Ghost Boy Page 2

  Years passed with me lost in my dark, unseeing world. My parents even tried putting mattresses on the living-room floor so that they, Kim, and David could all live as I did—at floor level—in the hope of reaching me. But I lay like an empty shell, unaware of anything around me. Then one day, I started coming back to life.

  Martin climbing tree

  Martin at birthday party at home

  Last normal family photo taken in 1987

  Martin at day care center

  Dad (Rodney) and Martin sittting on the couch at home

  Martin at day care center

  Martin tied in wheelchair

  Martin at day care center

  3 COMING UP FOR AIR

  I’m a sea creature crawling along the ocean floor. It’s dark here. Cold. There’s nothing but blackness above, below, and all around me.

  But then I begin to see snatches of light glimmering overhead. I don’t understand what they are.

  Something tells me I must try to reach them. It drives me upwards as I kick towards the shards of light, which skitter across the surface far above me. They dance as they weave patterns of gold and shadow.

  My eyes focus. I’m staring at a baseboard. I’m sure it looks different than it normally does but I don’t know how I know this.

  A whisper across my face—wind.

  I can smell sunshine.

  Music, high and tinny. Children singing. Their voices fade in and out, loud then muffled, until they fall silent.

  A carpet swims into view. It’s a swirl of black, white, and brown. I stare at it, trying to make my eyes focus, but the darkness comes for me again.

  A wash cloth is pushed cold across my face and I feel my cheek flame in disapproval as a hand holds my neck steady.

  “I won’t take a second,” a voice says. “We’ve got to make sure you’re a clean boy now, don’t we?”

  The snatches of light become brighter. I’m getting closer to the surface. I want to break through it but I can’t. Everything is too fast, whereas I am still.

  I smell something: shit.

  I drag my eyeballs upwards. They feel so heavy.

  A little girl is standing in front of me. She is naked from the waist down. Her hand is smeared brown. She giggles as she tries to open the door.

  “Where are you going, Miss Mary?” a voice asks as a pair of legs appears at the edge of my vision.

  I hear the door being closed and then a grunt of disgust.

  “Not again, Mary!” the voice exclaims. “Look at my hand!”

  The little girl laughs. Her delight is like a ripple of wind carving a groove in sand running smooth across a deserted beach. I can feel it vibrating inside me.

  A voice. Someone is speaking. Two words: sixteen and death. I don’t know what they mean.

  It’s nighttime. I’m in my bed. Home. I gaze around in the half-darkness. A row of teddy bears lies beside me, and there’s something lying on my feet. Pookie.

  But as the familiar weight disappears, I can feel myself rising. I’m confused. I’m not in the sea. I’m in real life now. But still I feel as if I’m floating, leaving my body and moving upwards towards my bedroom ceiling.

  Suddenly I know that I’m not alone. Reassuring presences are wrapping themselves around me. They comfort me. They want me to follow them. I understand now that there’s no reason to stay here. I’m tired of trying to reach the surface. I want to let go, give myself up to the deep or to the presences that are with me now—whichever takes me first.

  But then one thought fills me: I can’t leave my family.

  They are sad because of me. Their grief is like a shroud that envelops me whenever I break through the surface of the waves. They’ll have nothing to grab on to if I leave. I can’t go.

  Breath rushes into my lungs. I open my eyes. I’m alone again. Whatever was with me is gone.

  Angels.

  I have decided to stay.

  4 THE BOX

  Even as I became aware, I didn’t fully understand what had happened to me. Just as a baby isn’t born knowing it can’t control its movement or speak, I didn’t think about what I could or couldn’t do. Thoughts rushed through my mind that I never considered speaking, and I didn’t realize the body I saw jerking or motionless around me was mine. It took time for me to understand I was completely alone in the middle of a sea of people.

  But as my awareness and memories slowly started to mesh together, and my mind gradually reconnected to my body, I began to understand I was different. Lying on the sofa as my father watched gymnastics on TV, I was fascinated by the bodies that moved so effortlessly, the strength and power they revealed in every twist and turn. Then I looked down at a pair of feet I often saw and realized they belonged to me. It was the same with the two hands that trembled constantly whenever I saw them nearby. They were part of me too, but I couldn’t control them at all.

  I wasn’t paralyzed: my body moved but it did so independently of me. My limbs had become spastic. They felt distant, as if they were encased in concrete, and completely deaf to my command. People were always trying to make me use my legs—physical therapists bent them in painful contortions as they tried to keep the muscles working—but I couldn’t move unaided.

  If I ever walked, it was to take just a few shuffling steps with someone holding me up because otherwise I would crumple to the floor. If I tried to feed myself, my hand would smear food across my cheek. My arms wouldn’t instinctively reach out to protect me if I fell, so I’d hit the ground face first. I couldn’t roll myself over if I was lying in bed, so I’d stay in the same position for hours on end unless someone turned me. My limbs didn’t want to open up and be fluid; instead they curled into themselves like snails disappearing into shells.

