Miracle man unlocks the words from within
US podcast tells story of how technology gave Martin Pistorius back his life He can’t speak but he communicates
MARTIN Pistorius’s r o b o t i c - s o unding words flow effortlessly and eloquently from his computer. It’s as if he is making up for the 12 years he was imprisoned in his body, unable to communicate.
He now has a voice, speaking through sophisticated computer software that allows him to type on a keyboard what he wants to say, with the computer then reading out his words. For his voice, he chose “Perfect Paul”, a voice not too gruff or too high-pitched. As his own voice would be, if he could speak.
Pistorius, a South African now living in the UK, shared his experiences with the producers of a new podcast series about human behaviour on National Public Radio (NPR) in the US. The episode, Invisibilia, tells how he endured “locked in syndrome” for more than a decade; mute, paralysed – but aware of his surroundings.
It was January 1988: Pistorius had just turned 12 when he came home from school, inexplicably ill. He thought it was flu. “He began to sleep, and sleep, like a baby. Nearly all day,” his mother, Joan, says. Then he stopped eating. What had happened to their son? The child who, when he was three, had marched into his parents’ bedroom and told them he wanted to be an “electric man” when he grew up.
This was the child who designed an alarm system to keep his little brother out of his prized Lego set, made flashing stars for the family Christmas tree, and fixed broken plugs when he was 11.
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.”
Doctors then diagnosed Pistorius with a degenerative neurological disorder. They told his family he had the mind of a baby and would not live long. He was deemed a “vegetable” with “zero intelligence”.
Joan recalls: “The last thing he ever said was in hospital: “When home?”
Medical staff told his family they should make him comfortable until he died. But Pistorius didn’t die. For 12 years, his family followed the same daily routine. They would dress him, feed him, load him in 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,” says Pistorius’s father, Rodney, a mechanical engineer.
On the podcast, his mother relates how she once told her son: “I hope you die. It’s a horrible thing to say, but I wanted some sort of relief.”
Unknown to her, Pistorius heard her. He was wide awake, aware of everything. But he couldn’t communicate.
“About two years into my vegetative state I began to wake up. A good way to describe it is like an out-of-focus image. At first you have no idea what it is – slowly it comes into focus.”
Pistorius tells NPR: “The rest of the world felt so far away when (my mother) said those words.
“As time passed I gradually lear nt to understand my mother’s desperation. Every time she looked at me, she could see only a cruel parody of the once-healthy child she loved so much.”
He couldn’t move a muscle in his body or speak. “I stared at my arm, willing it to move… Everyone was so used to my not being there that they didn’t notice when I began to be present again. The stark reality hit me that I’m going to spend the rest of my life like that – totally alone… That I’ll be alone for ever. I was pathetic. Powerless.”
These thoughts were so painful. To cope, Pistorius started to detach.
“You don’t really think about anything. You just simply exist. It’s a dark place to find yourself. In a sense, you’re allowing yourself to vanish. Days go by ... Weeks.”
There was a “nothingness” as he was washed and fed, lifted from his wheelchair to bed.
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 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 that limp body, Pistorius was there.
She began 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 al- LISA Ellis, the director of Inclusive Solutions, the local supplier of technology for people with special needs (it supplies the technology Pistorius is now using) says of Pistorius:
“After a long and pain-staking recovery period, Martin can once again communicate and leads a full, normal life. He cannot speak, but using specialist communication software, The Grid 2, which takes his written messages and speaks them aloud for him, he shares his thoughts and feelings and desires. It even makes it possible for him to run a business.
“People can take control of their world again after an illness or accident – and that moment of realisation that they will be able to communicate, able to have some control again – is amazing.”
The Invisibilia podcast can be heard on www.npr.org/rss/podcast.php?id=51 0307
Pistorius’s memoir is ternative communication assessment. It was discovered he could communicate and understand more than was believed.
His mother gave up her job to spend four hours every day with him, as he learnt how to use his computer software to communicate. He got pretty good at it. “I could say, ‘I am cold.’ ‘I am hungry.’ ‘I want toast’,” he says on the podcast.
Gradually, his upper body mobility returned, and he got a job filing papers at a 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 moved after meeting the love of his life, Joanna, a South African social worker, on Skype.
The couple married in 2009 Pistorius prosposed in a a hot air balloon.
Johanna says: “Ja, he couldn’t speak and he was in a wheelchair, but he had this incredible smile. He was so amazing… When he talks about me, he always smiles,” she laughs.