real life

'I was a ghost boy. I could see and hear everything - but no one could tell.'

In January 1988, aged twelve, Martin Pistorius fell inexplicably sick. First he lost his voice and stopped eating; then he slept constantly and shunned human contact. Doctors were mystified. Within eighteen months he was mute and wheelchair-bound. Martin’s parents were told an unknown degenerative disease had left him with the mind of a baby and he probably had less than two years to live.

Martin was cared for at centres for severely disabled children, a shell of the bright, vivacious boy he had once been. What no-one knew is that while Martin’s body remained unresponsive his mind slowly woke up, yet he could tell no-one; he was a prisoner inside a broken body. In this extract from his deeply moving memoir Ghost Boy, Martin describes what it felt like in those horrific years.

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 movements or speak, I didn’t think about what I could or couldn’t do. Thoughts rushed through my mind that I never considered voicing and I didn’t realise 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.

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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 realised they belonged to me. It was the same with the two hands that trembled uncontrollably whenever I saw them nearby. They were part of me too but I couldn’t control them at all.

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I wasn’t paralysed: 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 I couldn’t control them. People were always trying to make me use my legs – physios 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.

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Just as a photographer carefully adjusts his camera lens until the picture becomes clear, it took time for my mind to focus. But while my body and I were locked in an endless fight, my mind was slowly getting 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. I was completely entombed.

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That was six years ago. At first I wanted to fight my fate by leaving some tiny sign to guide people back to me, like the pieces of bread Hansel and Gretel left behind to help them find their way out of the dark woods. But gradually I came to understand that my efforts would never be enough: even as I came back to life, no one fully understood  what was happening.

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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 realise 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.

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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.

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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 realise 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?’

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A pyjama 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 hope guttered inside me as I realised that I would never be rescued.

Horror came first, then bitter disappointment, and 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 pot 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.

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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 while I lay like a starfish on an X-ray table.

Meanwhile, my parents had full-time jobs and two other children to look after as well as me but they did everything from changing my nappy 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 ’.

This is an extract from Ghost Boy by Martin Pistorius , published by Simon&Schuster, RRP $21.99 paperback / ebook $13.99. You can buy the book here.