Interview: Martin Pistorius, author

For years, Martin Pistorius was a prisoner of his own body, unable to communicate with carers, a helpless victim of wanton, and at other times unknowing, cruelty. Then someone reached beyond his wrecked body to his mind, and he grasped that chance with all his will. Now he has written a memoir about his life

• Martin Pistorius: 'When you have spent 14 years in institutions waiting to die, then to have a life that is worth living gives you a greater sense of appreciation'

HE IS in prison. There are no locks, no chains, no cells, no bars. No limits. But Martin Pistorius is still trapped. Time moves interminably inside his head. Seconds. Minutes. Weeks. Years. They tick tock past and still no-one finds him. He screams silently but people look through him, as if he is invisible. He can see them. Why can they not see him? His eyes seem dead to those who look but it is only his wrecked body, not his mind, that traps him. His limbs are curled, redundant from years of illness and unconsciousness, and they jerk uncontrollably of their own volition rather than his will. There is no door to this prison, no exit. His mind may be free, but it must stay within the confines of its own existence and never, ever connect with anyone else's. He watches shadows dance, and ants crawl, and imagines a kingdom in which those insects march in bloody ant battles. Around him, the real world hurtles by as he inches slowly towards infinity in its wake.

Martin Pistorius was a normal, bright, healthy 12-year-old when he became ill at his home in South Africa. He contracted cryptococcal meningitis and tuberculosis of the brain, but his illness developed into a neuro degenerative condition that doctors didn't fully understand and he was expected to die. For three years, he was unconscious of everything around him. Considered irreparably brain damaged, at the age of 14, he was put into a care home during the day.

But his father insisted that, however much a shell of the boy he had

been, he was still a son and a brother and must come home at night to his parents, brother and sister. Pistorius could do nothing for himself. He was dressed, undressed, washed and fed like a baby.

But around the age of 16, he became aware of light penetrating darkness, and tried to move towards that light. He heard voices that became less distant. Gradually, he became aware of 'self'. But he didn't know who he had been, only who he was now, in the moment. "I wasn't suddenly aware. It was more gradual than that. I suppose a bit like a baby being born," explains Pistorius, who has written a memoir called Ghost Boy. The boy he had been had disappeared from his memory. "Because of the people around me, I had a sense of my past life from what they talked about, but it wasn't really something I thought about. It was the least of my problems. I didn't really remember what I was like before so I didn't have a sense of being a different person. I just was who I am."

Even now, he sometimes gets uneasy looking at the evidence of an existence that eludes him. "I found it uncomfortable to look at photos of the boy I once was."

Nobody knew about the changes that had taken place in him when consciousness returned. He tried to tell them with his eyes, send some desperate signal out that he had come back to them. Nobody picked up that signal and nine years later, he had given up hope. He thought he was lost forever. "I didn't believe I would ever be discovered. That was one of the hardest things for me to cope with and there were many times when the realisation that I was going to spend the rest of my life in that state, and would eventually die alone in some institution, was too much for me to bear. I really struggled to come to terms with the horror of what seemed like the future that lay ahead of me."

So much has happened since then. Being unlocked from that prison, aged 25, learning to read and write and communicate through the written word, finding a job, falling in love and getting married, moving country. Pistorius's story is a mix of serendipity and determination on an epic scale.

We meet at a station in Essex. I catch sight of two people through the pillars on the stairs: Pistorius in his wheelchair looking intently at passers by, his blonde wife Joanna standing quietly beside him. They touch almost constantly, hands entwined, a communication without speech. Pistorius is 35 now, and though his speech never returned, it is hard to imagine him ever being unable to communicate his return to consciousness, so lively are his eyes. But the physical progress since those dark days has been remarkable. The arms that once would not do his bidding are strong and capable. The rain is torrential outside the station and we have to cross the car park for coffee. Pistorius is first there, setting off at a furious pace towards a canopy, so determined, hands manoeuvring his chair efficiently, the wheels dancing through puddles, spraying up small, triumphant fireworks of water.

