Ghost Boy Page 14

  Taking care of a wild child like him is proving to be more difficult than I expected. From the moment he arrived, Kojak has caused controversy. Seconds after I shut the front door, he bounded off to sniff every nook and cranny of his new home and sent a cup of tea flying with his tail as he ran into the living room. As my parents got up from their armchairs to clear up the mess, Kojak leaped onto Dad’s chair.

  “Get down!” shrieked my mother.

  Kojak did as he was told—then jumped onto Mum’s chair. With just one look, he’d understood the pecking order in our house.

  “Will we ever get control of this dog?” Mum asked wearily. Later that evening I, too, wondered if we would. Kojak had been locked in the kitchen while we ate supper.

  “What has he done?” Mum roared when she walked into the kitchen and found the floor covered in cooking oil and vomit.

  Kojak had gulped down most of a bottle of oil so enthusiastically that it had reappeared almost immediately. Even so he still looked as if he was smiling. As my mother raged, the two of us went outside. We didn’t go back in until I knew she’d gone to bed and the coast was clear.

  That’s the kind of dog Kojak is: intelligent but charmingly troublesome; clever enough to understand when he’s being naughty and desperate to please but somehow unable to do so always. His chewing budget has threatened to rage out of control, as he has gobbled up mobile phones, disappeared with several TV remote controls, and destroyed almost every established plant in my parents’ garden.

  “It’s been Kojaked,” my mother says now with a sigh when she looks at the craters in her flower border, because for some reason he can’t get enough of a clump of bright orange bird of paradise flowers that she was once proud of.

  Kojak’s idiosyncrasies don’t stop there. If a car window is opened, he’ll try to climb out of it, and he can’t sit still long enough to have a pee, which means that he hops from foot to foot as he does it, like a boxer preparing for a fight. He’s also knocked over my wheelchair several times after lunging at something and pulling. Whether it’s a dog barking or a new smell, he can’t resist investigating, and he wants to jump in and save me whenever I get into the pool. He made a break for freedom one day during an obedience training class only to find a five-foot drop on the other side of the wall that he’d jumped over. Suspended mid-air by his lead, Kojak stared at me as if pleading for his life with an executioner while Dad rescued him with the help of the woman who ran the training class. The other dogs just looked on in despair.

  I know, however, that buried deep within Kojak is a sensible dog trying its hardest to come out. I knew even before I got him that the only hope I had of having any kind of control over a dog was by teaching him some rules, so I’d signed us up for obedience training classes. Kojak is now learning to respond to non-verbal commands, and each weekend my mother or father takes the two of us to dog school, where we are slowly learning to understand each other.

  Raising my fist to my chest tells Kojak to sit down, while a finger pointed at the ground instructs him to lie flat. A fist held next to my body asks him to get up again, and a hand held straight up tells him to wait. Happily, he has quickly learned the basics, and we’ve moved on to the more playful stuff: if I wave at him now, he waves his paw back; if I hold up my hand, he bats it with his paw in a “high five;” and if I hold out my hand, he raises his paw so he can shake it.

  It’s taking time, but I’m sure Kojak is slowly calming down. He’s even learned some service skills, such as opening doors and closing drawers for me. These can sometimes be haphazard because teaching him to take off my socks has given him such a taste for them that he now steals every pair he can find in the washing basket. Teaching him to do things around the house sparked the idea of teaching him to ring the doorbell, and he has taken to running off just so he can come home and let us know he’s back.

  But whatever his shortcomings, Kojak is what I wanted him to be: a companion who always makes me smile with his unfailing cheerfulness and loving nature. Whatever mistakes he makes, his presence has made my world a far happier place.

  40 GD AND MIMI

  My grandparents, GD and Mimi, taught me perhaps my most important lesson about love: if it’s true, it will last a lifetime, and if it’s strong enough, it can be passed from generation to generation.

  I’d heard stories about GD and Mimi all my life: how GD won a medal for bravery at the age of sixteen after diving off rocks into the sea to save a drowning woman and how Mimi loved dances so much when she was a girl that she would travel miles to attend them. GD, who was working as a trainee miner when they met, would cycle thirty miles to see Mimi. He was so determined to provide her with a good life after she’d agreed to marry him that he took his mining exams eleven times in order to qualify as a manager. GD was the youngest of sixteen children and Mimi was the eldest of four so it was perhaps inevitable that they would want kids of their own, and soon they had my father and his two sisters. While Mimi taught her children to do the Charleston as she ran their home, GD built a house for his family so they could move out of mining accommodation.

  My grandparents lived together happily for almost sixty years and continued to do so even after Mimi was confined to bed when she fell and broke her hip soon after my awareness started to return. She never got up again, but Mimi ran her home like a sergeant-major from the comfort of her bed. GD was told what to buy at the shops, how to cook it, and when to take his heart medication. He could never see the irony when he went to visit “the old dears” in the local home for pensioners.

