The gradual re-booting of Simon’s brain is an unfathomable process, during which our main source of professional support comes from an inspirational team of occupational therapists. As soon as mobility issues are resolved they move on to the ‘higher level executive skills’ that he will need to resume his job. However there’s nothing high-tech about this process—instead, it’s embedded into daily life situations. For example: to strengthen Simon’s ability to multi-task, whenever we go out for a walk I am expected to simultaneously set him mental challenges such as listing all the countries that begin with an ‘A’. The one time we try this, the breadth of Simon’s general knowledge threatens to make me, not him, lose my footing.
It is also suggested that he strengthens his cognitive functions by helping out in the kitchen. On my birthday he triumphantly gives me a stack of the most complex cookery books he can find—Yotam Ottolenghi, never Jamie Oliver—and announces that he will cook me a recipe of my choice every day. I try to put a brave face on the ensuing chaos and expense.
While Simon flourishes, surrounded by people who encourage and support him, my situation is the exact opposite. In many ways this new phase is more difficult for me than the dramatic highs and lows of ICU. His precipitous discharge from St Thomas’ eight days after coming out of intensive care has plunged me into the unfamiliar role of full-time carer. I struggle to manage a complex diary of outpatient appointments. I am expected to provide three nutritious meals each day, to build up his strength. There are also miscellaneous tasks such as hunting down shoes with Velcro fasteners, because with swollen hands Simon can’t tie his own laces. I desperately miss the personal time for reflection and meditation that played such a critical role in sustaining me through the hospital vigil.
Life is further complicated by the fact that I’ve gone back to work on a half-time basis, partly because we’re getting very low on cash. Some of my family think this is too soon. Other friends say the opposite: that it’s important to nurture the other aspects of my personality so that I have an independent perspective to bring to our relationship. Although it’s difficult to pick up the reins of running a small charity again, I quickly find out that my working environment is a welcome refuge from the non-stop demands of being a carer.
To cap it all, I can’t sleep. The minute I lie down in bed beside Simon all my senses seem to shift into high alert mode without any possibility of dozing off. My sister Kate points out that after weeks of watching over Simon’s bed like a hawk this is hardly surprising. So each night I wait until he’s gone to sleep and then creep downstairs to toss and turn on the sofa.
I take some comfort from the advice of my Buddhist teacher Lama Zopa that we can learn to enjoy problems just as much as we enjoy ice cream. The Tibetan Buddhist practice of thought transformation or lojong proposes that one of the most direct ways to develop positive qualities is through being rubbed up the wrong way. Just as wood is polished by sandpaper, the people who most irritate and provoke us are actually our most precious friends and allies because they provide a unique opportunity to develop qualities such as patience. Taken to its limits, lojong will eventually help us consider our problems not only helpful but even pleasurable and ultimately necessary for our happiness, at which point they effectively disappear. As Victor Frankl said: “When we are no longer able to change a situation, we are challenged to change ourselves.”
In principle this makes complete sense to me but in practice, when every day is a non-stop torrent of demands and anxieties, I’m definitely being put to the test. Our first row occurs when we board a double-decker bus for an outpatient appointment. Simon is still unsteady on his feet and leaning on a crutch. “I’m sure someone will stand up for you,” I say, glaring at the seated passengers. Both they and he ignore me; he insists on struggling up the stairs, and I feel angry and humiliated. In the local opticians he chooses the most expensive pair of glasses and lenses for himself, oblivious to our straitened means, while I stand by helpless and unwilling to contradict him in front of others. My new roles as secretary, treasurer and gatekeeper demand all the sensitivity and diplomacy I can muster. It’s a delicate business, especially when the last thing I want to do is to impede the return of his independence and self-reliance.
