LOCKED- in syndrome
A South African man locked inside his body for over eight years unable to show he was conscious heard his despairing mother tell him: “I hope you die”. Martin Pistorius was just an ordinary boy with an interest in playing with gadgets when, at the age of 12, he suddenly started to shut down. Defying doctors and any attempt at diagnosis, he was sent home from school with flu symptoms and never returned. He stopped eating, his muscles weakened and eventually he stopped moving, and even thinking, altogether. In his book Ghost Boy, he relates how his parents were told he was “a vegetable”, that he had lost all intelligence, and that they should simply wait for him to die. Yet when he was 16, he awoke – and spent the next eight years as a conscious brain trapped inside a paralysed body.
He was inspired by a bizarre motive to fight and get himself understood: being made to watch repeat episodes of children’s TV programme Barney. “I cannot even express to you how much I hated Barney,” he said. He was so fed up with being made to watch the singing dinosaur that he made himself learn to tell the time – without the use of a clock – to count down until it was over. “I would watch how the sun moved across the room or how a shadow moved throughout the day,” he said. “Simply to make it to when I was taken out of my wheelchair and that for a brief moment, the aches and pains in my body could subside.” Though doctors eventually diagnosed Pistorius with cryptococcal meningitis, it remains unclear what made him emerge from his vegetative state when he was 25. He then taught himself to read and write and trained as a web designer. Now speaking through a voice synthesiser and moving with a wheelchair, he lives in Harlow, Essex, with his wife Joanna. Independent, 14 Jan; D.Mirror, 17 Jan 2015.