  Just as a photographer carefully adjusts his camera lens until the picture becomes clear, it took time for my mind to focus. Although my body and I were locked in an endless fight, my mind got stronger as the pieces of my consciousness knitted themselves together.

  Gradually I became aware of each day and every hour in it. Most were forgettable, but there were times when I watched history unfold. Nelson Mandela being sworn in as president in 1994 is a hazy memory while Diana’s death in 1997 is clear.

  I think my mind started to awaken at about the age of sixteen, and by nineteen it was fully intact once more: I knew who I was and where I was, and I understood that I’d been robbed of a real life. That was six years ago. At first I wanted to fight my fate by giving some tiny sign, a movement or a look that, like the pieces of bread Hansel and Gretel left behind to help them find their way out of the dark woods, would guide people back to me. But gradually I came to understand that my efforts would never be enough: as I came back to life, no one fully understood what was happening.

  I was completely entombed. The only person who knew there was a boy within the useless shell was God, and I had no idea why I felt His presence so strongly. I wasn’t exposed to the rituals and traditions of worshipping Him at church and knew that I hadn’t been before my illness because my family, although they believed in God, didn’t attend. Yet somehow I instinctively knew that He was with me as my mind knitted itself back together. At times it felt confusing to be surrounded by people, utterly alone and yet aware that God was my companion. Yet my faith didn’t waver. He was as present to me as air, as constant as breathing. As I slowly regained enough control of my neck to start jerking my head down and to the right, lifting it occasionally or smiling, people didn’t realize what my new movements meant. They didn’t believe miracles happened twice: I’d already survived doctors’ predictions that I would surely die, so no one thought to look for divine intervention a second time. As I started “replying” yes or no to simple questions with a turn of my head or a smile, they thought it showed only the most basic improvement. No one considered that my improved responses might mean my intelligence was somehow intact. They’d been told long ago that I was severely brain damaged, so when the young man with stick-like limbs, empty eyes,
and drool running down his chin occasionally lifted his head, that’s what they saw.

  And so I was cared for—fed and watered, wiped and cleaned—but never really noticed. Again and again I’d ask my unruly limbs to make a sign and show someone I was still there, but they would never do as I asked.

  I’m sitting on my bed. My heart is beating as my father undresses me. I want him to know, to understand that I’ve returned to him. He must see me!

  I stare at my arm, willing it to work. Every bit of me condenses into this moment. I stare at my arm—pleading, cajoling, admonishing, and begging. My heart leaps as I feel it respond to my pleas. My arm is waving high above my head. At last I’m leading the way back to myself with the kind of sign I’ve spent so long trying to make.

  But when I look at my father, neither shock nor surprise is written on his face. He simply carries on pulling off my shoes.

  Dad! I’m here! Can’t you see?

  But my father doesn’t notice me. He continues to undress me, and my gaze slides unwillingly to my arm. It’s only then I realize it’s not moving. However powerful my hope seems, its only outward manifestation is a muscular twitch close to my elbow. The movement is so tiny I know my father will never notice it.

  Rage fills me. I feel sure I’ll burst. I gasp for breath.

  “Are you okay, boy?” Dad asks as he hears my ragged breathing and looks up.

  I can do nothing but stare at him, praying that my silent desperation will somehow communicate itself.

  “Let’s get you into bed, shall we?”

  A pajama top is pulled on over my head, and I’m laid down. Anger bites into my stomach. I know I must switch it off; it will hurt too much if I don’t. I must lose myself in nothingness or else I’ll go mad.

  At other times I tried to groan, hoping that if a noise escaped my chest someone would wonder what it meant, but I could never make a sound. In later years I’d sometimes try to speak, but I was always silent. I couldn’t pick up a pen to scrawl a message or utter a plea for help. I was marooned on the island of myself, and my dreams of being rescued disappeared as hope guttered inside me.

  Horror came first, then bitter disappointment, as I turned in on myself to survive. Like a turtle retreating into its shell, I learned to escape reality in fantasy. I knew I was going to spend the rest of my life as powerlessly as I lived each present day, and eventually I didn’t try to respond or react but stared at the world with a blank expression.

  To other people, I resembled a potted plant: something to be given water and left in the corner. Everyone was so used to me not being there that they didn’t notice when I began to be present again.

  I’d been put into a box long before, after all. Each of us has. Are you the “difficult” child or the “histrionic” lover, the “argumentative” sibling or the “long-suffering” spouse? Boxes make us easier to understand, but they also imprison us because people don’t see past them.

  We all have fixed ideas of each other even though the truth can be far removed from what we think we see. That is why no one asked what it might mean when I started to improve enough to answer simple questions like “Would you like tea?” with a turn of my head or a smile.

  For most of the people who met me, I was just a job. To the staff at my care home, I was a familiar fixture they didn’t take any notice of after so many years; to care workers at other places I was sent when my parents went away, I was just a passing patient; and for the doctors who saw me, I was “the one who can’t do too much,” as one memorably told his colleague as I lay like a starfish on an X-ray table.

