Recently, I came across a fascinating interview on YouTube. It was The Times UK reporter John-Paul Flintoff speaking with the author of "Ghost Boy", Martin Pistorius. Pistorius is a non-speaking wheelchair user with an incredible life story. Flintoff wanted to know about a conversation that changed everything for Pistorius and it is that conversation I would like to talk about today. But first, here's a little about the book and the author:
Published on Sep 23, 2013
www.ghostboybook.com
They all thought he was gone. But he was alive and trapped inside his own body for ten years.
In January 1988 Martin Pistorius, aged twelve, fell inexplicably sick. First he lost his voice and stopped eating. Then he slept constantly and shunned human contact. Doctors were mystified. Within eighteen months he was mute and wheelchair-bound. Martin's parents were told an unknown degenerative disease left him with the mind of a baby and less than two years to live.
Martin was moved to care centers for severely disabled children. The stress and heartache shook his parents' marriage and their family to the core. Their boy was gone. Or so they thought.
Ghost Boy is the heart-wrenching story of one boy's return to life through the power of love and faith. In these pages, readers see a parent's resilience, the consequences of misdiagnosis, abuse at the hands of cruel caretakers, and the unthinkable duration of Martin's mental alertness betrayed by his lifeless body.
We also see a life reclaimed—a business created, a new love kindled—all from a wheelchair. Martin's emergence from his own darkness invites us to celebrate our own lives and fight for a better life for others.
They all thought he was gone. But he was alive and trapped inside his own body for ten years.
In January 1988 Martin Pistorius, aged twelve, fell inexplicably sick. First he lost his voice and stopped eating. Then he slept constantly and shunned human contact. Doctors were mystified. Within eighteen months he was mute and wheelchair-bound. Martin's parents were told an unknown degenerative disease left him with the mind of a baby and less than two years to live.
Martin was moved to care centers for severely disabled children. The stress and heartache shook his parents' marriage and their family to the core. Their boy was gone. Or so they thought.
Ghost Boy is the heart-wrenching story of one boy's return to life through the power of love and faith. In these pages, readers see a parent's resilience, the consequences of misdiagnosis, abuse at the hands of cruel caretakers, and the unthinkable duration of Martin's mental alertness betrayed by his lifeless body.
We also see a life reclaimed—a business created, a new love kindled—all from a wheelchair. Martin's emergence from his own darkness invites us to celebrate our own lives and fight for a better life for others.
In Flintoff's interview, Pistorius talks about his life-changing conversation in terms of a choice that he needed to make, but was unable to. The author needed to choose an augmentative communication device, one that would cost most of a precious inheritance that his father had received. The decision was so great, so life-changing for good or for bad, that Pistorius was paralyzed and unable to act. But a conversation with his father changed everything, giving Pistorius 'the permission to get it wrong'.
Feeling paralysed by the gravity of a decision is a state that most caregivers will know well. We make decisions on behalf of our loved ones, sometimes involving life and death. Medical professionals sometimes press us for a decision that we are not ready to make. Often, we feel unprepared to make life changing decisions on the part of our loved one, just as Martin Pistorius felt when faced with his need to choose his speech generating software.
I like the advice of Pistorius Sr. This father's remark, "Sometimes you just have to choose, even if it turns out badly" changed his Martin's vantage point and freed him to finally act. Like Martin Pistorius, I am a serial information gatherer. But certainly there have been times in our family life when, even with mountains of data, I could not make up my mind about a surgery for Nicholas or a strategy to support my mother.
The next time I find myself stuck at a crossroads, I'm going to choose, even if it turns out badly. And if it does turn out badly, I must remember not to feel guilty - that's the implied 'other half' of Pistorius Senior's advice. Because moving forward is always better than being paralysed by fear.
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