The word “cerebellum” is Latin for “little brain.”
—
Because I am only eight, and not much spoken to by doctors—beyond them asking me, do you feel that? Can you do this? Are you able to follow the path of this torch?—I must develop new methods of interpretation. I am aware that there is a great deal being said outside in the corridor, along phone lines, behind closed doors, in the scribbled notes at the foot of my bed. I become instead a listener, a witness. I glance from the faces of my parents, standing on one side of my bed, to those of the doctors, standing on the other. I learn to be alert to nuance, to inflexions of brows, to minute alterations in facial expressions, to the setting together of teeth, the gripping of fists, to my parents’ effortful, watery smiles. I search for meaning in the gaps between words, between questions, in the hesitations before the doctors’ answers, in the way they all look down at me before moving towards the door and talking outside the window.
I gather, from all the listening in, that I am to have what is called a CAT-scan. The name of it is a comfort to me, conveying as it does fur, paws, whiskers, a long and curled tail. It will, from what I can glean, take photographs of my brain and these will tell the doctors how to make me better. I like the sound of this CAT-scan: the photographs, some manner of feline involvement, the making-better.
When the day finally comes, I am taken on a great trek through the hospital. I am pushed in a wheelchair by the orderly I like, the one with curling yellow hair and tales about her budgies. We travel along corridors and through doors, up and down in lifts, the paediatric wards left far behind. We are in the main hospital where grown-ups sit in chairs, where automatic doors swish open and closed, letting in jets of outside air, where people stare at me, then look quickly away. I haven’t seen myself in the mirror for a long time but I get the sense, as I’m wheeled along, that I no longer look the way I used to.
And now I’m being lifted from the wheelchair onto a gurney and everybody is leaving the room—the radiologist, the orderly, the porters. Everyone.
I think I call out at this point, say, where are you, but my words are lost because the gurney seems to be moving. And I, too, am moving. There is an electronic whine and I am being slid inside the dark mouth of a large grey machine.
My head, my shoulders, my chest are inside. I am encased in a narrow grey tube. My hips, my legs. I am being swallowed by a monster; I am trapped; I am in its gullet and I will never get out.
Then a noise starts up, a deafening, mechanised roar. I am in the eye of its storm, imprisoned by shining grey plastic.
I scream, of course. Who wouldn’t? The scream doesn’t register as sound, though, because the noise of the CAT-scanner is so great.
I recall the urge—stronger at this point than any other—to struggle, to fight, to move, to kick my way out of that tunnel and off that gurney and to run, out of that room, down the corridor and through those automatic doors. But I can’t. I can’t move. My limbs don’t obey my brain, my synapses, my neuro-muscular signals. My brain isn’t speaking to my muscles. They have fallen out. They ignore each other, they turn away—they pretend the other isn’t there.
I must have moved a bit, however, in my panic, because all the people come back into the room. They haul me out. The orderly holds my hand as they discuss over me what to do.
Restraints are the answer. At age eight, I don’t know what restraints are but, moments later, straps are tightened over my legs, my middle, my shoulders, my forehead.
This time I am screaming before my head is even in the tunnel.
The orderly with the yellow hair returns. She explains to me that I need to be still in order for the pictures of my brain to be taken. I sniff, clutching her hand. I understand, I say. Yes, I understand.
But it’s no good. As soon as I sense the tunnel approach, I cannot countenance it. The idea of lying inside that close, grey, airless space is too much.
Again, I am hauled out. More discussions. The radiologist looks at his watch. The orderly is dispatched to fetch someone. Porters mill around me but no one loosens the restraints.
Please, I sob, please take them off. The pressure of the straps on my head, on my chest, is unbearable. I can feel it now, as I write this. I become, in this strange room filled with people I have never met, what my mother calls “beside myself.” I wail in a voice that is hoarse, unrecognisable; panic pounds me, like sea on a harbour wall. My heart races, trips and races again. It feels like the end of everything. The people in the room shift uneasily, fiddle with charts, with blinds. They are not used to dealing with children, especially distressed ones. They are radiologists, machine operators, graph producers, results analysers. They have no idea what to do. They edge away, to the corners of the room, clearing a space around me. Tears run from my eyes down the side of my face and collect in my hair.
