“You can do it,” nodded the old ladies from their place at the wax machine.
“Give me your hand,” said the physiotherapist. “I won’t let you fall.”
It also lulled me into a false sense of how accepted and wanted I would be, as a child who could barely walk, barely hold a pen, had lost the ability to run, ride a bike, catch a ball, feed herself, swim, climb stairs, hop, skip, a child who travelled everywhere in a humiliating outsized buggy. I was loved there, I was special, I was accepted, I was cheered on: everyone there wanted only the best for me. It gave me no preparation, no sense of what was waiting for me when I eventually went back to school, where people would call me a spaz, a moron, a joey, would demand to know what was wrong with me or what they would catch from me. Where people would trip me up just for a laugh, would spit on me and pull my hair, tell me I was diseased, a retard. Where the education authorities agreed to move my classroom downstairs but not the lunch rooms, so every day I had the choice of either going without lunch or climbing the stairs the only way I could, on all fours, like a bear, like a baby, with the whole school watching.
We do what we have to do to survive; as a species, we are inventive in the face of adversity. Robert Frost said, “The best way out is always through,” and I believe this to be true but, at the same time, if you can’t go through, you can always go around.
I ate a lot of packed lunches in the downstairs toilets, with the door locked, my feet tucked up so no one could locate me. The smell of bleach, of a certain type of paper towel, always takes me back to this: misshapen peanut-butter sandwiches, eaten alone, cross-legged on a cistern.
—
The illness comes in and out of focus for me, in adulthood. I can go for days without thinking about it; at other times it feels like a defining event. It means nothing, it means everything.
It means I have to scrawl succinct yet numerous sentences into those too-small spaces on forms that ask, “Any other medical history?” It has meant I need to explain certain things to people I spend time with: why I might fall over or persistently drop cutlery or knock over mugs, why I can’t walk or cycle long distances, why I need to do a series of exercises and stretches several times a day.
It means that my perception of the world is altered, unstable. I see things that aren’t there: lights, flashes, spots or rents in the fabric of vision. Some days, holes will crackle and burn in the centre of whatever I look at, and text disappears the minute I turn my gaze upon it. The floor may lurch, like the deck of a ship. I can turn my head towards a noise and my brain will confidently and suddenly inform me that, instead of standing up, I am lying down, that the room is the wrong way up, that everything is not as it looks. I can turn over in bed and somehow my cerebellum won’t keep up and will be left facing the other way; I have to close my eyes, press my fists to my face, breathe deeply until my brain decides to catch up with me. My two-year-old child can knock me over with very little effort.
“Is it just me,” I will ask my husband, “or is this sofa tilting sideways?”
“It’s just you,” he will answer patiently.
“And the ceiling isn’t shaking either?”
“No,” he will say, turning a page of his book, “it isn’t.”
It means that my life has involved, for almost as long as I remember, a series of cover-ups, smoke-screens, sleights of hand. I sleep with a light on so that I don’t fall if I have to get out of bed at night. I don’t drink alcohol or take drugs, never have and never will because I cannot touch anything that might affect my already shaky motor control. I stammered appallingly for most of my childhood and adolescence; I still do, on occasion, when confronted with a hostile voice, a sceptical stare or the bald head of a radio microphone.
I fall or stumble if I don’t concentrate. When I ascend or descend stairs, I have to look down at my feet and apply myself to the task of meeting each tread. Don’t ever talk to me when I’m climbing stairs or negotiating a doorway: these acts require my full attention.
I will never play Blind Man’s Buff or surf or wear high-heels or bounce on a trampoline. Tables crowded with cutlery, water glasses, jugs, vases, napkins present me with huge problems. I sit down at them with a sense of dread, eyeing them as you might a particularly challenging exam paper, with a mixture of fear, anxiety and incipient humiliation. It is a sensory, spatial overload that can result in spilt water, dropped forks, broken glass and peculiar, disorienting inroads into my vestibular sense: too many objects, too many demands on my faulty senses, too many things to navigate.
