Hello friends, and a very happy weekend to you. Today we’re having a virtual book discussion on the book Ghost Boy by Martin Pistorius. You may remember I invited you to read the book Ghost Boy six weeks ago in the post Life of a Secretly Lucid Vegetable. I love talking about real here. Real things that really matter.

(If you’re a new subscriber, I post recipes during the week and muse on the weekends.)

So what is a virtual book discussion? I don’t have a textbook definition for you, but today I’ll share thoughts on the book Ghost Boy and hope you will too. The discussion is obviously not live, but a safe place to bounce thoughts and impressions, see what others think about the book too.

Spoiler alert: If you haven’t read the book and plan to, you may want to hold off on reading this post. Don’t want to ruin it for you. 

The truth is, when I mentioned Ghost Boy here six week ago, I hadn’t yet read it. I don’t generally recommend books I haven’t read first, but the book really intrigued me and was suggested by a good friend whose recommendations I trust.

I’ll be honest: this was a hard read. Really hard, but really good. I laughed. I was angry. I smiled. I cried. My horizons widened. But without further ado, let’s begin.

Here’s the gist of the story about Martin Pistorius from his website: 

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.

Was I glad I read the book? In a word, yes. Because I learned so much from Martin Pistorius about forgiveness, gratitude, hope and perseverance. And because he’s a beautiful person who emerges triumphant and victorious from a horrific situation.

As you can imagine, there were quite a few poignant moments in the book. I felt for the Pistorius family, struggling to suddenly transition from being a “normal” family to a family with a disabled vegetative quadriplegic living in the home. Whether or not Martin should be placed in a care home 24-7 caused a great deal of tension between Martin’s mother and father. The constant care-giving he required was taking quite a toll on the family. They fought about it often right in front of Martin, not realizing he could think and understand. If only they’d known. But they didn’t.

One of the heart wrenching scenes in the book was when Martin’s mother and father had a terrible fight. His dad storms out, his mom is left crying on the living room floor.

Says Martin: “She was wringing her hands, moaning, and I could feel the raw grief flowing out of her: she looked so alone, so confused and desperate. I wished I could reassure her, stand up from my wheelchair and leave behind this shell of a body that had caused so much pain. Mum looked up at me. Her eyes were filled with tears

“You must die,” she said slowly as she looked at me. “You have to die.”

Can you even imagine the intense stress that could drive a mother to say those horrible words to her very own son? I’m not here to judge, and I don’t think Martin does either. None of us knows until we’re there how we’d react under that intense moment by moment pressure. I think Martin’s mother was terrified that his presence in their home would adversely affect her remaining two “whole” children. The pressure, work and stress must have been excruciating. In fact, she later tried to commit suicide and was hospitalized in a psychiatric ward for some time.

What amazes me most is how Martin loved (and forgave) his mother despite it all.

He says, pg.63: “Little by little I learned why it was so hard for my mother to live with such a cruel parody of the once healthy child she loved so much. Every time she looked at me she could see only the ghost boy he’d left behind.”

I found Martin to be a funny guy and a talented writer. His observations about women in general were particularly humorous. And true. Imagine being in a day care center for ten years with mostly women caregivers who don’t realize you’re actually hearing and processing the whole time.

Says Martin, pg. 44: “Whatever else they talk about, though, I’ve come to know that there are three topics women will return to again and again in conversation: their husbands, who are often a disappointment; their children, who are usually wonderful; their weight, which is always too high. Again and again, I hear them commiserate with each other about how difficult it is to make men more responsible and diets more effective. While I don’t understand their problems with their husbands, my heart always sinks whenever I hear them talk about calorie counting. Women seem to think they go on diets in order to feel happier, but I know from experience that this isn’t true. In fact, I can safely say that the less women eat, the grumpier they get.” Ha!

Another poignant part of the book recounts (with minimal detail) severe cruelty and repeated sexual abuse Martin endured at the hands of several women caretakers through the years. For the most part they worked at a respite care facility in the country where he sometimes went for weeks at a time when the rest of his family was on vacation. It’s hard to fathom how any human being could be as cold, heartless, selfish, repulsive and perverse as these women. This really upset me. Martin so wanted to communicate to his parents what was going on but of course he couldn’t.

