Last year I came across a book called Ghost Boy by Martin Pistorious. This is an autobiography, and tells the story of a boy whose brain, for some unknown reason, began to unravel. Over a period of 2 years, Martin went from being an active, normal 10 year old to a point where he became totally unresponsive to outside stimuli. The word “vegetative” describes how he appeared to others.
After another 2 years in this vegetative state, Martin began to “come back” as he puts it. His brain began to reform the pathways needed for consciousness to occur, until he was fully awake and alert. The problem was that no one knew it. Everyone around him thought he continued to be in this persistent vegetative state. The title of the book comes from this experience, of being like a ghost boy to those around him.
He is able to relate to others now. He is married, his body is almost back to normal in terms of his ability to walk, and he works full time. The story of how this came to be is told in the last three fourths of the book, and he has two heroes he points to.
One is his father, who passed up promotions so he could come home every night and pick Martin up from the day school he attended. He writes with poetic passion about his father and their relationship, and the strength he received by his constant presence. The second is a direct care staff person who began to believe that Martin was “in there” and trying to communicate.
The “professionals” around her told her she must be wrong, they would not listen to her requests for an evaluation of Marin’s communication skills. She never gave up. She worked and worked and after almost 2 years was able to convince people to have Martin assessed at a communication clinic for people affected by brain injury. And yes, she was right. Martin was in there, and now he is out, able to share his pain and his joy in a unique book.
There is one chapter I found particularly engaging, titled “The Furies.” He writes “If there were Three Furies in my story, their names were Frustration, Fear, and Loneliness. These were the phantoms that trod their blackened path through my mind for seven long years – nine if my awareness is dated from the time I started to dip in and out of life. But while the Furies almost beat me many times, thankfully I learned how to defeat them every now and again too.”
He writes of Frustration first: “Frustration rose up inside me so often because I was constantly reminded that I couldn’t determine my own fate in even the smallest of ways. If people wanted me to sit in the same position for hour after hour, there was nothing I could do about it, although pain shot through me. Words can’t express how much I sometimes hated the cold custard and prunes that I ate at lunchtime for years. . . Without a voice, I couldn’t control even the simplest things, and that’s why Frustration so regularly started her violent lament in me.”
Fear is the next of the Furies Martin writes about. “the fear of being powerless over what happened to me from day to day or in the future, the fear that I was growing up and would be put into permanent residential care because my parents couldn’t cope with me as they got older.” He writes about the fear he felt whenever he went to one particular care home when his father had a business trip or the family went on holiday with his siblings.
“Last came Loneliness, and she was perhaps the most terrifying of all the Furies because I always knew she could slowly suck the life out of me even as I sat in a room surrounded by people. As they hurried to and fro, chatted, argued, made up and fell out again, I could feel the paralyzing bony fingers of Loneliness clamp tightly around my heart.”
Hope was the antidote to the effect of the Furies. He ends the chapter by writing “Each time he did [repositioned Martin in his wheelchair], Loneliness went snarling back to her solitary cave because when my father showed that he was thinking of me, we defeated Loneliness together.”
In his book, Martin Pistorious does not use these words, but as I read his book it struck me that the Three Furies are defeated by three acts we have always talked about in Mandt. When Martin’s father repositioned him in his wheelchair, it was because he Listened, he Engaged, and he Protected.
Listen, Engage, Protect. That is what we teach in The Mandt System®. When we engage with others, when we simply spend time talking with and not to people, it drives away the Furies. When we listen, really listen, to people to answer these 2 questions: what do you want? where does it hurt? – we drive away the Furies. When we protect, either non-physically or physically, we drive away the Furies.
Martin’s story is not just unique to him. In telling his story, he has given voice to the millions of people whose voices are not heard because of our inability to listen, really listen, to what people are saying. Listen, Engage, Protect. That’s what we do whenever we implement The Mandt System®.
More on the book:
Ghost Boy, by Martin Pistorious. Published 2013, Thomas Nelson, Inc.
Bob Bowen – Senior Vice President Program Development