'Ghost Boy' recounts abuse during silent years trapped in his own body
Published Tuesday, February 3, 2015 9:22AM EST
Last Updated Tuesday, February 3, 2015 11:28AM EST
When he was 12 years old, Martin Pistorius came home from school with a sore throat. It was the beginning of what would become a devastating and mysterious illness that would rob him of the ability to speak, leaving him fully awake, but trapped inside a body that wouldn't move.
Now, at the age of 39, Pistorius has emerged from his coma-like state to write a book about what it was like to live for so long like a "ghost child" – alive but seemingly invisible to everyone.
The book is called "Ghost Boy," and it tells the story of how Pistorius maintained his sanity when no one could hear him and how he has found love and hope for the future.
Though still partially disabled and unable to speak, Pistorius had mostly recovered from an illness that doctors were helpless to understand. Their best guess is that Pistorius contracted cryptococcal meningitis which slowly damaged parts of his brain.
But the time Pistorius was 14, the illness left him so disabled, he was moved to a care centre where doctors told his family he was “a vegetable” and had lost all ability to hear them. They were told to keep him comfortable until he died.
Around the age of 16, Pistorius' mind awoke from his coma-like state – but his body did not. Pistorius spent the next eight years trapped in his body, able to see, hear and understand everything around him, but unable to let anyone know.
He told CTV's Canada AM Monday that the hardest part was realizing there was nothing he could do and he was probably going to spend the rest of his life that way.
"I went through a lot of emotions: fear, despair, frustration. But by far was the loneliness and powerlessness – that feeling of utter powerlessness where you have absolutely no say or control over anything in your life... for me, that was the worst," he said.
In the care home, Pistorius was abused both physically and emotionally, and labelled an obstacle or called "a donkey." He said he is still trying to recover from that.
"Being abused does something to you, it changes something inside of you," he said. "To this day, even though things are a lot better, I will still have nightmares and flashbacks."
Though most gave up on him, there was one care home worker named Verna who was different. It was she who spent time speaking with him and it was she who noticed that Pistorius was trying to communicate. She urged his family to seek out specialists who could help him learn to use devices to speak.
"She was the catalyst who changed everything. If it had not been for her, I'd probably be dead or forgotten in a care home somewhere," he said.
Once he was able to start communicating, he had renewed hope, which gave him something to focus on and helped him progress. His body grew stronger and he began to regain some movement.
In his book, Pistorius describes how he has learned to put the past behind him and focus on the future. And he has forgiven his mother, who once said to him, in a moment of frustration, that she wished he would simply die so that the pain could be over.
"My mother did apologize to me and I have told her that I know and understand that she was doing the best that she could at the time," Pistorius said, adding that she is "extremely supportive" of the book and told him after she read it that she didn't want the book to end.
Now 39, married, and working as a web designer, Pistorius is earning praise for his autobiography. He's also just learned to drive, something he now loves.
"Life now is fantastic," he said. "…I am truly happy now. Life is worth living again."