Ghost Boy Read online

  Lying on my back, I’d watch as she unzipped the small bag filled with oils that she always carried with her. As I heard the sound of a bottle being opened, I’d wait to see what smell would fill the air. Sometimes it was citrus, sometimes mint or eucalyptus, but each time the fragrance hit my nostrils I was taken from Kansas to Oz.

  “I’m going to do your legs first today, and then I’ll do your back,” Virna tells me. “We haven’t done it for a couple of weeks, and I’m sure it must be sore.”

  She looks at me with her inquiring eyes. Virna is small and slight with a voice to match, and I’ve always known she is a kind person. I could hear it the first time she spoke to me and feel it in the healing fingertips that worked muscles long knotted by disuse.

  My heart swells as I look at Virna. We have forty-five minutes together now and, just as a child counts out shells collected on a day at the beach, I will go through each one again. I must take care not to rush through these moments. Instead I will slow each one down so that I can replay them because they are what sustain me now. Virna is the only one who sees me. More importantly, she believes in me. She understands my language—the smiles, gazes, and nods that are all I have at my disposal.

  “Is your family well?” Virna asks as she massages me.

  My eyes follow her as I lie on my back. I keep my face still to let her know that someone is sick.

  “Is your father ill?”

  I don’t respond.

  “Your mother?”

  Again nothing.

  “Is it David?”

  I give Virna a half smile to show that she is right.

  “David is poorly then,” she says. “What is it? Does he have a cold?”

  I jerk my head down.

  “Tonsilitis?”

  I give another twitch of my feeble neck but it is enough for Virna to understand. Moving down through ear, nose, and throat, she finally reaches the chest, and I give her another half smile.

  “He’s got a chest infection?”

  I knit my eyebrows to let her know that she is almost right.

  “Not pneumonia?” she asks.

  I push air sharply through my nose.

  “What else is there?”

  We stare at each other.

  “Bronchitis?” Virna says at last.

  Happiness surges through me as I smile. I am Muhammad Ali, John McEnroe, Fred Trueman. Crowds are roaring their approval as I take a lap of honor in the stadium. Virna smiles back at me. She understands. I will replay this moment again and again until we next meet because this one—and the others like it—is a sword that punctures the shroud of invisibility that has been wrapped around me.

  Virna even inspired others to talk to me more—in particular, my sister Kim. I always knew that she looked after me: feeding me gravy she’d saved from her plate because she knew I liked it, bringing Pookie to sit on my lap, or pushing my wheelchair close to her while she watched TV. But after Kim realized that I was responding to Virna, she started to talk to me more—telling me about her life the way any sister might tell her older brother. She spoke to me about what was happening at university and the coursework she was worried about as she trained to become a social worker, or the friends who had made her happy and the ones who hadn’t. Kim didn’t know it, of course, but I understood every word and thought my heart might burst with happiness as I watched her walk up to accept her degree. Other than Virna, she was the one person who could interpret what I was trying to communicate at times, guessing what I liked and didn’t like better than most.

  That’s why I’ve missed Kim so much since she moved to England a year ago, but at least I still have Virna. In a life where people talk relentlessly about my physical needs—am I hot or cold, tired or hungry?—she sees me as more than an empty vessel. And now Kim is no longer here to hug me, Virna is the only person who touches me in anything but a perfunctory way. Others wash and wipe, dress and dust me down, but it’s always as a means to an end. Only Virna touches me for no other reason than to soothe my aching body—she comforts and heals, making me feel like something other than the repulsive creature I know I am.

  I understand that people don’t touch me affectionately because they are scared to. I’m a little scared of myself if truth be told. When I catch sight of my reflection in the mirror, I quickly look away because staring back at me is a man with glazed eyes, a bib to catch his drool, and arms that are drawn up to his chest like a dog begging for bones. I hardly recognize this stranger, so I understand if other people find him hard to stomach. Years ago I went to a family party where I heard one of my relatives talk about me as I sat in the corner.

  “Look at him,” she said sadly. “Poor thing. What kind of life is that?”

  Embarrassment flooded through me as the woman looked away. She couldn’t bear to look at me, and I knew I was ruining whatever pleasure she might have taken from the party. It wasn’t surprising. How could anyone enjoy themselves when confronted with such a wretched sight?

  12 LIFE AND DEATH

  I’m poised to bury the first crampons in the rockface of communication. The switches I’ll use to operate a computer have arrived, and I’ve started practicing with them, knowing they are so much more than nuts and bolts, discs of plastic, or networks of electric wires. Talking, chatting, arguing, joking, gossiping, conversing, negotiating, chitchatting: these are all within my reach now thanks to the switches. Praising, questioning, thanking, requesting, complimenting, asking, complaining, and discussing: they are almost at my disposal too.

  First we must decide which software program to buy, so my parents order various demonstration CD’s from Europe and America to test out. Weeks turn into months as my mother spends hours looking at website pages loading slowly on the Internet while my father devotes his evenings to reading information he has printed during his day at work.

