Martin Pistorius was a happy, healthy boy – until at the age of 12 a mystery illness left him in a virtual coma. Doctors never found the cause of his condition – even his mother gave up hope.
Yet in 1992, when Martin was 16, a miracle happened: he started to regain consciousness. But he was still trapped in his broken body, unable to communicate.
Slowly, however, he regained some control of his head and arms, and began to use a computer to write messages and operate a synthetic voice. Here, Martin tells the story of his remarkable recovery – and how he came to find love, a home and a job in England…
My mother looked at me, her eyes filled with tears. I wished that I could reassure her, stand up from my wheelchair and leave behind this shell of a body that had caused so much pain.
‘You must die,’ she said slowly. ‘You have to die.’
The rest of the world felt so far away when she said those words. She got up and left me in the silent room. I wanted to do as she bid me that day. I longed to leave my life.
As time passed, however, I gradually learned to understand my mother’s desperation and to forgive her.
Little by little I learned why it was so hard for my mother to live with such a cruel parody of the once healthy child she had loved so much.
Every time she looked at me she could see only the ghost boy he’d left behind.
Until the age of 12, I was a normal, healthy boy growing up in South Africa. But in January 1988 I came home with a sore throat and never returned to school.
In the months that followed, I stopped eating, started sleeping for hours each day and complained of how painful it was to walk.
My body weakened as I stopped using it and so did my mind: first I forgot facts, then familiar things like watering my bonsai tree, and finally even faces.
My muscles wasted, my limbs became spastic, my hands and feet curled in on themselves like claws.
I was completely unresponsive. I was in a virtual coma but the doctors couldn’t diagnose what had caused it.
I was treated for tuberculosis and cryptococcal meningitis, but no conclusive diagnosis was made. Medication after medication was tried – to no effect. I’d travelled beyond what medicine understood. I was lost in the land
where dragons lie and no one could rescue me.
It took about a year for the doctors to confess they had run out of options. All they could say was I had a degenerative neurological disorder, and that my parents Joan and Rodney should put me into an institution and let my illness run its course.
Politely but firmly the medical profession washed its hands of me. We were in effect told to wait until my death released us all.
At the age of 14 it was decided I should spend my days in a care centre, but I’d be taken home each night. Years passed with me lost in my dark, unseeing world.
I lay like an empty shell, unaware of anything around me. Then, one day, I started coming back to life.
Even as I became aware, I didn’t fully understand what had happened to me. I didn’t think of what I could or couldn’t do.
Thoughts rushed into my mind that I never considered voicing. I didn’t realise the body I saw jerking or still was mine.
My body moved, but only independently of my mind. My limbs felt distant, as if encased in concrete, and I couldn’t control them.
Just as a photographer adjusts a lens until the picture is clear, so it took time for my mind to focus.
Though my body and I were locked in an endless fight, my mind was getting stronger. Pieces of my consciousness knitted together.
I gradually became aware of each day and each hour in it. Most were forgettable but there were times I saw history unfold. Mandela becoming president in 1994 is a hazy memory but Diana’s death in 1997 is clear.
My mind began to awaken at about the age of 16. By 19 it was fully intact: I knew who I was and where I was, and understood I’d been robbed of a real life.
I was completely entombed. At first I wanted to fight my fate by leaving some tiny sign to guide people back to me, like the crumbs Hansel and Gretel left to help find their way out of the woods.
But my efforts were never enough.
Have you ever seen one of those movies in which someone wakes up as a ghost but they don’t know that they’ve died? That’s how it was, as I realised people were looking through and around me.
However much I tried to beg and plead, shout and scream, I couldn’t make them notice me.
My mind was trapped inside a useless body, my arms and legs weren’t mine to control and my voice was mute. I couldn’t make a sign or a sound to let anyone know I’d become aware again. I was invisible – the ghost boy.
My father’s faith in me was stretched almost to breaking point – I don’t think it ever disappeared completely. Each day Dad, a mechanical engineer, washed and fed me, dressed and lifted me. A bear of a man with a huge beard like Father Christmas, his hands were always gentle.
