Ghost Boy Page 7

  Then I see sadness flicker in Virna’s eyes.

  “I’m sorry, Martin,” she says.

  All the happiness that was rippling off her a few moments ago as she talked to me about Kim has suddenly disappeared. Virna is flat, lifeless. I can feel her withdrawing from me. I want her to stay, but she’s disappearing.

  “We can only ever be friends,” Virna says slowly. “You must understand that. There never can be anything between us, Martin. I’m sorry.”

  My smile sets in my face like concrete. I don’t know how to wipe it off as I listen to her speak.

  “I’m so sorry if you feel differently,” Virna tells me. “But I have to be honest and say there will never be anything more between us.”

  My smile finally shatters. I can feel a pain in my chest. I’ve never known anything like it before, but I know what it is. I’ve heard it talked about in movies and listened to people describe it in songs. I understand what it is now even as it pierces me: heartbreak.

  17 THE BITE

  I was sitting on the toilet. I’m not sure why. I must have been a teenager, and maybe Dad had just given me a bath. Whatever the reason, I was naked and I’d had enough. It had been a bad day—not bad because something awful had happened but because nothing ever happened.

  Dad leaned over and stretched his arms around me. I felt his fingers closing around a pimple on my back. It hurt. I didn’t want him to touch it. I wanted him to stop, to leave me alone. I stared at my father’s stomach, which was level with my eyes. It was big, round and sturdy. It wasn’t just because of his beard that my mother often called him “Father Christmas.”

  Rage welled up inside me as I looked at Dad’s stomach. He leaned even closer, and his belly grazed my mouth as I felt his fingers dig questioningly into my pimple. The pain was so sharp, I wanted to roar at him to stop, shake his hands off me, and storm out of the room, just as I’d seen Kim and David do so many times when they were annoyed. For once, I wanted to be able to decide who did what to me, when and how. I wanted my father to stop touching me and just let me be. Even a baby can scream its dissatisfaction, but I couldn’t even do that.

  Rage burned bitter in the back of my throat as I opened my mouth as wide as I could before sinking my teeth into my father’s stomach.

  He gasped in shock as he stepped back and looked at me in surprise.

  “That bloody hurt,” he said as he rubbed his tummy.

  Guilt filled me first—and then sweet relief.

  18 THE FURIES

  If there were Three Furies in my story, their names were Frustration, Fear, and Loneliness. These were the phantoms that trod their blackened path through my mind for seven long years—nine if my awareness is dated from the time I started to dip in and out of life. But while the Furies almost beat me many times, thankfully I learned how to defeat them every now and again too.

  Frustration came first. If there was an Olympic gold in outrunning her, I’m sure I would have won it. Frustration was a twisted, hissing mistress, unique because she was all-consuming. Fear might have been a sudden cold punch in my stomach and Loneliness a dead weight on my back, but Frustration started in my chest, turned my guts into twisted metal and soon overwhelmed my entire body. Every molecule vibrated with anger as she infected me.

  Frustration rose up inside me so often because I was constantly reminded that I couldn’t determine my own fate in even the smallest of ways. If people wanted me to sit in the same position for hour after hour, there was nothing I could do about it, although pain shot through me. Words can’t express how much I sometimes hated the cold custard and prunes that I ate every lunchtime for years. And other people’s determination to make me walk was always sure to start Frustration wailing again.

  My parents still believe that I might be able to walk again because, although they are spastic and uncontrollable, my limbs aren’t paralyzed. It was my mother who started taking me to physiotherapy sessions to make sure my muscles and joints didn’t freeze completely through inactivity. She and my father were so committed to the belief that I would walk some day that neither would listen when a doctor suggested permanently severing some of the tendons in my feet to reduce the spasticity. He said it wouldn’t matter because surely I would never use my feet again? My parents refused his advice, took me to see a new medic, and two years ago I had the first of two extensive foot surgeries to flatten my curled-in feet in the hope that it might help me to walk again one day.

  Not being able to walk always felt almost insignificant to me compared to my other limitations. It seemed far more problematic not to be able to use my arms to feed or wash myself, make a gesture, or hug someone. Not having a voice to say I’d had enough food or the bath water was too hot or to tell someone I loved them was the thing that made me feel most inhuman. Words and speech separate us from the animal kingdom, after all. They give us free will and agency as we use them to express our desires and refuse or accept what others want us to do. Without a voice, I couldn’t control even the simplest things, and that’s why Frustration so regularly started her violent lament inside me.

  Next came her sister Fear as black as night—the fear of being powerless over what happened to me from day to day or in the future, the fear that I was growing up and would be put into permanent residential care because my parents couldn’t cope with me as they got older. Every time I was sent to one particular residential home in the country, when my family went on holiday or my father was away on a business trip, terror filled me when I thought I might never leave it again. Those few hours each day with my family were what kept me alive.