Simon is charmingly unaware of the difficulties he leaves in his wake. One of the characteristics of a brain injury is that the person concerned is rarely aware of their limitations. A friend tells of a visit to a residential home where the encephalitis patients simply couldn’t understand what they were doing there. Not only Simon but most of the people around us are equally unaware of our daily challenges and constraints, and since it doesn’t seem appropriate to spell them out in public I become adept at picking up the pieces and covering for him.
“My religion is kindness,” says the Dalai Lama. Buddhism proposes that the source of all true happiness and the very meaning of being alive are to do whatever we can to benefit others. When we reach our deathbed nothing else will matter. And since we are only one person, and others are numberless, what justification can there be for putting our own interests ahead of anyone else? I find this the most inspiring call to action in existence. As the Dalai Lama also says, showing kindness to others is not religious business but human being business, and the key to the survival of our race and planet.
The challenge is that we have to start somewhere, and one of the best places to start—although not necessarily the easiest—is through showing kindness to our nearest and dearest. This is what I’m now being called upon to do. Relentlessly.
I develop an intense admiration for the heroism of single parents who are able to put their own needs aside and without respite take sole responsibility for the welfare of another human being. Simon may not be a child, but like any parent I have the experience of never being off duty. What phone calls need to be made today? What clothes will he need? What mood is he in? Keys, phone and wallet are constantly misplaced. He loses his credit card five times, and repeatedly forgets the pin number. We come home from an afternoon out to find that he has left the front door wide open. I am constantly on my guard for all the things that can go wrong.
The chaos is compounded when a small, charming and untrained springer spaniel puppy called Lola joins the household. This is the liver-and-onion-coloured creature that Simon has longed for all his life, and which I promised to him in whispers when he was deep in his coma. Man and dog quickly become inseparable. Both the Ancient Greeks and the Celts believed that dogs have curative powers, and I watch as Lola gets Simon out of bed in the morning, as her feeding and walking routines help him regain a sense of responsibility, her antics make him laugh again, and her cuddling up calms him down last thing at night. Begrudgingly, I have to give her most of the credit for transforming him from a thin, frail and wobbly convalescent to a fit and energetic man who exudes good health. Better a springer spaniel than the black dog of depression, I tell myself.
CHAPTER 29
Loneliness
“Have you strangled him yet?!” Barbara is a former nurse, now a Buddhist nun, and it’s the most helpful thing that anyone has said to me in weeks. Most conversations go “How is Simon?” and then in quick succession, “You must be so happy and relieved!” A smaller number of people will ask, “How are you?” usually because they’ve been through a comparable experience themselves. One friend writes: “I hope this finds you strong and happy”. The honest response would have been, “No, actually, I’m feeling weak and miserable,” but I don’t have the desire or energy to type that into an email. It seems ironic that the times when we most need support are often when it’s the hardest to ask for it.
Although I’m spending more time with my husband than ever before, I find myself unexpectedly lonely. Our experiences are proving to be so different, and he has lost the capacity to understand this. While Simon enjoys his new spaciousness, I am suffering from cabin fever. He feels liberated, and I feel enslaved. He wakes each morning full of energy and curiosity while I struggle with
exhaustion. Simon tells me that he wants to give me tender loving care but the next moment gets completely distracted and is making extra demands on me instead. On Valentine’s Day he memorises a beautiful and romantic poem in Hungarian but forgets to recite it to me and falls asleep before I come to bed.
As soon as our month of outpatient appointments is over we de-camp to our cottage in Devon. We purchased this some years earlier as an escape from London and a place to take our mothers on holiday. Interest rates were at an all-time low and the income from our London lodger covered most of the running costs. I feel extremely fortunate to have the option of a slower pace of life, fresh healthy food, and mile upon mile of beautiful country footpaths for Simon to explore as he regains his strength. I know that if he gets into any difficulties somebody will bring him safely home, in contrast to the hidden dangers of the Northern Line. Fortunately I can do most of my work at long distance, and once our new lifestyle has stabilised a bit I start commuting back to the office in London for three days each fortnight.
