Martin Pistorius was 12 when a mysterious neurodegenerative disorder slowly unwound his body, and eventually shut his mind. By the time he was 16, he was immobile and in a coma. His parents never lost hope in his recovery, but eventually they had to leave him in a care center, bringing him home in the evening.
After a few years, he slowly woke up. He found himself in a facility intended for developmentally delayed children, with an average IQ of 30. In essence, he was treated as a plant, fed, placed now and then in the sunshine, but utterly ignored as a person. Strangely, though he had no memory of how or why he was there (he remembers nothing before his illness), he found himself with a panoply of human thought, aware of everything around him, understanding the speech of those present and those on the constantly broadcasting TV. He was acutely tuned into the interactions of all those around him, and knew he was being kept out of the human family.
He was unable to communicate in any way. He gradually gained some movement in his right arm, but it was totally spastic and out of his control. After years in this torturous isolation, a massage therapist who worked on him daily became convinced there was a spark of life behind his eyes, which were able to follow her movements. After six months of building up her courage and the confidence of his parents, she took Martin to an assessment center, to see if he could communicate with some of the high tech tools being developed for those with ‘locked-in” syndrome.
Ghost Boy, by Martin Pistorious (no “with”, “and” or “as told to” co-author), is the crowning result of that initial assessment. Over his subsequent late adolescence and early manhood, Martin used his extraordinary will and remarkable intelligence to create and inhabit a complete life. He learns to “talk” via looking at symbols for letters or words, which are then spoken through a computerized voice. He begins to help those in his care center with their computer problems, eventually gaining a full-time job at the center where he was initially assessed. He travels widely, talking about how to help those like him with grave communication deficits. And he meets, online, a friend of his sister. They talk for hours deep into the nights, eventually meet (he’s in South Africa, she’s in the UK), confirm their love, and marry.
Pistorious tells the story, not of the details of how he achieved this remarkable breakout, but of how he is simply living a life. He is a scared, lonely, brilliant young man, naive in so many ways, but remarkably self aware. And even more remarkable, he has learned the power of words, and metaphors, and mental pictures, and transcribes them with beauty, humility, and awe. Here he is describing how his love, Joanna, makes him feel:
“The feeling inside me is like the peace that comes when the final leaf falls from a tree in an autumn wood. Everything is quiet. I’ve lived my whole life as a burden. She makes me feel weightless.”
Ghost Boy is a short, readable memoir which celebrates the awesome power of the human spirit and mind. It’s filled with love: the indefatigable support provided especially by Martin’s father; the joyful insight which allows Joanna to see the Martin within, not the invalid on the surface; and the awe which Martin feels every day, from the ability to simply be a part of life, rather than a spectator.