  I loved them both very much. Whenever we went to visit, my wheelchair would be put next to Mimi’s bed so she could reach out to take my hands in hers. Staring at her paper-thin skin, which looked so delicate I thought it might tear, I wondered if I would ever grow so ancient. But then, when I was twenty-three, Mimi fell ill, and this time there was nothing that could be done. Her body was simply wearing out. As she got weaker and weaker, I’d watch Mimi slip in and out of consciousness as I sat beside her.

  My grandfather seemed lost. It was during one of those final visits that I heard him tell my father what he wanted more than anything in the world.

  “I’d like to sleep next to my wife one last time,” GD said, because Mimi had been so ill that he hadn’t been able to.

  Two days later, the phone rang at home and Dad picked it up. He talked quietly for a few moments before putting it down.

  “Mimi has died,” he said, and I watched him walk up the passageway with his hands held behind his head, as if trying to massage the realization that he’d lost his mother into his skull.

  I was filled with sadness for my father as he put me into the car and drove us to his parents’ home to see Mimi for the last time. She was lying on the bed when we got there, and my father kissed her as I watched. No one knew that I completely understood what had happened, of course, and I longed to comfort GD as he cried while we all sat waiting for the undertakers to arrive.

  “I feel as if my arm has been amputated,” he sobbed, and I knew his heart was breaking for the woman he’d loved for so many years and now lost.

  Their love had lasted a lifetime; their stories had become woven together so tightly that they’d forgotten where one ended and another began. All around us were scattered the tiny clues of their love, enmeshed in even the most mundane objects like the good winter coat my father and aunts found in Mimi’s wardrobe. GD had spent precious money on his wife because he was anxious to keep her warm.

  A few days later Dad spoke at Mimi’s funeral about the love she had passed on to her children. When he was a boy, he told the congregation, his mother had knitted his clothes in “love stitches,” and her calm, quiet presence was always with him. One day when he was a small boy helping her to bottle peaches, my father had accidentally spilled burning syrup on Mimi, which had instantly blistered her skin, but she didn’t get cross or shout. Instead, she simply washed the burn in cold water, bandaged it, and quietly carried on.

>   As I listened to my father, I realized that I was learning another lesson about the love I’d seen between men and women: sometimes it was playful like Henk and Arrietta’s, sometimes peaceful like Ingrid and Dave’s, but if you were lucky, it could last forever just as it had between GD and Mimi. That kind of love can be passed from one person to the next, like a life force that will comfort anyone it touches and create memories that burn strong years after the events that inspired them.

  This was the kind of love my father had known, and now as he spoke, I knew he could see his mother in his mind’s eye as clearly as he had when she was still alive. As he remembered that moment in his childhood, he could feel her touch and hear her voice as once more he became a boy enveloped in love on the day he bottled peaches with his mother.

  41 LOVING LIFE AND LIVING LOVE

  The waves roll onto the beach as the smell of fried chicken wafts on the salty wind. My mouth waters as I lift another piece of meat to my mouth. How good it tastes.

  It’s December 2006, and I’m sitting on the edge of a beach in Cape Town with my friend Graham. He became a fellow AAC user after suffering a bilateral brain stem stroke while he was working on an island off the coast of South Africa more than two decades ago. After Graham was airlifted to a hospital, he woke up only to be told that he was paralyzed from the eyes down. He was twenty-five.

  Today Graham can’t move or talk, yet he lives life roaring like a lion at anyone who doubts him. Completely physically dependent on others, he refused to go home to be cared for by his mother as he was expected to do after he was paralyzed. She lived on the other side of the country, after all, and Graham wanted to continue to live in Cape Town. So he went into a nursing home, where he still lives today, and I’ve never met anyone whose love of life is so infectious.

  He lives every minute and loves to break rules: I’m pretty sure that he’ll soon ask to be given a mouthful of fried chicken even though he isn’t supposed to eat solid food. I understand the kind of longing that’s too strong to deny. “You can’t do everything the doctors tell you to,” he says to anyone who might question him. He’s told me that it’s not just the taste but the physical act of chewing and swallowing he craves. That’s why the advice of doctors gets forgotten every now and again as he treasures eating a small mouthful of food.

  We first met at a conference about eighteen months ago, and I’m in Cape Town now because we’re giving speeches at an event tomorrow. But first we have come to the beach to sit side by side like metal birds on a wire and watch the sea. As I chew my chicken, I think of a photograph Graham showed me earlier.

  “She’s an acquaintance,” he said as I looked at the beautiful woman smiling into the camera lens.

  Graham’s eyes twinkled as he used the infrared pointer that tracks the tiny movements he can make with his head to operate his communication device and talk to me. I wished I had a picture to show him too, a photo of a woman I love. But I don’t, and I’m beginning to fear that I never will because, lesson by painful lesson, I’m learning that few women can see past the body that encases me.

  I don’t know if my longing for love was always a part of me or whether its seeds were sown on a day I can still remember vividly although it was over ten years ago. It was late afternoon when a group of nursing students visited the care home, and I was lying on a mattress when I felt someone kneel down beside me. As a straw was put into my mouth, I looked up to see a young woman. Long brown hair framed her face, and suddenly I was filled with a longing so strong it almost made me gasp when I felt the gentleness in her hands. I wished I could stretch that tiny moment into forever as the girl who smelled of flowers and sunshine became the world to me. Was it that or all I saw between Henk and Arrietta, Dave and Ingrid, GD and Mimi that coaxed the longing for love to life inside me? Or perhaps it was because of the years of devotion my parents showed me, my brother, my sister, and each other.

