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Thursday, 5 March 2015

Martin Pistorius - Ghost Boy

Review written by Ro Bennett and read live on the bookshow on 5th March 2015

This is a very touching and inspiring true story written in 2011 in which the author describes living with locked-in-syndrome and being unable to move for almost 14 years.. Martin Pistorius was born in Johannesburg, South Africa in 1975. He contracted an unknown illness in January 1988 at the age of twelve. First he lost his voice and stopped eating; he began losing voluntary motor control and eventually fell into a coma for three years. Doctors were mystified.

Martin's parents were initially told that an unknown degenerative disease had left him with the mind of a baby and he probably had less than two years to live. Martin went on to be 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.

He began regaining consciousness around age 16 and achieved full consciousness by age 19, although he was still mute and completely paralyzed, with the exception of his eyes. He was horribly abused by some of his so called carers. One for instance was shovelling too hot mince, too quickly into his mouth and swearing at him because he had difficulty swallowing it and was a slow eater. It caused him to vomit it back up but she still fed it to him. He was also sexually abused and suffered terrible nightmares for years. Of course he couldn’t tell anyone what was happening.

Martin was unable to communicate with other people until, in 1998, when he was twenty-three years old, Virna van der Walt, an aromatherapy masseuse began treating him and sensed some part of him was alert. She noticed that he could use his eyes to respond to things she said. She sent him to the University of Pretoria for testing, where they confirmed he was conscious and aware of his surroundings.

Experts were dismissive about his potential, but his parents persevered in their efforts and he began slowly regaining some upper body functions. Then in 2001 they gave him a speech computer and he was so adept at using it that they soon realised their son was as intelligent as he'd always been. 

With no memory of the time before his illness, Martin was a man-child reborn in a world he didn't know. He was still in a wheelchair and unable to speak, but he was brilliant at computer technology. He learned to communicate via computer, make friends and change his life. He got a job and each night when he came home from work he studied for an advanced certificate in education, then his high school diploma and a university degree. 

In 2003, Martin was chosen to address a conference of health professionals talking about AAC. AAC is short for Augmentative and Alternative Communication and is a term used to describe a variety of ways to help people who find it difficult to communicate by using natural speech.  “AAC strategies” use a variety of methods and include Signing, gestures, symbols, pictures, communication books and boards, Low-tech and High-tech communication devices. 

There were more than 350 people waiting for him to talk via his computer. He wrote  “Somehow I've become an accidental public speaker in recent months and my story has even been featured in the newspapers. It has surprised me that a room full of people at a school or community centre want to hear about me and I can't think why so many have come today.”

In 2008 he met the love of his life, Joanna, a friend of his sister Kim. In 2009 they married and he moved to the UK. In 2010 he started his own web design business which he runs from his home in Essex. As of 2011, Martin has regained limited control over his head and arms but still needs his speech computer to communicate with others.

He describes himself a Geek with a wicked sense of humour and a love of technology. He loves animals, is a keen photographer, enjoys watching cricket, Formula 1 Grand Prix and films, listening to music, spending time with friends and, most of all, being with his wife.

You can see him on Youtube being interviewed and he is a handsome young man with a wonderful smile. 

Ghost Boy is an incredible, deeply moving story and Martin Pistorius is a lovely man and a great inspiration. Well worth reading and researching even more deeply. 

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