  I hated that care home in the country more than any other place I was sent. Years ago, after overhearing my parents talk about what time they would leave the next day to take me there, I knew I had to do something to stop them. When Fear woke me up in the middle of the night, I realized I had to rid myself of her forever. After listening to check everyone was asleep, I wriggled my head off my pillow and into the plastic pillowcase encasing it. As it crackled around my head, I pressed my face into the pillow itself as hard as I could as I told myself that I wouldn’t have to go to the country the next day; I would soon be free of Fear.

  Breathing faster and faster, I began to sweat as my head started to feel light. I’d found a way to escape Fear, and I felt elated. But the emotion soon gave way to despair as I realized that I wasn’t going to succeed. However hard I tried, I couldn’t stop my pitiful body from breathing. The next day I went to the country as planned and carried on visiting the home there once or twice a year.

  “They can look after you better than I can,” my mother would tell me again and again if she was the one who was driving me there.

  She always said the same thing, like an incantation she hoped would ward off the guilt as it rose inside her.

  “You’ll be well looked after,” she insisted, clinging on to the words as she said them.

  If Mum had known what happened to me in that place, then I’m sure she never would have said this. But she didn’t know and I felt torn between rage and sadness as I listened to her: rage that my parents were making me go to a place I hated so much and sadness that my mother truly seemed to believe strangers could care for me better than she could. The fire of my longing to stay with her burned white hot inside me, and I wished she could see it and know how much I wanted to be with her and no one else.

  Last came Loneliness and she was perhaps the most terrifying of all the Furies because I always knew that she could slowly suck the life out of me even as I sat in a room surrounded by people. As they hurried to and fro, chatted, argued, made up and fell out again, I could feel the paralyzing bony fingers of Loneliness clamp tightly around my heart.

  However isolated she made me feel, Loneliness could always find new ways to make her presence felt. A few years ago I had an anesthetic after going into the hospital for an operation, and Mum and Dad had left to go to work by the time I was wheeled into the operating theatre. A nurse held out my arm as a needle
was put into a vein, and an anesthetist connected a syringe full of white liquid to it.

  “Sweet dreams,” he said softly as I felt a burning sensation move up my arm towards my chest.

  The next thing I knew, I was lying on my side on a cold hospital bed. It was moving, and I couldn’t see properly. I felt utterly disoriented as I struggled to understand where I was. But as I felt a hand take mine to adjust a needle going into a vein, I grabbed onto it as hard as I could, hopeful for a moment of connection that would defeat the feeling of being completely alone. But the hand was pulled roughly from my weak grip and I heard footsteps retreat as I lay squirming with shame, thinking how repulsive I must be.

  What saved me was discovering that Loneliness had an Achilles heel, which meant the skein of isolation she wound around me could occasionally be unravelled. I just never knew when it might happen.

  I once remember my father talking about a book one of his work colleagues had read. It was about a man who had been disabled as an adult and complained that one of the worst things about sitting in a wheelchair was the discomfort that came from being badly positioned in it. My ears pricked up immediately because as I’d grown older I’d become increasingly aware that I was often left sitting on my balls. The feeling was a very specific type of discomfort: pain gave way to numbness before pain put in a follow-up appearance like a music hall actress making a bawdily triumphant encore to a delighted crowd.

  After the conversation with his colleague, my father was always extra careful to position me gently and make sure I wasn’t trapping my testicles beneath me when he sat me in my wheelchair. Each time he did, Loneliness went snarling back to her solitary cave because when my father showed that he was thinking about me, we defeated Loneliness together.

  19 PEACOCK FEATHERS

  I will my hands not to shake as I stare at the computer. I must think methodically, reason my way step by step through the problem on the screen in front of me. I have to be calm and rational if I’m going to solve it.

  “What do you want me to do next?” Virna asks as she sits next to me.

  I’m not sure yet. I stare at the screen and feel my mind flipping back through all I’ve learned about computers, the hours spent watching software demonstrations and practicing new programs. I feel sure the answer is somewhere inside me. I just need to find it.

  It’s February 2003, a year after I first got my laptop and nearly two years since I was assessed. I’m sitting with Virna in front of a computer at the health center that shares a building with my care home. She started working here a few months ago, and we still see each other often because she is so close by. Virna has remained true to her word that we could be friends even after I told her how I felt, and we talk as we always have. Mostly it’s everyday stuff, which is how I knew there were problems with the computers in her office.

  “Apparently there are issues with the cooling fans,” she told me.

  I doubted if this was the real reason for the glitches. Teaching myself to read might be taking a long time, but learning the language of computers has been easy in comparison. Just as I once learned to tell time by memorizing shadows, I’m trying to commit letter shapes to memory and can now understand a few written words. Maybe it’s simply a question of reawakening the aptitude for electronics I had as a child, but I’ve discovered that I understand computers almost intuitively since getting my own. In recent months I’ve taught myself to use a string of software programs, including one that translates my symbols into words so that I can send emails, and another that allows me to answer the phone via my laptop.

  “Hello, this is Martin Pistorius speaking,” my computer voice says. “I am unable to talk so I speak via a computer, and this takes some time, so please be patient.”