  My parents had full-time jobs and two other children to look after as well as me, but they did everything from changing my diaper to cutting my toenails. Attending to my physical needs took so much time and energy, it’s no surprise my mother and father didn’t stop to think about whether I’d defied medical odds and had a recovery that was nothing short of a miracle.

  So that’s why I stayed inside the box I’d been put into so long before. It was the one marked with a single word: “imbecile.”

  5 VIRNA

  The smell of the mandarin oil is sharp but sweet as Virna massages my arm. Her hands move seamlessly as she works the leaden muscles. As I stare at her, she raises her head to smile at me, and I wonder yet again why I didn’t notice hope when it first arrived in my life.

  At first all I knew was that Virna never showed her teeth when she smiled and she twitched her leg nervously as she sat cross-legged in a chair. She’d started working at my care home as a relief caregiver, and I noticed such details about her because that’s what you do when people don’t talk to you. But then Virna started speaking to me, and I realized she was someone I could never forget. Most people speak at, around, over, or about me, so anyone who treats me like a cut above the average root vegetable is unforgettable.

  One afternoon Virna told me her stomach was aching. It’s the kind of everyday confession I’ve heard from the people around me for years as they’ve chatted unguardedly, thinking I’m not really with them. What I know about some of the caregivers’ health problems is hardly worth knowing: one has a husband with Alzheimer’s, another has problems with her kidneys, and one woman’s vaginal tumor almost left her childless.

  But when Virna spoke to me it was different. She wasn’t talking to herself, someone else, or even the empty room like most people do. She was speaking to me, chatting as she would to anyone her own age about the thoughts that floated through her mind like dust motes in sunlight. It was a conversation any twenty-something friends might have but I’d never experienced it before. Soon Virna started telling me about everything from the sadness of her grandmother’s illness to the new puppy she’d got and the boy she was excited to be going on a date with. I felt almost as if I was making my first friend.

  That was the reason I started looking at Virna, which is not something I often do. My head usually feels like cinder block when I try to lift it, and I’m rarely at the same eye level as other people because I’m always sitting in a chair or lying down. It takes so much effort that a long time ago I gave up making eye contact with people who look but never see. I sit for hours each day staring blankly into space. But that changed when Virna began giving me and some of my fellow inmates aromatherapy massages to soothe our twisted limbs. Lying on my back while she kneaded my aching muscles, I was able to let my eyes follow her as she spoke to me, and bit by bit I started to peep out from the shell I’d retreated into.

  Virna looked at me properly, which was something no one had done for a long time. She saw that my eyes really were the windows to my soul and became more and more convinced that I understood what she said. But how could she convince anyone else that the unresponsive ghost boy was capable of more?

  Months turned into one year and then two. About six months ago Virna had seen a TV program about a woman who’d been helped to communicate after being rendered mute by a stroke. Soon afterwards Virna went to an open house day at a nearby center where she’d heard experts talk about what could be done to help those who can’t speak, and she came back excited to tell me about what she’d learned.

  “They use switches and electronic devices to help people communicate,” she said. “Do you think you could do something like that, Martin? I’m sure you could.”

  Other care staff had also gone to the open house day but weren’t as convinced as Virna was that I might be a suitable candidate.

  “Do you really think he’s got it in him?” one of them asked after she’d spoken about her hopes for me.

  The woman bent towards me with the shadow of a grin on her face, and I smiled to try and show her that I understood what she was saying. But my only two gestures—jerking my head down to the right and smiling—are interpreted as the knee-jerk reactions of an undeveloped mind, the kind of responses that any six-month-old baby can make, so she didn’t take any notice.

  The caregiver looked at me and sighed as her grin faded. I wondered if she knew that her breath was bit
ter from the coffee she’d recently been drinking.

  “Can you imagine anything so ridiculous?” she said later to her friend after Virna had left. “There’s no way any of them could communicate.”

  The two women looked around the room.

  “Maybe Gertje?”

  They looked at a little boy who was playing with a toy car nearby.

  “He’s a bit better than some, isn’t he?”

  The women were silent for a moment before their eyes came to rest on me. They didn’t say anything as they looked at me sitting in my wheelchair. They didn’t need to. I know I’m considered one of the lowest functioning subjects in a place where the only entry requirement is an IQ of thirty or less.

  Despite all these doubts, Virna wouldn’t be swayed. A fire of conviction had been lit within her. After telling people again and again that she thought I could understand what was being said to me, she’d spoken to my parents, who had agreed to have me tested. Tomorrow they’re taking me to the place where I might finally be offered a key to my prison door.

  “You’re going to do your best, aren’t you?” Virna says now as she looks at me.

  I can see she’s worried. Doubt flickers across her face like cloud shadows racing across the horizon on a sunny day. I stare back, wishing I could tell her that I’ll use every fiber of my being to make the most of an opportunity I never thought would come. This is the first time I’ve ever been assessed like this, and I’ll do all I can to give some small sign that I’m worthy of the attention.

  “Please do as much as you can, Martin,” Virna says. “It’s so important that you show them what you can do because I know you can.”