Here’s a brief excerpt of his thoughts on the way to the respite care facility one time, pg. 152:

“Even when I went home I found it hard not to be afraid because I would soon wonder when I’d have to go back again. I wasn’t taken there often – maybe once or twice a year – but each time I was put into the car and driven out of the city, I’d start to cry as I realized where we were going. When we crossed over a railway line, I knew we were nearing the home and I’d listen to rocks ricocheting off the bottom of the car as we drove along a dirt road littered with them. As my heart beat and my throat tightened, I would long to scream and wondered if I could make my parents hear my thoughts if only I tried hard enough.

But the one thing I wished for more than anything as I sat strapped in a seat, powerless to tell anyone about what I knew would soon happen to me, was for someone to look at me. Surely then they would see what was written on my face? Fear. I knew where I was. I knew where I was going. I had feelings. I wasn’t just a ghost boy. But no one looked.”

Absolutely heartbreaking.

This post is already longer than I intended. Where to stop? But I’d like to conclude on a hopeful and positive note: Joanna.

Joanna was a dear friend of Martin’s sister Kim in England. Though she lived a continent away, she and Martin met on-line and fell in love across the miles.

Says Martin as they began to get acquainted: “Until now my existence has been full of the straight corners and neat edges that come with order and routine. But suddenly it is full of unexpected curves and the kind of chaos that I’m learning another person can create. Joanna is uprooting everything I trained myself to expect and accept: I’d resigned myself to leading a serious life full of work and study, yet suddenly she makes me laugh until I cry; I believed I would never find a woman to love, and now I’m beginning to hope that I have. I’m usually so careful and considered, but Joanna is making me reckless. She doesn’t see barriers but possibilities; she is utterly unafraid, and I’m beginning to feel that way too.”

What a gift Joanna is to Martin. And Martin to Joanna. It cuts both ways. They married in June of 2009.

Says Martin on his wedding day:

“I look up at the church’s ceiling and feel Him with me now… It is she (Joanna) who has taught me to understand the true meaning of the Bible passage we are having read during the service: ‘There are three things that will endure – faith, hope and love – and the greatest of these is love.’ My life has encompassed all three, and I know the greatest of all is indeed love – in all its forms. I’ve experienced it as a boy and man, as a son, brother, grandson, and friend. I’ve seen it between others, and I know it can sustain us through the darkest of times. Now it’s lifting me closer to the sun than I ever thought I would fly…”

If you have a minute, watch this mesmerizing TED Talk by Martin: “My Way Back to Words”.  You won’t be disappointed. He speaks through his computer, says some amazing things he doesn’t mention in Ghost Boy.

Martin Pistorius‘ book Ghost Boy is lovingly dedicated to Joanna:

“For my wife, Joanna, who listens to the whispers of my soul and loves me for who I am.”

Friends, this was such a beautiful and meaningful book. Every soul matters. The condition of the shell (body) is irrelevant to a person’s value. This book moved me and I’ll never again look at a person with disabilities in the same way.

If you haven’t read Ghost Boy, hope you do. If you did, were you glad you did? I found myself sad, angry, amazed and inspired at various points. How about you? Were you as amazed as I was about Martin’s forgiveness and lack of bitterness after the horrific abuse he endured? Joanna is a shining example of what truly unconditional love looks like lived out. I’d love to hear your thoughts, even if you didn’t get to read the book. Have a wonderful weekend!

You may also like: Hudson & The Little Yellow School Bus

The post Ghost Boy by Martin Pistorius: Virtual Book Discussion appeared first on Through Her Looking Glass.

“The single biggest problem in communication is the illusion it has taken place.” Tell me friends: do you not love this quote? Oh my. You better believe my kids know it by heart. Ha.

Happy weekend to everyone today! Hope you have some relaxation and down time figured into your weekend plans. We were originally slated (by forecasters, that is) for a Nor’easter today and then it fizzled here in NH. So the shovelers are all doing the happy dance. And others like me, who clutch to every remote excuse for hibernation, feel cheated. So there you have it.

