Martin Pistorius fell into a mysterious coma when he was a vibrant 12-year-old boy in the 1980s.
He found himself locked inside his own body – unable to speak, make eye contact or even move his own limbs.
Martin’s doctors told his parents, Rodney and Joan Pistorius, that the boy had cryptococci meningitis. They said Martin should be taken home to die in peace.
But Martin would live 12 years in that vegetative state.
Joan said, “Martin just kept going, just kept going.”
According to NPR, Martin’s father would wake up every day at 5 a.m., dress the boy, put him in the car and drive him to a special care center.
“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 recalled.
And during those 12 years, according to the Pistorius family, there was never any indication that Martin’s condition was improving.
One day, Joan, in a state of hopelessness, told her son, “I hope you die.”
She never imagined that Martin would have understood those dreadful words.
Have you worked with a patient in a similar situation and thought perhaps he/she could hear and understand you? If so, what made you aware of it?
But by the time he was 14 or 15 years old, Martin began to awaken.
“Yes, I was there, not from the very beginning, but about two years into my vegetative state, I began to wake up,” Martin recalls. “I was aware of everything, just like any normal person. Everyone was so used to me not being there that they didn’t notice when I began to be present again. The stark reality hit me that I was going to spend the rest of my life like that – totally alone.”
Martin had even heard his mother’s cruel words.
“You don’t really think about anything,” he said. “You simply exist. It’s a very dark place to find yourself because, in a sense, you are allowing yourself to vanish.”
Martin added, “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.”
At the care center every day, Martin’s caregivers played “Barney” reruns. They too believed he was a vegetable.
He said, “I cannot even express to you how much I hated Barney.”
Now Martin, 39, is in full control of his body. He’s married and lives a normal life in Harlow, England.
In his book “Ghost Boy,” he writes, “My mind was trapped inside a useless body, my arms and legs weren’t mine to control and my voice was mute. I couldn’t make a sign or sounds to let anyone know I’d become aware again. I was invisible – the ghost boy.”