Dr. Peter Saunders wrote
The Sunday Times today tells the story of Martin Pistorius, a South African man who ended up paralyzed and comatose following a throat infection at the age of 12. His awareness began to improve four years later and by the age of 19 had fully returned.
However it was a further five years before a therapist noticed that he was trying to communicate. The penny eventually dropped that he had been aware of everything going on around him for almost ten years whilst everybody had assumed he was unconscious.
As the opening question in what NPR says is a new program on human behavior called “Invisibila” [“how invisible things shape our behavior and our lives”], Lulu Miller asks
What would you do if you were locked in your body, your brain intact but with no way to communicate? How do you survive emotionally when you are invisible to everyone you know and love?
Miller writes in more detail, but the picture of Martin’s early years is grimly the same. In the late 1980s, at age 12 he came down with a mysterious disease which got progressively worse (the best guess doctors could make was cryptococcal meningitis). Interestingly, Miller never uses what came to be the final diagnosis: locked-in syndrome
Eventually he lost even his ability to make eye contact and finally his capacity to speak. His parents were told to take him home to prepare for his death, but Martin did not die.
His parents’ steadfast commitment to his care is remarkable. For example, his dad, Rodney, got up at the crack of dawn, Miller writes, and would
get him dressed, load him in the car, take him to the special care center where he’d leave him.
“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,” Rodney says.
That was their lives, for 12 years
Still Miller does not paint Martin’s parents as some sort of plaster saints. Joan Miller, not thinking her son was “there” to could hear her,
vividly remembers looking at Martin one day and saying: “‘I hope you die.’ I know that’s a horrible thing to say,” she says now. “I just wanted some sort of relief.”
What she couldn’t know of her boy who “just kept going, just kept going,” was that the now-39-year-old Martin heard her perfectly, not from the beginning of his “vegetative” state, but from about two years later when he was around 14.
Go here to read the rest.