Ghost Boy Page 6

  Mum looked up at me. Her eyes were filled with tears.

  “You must die,” she said slowly as she looked at me. “You have to die.”

  The rest of the world felt so far away when she said those words, and I stared blankly as she got up and left me in the silent room. I wanted to do as she bid me that day. I longed to leave my life because hearing those words was more than I could bear.

  As time passed, I gradually learned to understand my mother’s desperation, because as I sat in the care home and listened to other parents talk, I discovered many others felt just as tormented as she did. Little by little I learned why it was so hard for my mother to live with such a cruel parody of the once healthy child she had loved so much. Every time she looked at me she could see only the ghost boy he’d left behind.

  My mother was far from alone in having these feelings of darkness and desperation. A couple of years after she spoke to me that night, a baby called Mark started coming to the care center and his learning difficulties were so severe that he had to be tube fed, never made a sound, and wasn’t expected to survive for long. I never saw him because he lay in a cot all day, but I could hear him. I knew what his mother sounded like, too, because, although I was usually lying on the floor when she came in with Mark, I became familiar with her voice. That’s how I heard a conversation she had with Rina one morning.

  “There’s a moment every morning when I wake up and I don’t remember,” Mark’s mother said. “I feel so light inside, so free. Then reality comes crashing back, and I think of Mark, another day, another week, as I wonder if he’s suffering and how long he might live.

  “But I don’t get out of bed to go to him straight away. Instead I lie there, looking at the light coming through the window, the curtains blowing gently in the breeze, and each morning I know that I’m building up the courage to go and look in my own son’s cot.”

  Mark’s mother wasn’t fighting fate any more. She had accepted the inevitability of her son’s death and now waited each morning for it to come, unsure how she’d feel when it did. Neither she nor my mother was a monster—they were just afraid. I long ago learned to forgive Mum for her mistakes. But as I look at her now, her brow knitting in concentration as she tries so hard to think of the color I want to add to a grid, I wonder if she’s forgiven herself. I hope so.

  14 OTHER WORLDS

  When I needed to forget, I could always be free. However desperate I felt, there was always one place where I knew I could lose myself: my imagination. There I could be anything I wanted to be.

  Once I was a pirate boy, stealing onto an enemy ship to take back the gold that had been stolen from my father. I could hear laughter as I climbed up a rope ladder onto the ship and jumped silently onto the wooden deck. A pirate was in the crow’s nest far above me, looking out to sea through a telescope—he didn’t know an enemy was creeping aboard right under his nose. At the other end of the deck I could see a group of pirates huddled together. They were crouching over a map, passing around a bottle of rum and laughing as they wondered which ship they’d attack next, whose gold they’d steal this time.

  I licked my finger and stuck it into the air to find out which way the wind was blowing. I had to make sure the pirates didn’t sniff me out because they tied up their prisoners and left them for the birds to pick out their eyes before making them walk the plank. Flinging myself onto the deck, I pulled myself along on my elbows, sliding forward silently, knowing my cutlass was by my side if I needed it. I was ready to slice off the head of any pirate who came too close, but they were all too busy staring at their map to notice me. Without a sound, I climbed down the ladder into the ship. I had to find the pirate king’s cabin because that was where my father’s gold would be.

  I came to a door and pushed it open. The pirate king was asleep in a chair, but I could tell that he was so tall his head would nearly touch the ceiling if he stood up. He had a big black beard and a patch over one eye, and he was wearing a captain’s hat. In front of him was a chest filled with jewels and money, precious stones and cups, and I crept towards it as I scanned the treasure. Then I saw it—the brown leather bag that held my father’s gold. It was half hidden underneath a pile of coins, and I pulled it carefully, inching it out bit by bit, careful not to make a sound until it was safely in my hand.

  I could have left as quietly as I’d arrived, but I didn’t.

  I walked around the desk to where the pirate king was sitting. His nose was big and red, and there was a scar running down his cheek. A parrot, blue and green and yellow, sat on a perch beside him. I fed it some bread from my pocket to keep it quiet before leaning forward and snatching the pirate king’s hat as I started to laugh. He opened his good eye and saw me.

  “AAAAAAAAAAAAAAAARGH!” he roared, and I laughed at him even harder.

  He leaped up and drew his sword, but I was too fast for him. I pushed his hat onto my head, ran for the door, and smashed it closed behind me. I could hear the sound of wood splitting as the pirate king kicked his leg through the door and got stuck. Ha! He wouldn’t be able to come after me now.

  “Thief!” he screamed.

  I pulled out my cutlass and pointed it in front of me. It was made of silver so shiny that the sun bounced off it as I ran onto the deck. The pirates were waiting for me, but I twisted the cutlass, and the light shining off my blade blinded them. They fell to their knees, screaming as they covered their eyes, and I ran to the side of the boat as one of the pirates tried to follow me. I could hear his sword swishing in the air; I could feel him close by. He wanted to catch me for the birds.

  I spun around, and my cutlass clashed against metal. The pirate’s sword flew out of his hand and across the deck as I jumped onto the rigging, still holding my father’s gold. I was the pirate boy. I could run and swim, steal and fight, face and outwit my enemies. I smiled as the pirates rushed at me.

