Man who suffered from locked-in syndrome for 12 years described reaction to hearing mum saying she ‘hoped he died’
A man that suffered from locked-in syndrome for 12 years has opened up on his reaction to hearing his mum wishing that he was dead.
South African Martin Pistorius was just like any other boy growing up in the '80s, and dreamed of a career in electronics.
Born in 1975, he went through his early years with outstanding results in school until one day in 1988, all of that came crashing down when he told his mum that he felt like he had a sore throat and headache.
Originally thought to be a cold, he stayed home from school and with each day he got worse, losing appetite and constantly sleeping, with his brain regressing in age.
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Following visits to hospitals, doctors were left confused as to what condition Martin had exactly, and treated him for cryptococcal meningitis and tuberculosis of the brain.
Ultimately giving up on his long-term health, his parents were told to take care of him until he died, with his last words to his parents being: “When home?”
However, he didn't die, and could feel himself going back to normal after just four years, as he explained to NBC News in 2015, with the help of a computer to speak: “For so many years, I was like a ghost. I could hear and see everything, but it was like I wasn’t there. I was invisible.”
Constantly in the care of others, he was horrified that he may die without anyone realising he was conscious, adding that the 'utter powerlessness' constantly got to him as he lived in his imagination to cope.
But amidst all of this, Martin's health had a significant strain on his family, and particularly his parents, as arguments would ensue in the Pistorius household due to the stress of taking care of him 24/7.
It came to a tension-fuelled breaking point, where his mother turned to him one night, unaware that he could hear her, and said: "I hope you die."
Unable to respond at the time, Martin opened up about how he felt about hearing those words come out of his mum's mouth: “It broke my heart, in a way, but at the same time, particularly as I worked through all the emotions. I felt only love and compassion for my mother.”
He claims that he was abused at the facilities he was staying in, claiming that he was hit, pinched and dropped on purpose.
But he has credited his recovered to one therapist at the centre, Virna Van Der Walt, who saw that he was conscious because of a 'sparkle in his eye'.
Through eye movements and hand squeezing, the two communicated, and the therapist pushed his family to get Martin's brain tested once again.
The test revealed that he was back in control of his body as his brain also healed in parts, while doctors still couldn't diagnose him.
Speaking about how crucial Virna was, Martin claimed: “She was the catalyst who changed everything,
“Had it not been for her, I would probably either be dead or forgotten in a care home somewhere.”
Now, decades on from contracting 'locked-in syndrome', Martin lives his life in a wheelchair, and communicated with people with a computer that speaks for him.
Unfortunately, he lost all of his childhood memories, but after re-learning how to read, make decisions and socialise, he then learnt to drive and eventually went to college.
Martin is now a computer scientist and web developer and has a family, having met his wife Joanna in 2009, with whom he has two children, and they all reside in the UK.
The father-of-two also went into depth about his traumatic experiences with locked-in syndrome in his 2011 book Ghost Boy.
Joshua Nair