“I was aware of everything, just like any normal person” says Martin Pistorius.
As a 12-year-old boy, Pistorius was struck by a strange illness doctors suspected to be cryptococcal meningitis. His condition gradually deteriorated until he lost all ability to move and speak, eventually slipping into a coma in a vegetative state.
Although the young Pistorius was aware of everything, his parents, Rodney and Joan, were told that he was as good as dead. The hospital told them to take him home and care for him until he died.
“I have a younger brother and a sister, and they and my parents would go on holidays without me, which was extremely difficult. The worst part was that I had a perpetual fear they’d have a car accident and die, and would never come to fetch me. There were many times when I cried inside. I reached a point where I essentially gave up.”
But rather than pass away, as the doctors expected, “Martin just kept going” according to his mother.
Speaking to NPR he describes a bleak 12 year existence, trapped inside his own body but aware of everything that was happening, and everything that was being said.
His father would get up at 5 o’clock in the morning, dress him and take him to the special care center where he’d leave him all day.
“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.”
Joan recalled looking at Martin one day, thinking the unthinkable and then saying it.
“I hope you die.”
She knew it was a horrible thing to say but she just wanted some relief for Martin and herself. But she never imagined her son would be able to hear it. But from the age of 14 or 15, Martin was starting to become aware of everything around him.
“Yes, I was there, not from the very beginning, but about two years into my vegetative state, I began to wake up. I was aware of everything, just like any normal person.”
Although he had regained awareness and could see and understand everything, he was unable to speak or move his body. He was incredibly frustrated and trapped inside the dark thoughts of his mind.
“Everyone was so used to me not being there that they didn’t notice when I began to be present again,” he says. “The stark reality hit me that I was going to spend the rest of my life like that — totally alone.”
“No one will ever show me tenderness. No one will ever love me. I’m doomed.”
Dejected, Martin decided to try to ignore and disengage from his thoughts and allow himself to literally vanish.
“You don’t really think about anything. You simply exist. It’s a very dark place to find yourself because, in a sense, you are allowing yourself to vanish.”
Long written off as a lost cause, he would be propped in front of the TV in the special care center all day long watching the children’s cartoon, Barney. Hour after hour. Day after day.
“I cannot even express to you how much I hated Barney.”
But it was when he heard his mother say that she wanted him to die that Martin began to try and make sense of his thoughts.
“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.”
Fully aware of everything, Pistorius was now determined to regain some control of his life. He started by telling the time by noting the sunrise and sunset each day.
Then incredibly, at the age of 25, his body began to recover. Although those close to him failed to see the signs at first, a therapist finally noticed that Pistorius was making small gestures to indicate that he could communicate. He was regaining the use of his limbs and could now make facial expressions again.
Now age 39, married and living in Harlow, England, Pistorius has written a book called Ghost Boy to share “the miraculous story of a misdiagnosed boy trapped inside his own body.”
Although fully aware of everything, Martin cannot yet speak on his own and uses a computer to express his thoughts and feelings. But for a young man who was resigned to watching life move on around him, he has come an awful long way.
[Image: Daily Mail]