  “You’ll never catch me,” I screamed as I jumped off the rigging.

  I fell down and down, my body diving like an arrow into the deep blue water, which closed over me. I knew the sea would safely carry me far away. I’d find my father and fight another day. I was the pirate boy and no one’s prisoner.

  I used to immerse myself in such fantasies to escape the feelings that threatened to overwhelm me when I thought I’d be trapped forever. Now I sometimes wish I could retreat there again as I begin to experience an exquisite torture of hope, frustration, fear, and joy as I reconnect with the world. Deep down I know, of course, that I no longer need to lose myself in fantasy because I’m living life at last. But I’ll always be thankful for my imagination because I learned long ago that it was my greatest gift: it was the key that unlocked my prison and allowed me to escape, the door through which I entered new worlds and conquered them—the place where I was free.

  15 FRIED EGG

  The band around my head feels tight this morning as I practice on my computer. At its center is a small black dot, which I’m trying to use to shine an infrared beam on the computer screen with a slight turn of my head. Pressing my feeble hands into one of my switches enables me to choose the word I want to say. This gadget is supposed to help speed up the communicating process, but it’s taking a long time to learn how to use it.

  The desire to master my communication system is all-consuming as I try to control my switches and remember where the symbols we’ve inputted into my computer are within the word grids. Most days I still go to the care center for a few hours to give my mother some time to herself, but instead of losing myself in fantasies now, I flick through mental images of the grids to test myself on how to find my way from one to the other, and remember where particular words are stored. When I get home, I work for six, seven, eight hours, sometimes wasting words just to hear myself “speak.” Like a child in a sweet shop, I gorge myself: verbs are my chocolate bon-bons, nouns are my sticky toffees, adverbs are my jelly sweets, and adjectives are my licorice allsorts. In bed at night, I see symbols running through my head and into my drea
ms.

  Now I watch as each individual word cell on the grid in front of me is highlighted one by one. It contains words about breakfast, and the other symbols I’ve already selected for the sentence are hovering at the top of the screen. “I would like,” “orange juice,” “and,” “coffee,” “please” stand patiently like a queue of passengers hoping to see a bus they fear might never turn the corner because they’ve been waiting for so long. Each time I select a symbol, I must wait for the cursor to go back to the beginning of the grid and click slowly through each word cell again. Now I wait because I want to ask my mother for a fried egg for breakfast this morning as well as coffee and juice.

  A picture of a steaming cup—“instant coffee”—is illuminated. Then a picture of a carton—“milk.”

  Honey.

  Toast.

  Muffin.

  Marmite.

  Porridge.

  Strawberry.

  Apricot.

  Marmalade.

  Jam.

  Butter.

  Margarine.

  Grapefruit.

  Orange.

  Banana.

  Raisin Bread.

  There’s just one more line of words to go.

  I watch as “omelette,” “tomato,” and “sausage” are highlighted. The cursor moves to the line beginning with “bacon” and ending with “fried egg.” That’s the symbol I want. I revel in the knowledge that I can now be so specific when I ask for food. Scrambled eggs won’t do nor will poached—I want sunny side up, a disc of sunshine yellow to brighten my plate.

  I curl my right hand around my lolly switch in readiness. The right one is my most useful hand, the hand I trust. I will ask it now to do as I wish.

  The cursor moves on and each cell is highlighted for a few seconds before the next is lit up. “Egg” and “scrambled egg” are left behind as the cursor moves forwards. “Fried egg” is coming up. It nestles between “poached” and “boiled.” I wait to pounce on it.

  At last. The symbol is illuminated. But as I go to squeeze my fingers around my switch, I realize they won’t move fast enough. I try to squeeze them closed again but they won’t obey me. My hand has failed me and a wave of anger pulses through me as I watch the highlighter move on to the next symbol. I have missed fried egg. It has been and gone. I must wait for the cursor to click through the whole grid again before I’ll get another chance to select it.

  I take a deep breath. Communicating is a particularly arduous game of verbal snakes and ladders for me. It takes the kind of patience I’m now almost glad I had years to master.

  I watch as the words light up in front of me once more. Come what may, I will get my fried egg. Then I will click on one last symbol—“speak”—and my electronic voice will finally have its say.

  16 I TELL A SECRET

  I can’t pinpoint the exact moment when I first fell in love with Virna. Perhaps the feeling settled so slowly, layer by layer, that I didn’t realize it had become part of me, or maybe I just never allowed myself to think it. I can’t be sure, but all I know in this moment, as I look at her, is that I love her.

  I’m at the day center, and Virna is talking to me. I look forward to her visits now more than ever because they are a soothing antidote to the resentment that’s beginning to flicker inside me. I don’t understand why I’m still being sent to the care center even though I’m getting better and better at using my communication system. It’s late 2002—more than a year since I was assessed—and even though I’m sure I’ve proven I shouldn’t be here, no one seems to know what to do with me because there is nowhere else for me to go. If being here was hard when no one knew my intelligence was intact, then it’s a thousand times more so now.

