Ghost Boy by Martin Pistorius

Book description (from the back cover):

In January of 1988, Martin Pistorius came home from school complaining of a sore throat.  He never went back.  Within a year, Martin had degenerated in to a mute quadriplegic.  By his fourteenth birthday he was a hollow shell, unseeing and unknowing; he spent his days at a care center, sitting blankly in front of the television while his family waited for him to die.

And then his mind came up for air.

For an unimaginable ten years, Martin would be completely conscious while trapped inside his unresponsive body, secretly aware of everything happening around him and utterly powerless to communicate it.

Ghost Boy is Martin’s story, as written – shockingly and triumphantly – by Martin himself.  With unflinching candor, Martin describes the chilling details of life as a secretly lucid vegetable – from the perversion of some who believed him to be brain dead, to the grace of those who sought recognition in his eyes.

For an age when prolonged illness and misdiagnoses are too common, Ghost Boy is the hopeful story of a discarded life awakening from passivity to action, despair to hope, captivity to freedom.

My review:

This is my must-read book of the year!  It is an unbelievable story with a rare perspective of what it is like to be considered a vegetable, yet be fully aware.  This is a compelling story on so many different levels.  Certainly anyone who has worked with or is currently working with people with severe or profound disabilities should read this book.  Anyone who has a family member with disabilities should also read this book.  Martin’s story is certainly unique!

There are so many things to like about this book.  Who doesn’t like a feel-good story about someone who overcomes amazing obstacles?  It is a success story, not just about Pistorius, but also about his family.  What dedication it took for them, especially his father, to care for him for over a decade.  Pistorius shares the good and the bad in an honest way that doesn’t sugarcoat the realities of how difficult it is to provide care for a person who is unable to care for themselves.

Parts of this book were very difficult to read.  The abuse that Pistorius experienced at the hands of caregivers is reprehensible and sickening.  He doesn’t say in the book whether the perpetrators were prosecuted or not, but I personally hope they were.  It is a nightmare scenario for anyone who has someone they love in a vulnerable position in a long term care facility, especially if the person in non-verbal.  I’m not sure I needed as much specific information about the abuse that Pistorius described, however, I can understand why he might have felt the need to describe it the way  it was.

The only criticism I have about the book is that I would have enjoyed reading more about the misdiagnosis aspect of it.  It wasn’t clear to me what the specific diagnosis was (other than a degenerative disease) and I never understood what the doctors determined was the actual diagnosis.

I think this book could revolutionize the care industry, especially for people that display the symptoms Pistorius had.  It should be required reading for new hires in every long-term care facility in the world.  I’m not saying that I believe every person who exhibits the same symptoms Pistorius had is as aware as he was, however, how can anyone be sure.  I’m also not saying that their care should be different depending upon whether they are aware of not; the care people who are disabled should receive should be of the highest standard, regardless of their functioning level.  I just think that this book would be a great supplement to the training of people providing hands on care.

I received a complimentary copy of this book from BookLook Bloggers in exchange for my honest review.  All opinions are my own.

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