Martin Pistorius sometime between 1990 and 1994, when he was unable to communicate.
Courtesy of Martin Pistorius
I found this story hard to read, because this man's experience mirrored my father's own physical experience as he died from ALS, but "Ghost Boy: The Miraculous Escape of a Misdiagnosed Boy Trapped Inside His Own Body" has a much happier ending.
The book is the autobiography of Martin Pistorius, a South African man who lived for more than ten years trapped inside his own body, being forced to watch "Barney" on TV inside a care facility. Then, one day, his body began to "wake up," and his life changed.
Martin's story was featured on a recent episode of the new NPR show "Invisibilia," and you should definitely listen to the whole episode.
Martin at the day care center. Courtesy of Martin Pistorius.
Martin grew up a nerd, fascinated with electronics and building things from DIY parts. Then, he came down with a mysterious illness that doctors couldn't diagnose–and that illness progressed further and further until Martin was totally paralyzed and unable to communicate in even the most basic ways. Everyone, including Martin's family, thought he was a vegetable. And he lived like a vegetable. For 12 years.
Then one day, he decided he'd had enough. He wanted to gain some small measure of control over his day. So he figured out how to tell time by how the sun moved across a room. That was the start.
Eventually Martin found a way to reframe even the ugliest thoughts that haunted him. Like when his mother said, "I hope you die."
"The rest of the world felt so far away when she said those words," Martin says.
But he began to wrestle with it. Why would a mother say that?
"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. "
Over time, Martin began re-engaging with his thoughts. And slowly, as his mind felt better, something else happened — his body began to get better, too. It involved inexplicable neurological developments and a painstaking battle to prove that he existed.
"Trapped In His Body For 12 Years, A Man Breaks Free" [NPR Invisibilia]
"Ghost Boy: The Miraculous Escape of a Misdiagnosed Boy Trapped Inside His Own Body" [Amazon]
Martin and his wife, Joanna. Courtesy Martin Pistorius.