  Even so, most people ring off because the blandness of my computerized voice is so hypnotic they think they’re talking to an answering machine. But I have at least started to address the problem after being asked to give a talk about my experiences. The staff here at the health center had heard my story from people at the care home and asked me to tell them more about my communication system. But after spending forty hours inputting an eight-minute speech, I realized that my voice was so monotonous even Romeo would have bored Juliet if he’d used it to declare his love.

  So I started to experiment with ways to make my computer voice sound more natural. First, I inputted full stops into the middle of sentences so that my computer voice would sound as if it was pausing for “breath.” Next I decided to modify my American “voice” so that I say “tomARto” instead of “tomAYto” in an effort to sound more as I would if I could speak. I also had to choose which voice to use: just as some people pick from a list of fonts when they type, I was able to select one of a dozen voices contained in my computer software. The one I chose is called “Perfect Paul” because he sounds like a good fit for me—not too high, not too gruff.

  Tailoring my speech has certainly made me feel more confident, and yet it didn’t allay the fear that filled me on the day of the talk itself. I knew I would recognize many of the people in the room, and the constant tremor in my hands—one of the legacies of my past—got worse and worse as I became more anxious. Virna was sitting near me while I gave my talk, but even so I shook so much I could hardly hit the switches to start the computer. I forced myself to breathe deeply as I stared at the screen and heard my voice start to speak.

  “Hello everybody and thank you for coming today,” it said. “I am really nervous so I wrote a few things down.”

  Line by precious line, I went on to describe what had happened to me since the day of my assessment and all that I’d learned since then—the software and symbols, the switches and headmouse—and people came up to congratulate me when I’d finished. Then they turned to discuss what I’d said with each other, and it was strange to know they were talking about words I’d spoken. It was the first time that had ever happened.

  The ease I have with computers is what made my father suggest I might be able to help with the problems here at the health center. Apparently he said they should give me a chance to fix them, which is why Virna came to get me from my classroom at the care center. I think my teacher that day must have thought the world had gone mad if anyone was entertaining the idea that someone from her end of the corridor might be able to fix a computer. But to me it felt like a sign, the chance I’d been waiting for to show what I was capable of.

  My nerves twisted as Virna pushed me down the hall. I wanted to prove that I could do more than just speak words via a laptop. Sitting down in front of the computer, I stared at the screen. Virna was going to have to be my hands and use the mouse to navigate into the system so that I could fix it as she read to me what was written on the screen, and I told her what to do. Fixing a computer is a bit like going into a maze, after all: you might go down dead ends, but eventually you find your way through. I just had to trust my instincts as the computer prompted us with commands, and we sat there for hours, fixing first one problem, then another, and finally solving a third.

  I was filled with exhilaration when we’d finished. I’d done it! I could hardly believe I’d managed to work out a problem that no one else had been able to. I had Virna check the computer again and again just to make sure that I’d really solved it, and each time it was clear the system was working properly again.

  “Well done, Martin!” Virna kept saying, smiling at me with pleasure. “I can’t believe you did that. The technicians couldn’t manage it but you did!”

  She laughed to herself as she pushed me back down the corridor to the care center. “That will show them!” she kept saying.

  Even going back to my classroom couldn’t dampen my mood. I didn’t notice where I was anymore. I didn’t care. All I could see was the computer screen and its inner workings flashing around my head as I navigated myself and Virna around the maze. I’d done it!

  A few days later, there was another problem with the email system, and once again Virna told me about it
. My heart began to race with excitement, and I wished with all my might I’d be asked back to help out again. But it was several days before Virna finally came down the corridor to get me. Maybe her manager thought I’d just been lucky the first time and wasn’t sure I’d be able to repeat my success.

  But now Virna and I are sitting together in front of a computer screen once more.

  “Shall I hit F1?” she asks.

  I jerk my head to the side to tell her not to.

  “How about F10?”

  I smile.

  She hits the key and we’re taken into the first layer of the computer’s modem settings. I know there will be many more to come before I find the problem. My heart drums as I look at the screen; I must calm myself down and think clearly. I have to show for a second time what I’m capable of and prove beyond doubt that I really know what I’m doing. I’m focused as I tell Virna where to go next. Somehow I know I’ll be able to fix this problem. I can feel it. I’m sure that with Virna’s help I’ll be able to navigate my way inside this machine and find whatever is troubling it.

  It’s then that I feel it—an emotion I hadn’t felt until I first fixed the computer. Now it’s back again, and the feeling is strange, like a peacock splaying its multicolored tail feathers; it puffs me out and makes me feel vital. Then I realize what it is: pride.

  20 DARING TO DREAM

  Is there anything more powerful than a mother’s love? It’s a battering ram that breaks down castle doors, a tidal wave that washes away all in its wake. Mum’s eyes are bright with it as she turns to me.

  “I’ll just run in to check where we need to go, and then I’ll come back and get you,” she says.

  Mum gets out of the car and slams the door. I sit with the spring sunshine pouring through the windshield, making me squint. We’ve come to the communication center where I was first assessed nearly two years ago because I’ve been invited to attend an open house day with students after my mother insisted on updating the experts about my progress.