Martin Pistorius was a kid so into electronics, his mom had no doubts about his ability to fix a broken plug for her when he wasn’t yet 11 (which he did).
But shortly after turning 12 in January 1988, things changed. He started sleeping more, barely eating, and ultimately effectively disappeared, unable to move or talk. The Daily Mail reports he was treated for cryptococcal meningitis and tuberculosis, but a final diagnosis was never determined.
As NPR’s new program Invisibilia reports, his parents were told “he’s a vegetable.” And for much of the decade-plus he spent in that state, Pistorius was treated like one. He passed his days at a care center, turned toward a television that played hours of Barney and Friends reruns.
“I cannot even express to you how much I hated Barney,” explains Pistorius — yes, Pistorius, who was fully aware for most of those years, even the moment when his despairing mother said to him “I hope you die.” He tells his story to NPR via a keyboard that allows him to select words on a computer that communicates them.
He believes he “woke up” sometime between ages 14 and 16, likening the experience to seeing a blurry image that slowly comes into focus. After realizing he couldn’t communicate with the world, he was first dogged by a stream of awful thoughts (“alone forever” … “you will never get out”), then trained himself to be detached from them, taking him to a “dark place [where] you are allowing yourself to vanish.”
But then, with those hours of Barney began driving him mad, he began studying the sun and its shadows in the room in an effort to determine what time of day it was. As NPR host Lulu Miller puts it, “It was his first semblance of control. … Life began to have purpose.”
As time passed, his faculties slightly returned: He could sit upright, for instance. At the urging of a worker at the center, he was assessed by a communication center at the University of Pretoria in July 2001. His family became aware he was aware; his mother quit her job and spent hours a day working with him. The Washington Post reports he’s now 39, married, and living in Harlow, England. He published a memoir in 2011.