I carry a lot of bruises, blackish-purple leopard spots down my legs and sides, from encounters with bookcases, door jambs, table corners, chair legs. I dread book-festival stages with steps—to fall, in front of an audience!—but I refuse, absolutely, to accept assistance. When I carry babies, especially new ones, on stairs, I do it like my primate ancestors, employing my spare hand as extra ballast.
My left arm is pretty useless: it can just about hold a bag of shopping or the hand of a child or steer a bike or a buggy, but anything more than that is too much. I was in a Chinese restaurant with my friend recently: I lifted the teapot with my left hand to pour her a drink and missed her cup by about five inches. Scalding dark liquid shot out over the table, over our food, our chopsticks, our napkins, causing us both to dissolve into inappropriate laughter.
“Sorry,” I got out. “My left hand isn’t much use.”
“I see that,” she replied, mopping herself down. “Maybe you should just sell it.”
“Maybe I will,” I said. “For sale. One useless hand.”
It also means I have a powerful aversion to small, enclosed spaces.
When my first child began to walk, I took him to a soft-play centre near where we were living, in London. I had never been to such a place. It was an enormous edifice, several storeys high, made up of cushioned planes and steps, spiralling slides, pits filled with brightly coloured balls. How he loved to run in his drunken-sailor gait along its corridors, to climb the stairs, to dive face-first into the balls.
On the highest level, he was ahead of me as we ran along a neon-bright padded floor and then he vanished into a narrow blue tunnel, speed-crawling into its shiny plastic mouth. I was just able to see his socked feet disappear.
I crouched by the tunnel’s mouth; I called his name. “Come back,” I said.
He laughed, by way of reply.
I straightened up. I assessed the play structure. Was there any other way to get to where he was without using the plastic tunnel?
No.
I crouched down again. The tunnel was probably the width of three hand spans—I would have to squeeze myself in, possibly wriggle like a snake. And it was long, longer than my body. It would take several seconds for me to reach the other side.
There was my son, framed by the tunnel’s exit, like a creature seen at the wrong end of a telescope, and he was beckoning, saying, come, come.
Is it terrible to admit that I still hesitated? I couldn’t, in that moment, think of anything I would rather do less than enter that narrow plastic space, submit myself to its confines.
I did, of course. Maternal love is a great force, greater perhaps than all others.
When I got to the other side, I was shaking, stricken. My son patted me on the cheek and muttered what I said when I wanted to reassure him: “ ’S aright. ’S aright.” It’s all right.
—
Coming so close to death as a young child, only to resurface again into life, imbued in me for a long time a brand of recklessness, a cavalier or even crazed attitude to risk. It could, I can see, have gone the other way, and made me into a person hindered by fear, hobbled by caution. Instead, I leapt off harbour walls. I walked alone in remote mountains. I took night trains through Europe on my own, arriving in capital cities in the middle of the night with nowhere to stay. I cycled blithely along what is dubbed “South America’s Most Dangerous Road,” a vertiginous, crumbling, eroding track cut into a steep peak,
the verge of which is liberally punctuated by shrines to those who have fallen to their deaths. I walked across frozen lakes. I swam in dangerous waters, both metaphorically and literally.
It was not so much that I didn’t value my existence but more that I had an insatiable desire to push myself to embrace all that it could offer. Nearly losing my life at the age of eight made me sanguine—perhaps to a fault—about death. I knew it would happen, at some point, and the idea didn’t scare me; its proximity felt instead almost familiar. The knowledge that I was lucky to be alive, that it could so easily have been otherwise, skewed my thinking. I viewed my continuing life as an extra, a bonus, a boon: I could do with it what I wanted. And not only had I tricked death but I had escaped a fate of incapacity. What else was I going to do with my independence, my ambulatory state, except exploit it for all it was worth?