  As I watch and listen, I begin to understand what will help me best express myself. Like an artist mixing paint to just the right consistency for his canvas, I must choose the right software. Now, nearly six months after I was first assessed, my parents urge me to tell them what I want. They’re asking me because they’ve seen that I don’t hang my head like a beaten dog any more now there’s something interesting to look at. Hope rises off my mother and father like steam from a scalding bath as they begin to see tiny signs of what I might be capable.

  I can’t stop thinking about how my life will change once we finally decide which software to buy. The thought that I might soon hear my “voice” say, “I’m hungry” as many times as I want it to astounds me. Realizing that I might be able to ask, “What’s on the TV?” amazes me. These simple words are my own personal Mount Everests, to think I might soon conquer them is almost unimaginable.

  I find myself drawn back to certain symbols that I look at in wonder. “Who” is represented by a blank face with a question mark on it and “what” is a square with a question mark inside. These are the building blocks of questions I haven’t been able to ask. “I want” is represented by a pair of hands reaching towards a red block, while two parallel thick black lines mean “I am.” This is the symbol I return to perhaps more than any other because I am so unsure of what to say after those two small words. I am . . . What? Who? I don’t know. I’ve never been given a chance to find out.

  Before I begin to answer those questions, I must master the basics of any sentence—single words and their symbols. Juice, tea, sugar, milk, hello, goodbye, I, you, we, they, no, yes, chicken, chips, meat, and, hair, mouth, bread: only once I’ve learned these, can I start to put them together to make sentences.

  “I would like orange juice.”

  ”No, thank you.”

  “I’m hungry.”

  “I would like to go to bed.”

  “I am cold.”

  “I would like radishes and toast with jam.”

  First, though, I must show my parents which software program I want by nodding my head when they read out the names, but it feels impossible to decide.
Again and again they’ve asked me, but I can’t bring myself to choose, and we’ve been stuck in the doldrums of indecision for weeks now.

  “Sometimes in life you just have to move forward,” my father told me a few days ago. “You have to make a decision and stick with it. We just want you to show us which software you’d like us to buy. We’re pretty sure you know which one you want, Martin.”

  He looks at me as I stare mutely back at him.

  “This is just the start,” Dad says softly. “It isn’t life and death.”

  But it feels like it to me.

  I’ve never made decisions before, and now I must make the hardest one of all. How do you pick the bridge you will use to travel from one world into another? This software isn’t just a piece of equipment: it will be my voice. What if I make the wrong choice? What if I pick something that limits me too much or is too complex for me to use? If I make a mistake, I might never get this chance again.

  “We can buy something else if we don’t get it right at first,” my mother tells me.

  But her reassurances don’t soothe away my terrors. Even as one part of me wonders how far my parents’ faith will stretch—if I can’t use the software, will they give up the wild dream the skeptics around us think will never come true? I find myself questioning what it will mean if all goes well and my world starts to open up. My parents might now believe I’m capable of more than anyone thought possible, as they’ve watched my right hand get a little steadier with the switches and seen me speed up as I practice selecting symbols, but they still don’t completely understand. What will happen to us if the world we’ve known for so long changes to the extent that it tips off its axis? I’m so used to a cage that I don’t know if I’ll be able to see the open horizon even when I’m staring at it.

  As doubts and anxiety fill me, I force myself to think of a telephone call my parents and David made to Kim a few weeks ago at Christmas. As they chatted, I sat nervously in front of my parents’ computer, and my hands shook even more than usual as I slowly clicked on symbols. Then my father held the phone close to the computer speakers, and I pressed the switch for a final time.

  “Hello, Kim,” my disembodied computer voice said. “Happy Christmas.”

  There was silence for a moment before my sister spoke, but then I heard the joy in her voice from almost six thousand miles away. And in that moment I knew the ghost boy was finally coming back to life.

  13 MY MOTHER

  Frustration flickers across my mother’s face as she stares at me. I know this look well. Sometimes her features become so still that her face almost freezes. We’re working at the computer together as we try to add words to my growing vocabulary. It’s August 2002, a year since I was first assessed, and we’ve been learning to use my communication system for about six months. Kim brought the software with her on a visit from the UK after I finally decided what I wanted, and I even have my own laptop now after Mum took me to buy one.

  “These are all too old,” she said purposefully as she looked at the display of laptops lined up like gravestones in a computer shop. “I want the newest one you have—top of the range, please. It must be quick and powerful. My son mustn’t have any problems with it.”

  Once again I watched her negotiate for me just as I’d seen her do so many times over the years. In her firm but polite manner, I’ve seen Mum insist to doctors who’ve said I was well that they must examine me again and argue with other medics who’ve wanted to put me at the back of the line. Now she was going to make sure I got the best laptop the shop had to offer.

  I hardly dared touch the laptop at first and simply stared at it whenever Dad, Mum, or David switched it on. Listening in awe to the music that played like magic when the black screen burst into life, I’d wonder how I was ever going to learn to control this strange machine when I didn’t even understand the keyboard. Letters might be just another kind of symbol; but, unlike the pictures I’d spent so much time getting to know over the past few months, I don’t know how to read them.

