Ghost Boy Page 17

  “It often happens that way,” I wrote. “People forget everything except the fact that I can’t walk.”

  “I know,” she said sadly. “But it shouldn’t be that way.”

  As I watched Joanna talk, I was filled with the desire to reach out and touch her, physically reassure her that we will prove people wrong. I wished I had some way to show her how sure I am that we will. Love is another form of faith, after all. I know ours is real, and I believe in it completely.

  “People will have to learn to deal with us because this is how we feel, and we can’t change it,” I told her.

  “But do you think they will?”

  “Yes.”

  She was silent for a moment.

  “It just makes me feel sad to know that I won’t be able to discuss you with my friends again. It feels as if I’ll never be able to trust them with the most precious thing in my life.”

  “Maybe in time you will. They might change their minds when they see that we’re staying together whatever happens.”

  She smiled at me.

  “Maybe, my liefie,” she said softly.

  That is my name now: my liefie, my love.

  We face obstacles, for sure. Being on different continents and talking solely via the phone and Internet, instead of face to face, can easily give rise to misunderstandings, so we’ve started to make rules. The first is that we must always be honest with each other; the next is that we’ll solve problems together.

  “You’ve got to eat a little salt,” South African mothers say to their children as they try to teach them that nothing is perfect when they come home crying about a playground injustice.

  Joanna and I know this, and the setbacks we are experiencing—whether it’s other people’s questions or the reluctance of the airline authorities to fly me to the UK—are bringing us closer together. To get booked on a flight to London, I’ve needed medical clearance and permissions, forms filled out and notes written by doctors. But Joanna has been as determined as I am that we won’t be beaten. It felt like we’d taken on the world and won when she called me at work one morning.

  “The airline has agreed to fly you,” I heard her say. “You’re coming to the UK.”

  It was a huge victory for us, but there are other smaller troubles that we are also learning to overcome together.

  “I’ve realized that I’ll never hear you say my name,” Joanna told me one night.

  We’d never spoken about it before, but I could hear the pain in her voice as she talked to me.

  “It makes me feel so sad to know that I’ll never hear the words ‘I love you,’” she said. “And although I have no idea why I’m thinking about this, for some reason I can’t stop now. It’s as if I’ve lost something even though I’m not sure what it is.”

  I longed to comfort her but didn’t know how to at first. I take my silence almost for granted after so many years and long ago stopped grieving for a voice that I don’t even remember having, but I understood that Joanna was mourning something precious. A few days later we were talking online as I started to hit the keys on my laptop to activate my communication system. I rarely use it to speak to Joanna because my hands are strong enough now for me to type while we talk, and my laptop isn’t compatible with our Internet phone line. But ever since she’d spoken about wanting to hear my voice, I’d been working on something for her.

  “Listen,” I wrote. “There is something that I want to say.”

  She fell silent as I hit a final key on the laptop keyboard in front of me.

  “Joanna,” a voice said.

  It was Perfect Paul, and he pronounced Joanna’s name just as I’d taught him to after spending hours unravelling his vowel and consonant pronunciation. Instead of saying it in the English way—Jo-A-nA—Perfect Paul had pronounced it with an Afrikaans inflection, just as she is used to hearing—Jo-nAH.

  “I love you,” Perfect Paul said.

  Joanna smiled before laughing.

  “Thank you.”

  Recently I sent her an envelope containing a photocopy of my hands after she told me again and again how much she longed to touch them.

  “Now I have you with me,” she said with a smile from a world away.

  It’s true there is salt as well as sweet in every life. I hope we’ll always share both.

  50 FALLING

  It’s right to say that people fall in love. We don’t glide, slip, or stumble into it. Instead we tumble head first from the moment we decide to step off the edge of a cliff with someone and see whether we’ll fly together. Love might be irrational, but we make the choice to risk everything. I know I’m taking a gamble with Joanna because there will always be a fraction of doubt, however tiny, until we meet. The greatest lesson I’m learning with her, though, is that living life is about taking chances, even if they make you feel afraid.

  It was about a week after we met that I made the choice to allow myself to fall in love with Joanna. She’d sent me an email, and I was just about to reply when I suddenly stopped myself.

  “Am I going to take another chance with my heart?” I thought. “Am I going to gamble again?”

  I knew the answer to my question as soon as I’d asked it because the prize at stake was the one I wanted most, after all. I knew what I had to do. But I promised myself that if I was going to find a real love, one that could weather the inevitable storms a lifetime together would bring, I mustn’t pretend to be what I wasn’t. I wanted to be completely honest with Joanna about whatever we discussed—whether it was the abuse I’d suffered, my care needs, or the longing I had to make love to a woman—because I couldn’t let fear force me to hide myself.

  Sometimes I felt brave when I told her things, at others my terror of rejection was the spectre that stalked me, but I forced myself to continue. Everything I’ve learned since the day I was wheeled into a room and asked to focus my eyes on a picture of a ball has made me able to now risk my heart. The lessons had been painful at times but being out in the world, making mistakes, and progressing has taught me that life can’t be experienced at arm’s length like an academic project. It must be lived, and for too long I’ve tried to keep it at bay by burying myself in work and study.