The orderly hurries in. She has a nurse with her. She exclaims, she mutters soothing noises, she pats my shoulder. She doesn’t look me in the eyes when she says that everything is going to be fine so I don’t believe her. And, as it turns out, I am right not to.
The older nurse is inverting a syringe, filling it with a clear fluid. How did I know to fear it?
“No!” I scream, filled with a new, nameless terror. “No, no, no!”
I tell them I’ll be good, I promise I’ll lie still. They inject me anyway.
Sedation is, I discover, only skin-deep. It covers you in a hot, suffocating rush, as if you’re being swaddled, tightly, in a thick blanket. It makes you unable to speak, to articulate, to communicate. Your tongue lolls behind your teeth; your eyes look out from deep inside your skull. Sensation departs from your limbs, from the outer inches of your body.
But inside? Inside, the panic and fear still swarm, just in a smaller space.
I am rolled into the CAT-scan. The whole length of me lies encased in the grey coffin, its roof inches from my unmoving face. The machine rotates and grinds about me. I am shunted forwards, I am shunted backwards.
When I emerge, the orderly is waiting for me. She lifts me into my wheelchair; the nurse helps her as my body has lost all tension. It slumps like a corpse, heavy, unwieldy. As she settles me into the chair, tucking a blanket around me, I see that she is crying, her face scored with wet trails.
The CAT scan results are inconclusive. I am given a second the following week. This time my mother comes with me. She is allowed to stand in the room, donning a huge, elephantine robe to protect her from the radiation. She holds on to my foot while I am inside the machine. The results are, once again, inconclusive.
—
A year or two ago, my mother gave me, among other things, a buff envelope labelled M’S CERTIFICATES. It had been in her attic, stored in a box of stray, forgotten possessions and I didn’t bother opening it for a while: its worn corners and brittle sticky tape exuded no urgency. When I did look inside, I found my O-grade and Higher results, piano exam certificates, a piece of paper telling anyone who might be interested that I had completed a level-two module in touch typing, a document attesting second prize in the poetry section of the school eisteddfod. Interleaved with these testaments to accomplishments, to the hours and hours I spent practising at the piano, I also found a letter I had never seen before. It was headed in the dragon-red insignia of a hospital in Wales and was addressed “To whom it may concern” and was written by the consultant who had overseen my initial hospitalisation and then, months later, my gradual, inching recovery.
I remember him as a genial man, with wiry ginger hair, a dry and careful touch, a row of pens in his pocket, an astute gaze. He was calm with my parents, with me. He would, on occasion, lapse into Welsh and call me “cariad”—“love.” I had monthly appointments with him for years, until I moved away from Wales, at age thirteen. I would sit on the edge of his couch and we would chat and he would tap at my knees to see if my reflexes were still inhibited, if they still swung from side to side instead of back and forth—they always did, and still do. He would
ask me how school was and I would shrug, and he would glance at me without saying anything. He would bring in a group of student doctors, line them up, display my best moves to them (my pendular reflex trick, my inability to touch my finger to my nose, my unreadable handwriting, my lack of balance), then ask them what had happened to me. I felt sorry for these nervous youths as they glanced from me to him, fiddling with their shiny stethoscopes, and I was often tempted to mouth “cerebellar damage” at them, or “ataxia,” just to help them along.
It is his signature at the bottom of the yellowed letter, written on a typewriter, which details the skeleton outline of what happened to me. I wonder, as I study the letter, for whom it was intended. Who, exactly, would be interested in such details, the dates and phases of my illness? Who were the people concerned? Was it for me, as an adult, an account of what had happened to me, unadorned, unembellished, from its actual time? Was it for other medics, specialists, doctors I might come across later in life who might wonder why I can’t walk in a straight line or balance on one foot or orient myself among objects?