  Just as you choose the words you speak naturally, I must pick what I want my new computer “voice” to say by selecting words from grids—or pages—of vocabulary. My software came with very little pre-programmed, so now my mother and I must input every word I want in my vocabulary and its corresponding symbol. Then I will be able to use my switches to move the words around and select what I want to say on-screen before the computer voices it.

  Today my mother and I are working on words about color because, just as she did when I was a child, she is helping me learn a new language. Mum has even given up her job as a radiographer to teach me intensively, and we work together for several hours every day now when she comes to pick me up from the care center at about two p.m. After going home, we work on building grids for about four hours before she leaves me to practice using them alone.

  I know the speed with which I’m learning has surprised her. At first, she had to teach herself how to use the software before showing me. But as time has gone on, she’s seen that I can complete every task she gives me and trusts me to do more. So instead of sitting and reading the computer manuals alone, Mum now reads them to me, and I commit everything she says to memory as we learn together. More and more, I seem to understand the instructions better than she does, and there are times when I have to wait until she realizes what she’s doing wrong. But there is nothing I can do to tell her because, despite all my progress, I’m still communicating using only the most basic words and phrases.

  Now I look at Mum as she stares at me before turning to the screen. So far today we’ve added the colors of the rainbow to my new grid—red, yellow, pink, green, purple, and orange—as well as the other most obvious choices like blue, black, and brown. But it’s getting harder now that we’re moving into more esoteric shades of the color spectrum.

  “Cerise?” Mum asks.

  I keep my face still.

  “Emerald?”

  I know exactly what word I want. We often reach an impasse like this as we build a grid.

  “Magenta?”

  I don’t respond in any way.

  “Navy?”

  For a moment frustration builds inside me. It claws at the back of my throat as I wish my mother could guess the word I want because, if she can’t, I’ll never be able to say it. I’m entirely dependent on her to suggest every word I want added to my new vocabulary.

  Sometimes there are ways to show the word I’m thinking of, and earlier I used a switch to click on the symbol showing an ear and then the one bearing the picture of a sink.

  “Sounds like sink?” Mum asked. “Do you want pink?”

  I smiled and the word was added to my grid. Now there’s just one more shade I want—turquoise. As Mum runs through the spectrum, I wonder how I’ll describe the color of a summer sky if she doesn’t think of it.

  While it’s frustrating for me, I sometimes wonder if my mother’s desire to find the words I want is even more powerful than my own. She is as consumed by this process as I am and never seems to tire of sitting with me at the computer for hour after hour, day after day. When we aren’t working together, my mother carries around pieces of paper on which she scribbles word lists as she thinks about the next grid we’ll build and the words I might want to add to it. The more we work, the more she realizes how extensive my vocabulary is, and I can see the shock in her eyes as she starts to understand how much I know.

  I think she’s beginning to realize how underestimated I’ve always been, but I’ve no idea how it makes her feel. I suspect it might horrify her to think that I’ve been fully aware for years, but we don’t talk about it, and I don’t think we ever will. Does she see my rehabilitation as a penance for sins of the past? I can’t be sure, but in her urgency and dedication to me, I wonder if she is fending off memories of those dark years after I first fell ill and the countless arguments when David, Kim, and Pookie would disappear, and I’d be left sitting in the corner.

  “Look at us!” my mother wo
uld scream at my father. “We’re a mess. Martin needs special care that we can’t give him, and I don’t understand why you won’t let him have it.”

  “Because he needs to be here with us,” my father would roar back, “not with strangers.”

  “But think of David and Kim. What about them? David used to be such an outgoing little boy, but he’s getting more and more withdrawn. And I know Kim seems brave, but she needs more of your attention than she gets. She wants to spend time with her father, but you’re always so busy with Martin. Between him and work you never get a chance to be with the rest of us.”

  “Well, that’s how it has to be because I’m the only one looking after Martin, aren’t I? I’m sorry, Joan, but we’re a family and he’s part of it. We can’t just send him away. We’ve got to stay together.”

  “Why, Rodney? Whose sake are you keeping him here for? Yours, Martin’s, or ours? Why can’t you just accept that we can’t look after him? He would be better off somewhere being cared for properly by people who are experts. We could visit him, and Kim and David would be so much happier.”

  “But I want him here. I can’t let him go.”

  “And what about me, Kim, and David? This isn’t doing any of us any good. It’s too much.”

  On and on the fight would go, spiralling out of control as each battled with the other to win the war, and I would listen to it all, knowing I was the cause, wishing I could be in some safe, dark place where I never had to listen to this argument again.

  Sometimes, after a particularly bad argument, Mum would storm out of the room, but one night Dad put me into the car before driving away. As I wondered if we’d ever go home again, I was filled with guilt about what I’d done to my family. It was my fault this was happening to them. If I’d died, everyone would have been better off. Eventually we went home, of course, and the familiar stony silence that always followed an argument calcified around us again.

  But there was one fight I’ll never forget because after Dad had stormed out, Mum was left crying on the floor. She was wringing her hands, moaning, and I could feel the raw grief flowing out of her: she looked so alone, so confused and desperate. I wished I could reassure her, stand up from my wheelchair and leave behind this shell of a body that had caused so much pain.