Ghost Boy

I have just finished reading a most remarkable autobiographical book, ‘Ghost Boy’, by Martin Pistorius.   

He grew up an ordinary, healthy boy in a loving family environment.  At the age of 12 his body started to shut down.  He stopped eating, his muscles weakened and eventually he stopped moving, and even thinking, altogether.  His parents were told that their son was “a vegetable”, that he had lost all intelligence, and that they should simply wait for him to die. 

Time passed by until, at the age of 16, he slowly began to regain consciousness.  However, he was still completely paralysed apart from his eyes, and there seemed no way to communicate the fact that he was conscious.  The experience caused tremendous stress and heartache for his family, with his mother reaching such a state that she told him at one point, “I hope you die”, not realising that her son could hear every word she spoke.

It is impossible to imagine what the experience must have been for Martin Pistorius (though he gives some graphic insight in his book).  For years he was desperate to let people know that inside his paralysed body his mind was alert and active.  What’s more, he was at times abused by those who were supposed to be looking after him.  No-one understood his desperate plight, apart from one of his caregivers, a lady called Virna.  She noticed that his eyes seemed to respond to her words.  Through her persistence, Martin was send for some tests which revealed that he was conscious and aware of his surroundings.

This led to his parents giving him a speech computer, and he began slowly regaining some upper body functions. In 2008 he met his wife Joanna, and in 2009 they married. He has regained some control over his head and arms but still needs his speech computer to communicate with others.  He now lives in the UK with his wife and works as a web designer.

Martin Pistorius describes with vivid detail the feelings of desolation and loneliness during the long years of being unable to communicate.  At times he felt that to die would be a release from his torturous life.  I have been really challenged and inspired by the book, but perhaps by one short section in particular.  One might feel that Martin Pistorius had every right to cry out to God, ‘why have you forsaken me?’ Yet he writes:

“The one person I talked to was God … He was real to me, a presence inside and around that calmed and reassured me … I spoke to God as I tried to make sense of what had happened to me and asked him to protect me from harm.  God and I didn’t talk about the big things in life – we didn’t engage in philosophical debates or argue about religion – but I talked to him endlessly because I knew we shared something important.  I didn’t have proof that he existed but I believed in him anyway because I knew he was real.  God did the same for me.  Unlike people, he didn’t need proof that I existed – he knew I did.”

Remarkable.