A teacher at school gave us John Donne’s Sonnet X to study, and the poet’s depiction of Death as an arrogant, ineffectual, conceited despot made me smile in recognition:
Death, be not proud, though some have called thee
Mighty and dreadful, for thou art not so…
…nor yet canst thou kill me.
This insouciance stopped the minute I had children, when suddenly I worried that my two-fingered taunts to Death might come back to bite me. What if Donne’s proud, vengeful personification of Death decided to return and seek recompense for all my insolence? What if it took me, took my baby? When you engender a life, you open yourself to risk, to fear. Holding my child, I realised my vulnerability to death: I was frightened of it, for the first time. I knew all too well how fine a membrane separates us from that place, and how easily it can be perforated.
—
When I told a boyfriend a shortened version of what happened to me as a child—more in the spirit of explanation than anything else—he looked appalled, as people mostly do, and said, “You were so unlucky.”
I remember feeling surprised because unlucky is the opposite of how I view it. They thought I would die; I didn’t. They thought I wouldn’t walk or swim or hold a pencil again; I did. They thought I would need a wheelchair for the rest of my life; the wheelchair was returned to the NHS after a year or so. They thought I would need to attend a special school; I didn’t. They envisaged for me a life of limitations, institutions, incapability, dependency.
I consider myself steeped in luck, in good fortune to have avoided the fate the doctors decreed for me. I have been showered with shamrocks, my pockets filled with rabbits’ feet, found the crock of gold at the end of every rainbow. I could not have asked for more from life, to have been spared what might have been. I could have died there in that hospital but I didn’t. I could have been condemned to a life of immobility but I wasn’t. I dodged a bullet—many, in fact.
I surfaced one day in hospital to find a man leaning over my bed. He had wide-spaced, staring eyes, a heavy gold chain around his neck, not dissimilar to the one our neighbours’ Labrador wore, and wispy whitish hair standing out around his head. He was familiar and strange, all at the same time.
“Hello, hello,” he said, “what have we here?”
As soon as he spoke, I realised that I knew him from the television. Children would write to him with their wildest wishes—to fly an aeroplane, to look after the elephants at the zoo, to tap-dance on stage—and he, like a genie, would grant them.
And now here he was, at my bedside. He stared down at me, with a piercing, assessing, slightly haughty gaze; I stared back in bafflement, astonishment.
Years later, I will be in a traffic jam, waiting in line for a red light to change, my children in the back of the car, and the news comes on the radio. The headline item is that this man’s numerous paediatric hospital visits were not what they seemed. I will sit with my hands resting on the steering wheel, staring through the rain-flecked windscreen. I am shocked and yet not shocked at all. I recall the moment he turned to the nurse and said, “You can go. I’ll look after her.” The nurse shook her head and stayed.
I listen to the newsreader for a moment, then jab at the radio, to silence it. I don’t want my children to hear, don’t want those words to spiral into their uncomprehending ears. Later that evening, I will call my mother and remind her that he came to see me.
She will take a sharp breath and say quickly: “Where was I?”
“I don’t know,” I will say. “You weren’t there. But it’s okay. He didn’t lay a finger on me.”
“Are you sure?”
“I’m sure. The nurse wouldn’t leave. She stayed with me the whole time.”
That background figure in a white dress and hat, moving about the room behind this man with his tracksuit and his bracelets and his loud voice and his questions about how I was feeling and when I would be up and about again, and how about that lovely photo on the bedside cabinet of me in my ballet leotard?
She never left the room. She shook her head when he suggested, again, that she leave, that she take a break. I was on twenty-four-hour watch, she explained. I remember her as young, sweet-faced, with a brown bun, happy to read stories to me for hours. She stayed there, hovering behind him, refusing to abandon her post: another saviour, another seraph in disguise.
Before he left, the man gave me a book, signed by him. He tucked it in between the mattress and the metal bars around the bed. It was about making your own Hallowe’en costumes. My mother read it to me the following day, when she came to visit. Together, we looked at the diagrams and illustrations and talked about what we would make when I was better. I kept it for years, that book; I followed the instructions to make a severed head out of papier-mâché, covering a balloon in strips of newspaper and leaving it to dry in the airing cupboard.
