Denis Daneman is Professor and Chair Emeritus in the Department of Paediatrics at the University of Toronto, and Paediatrician-in-Chief Emeritus at the Hospital for Sick Children in Toronto
Here’s a strong recommendation for all paediatricians and paediatricians-in-training: if you are going to read only one book in 2018, seriously consider Ghost Boy: The miraculous escape of a misdiagnosed boy trapped inside his own body, the autobiography of Martin Pistorius, co-written with Megan Lloyd Davies. The book was given to me by a colleague aware of my bibliophilia, my South African roots and my advocacy for child health: “Read this!” she said, simply and forcefully. I obeyed, picking it up a couple of days later. I could not put it down until I’d read it cover to cover.
The story is pretty simple: a 12 year old, previously well boy in South Africa, develops an undiagnosed neurological illness, which leaves him mute and quadriplegic and at the mercy of caregivers who ranged from the most caring to the worst abusers. His family are pushed to the limits (each in their own way). Slowly but steadily he regains awareness: he is able to document his life experiences, yet unable to communicate them. That is, until an especially attuned caregiver becomes convinced of his awareness and pushes his family to have him assessed. The book documents the mind-blowing development of his computer assisted communications skills, his education and his emergence into adulthood.
What’s not so simple are relationships. The family’s desperation is palpable. Then there’s the variation in the responses of his caregivers, from the most caring to the most abusive – some deserve to be in a penitentiary, not at the side of our most vulnerable.
His “Olympic moments” are akin to those of a marathon runner: slow, steady development of increasingly sophisticated communication skills, emergence of his personality, and his relationships. When you have recovered from reading the book, take a moment to relax, then watch his TED Talk: How my mind came back to life – and no one knew.
Ghost Boy is a pretty simply written book; it’s not going to astound you with its prose, and you may get a little confused by the chronology, but you won’t regret the time you spent reading it. And if you have some more time for impactful “complex care” literature, if you have not yet read them, then get copies of Ian Brown’s The Boy in the Moon, a parent’s beautifully written and raw account of his seriously disabled son, Walker. Then read Craig Davidson’s Precious Cargo, the author’s awakening as a school bus driver for a group of special “special needs” kids. The latter was a finalist for the CBC’s 2018 Canada Reads series. I would be astonished if you are not moved by these three books, and a little disappointed. I have bought at least a dozen copies of Ghost Boy and shared them among my colleagues. Of the ten or twelve who have read it so far not one has failed to be impacted by the experience.