- U.S. Release Date: November 12, 2013
- Page Number: 304
- Genre: Nonfiction
- U.S. Publisher: Thomas Nelson Publishing (Harper Collins)
I’ve recently become an NPR podcast junkie and I’m really loving their new podcast Invisibilia, about “the intangible things that shape human behavior.” Each week the hosts tell stories of people who have rare psychological or neurological experiences–on of their first stories is of Martin Pistorius, a South African man who spent six years trapped in his own body. After I heard this story, I had to know more and was happy to see his memoir was on Scribd.
When Pistorius (who as far as I can tell is not related to the convicted South African athlete Oscar Pistorius) is 12-years-old he develops a degenerative brain condition that leaves him mute and unable to move. Doctors couldn’t diagnose him and his parents were told he had the mind of a 3 month old and to take him home to wait for him to die. Only Martin doesn’t die and a few year later his mind comes back, but not his motor skills or speech. He can’t tell anyone he’s back and he lives like a ghost boy as the people around him assume he isn’t comprehending what he sees. It takes six years for his parents to finally figure out he was aware and the book is his reflections on his time as a ghost boy and his journey learning how to communicate using technology.
This book tells a really incredible story. Martin becomes well known in the Augmentative and Alternative Communication (AAC) community and it’s interesting to see all the people he meets as he goes to conference. It can be a little nightmare inducing too. One of his friends was paralyzed from the eyes down from a stroke at the age of twenty-five.But it’s amazing the amount of technology and work being done so everyone has a voice.
The parts I found most interesting are the parts where he tells the things he sees people do when they think no one is looking. He observes many of his caregivers mostly at their worse, but also some at their best.
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