MARTIN PISTORIUS with Megan Loyd Davie
Locked in Syndrome must truly be a fate worse than death. Pistorius was a normal little boy until the age of 12 but by 14 both his brain and his body were paralysed. Eventually his brain woke up but his body never did. Nobody knew he was home until years later a care
giver at the day home tried to reach him after attending a workshop. Within 18 months he was communicating with a computer, working and going to school. He writes about how much pain his body was in sitting in a wheelchair all day. When he go older it was worse because sometimes he was put down so he was sitting on his testicles and he couldn’t move nor ask for assistance.
At home his father was his main care giver. Mom found it too difficult. “My mother looked at me, her eyes filled with tears. I wished that I could reassure her, stand up from my wheelchair and leave behind this shell of a body that had caused so much pain. ‘You must die,’ she said slowly. ‘You have to die.’ The rest of the world felt so far away when she said those words. She got up and left me in the silent room. I wanted to do as she bid me that day. I longed to leave my life. As time passed, however, I gradually learned to understand my mother’s desperation and to forgive her. Little by little I learned why it was so hard for my mother to live with such a cruel parody of the once healthy child she had loved so much. Every time she looked at me she could see only the ghost boy he’d left behind.”
“However much I tried to beg and plead, shout and scream, I couldn’t make them notice me. My mind was trapped inside a useless body, my arms and legs weren’t mine to control and my voice was mute. I couldn’t make a sign or a sound to let anyone know I’d become aware again. I was invisible – the ghost boy. My father’s faith in me was stretched almost to breaking point – I don’t think it ever disappeared completely. Each day Dad, a mechanical engineer, washed and fed me, dressed and lifted me. A bear of a man with a huge beard like Father Christmas, his hands were always gentle. I would try to get him to understand I had returned, willing my arm to work. ‘Dad! I’m here! Can’t you see?’ But he didn’t notice me.
BOY is an easy read and quite a page turner. Highly recommended.