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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