There is always a moment when I encounter someone in the medical profession—a physiotherapist, a midwife, a fertility specialist, a practice nurse, an osteopath, an optician, an anaesthetist—when they will be examining whatever part of me is relevant and an expression of puzzlement will cross their faces. They might lift a limb and flex it wonderingly back and forth; they will puzzle over why the reading glasses they have prescribed for me make me stagger and lose balance; they will not believe me when I say that I consume zero units of alcohol per week. Something about me will seem unusual, off, inexplicable, and they will glance at my notes, then back at me.
I have to clear my throat and take a deep breath.
“The thing is…” I begin, and then I relate to them, in brief, in essence, the contents of this letter.
—
Writing about this is hard, not in the sense that it is a difficult time for me to revisit. It’s not that it’s unwieldy or painful material to think about or mould into sentences and paragraphs. It’s more that the time I spent in hospital is the hinge on which my childhood swung. Until that morning I woke up with a headache, I was one person, and after it, I was quite another. No more bolting along pavements for me, no more running away from home, no more running at all. I could never go back to the self I was before and I have no sense of who I might have been if I hadn’t contracted encephalitis as a young child.
The experiences you live through while gravely ill take on a near-mystical quality. Fever, pain, medicine, immobility: all these things give you both clarity and also distance, depending on which is riding in the ascendant.
I recall my encephalitis, in its most acute phase, in flashes, in staccato bursts, in isolated scenes. Some things are as raw and immediate as the moment they happened; these, I can inhabit as myself, in the first person, in the present tense, if you like. Others I have almost to force myself to confront and I watch them as I might a film: there is a child in a hospital bed, in a wheelchair, on an operating table; there is a child who cannot move. How can that child ever have been me?
Of its aftermath, the rehabilitation, I have a stronger sense. The coming home from hospital, the weeks and months of being at home, in bed, drifting up and down on currents of sleep, listening in on the conversations, meals, emotions, arrivals and departures of family life below. The visitors who came, bearing books and soft-toy animals and, once, a man from over the road bringing a basket of baby guinea pigs, which he let loose in my bed, their tiny, clawed, panicked pink feet skittering up and down my wasted legs.
Convalescence is a strange, removed state. Hours, days, whole weeks can slide by without your participation. You, as the convalescent, are swaddled in quiet and immobility. You are the only still thing in the house, caught in stasis, a fly in amber. You lie there on your bed like a draped stone effigy on a tomb. As the only sound you hear is that of your own body, its minutiae assumes great import, becomes magnified: the throb of your pulse, the rasp of hair shaft against the cotton weave of your pillow, the shifting of your limbs beneath the weight of blankets, the watery occlusion when eyelid meets eyelid, the sylvan susurration of air leaving and entering your mouth. The mattress presses up from underneath, bearing you aloft. The drink of water waits beside your bed, tiny silvered bubbles pressing their faces to the glass. Distances that used to appear minor—from your bed to the door, the stretch of landing to the loo, the dressing-table to the window—now take on great, immeasurable length. Outside the walls, the day turns from morning to lunchtime to afternoon to evening, then back again.
Later, I could be carried downstairs, where I might lie on the sofa, under a blanket, watching the birds swoop from leafless tree to bird-feeder. It was hard to stay warm that winter: body heat is so dependent on movement and I was unable to generate either, my fingers curled into themselves, inanimate and blue.
There were exercises and stretches that had to be performed, to keep my muscles and tendons from atrophying. My father would wrap a glass bottle in a blanket, arrange my legs over it and tell me to lift my ankles, pounding the floor if I managed to produce a minor movement. A man much wedded to statistics and research, he kept graphs of my progress. These he still has, records and results, in fading green ink, numbers of millimetres, weight in grams, ankle, knee, arm and thigh. He has a sheaf of my efforts to relearn handwriting, which range from spidery, illegible runes to shakily recognisable letters.