Most of our friends understandably conclude that we now need some private space. They probably imagine us enjoying an idyllic rural existence. They may also be assuming that we’re cocooned by our families whereas that’s actually not the case – they need their recovery time as much as we do. In London I could rely on the loyal support of friends such as my old college mate Sue, who crossed the city once a week bearing a home-cooked meal to share with us, but here I know almost nobody. As Stevie Smith would say, I’m not waving but drowning.
To my surprise, I’m also missing St Thomas’: its routine and structures, its milling crowds and varied spaces, and most of all, the wonderful supportive nursing team in ICU. I calculate that the nurses will have cared for hundreds of other patients since we left, so I’m sure the attachment is one-sided. Nevertheless I still puzzle over the sudden severance of the profound bonds forged between human beings in their most intimate and vulnerable moments. It’s like a love affair that ends with abrupt finality, to the bafflement of the emotions.
There are some advantages to being alone. I can see I’m not good company and I dread becoming a trauma bore. The intensity of our recent experiences continues to overshadow all my thoughts and conversation, drawing me back in like a magnet and dwarfing everything else. One of the bonuses of the hospital vigil was that it gave me licence to be completely candid. Life was raw and visceral, with ordinary convention stripped away. In contrast, I now find myself back in the subtle web and constraints of normal human discourse. It’s not exactly fun for anyone to listen to my problems, and Simon wants and needs a level of discretion about how his recovery is progressing. Some wounds are best licked in private.
When we do see friends, they invariably say “You’re both looking so well!” It makes me glad for them, because it means they can take us off their worry list. However it closes the door to sharing how I really feel. And perhaps that’s just as well, when most of the time my tears are ready to flow at the slightest encouragement. Instead, I spend any spare time in the company of my journal, which has perfect listening skills, doesn’t censure me for being unable to move on, and never insists that I re-immerse myself in activities that are now of no interest to me.
When a colleague asks on the phone if I’m getting any ‘me time’, I find tears welling up. “In the very early hours of the morning,” I think to myself, “and occasionally there’s time for a bath.” For the next few days this thought keeps popping up in my head and I watch how it catalyses resentment and self-pity. One of my Buddhist teachers famously advises that “less desire means less pain,” and it is clear that the desire for ‘me time’ is simply making things worse. I drop the idea.
One of the challenges of wife-as-carer is the effect it has on the subtle configuration and calibration of a marital relationship. The independent feminist who signed up for a late marriage in which both parties pursued fulfilling careers and spent a few evenings each week together now finds herself joined to her husband at the hip. Not that he is exactly the same man that I married. One day I watch in shock as Simon, once the most gentle and patient of beings, angrily kicks a pile of DVDs across the room. His neurologist later admits that outbursts of anger are a common side effect of an anti-seizure medication called Keppra that he has prescribed for the coming year. “Some people get divorced because of it,” he adds cheerfully. He had omitted to mention this to me. “For better, for worse,” I find myself muttering under my breath.
I can never predict what any day will bring. Here’s just one example, which I privately label ‘post-encephalitis DIY’. Simon decides to patch up some missing carpet in our downstairs room, the kind of job he used to do with ease. He starts by taking our entire living space apart, repaints some wooden bookshelves and leaves them out overnight in the rain. Everything rests in confusion for a further week, at which point he orders a mitre saw to repair the skirting boards, but by mistake he gets it delivered to our London address. Meanwhile he paints the skirting boards and leaves them out in the rain, while forgetting for a second time to wear his painting overalls. He goes to London to collect the saw and on the return journey leaves it behind on the train. For the next month our living room looks like an abandoned squat. On Christmas Eve there is a Herculean tidy-up. Simon’s mother arrives to a spotless house, can’t see the problem, and upbraids me for complaining that her son is hard to live with. As a patient recovering from a life-threatening illness, Simon can do no wrong.
