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Topics: Health, World News
Lucy Devine
A man who spent over 10 years 'locked' in his own body has finally been able to tell his remarkable story.
Martin Pistorius, from South Africa, is now in his late 40s, but when he was aged just 12, he came down with an illness that doctor's initially assumed to be flu.
Martin was given the usual treatment, but his condition worsened and he ended up in hospital.
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It turns out that Martin had both cryptococcal meningitis and tuberculosis of the brain, and was treated for both.
But 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.
Martin was moved to a care centre, and could 'hear, see and understand everything' around him, but he was unable to communicate.
"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 told LADbible.
"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."
Those around Martin had no idea he was aware of what was happening - including the fact that TV show Barney was playing 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, but in 2001, everything changed.
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.
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.
Twenty years on, Martin is working as a computer scientist and web developer, and is a father to son, Sebastian Albert Pistorius.