  I have two lives: one in which I’m at home working on my computer, feeling as if I might soon become a part of the world for the first time; and the other, in which I sit in the care home with a folder of symbols lying on my lap that no one takes much notice of, feeling as dead as I ever did. It’s getting harder and harder to move between the two.

  Not long ago my parents went away on a short trip, and I was sent to an unfamiliar residential home. Each morning I was wheeled into a dirt yard surrounded by a high metal fence, where I would sit like an animal in a zoo. At the end of each afternoon, I was taken back inside, where there was no TV or radio, nothing to break the monotony. The only thing that ever changed was the sound of cars on a nearby road, and whenever I heard one approach I dreamed it was someone coming to take me away. But I was never rescued, and there was nothing I could do to stem the rage and disappointment surging through my veins. When would people start to see me for who I am instead of the broken shell that encases me? What must I do to convince them that I don’t fit into these places any more, and it’s wrong to try and make me?

  Even though some people have seen how much I’m capable of, I’m still usually treated like a child who doesn’t know his own mind. It feels as if Virna is the only one who sees me as an equal, and I’m more and more certain that I mean something to her. Why else would she have such faith in me? I long ago stopped listening to the staff here making jokes about how much time Virna spent with me. But now I’ve started to think about what they say and I know her eyes shine with pleasure when she asks how I’m getting on with my computer. I can’t tell her a lot about my progress because I don’t bring my laptop to the center for fear something might happen to it. It is far too precious to bring to this place. But Virna asks me questions that I answer more surely now that my head movements are getting better and my hands a little steadier. Like a rusty old machine that runs more smoothly with use, my body is growing stronger.

  But it’s not just Virna’s interest in my progress that tells me she cares; she’s told me in other ways too: by giving me a mobile she’d made of wire fish decorated with sea green and blue marbles, which now hangs in my bedroom, and by visiting me on my birthday. Virna is the only person who’s ever come to see me at home, apart from my school friend Stephen who came around during the years after I fell sick. Each year he would arrive with a birthday card that he would read out to me. But I’ve not seen Stephen for a long time now because he moved across the country to study to be a doctor. So I was overwhelmed when Virna came to see me. It happened even before I was assessed and she gave me a box that she’d painted for my birthday. No one but Virna believed in me back then, and I gazed at the box in wonder, holding it as gently as a religious relic, as she and her cousin Kim chatted to my parents.

  “We’ll be back,” Virna said softly as she got up to leave and smiled at me. “This won’t be the last time we visit you.”

  That’s why I feel so hopeful now that Virna might be able to care for me even more as I learn to communicate. Soon I’ll be able to say whatever I want, talk about any subject quickly and easily, and be the kind of person that Virna might like.

  I wonder why I’m surprised to realize that I’ve fallen in love with her. The clues to my feelings were there all along if only I’d looked back long enough to see them. Soon after Virna started working at the center, I can remember hearing a conversation that should have told me all I needed to know. Envy filled me as I heard her talking to another caregiver about a cinema date she was going on with a man she’d met. How I longed to be the one to take Virna out and make her smile.

  I didn’t hear anything more about it until a couple of months later when I heard her talking to Marietta. But this time her eyes didn’t dance when she spoke about the man.

  “He’s not worth getting upset over!” Marietta said to Virna. “You’ve just got to forget about him. There are plenty more fish in the sea.”

  Virna gave Marietta a weak smile, and I could see she was upset. What a fool the man was. She’d felt something real for him, and he’d hurt her. It angered me.

  I smile to myself now as I think back to that day four years ago when I should have realized I felt something more than just friendship for Virna. Then I look at her as she talks softly to me, and I know as cer
tainly as I’ve ever known anything that I love her.

  “My cousin Kim’s met a new guy,” she says, her voice bright and excited. “She really likes him. She wasn’t sure what was happening for a while because they went out a few times, but he didn’t say anything to her about what he wanted.”

  I look at Virna. The more I learn about what happens between men and women, the more I realize that what you see on TV isn’t like real life: real life is never that simple. But surely this man wouldn’t take Kim out if he didn’t like her?

  “It’s all fine now, though,” Virna says with a smile. “They had a chat last night and he told Kim that he thinks she’s great. She’s really happy.”

  Suddenly, I’m filled with the desire to tell Virna how I feel. She’s told me about Kim and her new boyfriend. I want what they have. I must tell Virna because I’m sure she wants this too.

  I lift my hand and watch it wave haphazardly in the air. It flails inconclusively between us, but I smile at Virna. I’ve never told anyone anything like this before, never dared imagine that it might be possible for someone to love me. But surely it is now that I’m learning to communicate and showing people a little of what I’m capable? Virna, of all people, must be able to see past my broken body?

  My hand waves in the air once more before it drops to my side. Virna looks at me silently. Her face is steady and serious. What’s wrong with her? She’s so quiet.

  “Do you think there could be something between us, Martin?” she asks eventually.

  I smile, feeling nervous and excited, scared and hopeful. I’m so sure that she feels as I do. Why else would she be a friend like no other? Why else would she help me?