I come to the conclusion that however frazzled I feel inside, the most skilful response to all these challenges is to remain resolutely upbeat and un-flummoxed. I take an imaginary rosy-cheeked Devon farmer’s wife as my model and gradually learn to go with the flow. We come up with a new nickname for Simon—‘spanielbrain’—which serves as useful shorthand whenever things don’t go to plan. Relaxed, amiable and good-humoured is proving far more important than tidy, organised or value for money, and my goal is simply to weather the chaos that each day brings and hope that our life won’t always be like this.
Alongside the daily struggles, there are the golden moments of being alive together in this wonderful landscape, which suffuse me with joy. On a cloudless day we drive up onto Dartmoor, where the air is so clear that we can see the sea glistening on the horizon twenty miles to the south. Lola is running around in huge circles through the heather, ears flapping, and Simon is silhouetted against a dreamy blue sky. Another time we are down on the windswept beach, the puppy running across the sand like a streak in a post-Impressionist painting echoed by the larger streak that is my husband. Later that evening master and dog relax in front of the wood stove while we drink tea from china cups and saucers and download one of our favourite films to watch together.
Towards the end of a country walk when dusk is falling, I used to look in through cottage windows on scenes like this and wonder what it would be like to be safely on the inside. Except that I now know that nothing is safe. Will I ever forget what I’ve learned? I hope not. Some people have suggested that my continuing sense of anxiety is a sign of depression. Perhaps, but it is also a new realism: that nothing in the physical world is reliable or to be trusted, that the people who matter the most to us are deeply vulnerable, and that every situation can change in an instant. With a quick flick of the mind, I am back in that moment when Simon walked up to the house looking as if he was eighty years old, stumbling and incoherent, or when he was twisting and turning in agony in A&E. It’s like opening the door to a locked-away room, which I quickly shut again.
CHAPTER 30
Gratitude
Exactly one year after Simon fell ill three things happen. He wakes one morning to find that his right hand has come fully back to life, he is fully discharged by St Thomas’ as having made “a wonderful recovery”, and we decide to throw a party.
We are now re-established in our London home. Simon has resumed his role as Director of St Ethelburga’s Centre for Reconciliation and Peace on a half-time basis, and I am back wor
king four days each week at the Foundation for Developing Compassion and Wisdom. One sunny Saturday morning a long-forgotten sound invades my consciousness—Simon playing arpeggios on the piano. He is celebrating the full recovery of his hand. Sensation has been building gradually over the past months: only recently, he triumphantly announced that for the first time he’d been able to turn the key in the front door. There’s something about having the strength back in his right arm and hand that seems richly symbolic of his return to health. I want to dance, laugh and cry all at the same time.
The final visit to Simon’s neurologist proves to be a milestone. Fortunately we’ve both taken the day off in some vague prescience of its emotional significance. It’s an afternoon appointment, which gives me time to go out and buy some orchid plants to take as gifts. I get back to find that Simon has printed off photos of himself rowing on the estuary in Devon with Lola, bearing the title ‘Simon Keyes. Suspected Encephalitis, ICU 1, 25th July – 1st September 2011.’
After seeing the neurologist we walk together along my old accustomed route up to the ICU ward. I discover that Simon doesn’t know the way—and why should he? These corridors are full of my memories, not his. For the first time we press the buzzer together and arrive with our gifts at a reception desk full of new faces. I ask if any of the consultants we used to know are on duty today. “Richard is upstairs on ICU 2, why don’t you go and find him?” In ICU 2 the young consultant is on the phone, so he asks the nurse to “find out what those people want.” Meanwhile, other nurses come up to us grinning from ear to ear. “I can’t believe it’s you! You look so well!” they tell Simon. Richard joins the group: “Now I remember! The cyclist in Bed 12! The one with the picture of the Dalai Lama.” “Thank you for coming back to visit,” he says, “it’s the best possible gift,” before being called away to the latest emergency.
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