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Topics: World News, Health
Emily Brown
A man who spent more than a decade 'locked in' to his own body has shared the incredible story of everything he went through.
Martin Pistorius, who is now in his late 40s, wasn't even a teenager when he came home from his school in South Africa one day with a sore throat.
Initially convinced he had the flu, doctors gave Martin the usual treatment and sent him on his way. Unfortunately, however, Martin's condition continued to worsen and he was eventually hospitalised aged 12.
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In 2017, Martin reflected back on his experiences with LADbible and explained he'd tested positive for cryptococcal meningitis and tuberculosis of the brain, and was treated for both.
In spite of the treatments, his body weakened and he lost the ability to speak, and to control his movements.
Martin's parents, Joan and Rodney, weren't given a conclusive reason why his body shut down, but they weren't ready to give up on their son.
They moved him alive to a care centre, where Martin was able to 'hear, see and understand everything' around him, but he 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," he said. "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."
He was in a vegetative state, but no one around Martin realised he was conscious and was taking in everything around him - right down to the TV that was playing the kids' show Barney on repeat.
“I cannot even express to you how much I hated Barney,” he declared in an interview with NPR.
Martin's mom Joan admitted she struggled to come to terms with her son’s condition, and in his book Ghost Boy he recalled sitting in his wheelchair one day when his mom said to him: "I hope you die."
The comment affected him and made him feel ‘very sad and upset’, though Martin said he ‘understood where that was coming from’.
Martin remained in the vegetative state for more than a decade, occupying his time by imagining things like 'climbing into a spaceship and flying away'.
However, his life changed in 2001 when a relief carer at the day centre encouraged his parents to take him to the Centre For Augmentative And Alternative Communication at the University Of Pretoria.
There, a researcher held up a sheet of paper with symbols on it, and Martin was asked to locate a ball with his eyes. After finding the shape, he was asked to find the dog.
Nearly 13 years after Martin became ill, he was able to reveal that he was not only conscious, but able to communicate.
After that, Martin's parents invested in a computer which was preloaded with communication software, similar to the technology used by Stephen Hawking, which allowed him to select letters, words or symbols on the device using a band attached to his head - which would act like a mouse.
In 2003, Martin began working at the care centre and he went on to meet the love of his life, Joanna, whom he married in 2009 in Essex.
Twenty years on, Martin is working as a computer scientist and web developer, and is a father to son, Sebastian Albert Pistorius.