“I hope you die,” are words whispered into his ear by his own desperate mother. She thinks she is sitting with a shell of her former son, just a body without any feelings, thoughts, or hope. However, what this mother didn’t know was that her son heard every word, his mind was alive and fully functioning, he simply couldn’t get his body to function. The boy was trapped inside his own body, fully awake in thought but unable to communicate.
NPR recently sat down with the man who was once that little boy, listening to his own mother desperately hoping his life would end so that they could all be put out of their misery. Martin Pistorius was a healthy 12-year-old little boy, until he fell ill with a mysterious illness. The illness caused Pistorius to slowly lose his ability to move, make eye contact, and speak. After Martin showed no signs of improvement or communication, the hospital told his parents, Rodney and Joan Pistorius, that he was gone. He was simply a vegetable and should be brought home and made comfortable until he passed.
However, to the surprise of his parents, Martin did not die. His parents would spend 12 years completely caring for Martin. His father told NPR about the daily routine that the family would live with for the next 12 years of their lives.
“His father would get up at 5 o’clock in the morning, 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.”
Joan notes that there were certainly difficult times when caring for Martin. She vividly remembers the “I hope you die,” encounter with her son. The statement was made out of desperation according to Joan. She says it “was a horrible thing to say,” but she “just wanted some relief.” Joan had no idea that her son was well and alive inside his unresponsive body. His mind working through unimaginable loneliness.
Martin says that sometime around the age of 14 or 15, he “woke up.” Though he doesn’t have memories from the first few years of his coma, he recounts that his mind simply woke up two or three years after the initial illness. He says it was as if he was “a normal person,” just unable to communicate with those around him. He could see, hear, and understand everything around him, he just couldn’t get his body to respond.
Martin says his life was like that of a ghost. He was present, but no one could really see him, no one could communicate with him. That left him with nothing but his own thoughts. His mind began tearing him down. He told himself that he would be trapped in his own body forever, no one able to love him. His mind constantly told him, “You are doomed.”
Martin discusses how he initially tried to drown out his own thoughts, make himself quiet again. He would try to remove all thoughts from his head, disengage from the only company he had, himself.
“You simply exist. It’s a very dark place to find yourself because, in a sense, you are allowing yourself to vanish.”
However, there were some things in Martin’s life that he simply could not just sit back and take. Ironically, one of those things was Barney, the children’s television show featuring the talking purple dinosaur. Martin says he “hated ‘Barney.'” Martin was placed in front of a television for hours on end at his special care center. He hated the show so much that he decided to try and focus on something else.
“Then one day, he decided he’d had enough. He wanted to gain some small measure of control over his day. So he figured out how to tell time by how the sun moved across a room. That was the start.”
Martin realized that there were aspects of his life that he could control. He began analyzing and understanding the thoughts and actions of those around him, even those cold “I hope you die” words exiting his mother’s lips. As Martin began to engage with his thoughts, learn, and start living again internally, something else happened. His body began to engage with him once again. Miraculously, Martin’s body awoke from the coma along with Martin’s mind.
Martin wrote a book called Ghost Boy: My Escape from a Life Locked Inside My Own Body, which recounts the trials and tribulations faced by Martin before waking to his new life. Now he married, an author, and living a life that during his darkest hours he never thought could exist.