For years, Martin Pistorius tried desperately to communicate with his parents, who had no idea he was even conscious. Then he heard his mother utter three heartbreaking words
For 12 long years, Martin Pistorius was ‘locked’ in his own body and unable to communicate with loved ones, who had no idea that he’d even regained consciousness.
At 12 years old, Martin, originally from Johannesburg, South Africa, tested positive for cryptococcal meningitis and tuberculosis of the brain, after his symptoms were initially dismissed as a case of the flu.
Martin’s condition deteriorated to the point where he was unable to speak, make eye contact or control his movements. Eventually, he slipped into a vegetative state, and his parents, Rodney and Joan Pistorius, were given the tragic prognosis that their son would likely never reawaken.
Despite this, Rodney and Joan kept up hope that their boy would one day return to them, dedicating themselves to their care. And when he did finally begin to wake up, at the age of around 14 or 15, they didn’t even realise.
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In a televised interview for The Wright Stuff, Martin recalled the moment when the fog finally started to lift, comparing this to “when you are trying to wake up from a dream, but can’t.”
And speaking with UNILAD in 2023, Martin, now 49, said: “I remember around my 16th birthday, people talking about the stubble on my chin and wondering whether to shave me.
Between the ages of 16 and 19, Martin’s consciousness returned completely, but as he was still paralysed, apart from being able to move his eyes, he wasn’t able to communicate his new, and horrifying, dilemma.
While being fully aware of his surroundings, Martin could hear conversations happening around him and even learned about some of the biggest news stories of the day, including the death of Princess Diana and the fall of the Twin Towers.
He continued: “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 it 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.”
A prisoner in his own body, Martin’s days consisted of being motionless at the special care centre, watching endless reruns of Barney the Dinosaur—a character he came to “hate” with a passion. The shadows that passed around the room allowed him to keep track of the hours, as time marched on and on. All the while, he desperately tried to signal that his brain was still whirring away despite his silence.
Looking back on one agonising attempt to alert his father, in a piece for the Mail Online, Martin shared: “I would try to get him to understand I had returned, willing my arm to work. ‘Dad! I’m here! Can’t you see?’, but he didn’t notice me.
“He continued to undress me, and my gaze slid to my arm. It was not moving: its only outward manifestation was a muscular twitch close to my elbow. The movement was so tiny, I knew my father would never notice it. Rage filled me. I felt sure I’d burst. I gasped for breath. “Are you OK, boy?” Dad asked as he heard my ragged breathing and looked up.
“I could only stare, praying my silent desperation would somehow communicate itself. Let’s get you into bed, shall we?”
In a joint interview with NPR, Martin’s mother, Joan, remembered the three heartbreaking words she’d uttered in his presence, not realising he could hear every syllable – “I hope you die”. Joan explained: “‘I hope you die.’ I know that’s a horrible thing to say. I just wanted some sort of relief.”
Although this outburst was difficult to hear, Martin ultimately sympathised with his mother’s wish. He said: “The rest of the world felt so far away when she said those words. [..] As time passed, I gradually learned 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 had loved so much.”
Fortunately, therapist Virna van der Walt began to pick up on tiny eye movements that suggested Martin was still very much there, and encouraged his parents to send him for cognitive testing. From thereon, things began to improve for Martin, and, after regaining some movement in his head and arms, he was eventually able to communicate through a computer loaded with communication software.
Showing incredible strength, Martin went on to study for a degree in computer science and now works as a web developer and computer scientist. He also fell in love and married social worker Joanna, with whom he shares a son. He also wrote a book abount his experience in 2012, titled Ghost Boy.
Do you have a story to share? Email me at julia.banim@reachplc.com
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