“The rest of the world felt so far away when she said those words.”
That’s how Martin Pistorius, author of Ghost Boy, recounted the moment his mother told him, directly to his face, that she “hopes he dies”—completely unaware that he could comprehend every word.
Pistorius had been an ordinary child with a fascination for gadgets until, at the age of 12, his body began to shut down without warning.
Despite visits to doctors, no diagnosis could explain his condition. Initially sent home from school with what seemed like flu symptoms, he never returned. Over time, he stopped eating, his muscles grew weak, and eventually, he became immobile, even losing the ability to think.
In his memoir, Pistorius reveals how medical professionals described him as “a vegetable,” claimed he had no remaining intelligence, and advised his parents to wait for his inevitable death.
However, at the age of 16, he regained consciousness—only to spend the next eight years trapped in a body that couldn’t move.
The remarkable journey of a South African family is now the focus of a new NPR documentary podcast featured in the channel’s Invisibilia program.
During an interview with NPR, Pistorius shared that his determination to fight and be understood stemmed from an unusual source—being forced to endure repeated episodes of the children’s TV show Barney.
“I cannot even express to you how much I hated Barney,” he explained.
Frustrated by the constant exposure to the singing dinosaur, Pistorius taught himself to tell time without a clock, just to count down until the episodes ended.
“I would watch how the sun moved across the room or how a shadow moved throughout the day,” he recalled.
This timekeeping method became a way to cope until he was taken out of his wheelchair, a moment when, as he described, “the aches and pains in my body could subside.”
Joan and Rodney Pistorius, Martin’s parents, were also guests on the NPR show. Ms. Pistorius described the ordeal of caring for her son in a vegetative state as “so horrific” and admitted she once said to him: “I hope you die. I know that’s a horrible thing to say. I just wanted some sort of relief.”
Reflecting on it, she told NPR, “Oh, that’s horrific when I think about it now.”
Martin Pistorius shared his feelings about the moment, saying: “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.”
Although doctors ultimately diagnosed Pistorius with cryptococcal meningitis, the reason he “woke up” from his vegetative state when he did remains a mystery.
Now reliant on a voice synthesizer and using a wheelchair, Pistorius resides in England alongside his wife, Joanna. In 2011, following the release of his book, he contributed an article to the Daily Mail, where he recounted how his love for her became his source of salvation.
“I’d experienced [love] as a boy and man, as a son, brother, grandson and friend, I’d seen it between others and I know it could sustain us through the darkest of times,” he wrote. “Now it was lifting me closer to the sun than I ever thought I would fly.”