Mostly, though, my sisters were at school and my father at work, so it was just my mother and me in all these empty rooms. There was hydrotherapy at a pool, where I was encouraged, again and again, to lift my foot on to a submerged step, in the hope that the surrounding water would offer the support my wasted limbs needed. There were endless sessions of physiotherapy at the local hospital. I was the only child in Physiotherapy Outpatients in 1981, and I loved it: the physiotherapists seemed delighted to see me each day, as were the old ladies having their arthritic fingers coated in white wax, the elderly men recovering from strokes, squeezing rubber balls in weakened hands, lifting ankles weighted down with kilogram beanbags. There you are, they used to exclaim, as my mother pushed me over the lino, as if my appearance was all they had been waiting for.
One day, a young man with a close-cut dark beard and zippered top wheeled himself over to me when my physiotherapist had stepped away to take a phone call.
“Want one?” he said to me, dangling a gold-wrapped toffee in the air above me. He had an undulating, smooth-vowelled Valleys accent.
I said yes. He knew to unwrap it for me and he did it with an air of unconcern, seemingly not noticing the compulsive shake of my hands as I tried to take it from him.
He unwrapped another for himself. We sucked and chewed companionably for a moment, me on the floor, him in his wheelchair.
“Were you always like this, then?” he said abruptly, nodding down at me.
“No,” I said, shifting the toffee from one cheek to the other. “I had a virus.”
I eyed his legs, emaciated and twisted, strapped down to the footrests of his chair. They looked like mine: limbs without muscle, without tone, pared back to skin and bone. His torso, his chest and shoulders, were powerful, incongruously enormous. He was, I decided, merman in shape: human on top, tapering away to a finned, fishy tail.
“What happened to you?” I asked.
“Came off my motorbike, didn’t I?” he said, crumpling his toffee wrapper. “Broke my back. Severed my spine. Don’t ever,” he told me, wagging a finger at me, “get on a motorbike. If you’re ever tempted, think of me.”
We regarded each other and I had the sense that we were both trying to see the people we had been, those ghost selves who no longer existed, those able-bodied bipeds who never thought twice about the miracle of independent movement, who had been swallowed inside the sessile, atrophied beings we now were. I looked at him and pictured a man in motorbike leathers, powering away from a village in the Valleys, his be
ard and black hair hidden underneath a helmet, taking a corner at an angle, parting the air with speed. Did he see a girl blurred by motion, running, bolting, scaling the branches of a tree, or leaping into the sea?
I took his advice about motorbikes, as it turned out. I have never been on one, despite the exhortations of a petrol-head boyfriend.
I don’t recall the name of the bearded man from the Valleys. I knew it once: he and I saw each other most weeks. He used to say, how come you’re still lying there on the floor? Time you got up, lazybones. He flirted with the physiotherapists, and called all the old ladies “darling,” making them blush and laugh. He made a bet with me as to which of us would be able to take a step first. I see now, of course, that it was a ruse, that he was never going to walk again, that he wanted me to get up on my feet, in the full knowledge that he never would, perhaps because he never would.
A black-and-white film exists somewhere, maybe in the archives of a South Wales hospital, of me, age nine or ten, dressed in the kind of velour suit normally sported by inmates of Florida retirement homes, attempting, with varying degrees of success, to walk along a ward, to climb some stairs, to wield a pen. I look around at the camera and smile, as if I’m appearing in a holiday film, not medical-research footage. There is another, a few years later, where I am lankier, more sullen, more reluctant, wearing drainpipe jeans and a shapeless woollen sweater pulled down over my hands. There are probably doctors, paediatricians, neurologists, physiotherapists out there who were shown these films during their training to teach them about cerebellar disorders.
Physiotherapy Outpatients, the staff and the patients I met there, are the reason I am ambulatory today. That they didn’t give up on me, that they believed I was capable of movement, of motion, of recovery, when the doctors didn’t, meant that I walked. If someone says you can do something, if you can see they really believe it, it puts that possibility within your grasp. “Come on,” I remember the bearded man calling, as I struggled to lift my knees from the mat.
I Am, I Am, I Am Page 13