A man who suffered from ‘locked-in syndrome’ for 12 years revealed what life was like for him as his loved ones struggled to care for him.
Martin Pistorius was born in 1975 in Johannesburg, South Africa, and was a high-achiever in school with an interest in electronics.
After school one day in 1988 though, Martin told his mum that he was feeling sick with a sore throat and headache – symptoms of a regular cold – so he rested at home. But as each day passed, his condition worsened.
He eventually lost the ability to communicate or use his body, spending most of his time sleeping as his appetite was lost and his mind began to regress to the age of an infant.
Martin couldn’t communicate with anyone for over a decade. (NBC News)
After being admitted to hospitals, doctors had no idea what Martin had, with them instead treating him for cryptococcal meningitis and tuberculosis of the brain. Though these treatments proved unsuccessful.
His parents were told to take him home and watch over him until he died, with no hope of survival.
The last words he ever said to his parents were: “When home?”
But the South African didn’t die, as after just four years, he could feel himself returning to normal, later explaining to NBC News by using a computer to type words in 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.”
He would spend the next decade at home and in day-care centres, and he started to lose hope in anyone ever hearing him again, terrified that he would die alone in a care home with nobody realising that he was conscious.
“What really got to me was the complete and utter powerlessness,” Pistorius explained.
“Every single aspect of your life is controlled and determined by someone else. They decide where you are, what you eat, whether you sit or lie down, in what position you lie in, everything.”
Martin’s brain regressed significantly before he got better. (NBC News)
As he continued to live in his imagination, his family tried to move on from the situation by sending him to care facilities so that they could get a break from the 24/7 care he needed.
This put a strain on the family, causing multiple arguments between his parents, with the breaking point coming one night when his mother turned to him and said: “I hope you die,” unaware that he could hear it.
“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,” Martin said.
At these facilities though, Martin claimed that he was abused by staff, as they hit, pinched and dropped him on purpose while under their care.
However, a therapist at the centre, Virna Van Der Walt, said that she could tell that he could understand him, telling NBC News: “He had a sparkle in his eye, I could see he was understanding me.”
They communicated through eye movements and hand squeezing, proving that Martin was trying to communicate as Virna pushed his family to get his brain tested again.
Martin is now a happy father of two. (NBC News)
“She was the catalyst who changed everything,” Pistorius said of the therapist. “Had it not been for her, I would probably either be dead or forgotten in a care home somewhere.”
During this test, he proved that he was back in control of his body, as Martin’s brain healed parts of itself – all while doctors were still lost on what the initial diagnosis was.
He recalled asking his mother for spaghetti bolognaise for dinner, which she made, marking a huge milestone for him and signalling that he was back.
Martin now lives his life in a wheelchair and communicates with a computer that speaks for him, while his childhood memories have sadly been wiped.
He re-learned how to read, socialise and make decisions for himself, while also learning to drive and going to college. Martin then met wife Joanna in 2009 through his sister, with whom he has two children, with the family living in the UK.
Now a computer scientist and web developer, he also wrote a book called Ghost Boy, opening up about his traumatic experience of growing up with the condition.
