Martin Pistorius from South Africa was 12 when he was diagnosed with a degenerative illness that left him unable to move or communicate — in a vegetative state.
A few years later, when he was 16, he regained consciousness but still could not move or talk.
No one released he was ‘awake’ and Pistorius was trapped in his body.
Pistorious wrote about his ordeal,
To most people, I resembled a pot plant, to be given water and left in a corner. Though most carers looking after children like me were good, some were utterly callous. I was called ‘the obstacle’, ‘donkey’ and ‘rubbish’.
It was Virna van der Walt alone who offered me safe passage from my silent self.
Virna, a relief carer at the day centre, used to give me aromatherapy massages. She believed in me. She understood my language – the smiles, gazes and nods.
‘Is your family well?’ Virna would ask as she massaged me. My eyes followed her as I lay on my back. I kept my face still to let her know someone was sick.
‘Is your father ill?’ she said. I didn’t respond. ‘Your mother?’ Again nothing.
‘Is it David?’ I gave Virna a halfsmile to show she was right.
‘David is poorly then,’ she said. ‘What is it? Does he have a cold?’ I jerked my head down. ‘Tonsilitis?’
I gave enough of a twitch of my feeble neck for her to understand; she moved down through ear, nose and throat until she reached the chest. I gave another half-smile.
‘He’s got a chest infection?’ I knitted my eyebrows to let her know she was almost right. ‘Not pneumonia?’ she asked.
I pushed air through my nose. ‘Bronchitis?’ Virna said at last.
Happiness surged through me. I was Muhammad Ali, John McEnroe, Fred Trueman. Crowds roared their approval as I took a lap of honour.
Virna smiled back at me. She understood. I would replay this moment again and again until we next met. It punctured the shroud of invisibility around me.
It was the beginning. In July 2001, when I was 25, I was taken, on Virna’s urging, to the Centre For Augmentative And Alternative Communication at the University Of Pretoria.