I’ve read two books recently that I think will have interest for some MillersTime readers, especially for those of you who have had some involvement with children, adolescents, and/or adults with some form of disability, either in your teaching or counseling, in your own family or with someone you know. Both books have been ‘out’ for a while but are new to me. Both books are quick reads. One is nonfiction; the other is fiction. They address somewhat similar issues, and both are positive books that have much to teach all of us.
Ghost Boy: My Escape From a Life Locked Inside My Own Body by Martin Pistorius with Megan Lloyd Davies, 2011 and reissued in 2013. Currently #5 on the NY Times list of Best Sellers.
Briefly, it’s an autobiography of a boy/adolescent/man (Martin Pistorius) who was normal until one day when he had just turned 12 and came home from school sick. He gradually began to sleep all day and not eat. He became worse, couldn’t move, couldn’t make eye contact, and lost his ability to speak. By the second year of his illness he was simply lying asleep in a fetal position. Doctors finally diagnosed him with cryptococcal meningitis and told his parents he was beyond hope of any treatment, and they should make him comfortable at home until he died.
But somehow he didn’t die, and his parents would bathe, feed, and care for all his needs. Their life was a nightmare, and Martin’s was too, especially as he began to ‘wake up’ and regain consciousness. His problem was no one realized he was able to think or to communicate. He was trapped in his head and in a body he could not control.
What happens next (over an 8-10 year period) will keep you entranced and amazed. It’s not a spoiler to say he eventually makes contact with the world. But it is how that happens that is the wonderful part of his story, and I’ll leave that for your own discovery.
Know, however, that as Martin emerges and makes contact with the world, you will discover an individual who will amaze and inspire you. Martin takes you along on his journey, and you will meet some equally amazing individuals who are part of his life and of his emergence back into the world.
It is a story that will delight you and will make you cry. It will give you insights into what it means to be invisible, to be powerless, and to be human. And it will show you the power of courage and of honesty.
I suspect I will long remember Martin Pistorius and will want to know how his life progresses.
(There was a recent NPR piece entitled Locked-in-Man in their weekly Invisibilia podcast series that tells some of Martin’s story.)
Wonder by R.J. Palacio, pen name for Raquel Jaramillo (Feb. 2012).
Ghost Boy led me to the novel Wonder which seemed to have some similar themes. Three MillersTime readers (LL, CO, HR) had written about it and had cited it as among the books they most enjoyed in 2014.
CO: “Story of a young boy with severe facial malformities and how he was accepted in a new 5th grade glass. It touches on compassion, friendship, loyalty, love, forgiveness, and all the social mores of society. It is a must for all and a great one for families. My 5th grade grandson urged me to read it. Glad I did. A children’s book but not a children’s book as the messages are for all.”
HR: ” A compelling look at the power of the human spirit and a loving family…the main character, a fifth grade boy…told through his voice as he faces the challenges of middle school with his own exceptionality, which produces all the expected responses of fifth graders but also the redeeming power of goodness to prevail. A read for anyone who has worked with kids or cares about them.”
I agree with both of these descriptions, and while I generally will choose a nonfiction over a fiction treatment of these type of stories, there is something quite appealing about Wonder. It not only gives the ‘views’ of the individual struggling with his physical deformity, but also delves into what those around him, his parents, his sister, a number of other fifth graders, their parents, and the school authorities see, experience, and do.
It may be a bit too ‘tidy’ by the end, but in a similar way to the nonfiction Ghost Boy, it offers insights and lessons from which we all can learn.
(There was also an NPR story, How One Unkind Moment Gave Way to ‘Wonder’, that interviews the author and gives some background as to how this book came to be written.)
Let me and others know if you read either and of your reactions to what you read.