Ghost Boy Read online

  I feel I can trust her. Every time she smiles, my resolve to keep my feelings in perspective weakens a little more, and reason is forgotten as I feel myself plunging ever more deeply into this new world. At thirty-three, Joanna is a year older than me. She is a social worker like my sister Kim and lives near her in Essex. But the link with Kim is just the last in a long line of almost meetings we’ve had over the years. Joanna and I realized that we attended the same regional sports event when we were schoolchildren, and she even visited my care home when she was a student. We have come so close to meeting so many times it seems inevitable we finally did. If I believed in fate, I’d think we were destined to meet.

  Joanna looks a little nervous now as she opens her mouth to speak, and I smile to myself. Even after such a short time, I know her face well enough to know if she is tired or happy, annoyed or exasperated. I’ve spent hour after hour studying her as we talk and, I’ve realized that her face is not a mask like some people’s—instead every emotion can be found written on it if I look hard enough.

  “I’m going to Disney World on holiday later this month,” she says, the words coming out in a rush. “And I’ve been thinking about this all night, so I’m just going to say it: will you come with me? I know it’s soon, but it just seems right somehow.”

  I stare at the screen in disbelief. Happiness fills me with every syllable she speaks.

  “I know you haven’t flown long haul before, but I’m sure we could find an airline that would take you,” she says. “I’ve looked at tickets, and there are seats available.

  “I’m going for two weeks, but you could stay as long as you want. I’ve contacted the hotel I’m booked into, and the room I’ll be staying in has two beds, so we can share it. Please think about what I’m saying. Don’t just say no.

  “I want to meet you, and I think you want to meet me too. Please don’t let money be the issue or worry too much about work. I understand you might feel you can’t just leave things but sometimes in life you have to, don’t you think?”

  My hand freezes above the keyboard. What almost surprises me most is that I’m not afraid or uncertain. I feel overwhelmed, but I’m ecstatic, not fearful. She wants to meet me. I don’t need to ask myself if I want to go. I want to meet Joanna more than I’ve ever wanted anything in my life. But as I wonder how I will tell her this, I realize that words will never be enough.

  “I’d love to come,” I type. “I really would.”

  “Really?”

  She smiles and waits for me to say something more but I can’t. My mind is whirring as I look at her on the computer screen in front of me.

  “I know you’ll need some help, and I don’t mind doing that,” she says. “It’s just that we have this chance to meet, and I think we should grab it!”

  She giggles. I love it when she laughs.

  “Why do you want to meet me?” I say.

  I have to ask. The question has been running around my head ever since she first asked me to take part in this crazy plan.

  She is silent for a moment.

  “Because you’re the most honest man I’ve ever met,” she says. “And because, although I’ve only known you for a few weeks, you’ve made me so happy. You make me laugh, you’re interesting, and you understand what I say in a way no one else ever has before.”

  We are silent for a moment. I can see her on the webcam as she lifts her hand towards the screen, and I know she is reaching out to touch me from six thousand miles away.

  “So you’re definitely going to come?” she asks.

  “I want to,” I say. “I will do all that I can to meet you.”

  I look at her face. I can hardly believe she is so sure of life that she believes it can be as simple as buying a plane ticket and meeting a stranger. She is so certain that we will both find love one day and tells me we can’t hurry or control it, we must just let it unfold as it wants to. She doesn’t feel defeated by love as I do at times, and I can feel her optimism infecting me cell by cell, making me believe that anything is possible.

  “Things happen at the right time,” Joanna tells me. “There’s a plan for each one of us.”

  I raise my hand to cover hers on the screen in front of me. How I long to feel Joanna close to me; how my heart turns when I look at her face and realize she really means what she says. She wants to meet me. She wants to spend time getting to know me. I can’t wait to know her. But first there is something I must talk to her about.

  “I want to tell you about myself physically,” I write. “I want you to understand exactly who I am.”

  “Okay,” she says.

  46 THE REAL ME

  “I’m not going to sugar coat it,” I write to her in an email. “I’m going to tell you everything I need help with, and if you change your mind after reading it, that’s fine.

  “I eat everything and can feed myself finger food, but I need help with a knife and fork. I can’t get in and out of the shower alone, but I can wash and dry myself, although I might ask you to unscrew the shampoo lid.

  “I also need to be shaved because I can’t do it myself, and I can pretty much dress myself if my clothes are laid out next to me. I can’t do up buttons, zippers, or shoelaces though.

  “I need help getting on and off the toilet and in and out of cars from my wheelchair. I can’t sit up unsupported, so I need to be leaned against something if I’m not in my chair.

  “I can use my feet to move my wheelchair around on floorboards but not on carpeted floors, and while I can move my chair by pushing off from surfaces with my arms, I’m not strong enough to push myself along a road or pavement if I’m in my manual chair.

  “I think that’s basically it. Oh, and I drink with a straw.”