  I understand now why it happened. For a long time I didn’t know how to be in the world. I found it confusing, disorienting, and in many ways I was like a child. I believed back then that good and bad were black and white just as I’d seen on the television for so many years, and I spoke the truth exactly as I saw it. But I quickly learned that people don’t always want to hear the truth. What might seem like the right thing isn’t always necessarily so. It was hard, though, because most of what I had to learn was unseen and unspoken.

  The most difficult thing to master was the complex web of manners and hierarchies my colleagues navigated. I knew that understanding these rules would help me in so many ways, but I was too scared even to try at first for fear of making a mistake. Instead of speaking up at meetings and using some of the words I’d spent hours inputting onto my computer just in case I needed them, I stayed silent. And rather than talk openly to colleagues I didn’t know well, I was quiet. When one told me she was just “babysitting” me, I stared at her blankly because I wasn’t sure what to say.

  But gradually I’ve learned to trust my own judgement—even if it is sometimes wrong—as I’ve realized that life is about shades of gray, instead of black and white. And the most important thing I’ve learned is how to take risks because I’d never taken them before I started to communicate. But I was forced to after I started working because I knew I’d never move up the career ladder if I didn’t. So I put in hours of extra time, kept quiet when I was given tasks I didn’t understand, and crushed my disappointment when colleagues were praised for work I felt I’d contributed towards. On the other hand, I met so many people who helped and guided me, listened and bolstered me when I doubted myself.

  It is impossible to underestimate how hard I found it at times to believe in myself. When I was
sitting trying to solve a complex computer problem, ghosts from all the years of being treated as an imbecile would haunt me. It wasn’t until I started work that I realized how deeply the need for familiarity and routine had been drilled into me by my years in institutions. All I wanted was to keep moving forward, but I felt lost at times, mired in self-doubt, and I found it impossible to relax.

  Perhaps this love of routine was why I found it hard to leave jobs behind once I had them—whether it was the health center, where I got my first job doing filing and photocopying, or the communication center, where I was given a chance to stretch myself. I felt safe in each place, and it was difficult to relinquish that.

  While moving to a full-time job at the scientific research institute where I work today was unnerving in many ways, it also forced me to get used to freedom because suddenly I was in an environment where my workload could change unpredictably or deadlines alter without warning. I found it overwhelming at first to be surrounded by people with qualifications, education, and experience, when I’d taught myself to read and write at the age of twenty-eight and learned most of what I knew about computers sitting alone at my desk. I felt sure I couldn’t keep up with my colleagues, let alone compete with them.

  But gradually I realized that it doesn’t matter how you reach a place, as long as you deserve to be there. As time has passed, my confidence has grown, and I’ve realized that I’m trusted by my colleagues. It didn’t matter that I was self-taught because living life is about checks and balances, small victories and minor failures. I’d spent years longing for things to happen to me, for events to take my life somewhere unexpected. Although I found it disorienting when it started to happen each day, week or month, I learned that this is what life is like—unpredictable, uncontrollable, and exciting.

  I was still removed from it in many ways because I’d never had the chance to know someone completely, to connect with them in the way that you can do only when you fall in love. Then I met Joanna, and now I’m prepared to take the greatest chance with her. For the first time in my life, I don’t care what others think or worry about keeping up appearances and creating a good impression. I don’t care about letting someone down or not doing a good enough job. I’ve been trying to justify myself ever since I started to communicate through work and study, learning and achieving. But the one thing I will not justify is Joanna.

  Recently I told her that I wanted her to see exactly what I looked like before I arrived in England. Sitting in front of the computer, I held a web camera in my right hand, which I guided back and forth. First I showed her my face, then my arms and the loose cotton T-shirt covering my chest before pulling the camera back so that she could see the chair I sit in each and every day. She’d seen it before, of course, but now I trained the camera on myself and showed her every detail so that nothing was hidden. Joanna laughed softly as I pointed the camera at the metal plates that supported my bare feet.

  “Hobbit toes!” she said with a giggle.

  But even as I searched her face on the screen in front of me for signs of fear or confusion, I knew I wouldn’t find them. After a lifetime of such looks, I can recognize them in an instant, but there was nothing on Joanna’s face except a smile.

  “You’re beautiful,” she said softly.

  It is her belief in me that tells me I’m right to risk everything for her.

  Martin lands at Heathrow—meets Joanna (Joan) for the first time in person

  Joanna (Joan) first time she ‘met’ and spoke to Martin

  Joanna (Joan) at Disney World missing Martin

  Joanna (Joan) and Martin—June 2008

  Joanna (Joan) and Martin—June 2008

  Joanna (Joan) and Martin, crying when they found out Martin had to return to South Africa—June 2008

  Joanna (Joan) and Martin, meet again at Heathrow—August 2008

  51 CLIMBING

  I stare at the sand dune above me. It shimmers in the heat.

