Ghost Boy: The Miraculous Escape of a Misdiagnosed Boy Trapped Inside His Own Body. As an early teen, Martin Pistorius suffered an undiagnosed neurological disease which took from him both his voice and the control of his body. For an entire decade he remained lucid, yet unable to let anyone know.
His first few paragraphs suck you into the story and tug at heart strings because even parents who must endure endless hours of Barney can at least get up and turn off the television. He writes: "I hate Barney - and his theme tune.... The children here lie motionless on the floor or slumped in seats. A strap holds me upright in my wheelchair. My body, like theirs, is a prison that I can't escape: when I try to speak, I'm silent; when I will my arm to move, it stays still. There is just one difference between me and these children: my mind leaps and swoops, turns cartwheels, and somersaults as it tries to break free of its confines, conjuring a lightning flash of glorious color in a world of gray. But no one knows because I can't tell them. They think I'm an empty shell, which is why I've been sitting here listening to Barney or The Lion King day in, day out for the past nine years, and just when I thought it couldn't get any worse, Teletubbies came along."
Martin's life is a testament to the power of endurance, faith, and love. I read as any parent would read, horrified at the thought of losing my child to a lifeless body, unresponsive and passive. Who would dare hope for the miracle of his return? It was miracle enough that he survived (although at times that miracle seemed like a cruel hand). Through it all, his father cared for him and continued to maintain a battle to keep him in their home and a part of their family.
Then, one day, a caregiver became convinced that Martin was in there somewhere and that he could regain his voice. Slowly his world began to open up for him again. He went on to hold jobs and even develop a love relationship. Now married, he writes of his experiences and both the terrors and graces he encountered along the way.
Although it is an incredibly sad story and hard to read at times (the abuse he endured was maddening and the loss his family experienced was heartrending), it does inspire hope in the reader. Every life has value and should be treated with respect. One small gesture could mean the world to someone who seems to be lost in a world of silence. Martin was one of the lucky ones, able to shake off the bondage and taste freedom once again.
For a brief article on his story and a beautiful photo of Martin and his wife today, click here. Or to watch a six minute video interview with Anderson Cooper of CNN, click here.