Ghost Boy Read online

  Once Mum and Dad have made up all the pages telling people my name and where I live, that I would like my sweater put on or to be moved out of the way of the sun, they can put them in my folder. Then the person I’m speaking to can slowly turn the pages, and I’ll stare extra hard at the symbol I want to choose. If I need to let my parents know at mealtimes that my food is too hot, cold, or bland, I can stare at one of the laminated pieces of paper they’ve been advised to stick onto my place mat.

  Of course no one has any idea how much of this I can understand because they’ve never tried to do anything like it with me before. During my assessment I showed that I can obey simple commands—but so can a toddler. That’s why I must start with small steps and hope the people teaching me will soon realize I’m capable of more.

  It’ll take time, but at least there is one way I’ll be able to show people I understand things they haven’t considered before. Babies might eat puréed food day after day without complaint, but I’ll soon be able to ask someone to pass me the salt. For the first time in my life, I’ll be able to season my food.

  9 THE BEGINNING AND THE END

  The care home I’ve attended since I fell ill is called Alpha and Omega, the beginning and the end. But there isn’t too much of either to be found here for me because I’m trapped in a purgatory of bland days which ebb one into the other.

  The center is housed in a single-story building with two bright and airy classrooms, a small physiotherapy room, and a garden. Sometimes I’m wheeled out into the sunshine, but usually I stay inside, where I’m moved from a sitting position in my chair to lying on a mat on the floor. Mostly I’m rested on my side or back, but occasionally I’m put face down on a large cushioned wedge so that a care worker can encourage me to try lifting my head by tapping it with the palm of their hand. Otherwise I lie inert, looking at mint green walls and listening to the tinny chirpiness of the television or radio that provides a constant backdrop to my days. I prefer it when the radio is on because trying to watch the television requires effort that I often can’t muster. Instead I stare at the brown carpet tiles and listen to footsteps clicking on the linoleum floor in the corridor outside.

  Classroom language is used here but I’m not sure why because none of the children are thought to be educable. Whatever the reason, my fellow inmates and I have “teachers” and are divided into two “classes,” which are randomly changed every so often. Sometimes we are split into children-who-can-walk and children-who-can’t; at other times it’s a question of dividing up those who don’t get on. Once we were even separated according to IQ, although when everyone is considered to be thirty or under it seemed a bit like splitting hairs to me.

  Usually about half a dozen staff, who look after us each day, do activities such as stretching our legs or covering our hands in paint before pressing them onto pieces of paper. A couple of the children can join in a little but most are like me and can’t control their movements enough to do anything. I’ve often wondered who these activities are supposed to benefit as I’ve sat having my hand smeared with cold red paint before it is dragged across a sheet of paper: us or our parents? Are we being forced to collude in a necessary lie when a member of staff draws a picture using our hand? I’ve seen so many parents being given a drawing they must know their child couldn’t have done but none of them says a word as they stare at it.

  I’ve only ever heard one mother question whether her son actually produced the painting and the caregiver gave her a silent smile when she did, as if pleading with her not to crack the facade of false optimism that has been built around us. I understand why parents want a strand of hope to cling onto, however fragile, just as I understand why such activities might be enjoyable for those children who find being touched and spoken to a relief from a monotonous day, but mostly I wish I could be left alone.

  I’m usually trying to listen to the radio when someone comes to disturb me with a smile. I know they mean well, of course, but I’m the oldest here and the activities are aimed at much younger children. No one seems to consider that even people who are thought to be intellectually impaired can change as they grow older.

  Despite all this, I know from experience that Alpha and Omega is a far better care center than many. Over the years I’ve often heard people talking in shocked whispers about what they’ve seen at other places. They’re right to be shocked. I’ve seen things for myself: I was sent to other homes when my father went away on business because my mother wasn’t confident about looking after me alone and when my family had a holiday because they needed a break from caring for me.

  Each time I was left there, I felt terrified I would never be taken home again, and my anxiety would build day by day as fear took control of me. On the day I was due to be picked up, each minute felt like a year as I waited to hear my mother and father’s familiar voices. My greatest fear is that I will be left in one of those places where children like me sit all day with no interaction or stimulation. That would be the worst kind of living death.

  So I’m grateful to the staff here, who at least try to give our lives a little more texture, because working in a place like this is not everyone’s cup of tea. I’ve lost count of the caregivers I’ve seen come and go over the years. Many disappear almost as soon as they arrive, and I’ve learned how to recognize the look of almost revolted confusion they get before even they realize they feel that way. I understand. Some people are scared by what they can’t comprehend. It makes them uncomfortable to see the elfin features of a child with Down syndrome, the twisted limbs of one with cerebral palsy, or the unseeing stare of an infant with brain damage.

  But for all the people who can’t bear to look after the children here, there are some for whom this work is a calling. First among them is Rina, the principal of the home, who has a round, smiling face and taught me one of my earliest lessons about the people who care for me.