  “Are you ready?” my brother David asks.

  I nod.

  We’re on holiday in Namibia, and Kim has joined us. My mother was born here and we have come to see the country where she grew up. I look at the dune and wonder how I’m ever going to get up it: it is more than a hundred meters high. Mum and Dad have gone off to explore, and I’ve told David that I want to reach the top of the dune. Surprise flitted across his face before he got out of the car, unloaded my chair from the boot, and helped me into it before pushing me through the sand. Now I look up at the dune rising above me. I want to get Joanna some sand from the top of it. This dune is one of the highest in the world, and the desert is one of her favorite places.

  “The silence is so complete that you don’t realize you’ve never heard anything like it until you’re there,” she told me. “And the landscape is so huge that it changes with every hour of the day. Even the sand is softer than anything you’ve touched before.”

  That’s why I want to bottle some sand from the top of the dune for her and send it back to the UK with Kim as a reminder of me and the trips she once made to the desert with her family. Heat shimmers in waves as I look up at people running down the dune after reaching the top. They are laughing and shrieking as they hurtle down after the long climb.

  “How are we going to do this?” my brother asks.

  I’m not sure. David takes me under the right arm and helps me to stand up before I drop onto my knees in the sand. I can’t crawl so my brother pulls me forward as I try to help by digging my other arm into the sand to propel myself too. Slowly we start to move up the dune as people walking back down to cool drinks and shade stare at us in surprise. It’s almost midday, too late to be doing something like this. The sand is so warm and soft by now that it keeps collapsing, and I must dig myself out before carrying on upwards. We should have come at dawn when the sand was cooler and firmer.

  The sun beats down as David hauls me upwards. We both begin to sweat as we climb—he pulling, me digging my elbow into the sand and pushing against it to try and take some of the load of my dead weight from my brother. Higher and higher we climb, me wriggling in the sand and David pulling me upwards. The dune gets steeper the nearer to the top we get.

  “Do you really want to get all the way up there?” David asks as we stop to rest.

  He stares upwards and my eyes follow his. I have to get to the summit. Like a tribesman superstitiously dancing for rain, I must convince the heavens to smile on me and prove to Joanna that there is no barrier I will not overcome for her—even my own body. This will be the final proof that she is a part of me now, and I must show her that she will make me more than I ever thought I could be.

  David sighs in exasperation as I smile at him, and we start edging our way up again, meter by meter. There is sand in our hair, mouths, and eyes, and the light bouncing off the dune is blinding.

  “Don’t stop!” a voice calls. “You’re so nearly there.”

  I look down. Kim is walking up to join us. Far below, I can see our parents standing by the car and staring up at the three of us. They wave as I look down.

  “Let’s go,” David says.

  We’ve been climbing for about forty-five minutes now and the people who started the journey with us have long since walked back down to earth. We must make one final effort to get to the top of the dune. It is so close now. I think of Joanna once more as I dig into the sand and push myself upwards. Bit by bit I scrabble towards the summit. The sky is azure blue above me, and my mouth is dry. My heart beats with exertion, and I can hear David panting as he gives my body one final heave. Suddenly we come to rest.

  We are at the top of the sand mountain, and Kim sits down beside us. No one speaks as we struggle to get our breath back. Beneath us, the desert spreads out like an endless sea. Kim leans towards me. In her hand is a glass bottle. I watch as she opens it before handing it to me. I push it into the sand.

  52 THE TICKET

  Is it anger or frustration that bites most bitterly at the back of my throat as I
stare at the computer screen? It’s ten days before I’m due to fly to the UK, and I’m at work. I’ve just received an email from a travel agent I contacted to ask for a quote for flights to Canada. I’m attending a conference there in three months and have asked Joanna to accompany me to the event instead of my mother and father, who have always assisted me in the past. The travel agent is wondering whether I want to go to Canada with my mother or my girlfriend? Apparently Mum picked up the phone when he called to give me some information and told him she was going to book the flights. I know what she’s thinking.

  “Kim had a friend who met someone on the Internet and thought she was completely in love with him,” Mum said a few nights ago. “But then she met the man and realized they had nothing in common. It happens a lot, so I hear.”

  I’m unsure for a moment how to convince my mother I know what I’m doing. It’s like trying to tell someone who is color blind that the sky is blue when they are sure it’s green.

  “Joanna and I know each other too well for that to happen,” I sign to her on my alphabet board. “We are sure of how we feel. Everything will be fine when we meet.”

  Mum sighs.

  “I hope so for your sake, Martin,” she says. “I really do.”

  I understand her fear. Her child is spreading his wings two decades after he was supposed to. She has waited a long time for this moment, and it frightens her now it has come. I’ve been suspended in almost childhood all my life: first as a ghost boy and then in recent years as my parents have been involved in every step of my progress. It’s hard for them to think of me flying halfway across the world without them, and I understand because I’m apprehensive too.