I would try to get him to under-stand I had returned, willing my arm to work. ‘Dad! I’m here! Can’t you see?’ But he didn’t notice me.
He continued to undress me and my gaze slid to my arm. It was not moving: its only outward manifestation was a muscular twitch close to my elbow. The movement was so tiny I knew my father would never notice it.
Rage filled me. I felt sure I’d burst. I gasped for breath. ‘Are you OK, boy?’ Dad asked as he heard my ragged breathing and looked up.
I could only stare, praying my silent desperation would somehow communicate itself.
‘Let’s get you into bed, shall we?’
While my father looked after nearly all my daily needs, my mother hardly came near me. Anger and resentment at what had happened poured out of her whenever she did. She wanted to put me into fulltime residential care; my father did not.
She believed my condition was permanent and that, because I needed so much care, having me at home would harm my brother David and sister Kim.
My father hoped I might get better. Mum was tortured by guilt that she hadn’t been able to save me. She was sure she had failed her child.
My mother’s unhappiness spiralled so far out of control that she tried to commit suicide about two years after I fell ill.
After taking handfuls of pills, she lay down to die. But even in her despair she wanted to tell Dad one last time how much she loved us all: this saved her.
When Dad saw what she’d done, he put her in the car and drove us to hospital. The doctors pumped Mum’s stomach.
Mum softened and became more involved in my care. She looked after me almost as much as Dad, made me the spaghetti and mince with peach chutney I liked and sometimes laid my head on her lap if I was on the sofa.
Slowly I regained enough control of my neck to jerk my head down and to the right, lifting it occasionally or smiling in reply to simple questions.
But people didn’t realise what my new movements meant: they thought it showed only the most basic improvement. No one considered my improved responses might mean my intelligence was intact.
To most people, I resembled a pot plant, to be given water and left in a corner. Though most carers looking after children like me were good, some were utterly callous. I was called ‘the obstacle’, ‘donkey’ and ‘rubbish’.
It was Virna van der Walt alone who offered me safe passage from my silent self.
Virna, a relief carer at the day centre, used to give me aromatherapy massages. She believed in me. She understood my language – the smiles, gazes and nods.
‘Is your family well?’ Virna would ask as she massaged me. My eyes followed her as I lay on my back. I kept my face still to let her know someone was sick.
‘Is your father ill?’ she said. I didn’t respond. ‘Your mother?’ Again nothing.
‘Is it David?’ I gave Virna a halfsmile to show she was right.
‘David is poorly then,’ she said. ‘What is it? Does he have a cold?’ I jerked my head down. ‘Tonsilitis?’
I gave enough of a twitch of my feeble neck for her to understand; she moved down through ear, nose and throat until she reached the chest. I gave another half-smile.
‘He’s got a chest infection?’ I knitted my eyebrows to let her know she was almost right. ‘Not pneumonia?’ she asked.
I pushed air through my nose. ‘Bronchitis?’ Virna said at last.
Happiness surged through me. I was Muhammad Ali, John McEnroe, Fred Trueman. Crowds roared their approval as I took a lap of honour.
Virna smiled back at me. She understood. I would replay this moment again and again until we next met. It punctured the shroud of invisibility around me.
It was the beginning. In July 2001, when I was 25, I was taken, on Virna’s urging, to the Centre For Augmentative And Alternative Communication at the University Of Pretoria.
I was shown a large sheet of Perspex on a stand. Red lines divided the screen into boxes in which were such images as a ball, a running tap and a dog.
‘I want you to look at the picture of the ball, Martin,’ said Shakila, the woman assessing me. I let my eyes search the screen. My eyes were the only part of my body I was master of.
They slid back and forth across the pictures until I found the ball. I fixed my eyes on it.
‘Good, Martin, that’s very good,’ Shakila said. I felt afraid suddenly. Was I looking at the right picture?
‘Now I want you to look at the dog,’ Shakila said. My eyes moved slowly, not wanting to make a mistake. I searched slowly till I found the dog.
