Martin Pistorius was just 12-years-old when a mysterious illness rendered him ‘locked in’ his own body, unable to move or communicate.
It began with him complaining of a sore throat one day, when he came home from school in South Africa in the late 1980s.
Doctors initially thought he had the flu, but his illness worsened and Martin was hospitalized.
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Martin’s mother, Joan, told NBC: “He just never, ever got better.”
From there, it quickly escalated into something far more serious. Martin 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 all voluntary movement and was unable to speak.
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Doctors were baffled, unable to provide answers, and eventually, he was diagnosed with a degenerative neurological condition. He was expected to live out the rest of his days in a vegetative state.
His family, believing he was unaware of their presence and actions, carried on with their lives, providing care but also preparing for a life without their son as they knew him.
However, unbeknownst to everyone around him, Martin was aware of his surroundings but trapped inside his body, unable to signal to the outside world that he could hear, see, and comprehend everything happening around him.
The horror of being aware and yet utterly powerless to communicate his awareness was a torment he had to endure for years.
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Martin, who is now in his late 40s, told LADbible in 2017: "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."
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Martin's mind was a prisoner in his own body. He could hear the caregivers' conversations, and, most heartbreakingly, his mother's despair.
He was present when she, in a moment of profound sadness, wished for his suffering to end.
These words deepened his resolve to somehow make it known that he was still there.
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One day in 2001, a caregiver noticed something unusual - a flicker of response in Martin's eyes. Encouraged by this, she began to engage with him differently, paying close attention to his reactions.
Martin was eventually able to reveal that he was not only conscious, but able to communicate.
Martin's parents immediately invested in a computer preloaded with communication software. It was a painstakingly slow process, but Martin's life gradually transformed as his ability to communicate improved.
Martin wrote a memoir, Ghost Boy, detailing his extraordinary journey from the depths of isolation to the joy of being able to interact with the world again.
He now works as a computer scientist, and is married to the love of his life with a young son.
Topics: News, World News, Health