence of cognition that we’ve had, and we go over every detail again and again. We also agree not to share what’s happened with anyone else.
In the meantime, there are the MRI results to cope with. My instinct is that they’ll be OK, but when the significance is so huge it’s difficult not to be hijacked by anxiety. Our current ICU consultant, William, has told me that it will take up to four days for the neurologists and radiologists to complete their analysis, so we are preparing ourselves for some nerve-wracking suspense. What he doesn’t say is that the reason they need so much time is so that they can fully analyse the deterioration in his brain matter.
As it happens, I only have to wait a few hours—until the evening ward round, to be precise. William tells me that to everyone’s surprise Simon’s brain looks exactly the same as it did on 26th July. The results are so clear-cut that there’s no need for any further analysis. This means that the recovery prognosis is good, although it will take
an unknown length of time. “One day you’ll walk in and see him sitting up,” William says. In the meantime, he suggests that I continue with my alternative programme of care, particularly the aromatherapy.
Half an hour later I am cycling home along the river singing everything from “I could have danced all night” (My Fair Lady) to my old school hymn. No damage! Grey matter intact! My husband’s brain is OK! When I get home, I break my usual rule and drink a second glass of wine.
At 11pm, the phone rings. It’s the staff nurse from ICU. Because of the scan Simon had to be put back on the ventilator and the ventilation tubes have dislodged his tracheostomy tube. His nurse reacted brilliantly, immediately putting his hand over the hole, and Simon seemed to have no trouble breathing through his mouth. However William has decided that he needs to remain ventilated throughout the night which also means he needs to be heavily re-sedated.
I don’t take this news well, especially after the extra glass of wine, and welcome the suggestion that the ICU registrar ring me back with more detailed information. Soon afterwards the phone goes again. It is helpful to get the full medical explanation, graciously given in response to my angry questions. “Why didn’t they take him off sedation earlier?” (They wanted to wash him first). “Does he really need the tubes in again?” (This is what the consultant has decided). “Surely this makes him more vulnerable to infection?!” Bloody MRI, I think to myself. I stomp up to bed, angry and helpless. Mercifully, within a few minutes exhaustion takes over and I’m asleep.
The next morning, I’m tempted to stay away until the tracheostomy has been replaced but decide it’s more important to see the ward team, apologise for my bad temper the night before, and re-establish my equilibrium at the bedside. The strategy fails. The consultants are busy elsewhere, so the tracheostomy doesn’t go back in until lunchtime. Sedation levels are kept high, apparently because they’re short of staff. Simon is back in his old uncomfortable bed, because the new one borrowed from the children’s ward got damaged during the scan.
The Buddha proposed that however difficult the external circumstances, we have a choice whether to get angry or frustrated. If we do get enmeshed in negative emotions nobody will benefit, least of all ourselves. “Holding on to anger is like grasping a hot coal with the intent of throwing it at someone else: you are the one who gets burned,” he said. I can see the logic, but the ups and downs of the past 24 hours have left me emotionally exhausted. It feels like someone has been driving a JCB digger backwards and forwards over my nerve endings. The best I can do is to settle down and offer some Medicine Buddha prayers by the bedside, both for Simon and for his new neighbour John, who looks in a bad way. Any remaining anger turns to sadness when halfway through the prayers John passes away.
It’s such a rotten day on the ward that I almost forget about the positive MRI results from the day before. When I get home in the evening, I grumpily post them on Facebook. Almost immediately, euphoric messages begin to pour in from around the world. “Tears of joy today with your news. Tears from so many!” writes one of my board members, who is helping to run our conference in France. “Oh my god, I am utterly speechless. And awestruck. And how wonderful! (and mysterious – but that’s Si all over)” said a friend in Hertfordshire. From the USA: “Thank God! Thank you, doctors and nurses and attendants! Thank you, Alison and all around Simon! Let’s go, complete and total recovery! That’s what we want!”
One branch of our family had lost a wife and mother earlier this same year in ICU, and I feel particularly chastened by their elated response. Their test results would have been at the other end of the scale, and I can literally feel them breathe a collective sigh of relief for us. I reflect that it was worth getting the MRI done just for that. Yet here I am feeling like some kind of emotional Scrooge: we’re not out the woods yet. From my current vantage point, I can see how readily we construct deceptively safe and reassuring worldviews for ourselves, like birds building nests in windswept trees. And, I add silently to myself, we’re still in the first lunar month.
Inscribed on the inside of both Simon’s and my wedding rings is the Spanish word ¡ultreia! We first came across it on the pilgrimage that we did together across Northern Spain to the medieval city of Santiago, where we got engaged. We encountered ¡ultreia! inscribed in wild splashes of bright yellow paint on the rocks at the tops of high passes but couldn’t find it in any of our phrase books. Later we discovered that it’s a medieval term that doesn’t really translate into English, meaning something like “Keep on going, carry on!” Every now and again I twist my wedding ring around my finger and silently mouth “¡ultreia!” to myself.
