Weekend Argus (Saturday Edition)
Computer-generated voice helps man tell story of 12 years trapped in his body
IN A robotic-sounding voice, the words flow from Martin Pistorius’s computer. It’s as if he is making up for the 12 years he was imprisoned inside his own body, unable to communicate.
He speaks through sophisticated computer software that allows him to quickly write his words on a keyboard, which the computer then reads out. For his voice, he chose Perfect Paul, not too gruff, or too high-pitched. Like his own voice would be, if he could speak.
This is how Pistorius, a South African now living in the UK, tells his story to the producers of Invisibilia, a new US public radio podcast about human behaviour. He talks about how he endured “locked in syndrome” for over a decade, mute, mysteriously paralysed – but aware of his surroundings.
It was in January 1988 when Pistorius, who had turned 12, returned home from school inexplicably ill. He thought it was the flu. “He began to sleep, and sleep, like a baby. Nearly all day,” his mother Joan tells the radio team. Then he stopped eating. What had happened to their son? The same child who, when he was 3, marched into his parents’ bedroom and told them he wanted to be an “electric man” when he grew up. He was gone. Pistorius, who had suffered a brain infection, lost his ability to move, talk, or even to move his eyes and make eye contact. He failed every brain activity test. “His father used to force his mouth open and I would put his food in,” she remembers.
Doctors then diagnosed Pistorius with a degenerative neurological disorder. They told his family he had the mind of a baby and wouldn’t live for long. He was deemed a “vegetable” with “zero intelligence”. But Pistorius didn’t die. Instead, for 12 years, his family followed the same daily routine. They would dress him, feed him, load him into the car and take him to a care centre. “Eight hours later, we would bathe him, feed him, put him in bed. I would set my alarm for every two hours to wake up to turn him so he would have no bedsores,” recalls his father, Rodney, a mechanical engineer.
On the podcast, his mother relates how she once went up to him, and told him: “I hope you die.” It was horrific, she says. Unknown to her, Pistorius could hear her utter those words. He was wide awake, aware of everything. But he couldn’t communicate.
For years, he was put in front of the TV, watching endless re-runs of Barney and Friends.
At the care home, where he spent his days, uncaring staff would leave him alone in cold baths, or pour scalding hot tea down his throat.
“I prayed and wished with all my might to die.”
But a nurse, Virina van der Walt, believed that in the limp body Pistorius was there. She started to communicate with him through eye contact and his twitches. In 2001, she convinced his family to send him to the University of Pretoria for an augmentative and alternative communication assessment. It was discovered he could communicate, and understand far more than was believed.
His mother gave up her job to spend four hours every day with him, to learn how to use his computer software to communicate. Two years later, he got a job filing papers at a local government office, and then fixing computers. He became one of two South Africans with non-functioning speech to graduate from university.
“I wanted to prove I could do more than just speak words via a computer,” says Pistorius, who now runs his own web development company in the UK, where he later moved after meeting the love of his life, Joanna, a South African social worker, via Skype.
● The Invisibilia podcast is on http://www.npr.org/rss/podcast.php?i d=510307 Pistorius’s memoir, Ghost Boy: My Escape From a Life Locked Inside My Own Body, is available at bookstores.