  Years ago, when Rina was a teacher instead of being in charge, she became very attached to a little girl called Sally who had been born with severe cerebral palsy. Rina adored Sally: she fed her the gem squash she loved, cradled her tightly in her arms, and played the music that always made her smile. Rina was so close to the little girl, in fact, that she was at the hospital on the night Sally died of pneumonia, aged six.

  After that, some of the light went out of Rina’s eyes, and seeing how bitterly she missed Sally taught me that children like myself could be so much more than just a job. It has been a comforting thought to carry with me throughout the years and all the meetings with people who have treated me like little more than a carcass to be handled as a chicken is maneuvered into the pot. Not a shred of human warmth melts their chilly professionalism. Humping you like a sack of potatoes, they wash you briskly with freezing water and always get soap in your eyes, however hard you squeeze them shut, before thoughtlessly feeding you food that is either too cold or too hot. All the while they don’t speak a word or smile for fear of seeing a person staring back.

  Worse though are the so-called caregivers whose callousness becomes far more personal. I’ve been called “the obstacle,” “donkey,” and “rubbish” by people who assume they’re superior but in so doing show just how stupid they really are. Do they really think that a limited intellect means a child can’t feel viciousness in a person’s touch or hear anger in the tone of their voice? I remember, in particular, the rush of cold air that always used to wake me when one woman impatiently ripped off my blanket as I slept each afternoon and the temporary worker who threw me into a chair so roughly that I fell out of it as it tipped forwards, and I dived head first onto the floor.

  Such experiences aside, I’ve come to the conclusion that there are more good people than bad looking after children like me because when I look back over the years I see a stream of smiling faces. There was Unna, who always seemed to be sweating because her nose was permanently shiny, and Heila, who pulsed with such anxious energy that even her tongue couldn’t stop moving as she nervously licked her lips.
Today there’s Marietta, who loves Days of Our Lives and has a fiery temper under her calm exterior; Helen, who giggles as she tickles me and has fingernails with a dark brown stripe down the middle that I can never stop staring at; and my own personal favorite, Dora—middle-aged, plump, and smiling, her calmness reassures me and kindness makes her eyes a soft, liquid brown.

  However different they are, the one thing all these women have in common is a love of chatting and gossiping, exchanging news and sympathizing with each other’s troubles. I’ve heard stories of snakes that have slithered into houses at night and been beaten to death by a brave husband, tales of water leaks that made it rain inside and threatened to bring down ceilings, and descriptions of grandchildren bouncing furiously up and down on beds whenever a certain song is played. I also know about the trials of coping with a parent who has Alzheimer’s, the problems of caring for sick relatives, and the difficulties of getting maintenance from an unwilling ex-husband.

  Whatever else they talk about, though, I’ve come to know that there are three topics women will return to again and again in conversation: their husbands, who are often a disappointment; their children, who are usually wonderful; and their weight, which is always too high. Again and again, I hear them commiserate with each other about how difficult it is to make men more responsible and diets more effective. While I don’t understand their problems with their husbands, my heart always sinks whenever I hear them talk about calorie counting. Women seem to think they go on diets in order to feel happier, but I know from experience that this isn’t true. In fact, I can safely say that the less women eat, the grumpier they get.

  10 DAY BY DAY

  Life is finally starting to happen to me as my parents discuss how best to help me. Their ambitions for me extend far beyond paper symbols, and I now know they are going to buy me an electronic communication device like the black box we saw at my assessment. It is a leap of faith that I wish I could thank them for. They still have no idea if I’ll be able to use such a device, but they are willing to try because the small spark of hope ignited by my assessment has lit a fire within them.

  Together we are discovering a new world called Augmentative and Alternative Communication or AAC. It’s the place where the mute can find a voice through everything from the most basic forms of communication, such as pointing, blinking, or staring at symbols held up by another person, to high-tech speech-generating devices and computer programs that one person uses alone.

  To operate a device independently, I must be able to use switches, so my mother takes me back to see Shakila and a physiotherapist called Jill. After testing me again, they identify the two switches I might best be able to use: one, called a lolly switch, is a small rectangular box that sits in my palm and is operated by curling my fingers to press the button; the other is a wobble switch, which is long enough for my inaccurate right hand to connect with sometimes if I flail it in the right direction.

  At first I was overwhelmed with excitement when my parents decided to buy me the device. But then frustration filled me as I realized I didn’t want it because the black box can store about 250 words and phrases. It will only partially open the door to communication by giving me just 250 things to say when the words inside me feel so limitless.

  Then South African currency suddenly devalues and my parents have to cancel the order for the device after it almost doubles in price. Instead they decide to buy me a computer that can be loaded with communication software. It’s a brave decision because no one else in South Africa uses one. Speech therapists won’t be able to help us—no one will. If I’m to learn anything it will be entirely down to me and my parents, and they don’t even know if I’m capable of using a computer.