His fingers move speedily over his laptop keys, answering questions with little hesitation, but the answers also come in his eyes. So many nuanced expressions there. Earnestness, humour, intensity, shyness. Joanna often understands from his eyes what he wants to say without him having to write it. They were giving a little girl a lift in their car one day, she says, and the child said to her: "Why is Martin making those strange faces?" And Joanna glanced at him and said: "He is asking your name." Pistorius smiles.

It was Virna, a young aromatherapist who came to his care home, who first realised he was not who he seemed. Perhaps, being a similar age to him, Virna felt enough empathy to recognise something others didn't, not even his own family. Pistorius had long given up trying to make eye contact with people but when Virna worked with him, trying to soothe his twisted limbs, he lay on his back which made it easier for his eyes to follow her. Virna talked to him, despite getting no obvious response, and one day told him about a television programme she had seen about helping people who had suffered strokes to communicate. She was sure Pistorius could do that, couldn't he? When staff in the home didn't listen to her, she talked directly to his parents who agreed to have him assessed.

Pistorius's condition had inevitably caused great stress in his family. His mother had given up her job as a radiographer to look after him but she had eventually wanted him to go into full-time care, partly to protect family life for her other two children. But his father had refused and taken over many of the morning and evening routines in his son's care. At one terrible low, Pistorius recalls his mother becoming so distraught, she looked at her son with tears in her eyes and, thinking he could not understand, said aloud: "You must die."

Yet Pistorius forgives her this. His levels of empathy are remarkable, perhaps because he was forced for so many years into the role of watcher and listener, hearing people unburden their problems around him, absorbing their pain without them knowing. They talked to him about things they thought he could not understand. "I was shaken to my core," he says, recalling the incident with his mother, "perhaps even in shock, and I didn't really know how to react. Obviously it is a hurtful thing to say, but I don't really feel it affected my relationship with her. I felt compassion for her and sorry, perhaps even guilty, about the pain I was causing her. I think what stayed with me from that moment was a mother that was really in immense pain to see her child like that."

In his book, he asks: "Is there anything more powerful than a mother's love?" For as soon as tests revealed that Pistorius was indeed functioning at a level nobody but Virna had guessed at, his mother invested many hours each day helping her son learn to communicate, at first with a picture board and later using computer software. Gradually, he learned to read and write. He had an insatiable hunger to learn and yet it was also frustrating.

"I reached a point where I felt a bit like, is this it? I was an effective communicator yet to a large extent not that much seemed to have changed in my life. I was still going to the care home if not every day, then most days, and I had a feeling of … I can communicate now but so what? This became a bit of an internal struggle. At the same time, I had this enormous gratitude and thankfulness that I was now able to communicate, so much so that it often brought tears to my eyes." Communication is what makes you more fully human, he thinks.

Before he could engage with people, they knew his name but not his personality. They tended to neuter him, to think he did not have feelings and passions like everyone else. "Through communication you become more of a person, as opposed to some guy in a wheelchair. I remember reading a quote, by a US senator in the 1800s called Daniel Webster who said, 'If all my possessions were taken from me with one exception, I would choose to keep the power of communication, for by it, I would soon regain all the rest.' I am living proof that is true."

As he learned to communicate more effectively using computers, he also became very proficient at IT, and eventually began working part time. His new life had begun.

When his sister moved to the UK, he was communicating on Skype with her and some friends when he first saw and 'spoke' to Joanna, who is also South African. They began e-mailing every day and their conversations were so intense they got to know one another very quickly. They arranged to meet in London.

Pistorius was so dependent on people round him for survival that it was perhaps not surprising his parents were worried. What if this relationship did not work out and their son was abandoned half-way round the world? But the attraction between the two was instant. "It was her personality and her great sense of humour and the kind, caring person that she is," says Pistorius. "Also the fact that nothing I said put her off." He had been careful to warn her by sending a list of things he needed help with so she could see what she was undertaking. "But nothing was ever really an issue. She was able to see me for me, and it was like my disability didn't even exist. Most of all, it was her beautiful soul that shone through."