‘I’m sure you understand us,’ Shakila said later. ‘I can see from the way your eyes travel you can identify the symbols we ask you to and are trying to use your hand to do the same.
I feel sure we’ll be able to find a way to help you communicate.
‘Wouldn’t you like to be able to tell someone that you are tired or thirsty? That you want to go to sleep?’
I wasn’t sure. I’d never told anyone what I wanted before. Most people made thousands of decisions every day. I wasn’t sure I could make one. It was like asking a child who grew up in a desert to jump into the sea.
My parents bought me a computer loaded with communication software.
Just as you choose the words you speak naturally, I had to choose what I wanted my new computer ‘voice’ to say by picking words from grids – or pages – of vocabulary.
The words were represented by symbols which I selected with a switch. The speed with which I learnt surprised Mum, who had given up her job as a radiographer to help me. I seemed to understand instructions better than she did.
I sometimes wondered if her desire to find the words I wanted was even more powerful than mine. Did she see my rehabilitation as a penance?
In her urgency and dedication to me, I wonder if she was fending off memories of the dark years after I first fell ill, when her desperation and confusion got the better of her.
Slowly, I built up a vocabulary. One day we added the colours of the rainbow to my words. Frustration could grow if I didn’t make myself clear, but there were ways to show a word I wanted.
I would click on a symbol of an ear, then one of a sink.
‘Sounds like sink? You want pink?’ Mum asked. I smiled: the word was added to my grid. Soon I got a new device.
It was a band that went round my head and had at its centre a small black dot which could shine an infrared beam on the computer screen with a slight turn of my head.
I could use the beam like a mouse. My feeble hands pressing one of my switches enabled me to choose a word I wanted. Then I would click on one last symbol – ‘speak’ – and my electronic voice would have its say.
After being asked to make a short speech at the health centre that shared a building with my care home, I started to experiment with my computer voice.
First, I put full stops into the middle of sentences so my computer voice would sound as if it was pausing for breath.
Next, I modified my American ‘voice’ to say ‘tomARto’ instead of ‘tomAYto’ to try and sound more as I would if I could speak.
I also had to choose from a dozen voices in my software which one to use.
I selected ‘Perfect Paul’, socalled because he was a good fit for me: not too high, not too gruff.
My ease with computers made my father suggest I might be able to help at the health centre. I started in 2003, working with Virna.
As I found I was able to fix problems on computers, I felt a new emotion: it puffed me out and made me feel vital.
Then I realised what it was: pride. My body was getting stronger as I used it more. On days when I was not working, I was at home practising on the computer.
I was a little sturdier when I sat upright. My neck muscles were strong enough for me to use my headmouse most of the time. I was starting to use the touchpad on my laptop a little because my right hand in particular was more reliable.
It seemed, like a new species, I was of interest to experts. People like me, who lose speech in the middle of life rather than at the start or end through illness or accident, are rare.
But the real novelty was that I’d learned so much so quickly about computer communication and I was teaching myself to read and write.
That led to me getting a paid position at the Centre For Augmentative And Alternative Communication for one day a week. Suddenly, life and I were colliding.
At every turn my eyes opened in wonder as I crashed into new experience: seeing a man with brightly coloured hair like parrot feathers running down the centre of his head; tasting a cloud of melting sugar called candyfloss; feeling the warm pleasure that comes with going shopping for the first time to buy Christmas presents for my family; or the sharp surprise of seeing women in short skirts.
I was starving for information: there was so much to know. I was learning to build websites and was accepted on to a university course, becoming one of the first two South Africans with non-functioning speech to graduate.
But one thing was missing. I don’t know if my longing for love was always a part of me or if its seeds were sown on a day I remember vividly.
It was late afternoon as a group of nursing students visited my care home. I was lying on a mattress when I felt someone kneel down beside me.
I looked up to see a young woman. Long brown hair framed her face: I was filled with a longing so strong it almost made me gasp. I wished I could stretch that tiny moment into forever. The girl who smelled of flowers and sunshine became the world to me.
Ever since I started to communicate, my hope was drawn towards women like a moth to a flame, only for me to be burned by their indifference.