  For now, they must decide what software to buy me, and whatever they choose could change things for me completely. It is nerve-racking but exhilarating. My emotions jostle for space like baby birds in a nest: excitement at the thought of learning to communicate, guilt that I’m happy I won’t be getting the black box, and remorse that I feel this way when my parents showed such faith in me by ordering the device. Each emotion is different: excitement makes my stomach shiver, guilt brings a soft swell of nausea deep inside, and remorse makes my heart feel heavy. These emotions are so different to what I’ve known for so long—feelings that I muted to gray to save myself from being driven mad by the monotony of my existence and my powerlessness over every identical day.

  “Hello, boy,” my father says when he walks into my room at six a.m. each day.

  Dad is always dressed by the time he gets me up. Then he washes me and puts on my clothes before wheeling me into the kitchen, where I’m fed a bowl of cereal. I’m also given a cup of coffee, which I drink through a straw. By the time it’s finished I know we’ll soon be leaving for the care center. Dad drops me off on his way to work each morning, and the final thing he does before leaving the house is to put a bag onto my lap containing the clean clothes, incontinence pads, and bibs I’ll need for the day, plus a cooler bag with all my food and drinks.

  The moment the front door opens is always a tiny thrill for me. Wondering what the weather will be like is one of the few unpredictable elements of my day, after all. Will there be a snap in the air or a cloudy sky? Given that the sun shines a lot here, it isn’t usually much of a surprise, but I revel in those few short moments of suspense as my father opens the door.

  After Dad puts me into the car and folds my wheelchair into the boot, he gets in beside me, switches on the radio, and we drive in silence. Half an hour later we reach the care home, where he gets me out of the car again and puts me back into my wheelchair. Then Dad lays my bag on my lap and wheels me to the brown gate that secures the entrance to Alpha and Omega. As he pushes me down the corridor to my classroom and my wheelchair comes to a halt, I know that I’m going to be left for another day. It’s usually between 7:15 and 8:10 a.m. by the time Dad leaves, which means I’ll have to wait for anything up to eleven hours until I see him again.

  “Bye, boy,” he says as he bends down to kiss me, and I hear his footsteps disappearing as he walks back up the corridor.

  The days at the care home don’t really start properly until about nine-thirty a.m., so I sit in my chair until then, or sometimes I’m put onto a bean-bag, which I prefer because it supports my body so well. Then I lie or sit for the rest of the morning, and sometimes I’m lifted up to do stretching exercises or an activity. After a mid-morning cup of tea, I’m sometimes taken outside for fresh air, and ninety minutes later it’s time for lunch, which is the same every day—stewed fruit and yogurt followed by orange or guava squash. Then at midday they lie me down to sleep with the other children, and three precious hours are lost until I’m woken up for my afternoon drink and put into my wheelchair again to wait for Dad.

  I often find this part of the day hard because, although the center officially closes at 5:15 p.m., Dad doesn’t usually arrive until some time between 5:20 and 6:30 p.m. because he can’t leave work early and often gets held up in rush-hour traffic. Some of the staff don’t like it, and I often overhear conversations criticizing him. It upsets me each time because I know my father is doing the best he can.

  “Hello, boy,” he says with a smile when he finally walks into my classroom, and I breathe a sigh of relief because I’ve finally reached the end of another day.

  Then my bag is put back onto my lap, I’m wheeled to the car, my chair is stowed in the boot once more, and we drive home listening to the radio. After pulling into the driveway and going inside, we usually find Mum cooking, then we sit around the dining-room table to eat before I’m given a cup of milky coffee and laid on the sofa in the lounge in front of the TV. Most nights my father falls asleep in his armchair while he watches a program, then he wakes up, puts me back into my chair, wheels me to the bathroom to brush my teeth, and puts me into bed after undressing me.

  The only change to the routine comes at weekends, when I get to stay at home and am given a lie-in until I’m lifted out of
bed and taken to the lounge, where I spend the day lying or sitting. But at least my family are around me, and I get to hear everyone talking. These are the days that always give me strength for another week because I love being with my parents and David—Kim, too, before she moved to the UK. That is why sadness always fills me when my father washes my hair as he bathes me on Sunday nights and prepares me to start another week at the care center. Every second or third week, he cuts my nails and I hate having that done.

  This is the routine of my life and has been for as long as I can remember. So is it any wonder that I hang on to every word my parents say as they discuss what to do, and I begin to dream of a future I never thought I would have?

  11 THE WRETCH

  It was Virna alone who offered me safe passage from my silent self after we first met three years ago. Unlike the people who are now trying to reach me with symbols and dials, switches and screens, Virna only ever used intuition. Like a master detective following the clues I sometimes inadvertently left, she never looked for one conclusive piece of evidence. Instead she was content to piece together a string of tiny fragments to make a whole.

  It took time. I wasn’t willing at first to see that someone wanted to communicate with me. I was scared to believe someone might. But when I realized that Virna wasn’t going to give up, I gradually opened up, and over the months and years that followed we became friends.

  “How are you today, Martin?” she’d ask as she walked into the tiny room at Alpha and Omega where she massaged me once a week.