When I signed up to review Ghost Boy by Martin Pistorius, I expected to read a book about the medical condition that caused a boy to be “trapped inside his own body.” In actuality, the book talks little about the condition that resulted in Martin being in a vegetative state. Instead, it chronicled his journey back into the land of the living.
I found the book difficult to read, since it describes the world that I’m heading for…being non-verbal. I have a progressive neurological disease that will leave me unable to speak. Martin’s stories served to confirm my worst fears about what life will be like. People assumed he was an imbecile. He was positioned in uncomfortable ways but couldn’t tell anyone. He was fed food that he didn’t like, that wasn’t an appropriate temperature, at a rate that was uncomfortable for him. He was talked ABOUT as if he wasn’t there. He was abused and neglected and could not cry out for help. These things are utterly and completely terrifying for me!
The second half of the book made me feel much more hopeful. Martin finds a woman to love him, who understands him, who treats him as the intelligent, talented person that he is…even in spite of his inability to speak. Miraculous.
I’m grateful to live in a time when there are AAC (communication devices) that allow people with speech disabilities to communicate! Martin Pistorius is the poster child for a life changed by technology. “Until there’s a cure…technology is the cure!” Martin’s story is truly inspiring and I applaud him for his bravery and strength!
*I received a complementary copy of this book from the publisher in exchange for my honest review