Ghost Boy - Martin Pistorius
Never was a book as aptly named as Ghost Boy, which refers to the years Pistorius spent paralysed and considered of vegetable mentality by those around him. Within 18 months of the onset of his mysterious illness at 12 years old he was mentally comatose, but after a few years he woke up to find himself locked inside his body. People took care of his physical needs but looked right through him, unable to see that he had regained his awareness. He had no means whatsoever of communicating. “I was marooned on the island of myself, and hope gutted inside me as I realised that I would never be rescued.” He beautifully and elegantly describes his mental process for coping until an aromatherapist, Virna, saw he was awake in there. At 22 he was finally properly assessed. Strapped to a wheelchair and unable to make any sound at all, by harnessing his involuntary movements he could communicate. His natural aptitude for computer technology saw him employed to help further develop the existing communication system for the handicapped, and from there he’s never looked back.
His level of dependence for every single physical need is frightening and he doesn’t shy away from the impact of this upon his family, but neither does he dwell on it. They sent him to a care centre during the day but kept him at home overnight for all those years. With two younger siblings, his mother found him too difficult to manage and his father was the primary carer when he came home from work. The ghost boy’s care almost split his family and this is a guilty burden he carries. “…the familiar stony silence that always followed a row calcified around us again.”
This story is set in South Africa but I imagine the appalling abuse he experienced throughout the 1990s in some of the respite care centres would be universal. I can’t imagine how his parents felt when reading this. If we ever needed reminding how the small kindnesses of strangers can make so much difference, this book will do it. This survival story is quite a page turner as the cover tells us that against all the odds, he falls in love, marries and sets up a web design business. He tells of the gentle unfolding of his love affair with a tenderness and realism entirely believable in such extraordinary circumstances.
Books reviewed are available at the Book Warehouse in Keen Street, Lismore, and at Lismore Shopping Square.