Recently, going through a box of my old books to find something to read to my children, I came across the book again. I pulled it out, opened it, looked at his signature. Then I crossed the room and jammed it into the heart of the wood-stove. It burnt quickly, ferociously, leaving behind a ghost of its shape in black, flaking ash.
—
It is the strangest sensation, not being able to move. It is not a heavy feeling, as you might imagine, but light. You inhabit your being as you might a house: the body is a structure within which you must live, as best you can, flitting from one wall to the next. The framework is inert but you—that invisible, interior part of yourself—are anything but. Your skin registers heat, cold, the crease in a bedsheet, the weight of a blanket, the rasp of a nightdress label but it is nothing to do with you. Not any more.
What to do, when you cannot move, when you are bedridden? How to occupy, divert and distract yourself? I spend a long time staring at the ceiling above me, the clock on the wall, the rubber seal that runs around the door. I memorise each and every detail of the room, the way the paint on the far wall is a slightly paler shade of cream than it is on the others, the strip lighting that glows yellow at the edges and white in the centre, the way the tap drips, once-twice, in quick succession and then not for ages. I gaze out of the window, watching the sunlight thrown from car windscreens to skitter on my ceiling. I absorb the strange snippets of conversation, released like soap bubbles into my room as people flit past my windows. I am given to begging anyone who comes near to read to me. My mother spends hours narrating the tales of the Brothers Grimm, a book of Bible stories; my father favours a compendium of Irish folktales. I lie there and consider Moses afloat on a river, coming to rest in a bank of reeds, David selecting the perfect stone with which to load his slingshot, Finn McCool’s clever wife, Oonagh, breaking the teeth of a rival giant with an iron griddle, hidden in a loaf of bread.
Eventually, a neighbour lends a selection of story tapes: never have I seen such things before. A solution at last. A tape-player is set up beside my bed and I can listen to Felicity Kendal reading My Naughty Little Sister and a rather sonorous male voice intoning the tales of Beatrix Potter.
Lettuce has a soporific effect.
He wore his galoshes.
&n
bsp; Jemima was a simpleton.
But neither of them made any remark.
I roll these words around my head like pebbles; I repeat them to myself. I tuck them away.
I listen to the tapes over and over again, often at night-time, when the hospital is filled with that curious humming almost-quiet, when the nurses’ shoes squeal on the floors, when the dark from outside reaches in through the slits in the blinds, when the hands on the clock opposite my bed leap and stop, leap and stop. The bad part is when the tape finishes and clicks off with a mechanical thunk and I must wait until someone comes to turn it over for me. The awfulness of the silence then, its crushing, rushing stillness.
On such a night, I am awake. My watching nurse has said that, no, I cannot listen to another side of a tape: I must sleep, she says, I need to rest.
My headache pulses away, a bright, daemonic metronome. I look out, always, from behind its blinding white mask. The noise of the television from the ward has ceased, so I know it is late; it is deep into the night. Am I falling into sleep or something else when I hear the noise in the corridor outside?
Footsteps, the fluting voice of a child, a rhythmic noise like a toy being dragged along the lino.
The child says something in a high, enquiring tone, and the nurse tells him to be quiet.
“Hush,” she says. “There’s a little girl dying in there.”
I inserted a scene like this into my third novel. I recast it, reimagined it, repositioned it. It was the only time—until this—that I ever put anything to do with my encephalitis into writing. I made the girl in the bed into the sister of the protagonist; I made the child outside into a little boy, pulling a toy train. I made the nurse beside me jump up, embarrassed and shocked, to shut the door. I used to read it whenever I did public events for the book, which strikes me now as an odd choice. Why did I do that? Why read a scene drawn from what is possibly one of the worst moments you could ever live through—a child, learning they are dying?
I Am, I Am, I Am Page 14