When I met Joanna, I wondered if she would be different. She was a South African social worker who’d settled in Britain and become friends with my sister Kim, who was working there.
We met during a family web chat in 2008 and started emailing each other, culminating in Joanna suggesting we get together in Britain. I was curious about why she wanted to meet me.
‘Because you’re the most honest man I’ve ever met,’ she said. ‘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.’
Still, I wasn’t sure. I explained that though I had made huge progress, I still needed a wheelchair and help with many daily activities. It didn’t matter, she said; we’d work it out. One night I wrote to her: ‘I can’t stop thinking about you. I love you.
I had to tell you.’ I’d known her for only a few weeks, yet I was sure I would know her for a lifetime. ‘My love,’ Joanna wrote 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 leapt when I read those words.
I knew, though, I was taking a gamble with Joanna because there would always be a fraction of doubt, however tiny, until we met. The greatest lesson I was learning with her, though, was that living life is about taking chances, even if they make you feel afraid.
After I arrived in Britain, we spent a few days at Joanna’s flat, before going to Scotland. We hardly saw the rolling hills outside our cottage. Instead we stayed in, sitting or lying side by side, always connected by a hand within a hand, a shoulder against a shoulder or a leg carelessly thrown across a lap.
Milestone: Martin and Joanna on their wedding day in 2009
After months of longing, we couldn’t bear to be apart even for a moment. I had never known a person who accepted me so completely and had so much peace inside. Joanna didn’t fill the spaces with mindless chatter.
Instead, we drifted on the current of simply being together. Sometimes I jumped almost in surprise as she touched me – my fingers flexing when she stroked my hand, or my jaw twitching when she kissed my eyes. It was as if my body couldn’t quite believe her gentleness.
I never had someone take pleasure in me before. It was the simplest but most perfect of feelings.
It was inevitable that I would move to Britain and settle with Joanna, in Harlow, Essex. I found work as a web designer and got used to the small flat we shared.
My electric wheelchair was too big to fit into it, so I could only move up and down one small strip of corridor in my manual chair, and I’d burn myself repeatedly trying to master the kettle and toaster.
But for me the two-metre sweep of floor that I could negotiate was my own Hollywood Boulevard, the garden I saw outside the window was the Alhambra, the tiny kitchen where I tried to cook the finest Parisian restaurant.
I became stronger in my first few months in England and I could move around easily in the small part of the flat accessible to my chair by pushing off the floorboards with my feet.
My right side was getting steadier all the time. I was not so good at opening bottles but I could get coffee into cups; I couldn’t tie my shoelaces but I was able to push the vacuum cleaner around.
So much of everyday life, though, was literally above me. I felt useless as I watched Joanna hang curtains, and I’d stare at things in cupboards soaring overhead. After deciding to cook supper one night, I tried to dislodge a bag of flour from a shelf using a broom and watched it hurtle down towards me, knowing there was nothing I could do to stop it.
Joanna found me – and the flat – covered in flour when she got home that night.
We married in June 2009 in a church in Essex. I had a ring made, a wide band of yellow gold, dotted with diamonds and filigree work of two mussel shells nestling together.
They represent our love: nothing can prise mussels apart once they fuse together. As I sat with my father waiting for Joanna’s arrival in a horse-drawn carriage, I contemplated the vows I was about to make: ‘For better, for worse, for richer, for poorer, in sickness and in health, ’til death do us part.’
I would never say words that meant more. Each syllable, each line, would reverberate inside me. Was it possible that, one month shy of eight years since I was assessed by Shakila at the University Of Pretoria, I was sitting about to commit my life to Joanna?
It was she who has taught me to understand the true meaning of the Bible passage we were having read at the service: ‘There are three things that will endure – faith, hope and love – and the greatest of these is love.’
My life has encompassed all three and I know the greatest of all is indeed love, in all its forms. I’d experienced it as a boy and man, as a son, brother, grandson and friend, I’d seen it between others and I know it could sustain us through the darkest of times.
Now it was lifting me closer to the sun than I ever thought I would fly
Source: Daily Mail