"I was aware of everything, just like any normal person," Martin Pistorius told NPR
“I hope you die.”
Those are the words Joan Pistorius recalled saying to her son Martin, who she believed to be a complete vegetable, the victim of a mysterious illness that struck just before his teens. He was as good as dead, doctors told her. He just wouldn’t die.
But Martin heard her. Martin heard everything because he wasn’t unconscious as medical professionals believed him to be, but very much awake, trapped in a living nightmare that went on and on for over a decade.
Martin is subject of the first episode of NPR’s new series Invisibilia, which focuses on the invisible forces that drive human behavior.
In the late ’80s, Martin was a normal boy growing up in South Africa. But at 12, he started losing the ability to move. Eventually he became entirely paralyzed, unable to even speak. He slipped into a deep coma.
Doctors didn’t know what was wrong. They suspected cryptococcal meningitis, but couldn’t tell for sure. One thing that was certain? The Martin they knew was gone and his body would soon follow.
The hospital told Joan to take her son home, make him comfortable and wait for him to die.
He didn’t. “Martin just kept going, just kept going,” Joan said.
For years, Joan and her husband Rodney took care of their boy. Rodney would get up at 5 a.m. to drive him to day care. “Eight hours later, I’d pick him up, bathe him, feed him, put him in bed, set my alarm for two hours so that I’d wake up to turn him so that he didn’t get bedsores,” he said.
It was their own living hell. What they didn’t know was Martin was suffering right alongside them.
“About two years into my vegetative state, I began to wake up,” Martin, now 39, told NPR. “I was aware of everything, just like any normal person.”
Everything including his mother’s fateful words. But he couldn’t respond. He was trapped in a broken body.
“I know [it was] a horrible thing to say,” Joan told the radio station. “I just wanted some sort of relief.”
With his parents unaware that he had regained consciousness, Martin spent hours doing whatever he was made to do – like watching Barney reruns day in and day out at the day care center.
“I cannot even express to you how much I hated Barney,” he said.
His thoughts turned dark. “No one will ever show me tenderness,” he recalled thinking. “No one will ever love me.”
But ever so slowly, Martin began to regain the use of his body as well. At first, his family didn’t even realize.
“The movement was so tiny I knew my father would never notice it,” he wrote in an essay for the Daily Mail in July 2011, remembering a time when his father was tucking him into bed.
It was a relief care worker at the day care center who finally saved Martin from himself. She saw he was not only able to move, but to communicate. “It punctured the shroud of invisibility around me,” Martin wrote.
By 26, Martin was using a computer to speak. He went on to go to college, get a job, write a book and get married.
“I never had someone take pleasure in me before,” he wrote. “It was the simplest but most perfect of feelings.”
Nowadays, Martin lives in the United Kingdom with his wife Joanna. As for the illness that’s caused him so much pain? It’s known as “total locked-in syndrome” and has no known cure.
But Martin gives others with this rare condition hope. “I am happy with who I am,” he told British TV show The Wright Stuff in 2011. “Life has its challenges, but then again, whose doesn’t.”