  I stare at the screen one last time. My heartbeat quickens as I hit the send button. I wonder if I’m mad to spell this out so bleakly in black and white. But I want to be completely honest with Joanna because I don’t need a caregiver or someone who pities me. I don’t want a dreamer whose fantasy will crumble when reality hits, someone who wants to rescue me, or a woman who loves me in spite of my less than perfect body. If I want to be loved for who I am, then Joanna must know all of me. Even though I’m afraid of telling her this, I somehow feel sure she won’t care. I can’t explain exactly why. I just know she won’t.

  The next morning I receive a reply to my message.

  “None of it matters,” Joanna writes. “We can work it out as we go along.”

  The feeling inside me is like the peace that comes when the final leaf falls from a tree in an autumn wood. Everything is quiet. I’ve lived my whole life as a burden. She makes me feel weightless.

  47 A LION’S HEART

  How did Joanna come to be so fearless? I’ve asked myself this again and again in the days since she left for America alone because I couldn’t get a visa in time to meet her there. We were both bitterly disappointed, but at least we know now that it is only a question of when, not if, we will meet.

  For now, I’m learning to negotiate my way around the edges of the unexpected new shape my life is taking on. Until now my existence has been full of the straight corners and neat edges that come with order and routine. But suddenly it is full of unexpected curves and the kind of chaos that I’m learning another person can create. Joanna is uprooting everything I trained myself to expect and accept: I’d resigned myself to leading a serious life full of work and study, yet suddenly she makes me laugh until I cry; I believed I would never find a woman to love, and now I’m beginning to hope that I have. I’m usually so careful and considered, but Joanna is making me reckless. She doesn’t see barriers but possibilities; she is utterly unafraid, and I’m beginning to feel that way too.

  She told me it was a childhood friend of hers who taught her to look beyond a person’s body after he was paralyzed from the neck down. He was only in his twenties and might have thought his life had no meaning after the night when the car he was travelling in was hit by a train. Instead, he determined to
become a farmer like his father. Today he is married and runs a thousand-acre farm.

  “He might not be able to drink tea on his own, but he can manage a farm because he can speak, and that’s all he needs,” Joanna told me. “He’s also far happier than most people I know.”

  But I believe the roots of her fearlessness stretch farther back to her childhood in the South African countryside when the freedom that is so much a part of the land there seeped into her. And if there is one person responsible for her courage, I think it is her father, At Van Wyk. He was also a farmer, and from the moment his three daughters and son were old enough to look after themselves, he let them loose on his land.

  “You should always try things until you can’t do them any more,” he used to tell his children, “rather than say no and not try at all.”

  So Joanna and her siblings learned to handle guns safely when they were still young and roamed free around the land their father farmed. When At had a heart attack at the age of thirty-six, one of the first things he did after coming out of the hospital following a bypass operation was to throw a loop of rope over the highest tree branch he could find and hoist up a swing for his children. It hung far above a dry riverbed.

  “How high can you go?” he called in delight as they soared through the air above him.

  At knew he’d come close to death decades earlier than he should have, but he wasn’t going to be intimidated into being overly cautious about himself or his children. So when he took them to the coast to see the sea, he’d let them swim into the waves, always keeping an eye on them to make sure they were safe but letting them test the water and themselves. When they went into the bush to spot game, he’d let Joanna, her sisters, and brother sit in the back of an open-top truck.

  “I’ll stop and pick them up when they fall out but not before then,” he told the mother of one of Joanna’s friends when she objected to how the children were going to travel.

  Joanna’s most treasured memories are of the holidays she and her family took each year to a farm on the edge of the Kruger Game Park that belonged to her father’s best friend. For those precious weeks Joanna and her siblings would roam the bush, searching for lions, wildebeest, elephants, and impala as they learned valuable lessons about the wildlife and themselves.

  First, came the humility of understanding how little human wishes really matter: elephants treading their familiar paths to water will trample over people if their route is blocked, and a swarm of bees won’t stand for a thieving finger that wants a taste of honey. However important we each think we are, we are but a footnote to the natural cycle.

  Secondly, they learned to be aware every moment after discovering that lions become almost invisible when they lie down in long, arid bush grass to sleep each afternoon. The children had to be constantly vigilant, watching every step they made, to avoid inadvertently stumbling upon a sleeping pride.

  And finally, they learned the art of bravery and how to apply it: faced with an angry elephant, they knew they had to run as fast as possible, but if a lion charged at them, they must fool the cat into thinking they weren’t prey worth having by staying rooted to the spot.

  These were the lessons Joanna learned as a child, and this fearlessness gave her a freedom of spirit that I’d never known existed until now. But bit by bit she is beginning to pass it on to me, and I feel as if I am beginning to soar inside.

  48 I TELL HER

  Late last night I wrote to her: “I can’t stop thinking about you. I love you. I had to tell you.”

  How do I know this? I can’t say for sure but something other than logic and reason tells me it’s true. I’ve known her for only a few weeks, yet I’m sure I will know her for a lifetime now.

  “My love,” Joanna writes the next morning. “Do you know how long I’ve wanted to start a letter with those words? But until now there has never been an opportunity for me to do it. How happy you make me. I love you so much it’s almost painful.”

