A man who was ‘locked’ inside his body for years while still being able to hear, see and comprehend everything around him has shared details of his remarkable recovery.
Martin Pistorius, now 47, came home from school one day with a sore throat.
Doctors initially thought he had flu and he was given the usual treatment. Shockingly, his condition slowly became worse and he eventually hospitalised aged 12.
“I tested positive for cryptococcal meningitis and tuberculosis of the brain and was treated for both,” he told LADbible. “My body weakened and I lost the ability to speak and control my movements.”
He was in a vegetative state, which he discusses in his 2012 book Ghost Boy.
Pistorius’ parents Joan and Rodney were not given a conclusive reason why his body shut down. They weren’t ready to give up on him and kept him alive in a care centre.
Pistorius describes this period of his life as being like ‘an empty shell, unaware of anything around me’.
“I was able to hear, see and understand everything around me but I had absolutely no power or control over anything.
“For me, that feeling of complete and utter powerlessness is probably the worst feeling I have ever experienced, and I hope I never have to experience again. It is like you don’t exist, every single thing in your life is decided by someone else.
“Everything, from what you wear, to what you eat and drink, even if you eat or drink, to where you will be tomorrow, or next week, and there is nothing you can do about it.”
Nobody realised Pistorius had regained consciousness and was taking in everything around him. He even remembers having no choice but to watch reruns of Barney in the special care centre.
“I cannot even express to you how much I hated Barney,” he declared in an interview with NPR.
Pistorius’ mum Joan says she struggled to come to terms with her son’s condition.
In his memoir, he recalls sitting in his wheelchair one day when his mum said to him: “I hope you die.”
The comment affected him and made him feel ‘very sad and upset’, he ‘understood where that was coming from’.
In order to keep his sanity, he’d use his imagination: “I’d imagine all sorts of things, like being very small and climbing into a spaceship and flying away. Or that my wheelchair would magically transform into a flying vehicle.
“I would sometimes watch things move, whether it be how sunlight moved throughout the day. Or watching insects of some sort scurry about, but, really, I lived in my mind to the point where at times I was oblivious to the world around me.”
In 2001, when Pistorius was 25, a relief carer at the day centre, Virna van der Walt, encouraged his parents to take him to the Centre For Augmentative And Alternative Communication at the University Of Pretoria.
It was there that a researcher held up a sheet of paper with symbols on it, and he was asked to locate a ball with his eyes. After finding the shape, he was asked to find the dog.
Nearly 13 years after he became ill, he was able to reveal that he was conscious and able to communicate.
His parents invested in a computer which was preloaded with communication software, similar to the technology used by the late theoretical physicist Stephen Hawking.
Pistorius would select letters, words or symbols on the device using a band attached to his head, which would act like a mouse.
He started working with van der Walt in 2003 at the care centre. He then met the love of his life, Joanna, who worked as a social worker. They got married in 2009 in Essex.
They welcomed a son, Sebastian Albert Pistorius, in 2018 and Pistorius often shares pictures of his family on Instagram.
Pistorius now works as a computer scientist and web developer.
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