  Whatever the reason, my yearning for love burned stronger still when I started to communicate, and it’s only now that I can see how naïve I’ve been. I really did believe that I could will love into existence if I wanted it enough, and I would find someone to share the kind of feelings I’d seen as a ghost boy. Then Virna taught me that it was going to be far harder than I’d thought at first, and I tried to accept the lesson. I’ve run from my feelings and buried them in work. I’ve counted my blessings one by one because I know that I have God to be grateful to for so many of them, and I tell myself that there must be a reason why I am still here. Yet I crave the love of a woman too. I want to look into her eyes and see not pity or selfless sympathy but her soul looking back at mine. It is a hunger inside me to give and receive love, and there are times now when I feel as lonely as I did before I could communicate.

  I realized long ago that my love for Virna was a myth I wrote for myself, a sprite of my own creation that I’d never have been able to capture for real. Whatever I thought, she only ever saw me as a friend, and I can’t blame her for that. But I didn’t learn the lessons she inadvertently tried to teach, and I’ve repeated the same mistake again and again. Although I’m thirty now, there are times when I think I have as much understanding of women as I did when I was a twelve-year-old boy submerged in darkness. Earlier this year, I travelled with my father to a conference in Israel. I sat in a darkened auditorium listening to a professor talk about the challenges facing people like me in having romantic relationships. However much I didn’t want to believe it, I knew he was right.

  Ever since I started to communicate, my hope has been drawn time and again towards women like a moth to a flame, only for me to be burned by the scalding chill of their indifference. I’ve met women who have found me an oddity to be inspected and others who think I’m a challenge to be overcome. One woman I met through an Internet dating site stared at me as if I was an exhibit at the zoo, while another, who was a speech therapist, gave me a straw when I arrived to see her socially before asking me to blow through it as she would a patient doing a breathing exercise. I longed to tell these women that I’m not a neutered dog with no bark or bite; I have longings and feelings just like they do.

  Soon after returning from Israel, I met a woman who captured my attention just as others had done, and once again I allowed hope to take root inside me. I told myself the professor was wrong. What did he know? I had confounded expectations in other ways and would do so again. I was sure this woman’s interest in me was genuine, and my heart soared when we went out one evening to eat pizza and chat. For a few short hours, I felt as normal as everyone else. Then the woman emailed me to let me know that she had a new boyfriend, and I felt crushed again.

  I was such a fool. How could I hope that a woman might love me? Why would she? I know I bruise too easily and am too quick to feel pain and sadness. It makes me envy people my age who had teenage years in which to be knocked by life and learn to play by its rules. However hard I try not to care, I find it almost impossible to accept that the desire that burns so strongly inside me to love and be loved will never be reciprocated.

  Now I look out at the sea as I watch waves crashing onto the sand and remember a couple who came to one of the open house days I host at the communication center. I noticed them at once because the man, who arrived with his wife and two small children, was about my age, and everything about the couple—from the way they looked at each other to the silences and smiles that communicated so much—told me they were very much in love.

  “My husband has a terminal brain tumor and is losing the power of speech,” the woman said to me quietly as her husband looked at some of the equipment we had on show. “But we want to carry on talking to each other for as long as we can, which is why we came here today to see if you could help.”

  “He wants to tape video messages for our children while he’s still able to, and I think he wants to leave one for me as well.”

  Suddenly the woman’s face froze.

  “I’m not ready to let him go yet,” she whispered.

&nbs
p; Desolation swept across the woman’s face like wind across a deserted winter’s beach as she thought of the uncertainty of a future without the man who had anchored her to life.

  “Do you think you could help us?” she asked softly.

  I nodded at her before she turned to walk back to her husband, and I felt grief pierce me. How could a family that loved so much be torn apart? Then another feeling filled me, a kind of envy, because as I looked at the man and woman smile at each other, I realized they’d had the chance to love and be loved that I so fiercely wanted.

  42 WORLDS COLLIDE

  My mother smiles at the physiotherapist who is pushing me out of her room. I’m sick of coming here week after week, being lifted up and encouraged to take faltering steps on my painful legs and feet. Nevertheless, I do it because my parents have never given up the hope of seeing me walk again. I’ve wondered at times if my family remember the boy I used to be and miss him, which is why they’ve always wanted me to walk again so badly or to use a computer-generated voice to talk instead of an alphabet board.

  It is hard to convince them that my body is unpredictable: just because I can stand up one day, doesn’t mean I’ll be able to do it the next. It sometimes feels as if I’m almost failing my parents because I don’t progress physically in the way they hope I might, but I know this is often the case with parents.

  When a boy came to the communication center once to be assessed, we told his mother that he would have to start learning to communicate using a head switch because his neck was the only part of his body he could stabilize. But his mother was adamant: she wanted her son to use his hand not his head. She wanted him to fit in in any way he could, to be as like everyone else as he could in whatever small way.