Joanna, a social worker, is very obviously warm and loving with her husband, but not smothering or fussing. She laughs when she thinks back to that list. She didn't even read it. "I think people are frightened of disability but it just doesn't bother me because there's so much more. I think it might also be that my grandmother is severely disabled after a stroke and I have a friend who is quadriplegic now. I grew up with him, and he's still the same person. People say, 'You will have to do everything' but I don't see it like that. My love for Martin is bigger. When you fall in love you don't see anything." Anyway, Joanna points out, you can marry someone able bodied and have them experience a terrible tragedy. You don't stop loving them. In their case, it's just that the tragedy happened first.

Martin moved to the UK to be with Joanna and they married here in 2009. They are so seemingly at one together that they make very easy company. But does physical vulnerability make you also more emotionally vulnerable? Does Martin fear losing his relationship more than an able-bodied person? "There was a time when I had a real fear and anxiety that she would leave and reject me, especially because that had been all I had known and experienced before meeting her, and because of that I was very insecure. But now I no longer have the fear. I know she loves me and I know our love is pure, real and eternal. I worry sometimes – what if something were to happen to her, especially with her job – but that is because I love her. Like I once said to her, my heart beats for her. So, no, I don't fear the loss of our relationship."

Pistorius's communication is strikingly direct, almost fearless in the way he confronts emotional reality. Maybe when you have spent so long without words, there's an urgency about using them honestly. "We are really close to one another," Joanna says. "You know when you meet some men you have to work through all the nonsense to get to the person? Martin hasn't got that. I found him to be really such an honest, genuine person. I don't think Martin can lie. I could feel right from the beginning he was so sincere. He really wants to understand you so he makes me feel like I am the only one."

While he accepts he is more physically dependent than other people, emotionally he had to become very resilient because he encountered so many traumas alone. When his family left him for holidays, they put him in a home in the country that they thought beautiful and peaceful.

Martin both hated and feared that place. He was subjected to grotesque physical and sexual abuse by carers who considered him worthless, less than human. He could tell no-one. "I would say that because of the horrendous things I had to go through alone, with no emotional support from anyone, I am extremely emotionally independent. I depend on people for physical help but I am reasonably emotionally self-sufficient – though I value and appreciate emotional support from others."

The sense of isolation he felt was intense. Yet he had an instinctive concept of God that did not come from intellectual pursuits, like being taught about the bible or reading books. He had no memory of learning about God, yet felt a presence. "I believe that God is always with us whether we know it or not. I just knew. It was a feeling, a sense of not being alone. There were things that happened that could only be explained by some form of divine intervention and higher power." His experiences might reasonably have led him to doubt both God and man yet he says he believes in both. "In general, I'm an optimist about human nature. I think that despite the cruelty and the callous, inhuman things people are capable of, the vast majority of people are good."

But there have been huge practical challenges. For so many years he had no personal autonomy, and had to accept what others decided for him – the clothes they put on him, the food they gave him, the places they took him. Modern living, with its vast array of choice, was bewildering. What should he choose at the supermarket? How should he organise his time? Joanna took him into a shoe shop quite early on in their relationship and he found everything so overwhelming that he broke down.

"That incident really upset me actually," says Joanna. She didn't realise how difficult ordinary, everyday things were for Pistorius. Was she frustrated by his inability to make decisions at times? "It wasn't frustrating ever. I don't get frustrated. I get sad sometimes." But in general, they both have a sense of joy rather than sadness. "I appreciate things," says Pistorius. "I don't take them for granted. I have a sense of how precious loved ones are and how life can change in a blink of an eye. When you have spent 14 years in institutions waiting to die, then to have a life that is worth living gives you a greater sense of appreciation."

He does not waste time considering who he might have been had illness not struck. Perhaps he would not have been as determined, or compassionate? Perhaps he would not be as patient or as good a listener? But he is who he is. When he was trapped inside his own head he spent a lot of time thinking. "I guess the question that has plagued mankind for all eternity," he says, "what is the meaning of life?" It is an impossible question and yet, you sense on some level, Martin Pistorius has as instinctive an understanding of that as anyone possibly can. "I know one thing which is important to me is to make a difference, even if it is in the tiniest way, to just one person's life. I strive to be a good person but I don't know if I really have a clear sense of purpose – other than to just live and enjoy life to its fullest."

• Ghost Boy is published by Simon & Schuster, 14.99.This article first appeared in Scotland on Sunday on 17 July 2011.