By Dave Andrusko
A little over four years ago we reposted a story—remarkable in every sense of the word—of Martin Pistorius.
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.
Then, more recently, as the opening question in what NPR said was a new program on human behavior called “Invisibila” [“how invisible things shape our behavior and our lives”], Lulu Miller asked.
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 Martin 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 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 then-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.
“I was aware of everything, just like any normal person,” Martin says, according to Miller. But he could not move his body, even though he could see and understand everything.
“Everyone was so used to me not being there that they didn’t notice when I began to be present again,” he told Miller. “The stark reality hit me that I was going to spend the rest of my life like that — totally alone.”
In a very compressed space, Miller explores the succession of amazing strategies that Martin employed, once he concluded he was “doomed.”
With no exit, Martin “figured his only option was to leave his thoughts behind”—what he calls “disengaging his thoughts,” which he proved to be very good at.
“You don’t really think about anything,” Martin told Miller. “You simply exist. It’s a very dark place to find yourself because, in a sense, you are allowing yourself to vanish.”
But—irony of ironies—some things did occasionally elicited un-ignorable thoughts–like “Barney.”
Dismissed as a “vegetable,” Martin was plopped down in front of a television where cartoons played day after day after day at the special care center. “I cannot even express to you how much I hated Barney,” Martin says.
Once he had decided he’d “had enough,” Martin wanted to gain some shred of control over his existence. For example, by watching the sun move across his room, he was able to learn how to tell time.
Then, according to Miller
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.
According to Dr. Saunders,” ‘Locked-in syndrome’ is a rare neurological disorder characterized by complete paralysis of voluntary muscles in all parts of the body except for those that control eye movement. It may result from traumatic brain injury, diseases of the circulatory system, diseases that destroy the myelin sheath surrounding nerve cells, or medication overdose.
Individuals with locked-in syndrome are conscious and can think and reason, but are unable to speak or move.”
There are other very famous stories of patients with locked-in syndrome. For example, we’ve written of Jean-Dominique Bauby, the French editor of Elle magazine. As Saunders explained, “Aided by a therapist he learnt to communicate by blinking his left eye, the only part of his body that wasn’t paralyzed. He described his experiences in the book he ‘dictated’ letter by letter, ‘The Diving Bell and the Butterfly’, which was later made into a 2007 film of the same name. He died three days after the book was published in 1997.
What Miller does not address but Dr. Saunders has in many columns is that this condition is a favorite tool of pro-euthanasists. (Great Britain’s Tony Nicklinson, who died in 2012, is the most famous case.)
Yet, as Saunders reminds us, “Most people with locked-in syndrome [LIS] are happy, according to the biggest survey of people with the condition.”
Michael Cook added, “[T]he largest-ever survey of chronic LIS patients has found that only 28% were unhappy,” Cook writes. “Very few of them were interested in euthanasia – only 7% — or had suicidal thoughts.”
You can read the full story at npr.org. There is also a link there to the podcast.