  My heart turns over when I read those words.

  “I know it’s crazy because we haven’t even met yet,” I write. “But I’m more sure of you than I’ve been of anything before.”

  “I understand,” she tells me. “I have to keep reminding myself this is real because sometimes I can’t quite believe I feel this way. How can I? I never knew I could have feelings like this, and it makes me almost afraid. It’s as if I don’t have control over my emotions any more.”

  “But however many times I ask myself if I’m mad, I know that I don’t care,” I tell her. “I love you. It’s as simple as that.”

  We talk urgently, words flying back and forth on emails, text messages, and down Internet phone lines, as we try to make sense of what we are experiencing.

  “But how can you be sure of how you feel when we haven’t met?” Joanna asks.

  “Because I can feel it physically, within every fiber,” I tell her. “My heart contracts when I say the words to you. I know it doesn’t make sense on so many levels, but it’s as though we’re connected. I feel more accepted by you than anyone I’ve ever met before.”

  “I feel almost mad,” she writes. “It’s as if I have to stop and pinch myself sometimes because I’m totally in love with a man I haven’t even met, and yet I feel as if I’ve known you for years.”

  I understand why we must ask questions about a hurricane that has stormed into both of our lives without warning. It is disorienting when your world becomes a different place almost overnight. But love isn’t about logic, and our phantom doubts are easily dismissed. Over the years, I’d often heard people say that you know when you meet the right person, and now I understand what they meant. The feeling is unlike anything I’ve ever known.

  49 SUGAR AND SALT

  I’m losing myself in Joanna as we dream together.

  “I want to dance with you,” I tell her.

  We paint pictures with words as we tell each other about all the things we’ll do when we finally meet. We are online almost constantly now when we aren’t at work. Our days have fallen into a rhythm that we share from opposite sides of the world because the time difference between South Africa and England is only a couple of hours. It means I can wake Joanna up in the morning with a text, chat to her before we go to work, and email throughout the day before spending all evening online together. We don’t turn our computers off even when one of us needs to eat or answer a telephone call. If Joanna calls me last thing at night, I speak to her using beeps on my phone for “No” and “Yes” so we can say a final few words to each other.

  Our longing for each other is so strong that I recently decided to text her after waking up in the early hours of the morning, knowing that she would be on her way home from a night out with friends.

  “You’ve just woken me up,” I joked and seconds later my phone beeped.

  “You’re not going to believe this,” Joanna messaged back. “But I just dropped my keys as I was unlocking the door and thought I must have woken you up before realizing that I couldn’t possibly have.”

  Another day my right hand started to hurt and I told Joanna I didn’t understand why it was painful.

  “I hurt my right hand today too!” she said as she laughed.

  I can’t explain these things, but I don’t need to question mysterious coincidences when I can concentrate on what is real. It is April 2008, and I’ve booked a flight to go to the UK at the beginning of June. It’s just eight weeks until Joanna and I will be together, and we can decide what will happen next for us. We already know that we love each other, which means we have no choice but to find a way to be together.

  My parents are quietly agitated. Will the airline agree to let me fly so far alone? Who will feed me from the tiny plate of food that I will be given or hold me in my seat to make sure I don’t hit my head when gravity thrusts me forward as we land because I don’t have enough balance to resist it? But even as their questions buzz in the air around me, I remind myself of the promise I made to gain my independence
. I am thirty-two years old. It’s been almost seven years since I was first assessed, and I’ve learned so much. It’s time now. I don’t have to be afraid any longer.

  However sure Joanna and I are, though, we know we must learn to steer our relationship through the rocks of other people’s misgivings if it is to survive. As the weeks have turned into months, it’s become more and more clear that some suspect our feelings are a fiction we are writing together without the inconvenience of mundane reality to ruin our plot. They think the illusion won’t be sustained by real life, and I can understand their skepticism: we’ve never met, our lives are completely different, and this doesn’t make any sense. But there are also times when I wish that Joanna didn’t have to experience the pain of other people’s good intentions. Even though I’m well used to it, I’d do anything to protect her from its bite.

  “What’s happened?” I asked her one evening.

  Her face was flatter than usual, the light drained out of it.

  “I’ve had a terrible afternoon,” she said.

  “Why?”

  “I saw some friends and was so excited to talk to them about you. But they just didn’t want to listen. All they kept asking was whether I realized how vulnerable you must be. They thought I was being cruel to make you believe we might have a future together.”

  Her voice cracked with sadness.

  “It was awful,” she told me. “I couldn’t say anything because I didn’t trust myself to speak.”

  “I’m so sorry.”

  “It’s not your fault. But I don’t understand how my friends could even say such things to me. Don’t they know me at all? It’s as if I’m a child they don’t trust.”

  “I know the feeling well.”

  Her face lightened for a moment before becoming sad again.

  “It makes me wonder what other people will think when they meet us,” she says. “It upsets me to realize that all they might see is your chair. It’s so wrong. My friends didn’t even mention the fact that we hadn’t met yet. All they were worried about was what matters the least.”