On both weekend days, Simon is nursed by a tall American called Rick, who with cool professionalism successively eases him off the ventilator, the Propofol and most of his cannulas. The tracheostomy is now rigged up to nothing more than a small plastic cap, incongruously called a ‘Swedish nose’. I can see this is a big achievement—back to where we were before—even though I have no energy to celebrate. On the Facebook page, our friend Roger picks up my mood exactly. “From my own caring experience I know the uncertainty as things unfold. Know the hospital life.”
WEEK FIVE
BREAKTHROUGH
CHAPTER 22
The second lunar month
The following morning the sky is a particularly clear and luminous blue. As I cycle to the hospital along Kennington Road, past the newsagents, the kebab shop and the Imperial War Museum, my mood shifts. It’s the 29th day since Simon fell ill, and the start of the new lunar month. For the first time, throwing caution to the winds, I allow myself to believe that we might really make it through.
Simon has now been successfully weaned off Propofol, the anaesthetic that killed Michael Jackson, and it has been replaced by Quetiapine. A candid if somewhat tactless consultant had previously described this new sedative to me as “the chemical straitjacket that is reluctantly brought out of the cupboard for industrial cases.” At least he felt he didn’t have to sweet talk me. The new consultant for the week—a gentle and surprisingly youthful-looking man called Richard—reassures me that Simon’s drug levels are high but not unprecedented: what’s exceptional is the length of time that he’s taking to come round. Richard notices the photo of Simon’s bicycle on the whiteboard and confides that he is also a long-distance cyclist, which establishes an instant rapport between us.
Leaving Simon to twist and turn in his bed, I cycle away mid-morning to participate in a Board of Directors meeting. The previous week I had decided it was time to re-enter the world of work—both for the sake of the charity that I work for, and for my own sanity and self-respect. In between the hospital visits I’d managed to write a couple of Board papers and been surprised at how energising and enjoyable I’d found that. I had told the Board that I would be back at my desk two weeks from now. Various ICU staff have intimated that Simon will need to remain in hospital for at least four weeks after he eventually comes out of the coma, and this will give me the opportunity to fully re-engage with my work responsibilities. As Margaret Shepard said, sometimes your only available transportation is a leap of faith.
The Board meeting is in France so I am to participate using Skype. It proves a disaster. I’d checked previously that there was a wifi connection in the local Starbucks, but not being a coffee-drinker didn’t realise I needed to purchase and register a Starbucks card to be able to access it. When I got a bit hysterical the manager kindly connected me using her own password. Not an experience to repeat, and a helpful reminder of my emotional fragility. This was followed by an electric storm of interference and long pauses in which I felt everyone else was talking among themselves or making facial gestures that I couldn’t see. It was enormously comforting to return to the hospital and debrief with Philip in the café. I wonder if I am becoming institutionalised, and whether I will ever be able to pick up my life where it abruptly left off.
At my brother’s insistence I visit my local GP surgery. I take the first
appointment of the day—7am—so as not to disrupt my schedule in ICU. The appointment provides me with a sick note for my workplace, a sleeping tablet prescription (should I need it) and the information that I am eligible to ask for counselling for myself (should I desire it). What it doesn’t do is provide any human warmth or empathy. My guess is that the young newly qualified female doctor is terrified of me taking up more than my allotted time slot. Her boundaries are as impenetrable as Alcatraz, and when we discuss the crisis that Simon and I are experiencing she could have been talking about a verruca.
To raise my spirits I come up with the outrageous idea of meeting my sister Suzy for lunch in Brighton. Over the past few weeks Suzy has been prevented from visiting the hospital by a cold, followed by conjunctivitis. So I decide to visit her instead, taking my first trip out of London since Simon first became ill. Philip is delighted at the idea and offers to spend the morning on the ward in my place. When Simon goes quiet at 10am after a sleepless night, I take this as my cue to cycle over to Victoria Station and catch a mid-morning train south. I anticipate that the journey will bring up some emotion in me but it turns out to be oddly matter-of-fact: nothing has changed, the world is just as we left it. My thoughts rise to the surface like bubbles in sparkling water as I look out at the people so busy in their houses and gardens, rushing around in cars, and disappearing in and out of shops. How crazy that we make life so complicated, when it’s fundamental things such as our health that matter the most!
Brighton is huge fun. It’s now a cloudless if gusty day, and Suzy and I have a girlie lunch at an outdoor restaurant overlooking the Palace Pier: salads, a shared veggie platter, and a glass of wine. We follow up with ice creams on the beach and a brief rummage in TK Maxx. It’s my perfect frivolous day out. I buy a tin in the shape of an ice cream van filled with marshmallows as a gift for the nurses. I head back to the ward full to the brim with brightly coloured images and experiences, like a child returning from a school trip, and the ice cream van creates an entirely disproportionate amount of pleasure and excitement.