I had mixed feelings when I found out we would be reading [affiliate links] Ghost Boy: The Miraculous Escape of a Misdiagnosed Boy Trapped Inside His Own Body by Martin Pistorius for our SLP Book Club. Not because I didn't want to read it. I had seen enough in the news media to: 1) know that I wanted to read the book, and 2) be fairly certain (based on my experiences reading Petey and I Raise My Eyes to Say Yes) that I would experience an emotional roller coaster in the process.
I was right. I am so glad to have read this book. And I did experience the gamut of emotions. This is one of those books that I wish I could get everyone (in this case, every adult) to read. But at the very least, anyone who works with or has a loved one who is nonverbal. As I was reading, I started making notes of quotes that I wanted to use for this blog post. And then I quickly realized that I would be typing up half of the book! Seriously. There were that many lines that stopped me in my tracks.
They'd been told long ago that I was severely brain damaged, so ... that's what they saw. And so I was cared for ... but never really noticed. (pg 15)
In Ghost Boy, Martin Pistorius tells his life story, as he remembers it, covering his teen and early adult years. He shares how he coped with being trapped in his body with no voice, no physical control, and no one who believed he had any cognitive ability. Martin's story is the ultimate example of why we need to presume competence. While there are many tragic and heart wrenching parts, overall this book is an inspiring story. It was a great reminder to me of how one person (one!) can make a world of difference in another person's life. A reminder that it is never too late. A reminder that we all change over time. A reminder of just how hard it is to use an AAC system to communicate! A reminder to look deep, give the benefit of the doubt, and see possibilities.
I'd been put in a box long before, after all. Each of us has. Are you the "difficult" child or the "histrionic" lover, the "argumentative" sibling or the "long-suffering" spouse? Boxes make us easier to understand, but they also imprison us because people don't see past them. (pg 17)
As an AAC professional, I love how we see Martin's system of communication includes many different modes (gestural, low tech, high tech) and his choices to use certain methods in different situations.
For Martin, as for us all, communication was the key to everything. Because of communication, he went from wanting to die, to discovering (and making) a life he wanted to live. Because of communication, he went from a passive observer to an active participant. Because of communication, he became a contributing member of his community. Because of communication, he went from having every detail of his existence dictated for him, to making decisions for himself. Because of communication, he found love.
UPDATE:
Martin participated in TEDxKC2015 in August 2015. Watch and hear him tell his story here (fast forward to 44.25 to skip straight to him): TEDxKC2015
You might also like the following posts:
I Raise My Eyes To Say Yes: A Memoir [a book review]
Disclosure: I purchased the book and received no compensation for this post. The opinions are all mine. This post contains affiliate links for your convenience.