Especially hope you’ll hang with me to the end today: I’ve got a question for you.

So back to communication. The ability to communicate is actually quite a gift. Easily taken for granted, especially if you can’t remember a time when you couldn’t communicate.

Most of you know about my little Hudson. (He’s five, has Down syndrome.) So when Hudson’s hungry, he goes over to my stash of cutting boards, gets one. Next he heads to the pantry, snags the peanut butter jar. Puts it on the cutting board. Then moves on to the fridge for the grape jelly hunt. So even though there aren’t so many words, there’s lots of communication taking place. I get the message loud and clear he’s hungry when he collects all the PB & J supplies. Communication is quite a gift, and I’m grateful Hudson has his own way of telling me he’s hungry.

I was contemplating communication last week, chatted with a few friends about it. When I was little, maybe four or five, I remember my mother taking me along to a nursing home to visit a friend of hers who was in a coma. Unresponsive. We’ll call her Cindy. I don’t remember all the details that put Cindy in that state, but she was a relatively young woman in her twenties who had a stroke. Cindy had blank, unseeing eyes, and was covered with tubes and wires. No one seemed to know if she could hear and understand, and the doctors and nurses treated her as if she couldn’t. I remember my mother being convinced we just couldn’t know whether Cindy could hear or understand. So on our visits, we gave her the benefit of the doubt, acted as if she could see, hear and understand everything we said. We’d talk about the weather, her family, what was going on in our family. Chat about whatever we could think of that might interest her, including reading verses and singing hymns. It’s not as easy as you might think having a completely one way conversation for an hour at a time.

And I can only imagine it would be quite a horrible imprisonment to be trapped in an unresponsive body if your mind is fully present and engaged. To be unable to communicate in any way. A travesty and perhaps one of the worst hells on earth.

But I’m hearing more and more stories of people who were once in a coma or an unresponsive state that miraculously come back around. What a story they have to tell on the other side. One such fascinating and poignant story is about a twelve year old South African boy named Martin.

“In January of 1988, Martin Pistorius came home from school complaining of a sore throat. He never went back. Within a year, Martin had degenerated into a mute and quadriplegic. By his fourteenth birthday he was a hollow shell, unseeing and unknowing; he spent his days at a care center, sitting blankly in front of the television while his family waited for him to die.

And then his mind came up for air.

For an unimaginable ten years, Martin would be completely conscious while trapped inside his unresponsive body, secretly aware of everything happening around him and utterly powerless to communicate it.

Ghost Boy is Martin’s story, as written – shockingly and triumphantly – by Martin himself. With unflinching candor, Martin describes the chilling details of his life as a Secretly Lucid Vegetable – from the perversion of some who believed him to be brain dead, to the grace of those who sought recognition in his eyes.

For an age when prolonged illness and misdiagnoses are too common, Ghost Boy is the hopeful story of a discarded life awakening from passivity to action, despair to hope, captivity to freedom.”  (from the back cover of Ghost Boy)

Martin’s is a shocking and amazing story, nothing short of a miracle. And here’s my question for you. I’ve not yet read the book Ghost Boy. But I’m about to start. And I wonder if you might like to read it too. And then in a few months we could come back and talk about it here. An on-line virtual book discussion of sorts. (Not live.) So let’s pick a Saturday in March. Does the 19th work? That gives you a week or so to get the book at the library and hopefully enough time to read.

Here’s an Amazon link with more info. on the book. And then I’ll post about Ghost Boy on Saturday, March 19th and you can share your thoughts and impressions too. (If you want.) Just think about it.

So let me finish telling you about Cindy now. Despite the medical staff’s opinion, my mom was convinced Cindy was lucid. One day she brings in a white board and marker, places the marker in Cindy’s clenched fingers. Cindy’s fingers clutch the pen, and laboriously and painstakingly she draws letters onto the white board. A word forms. A word and some numbers. A scripture reference. You can imagine the shock of the medical staff. But I don’t think it surprised my mother.

Eventually, over months, Cindy comes out of her unresponsive state. Her life as a Secretly Lucid Vegetable. Tells us how much she enjoyed our visits. That she remembers our conversations, each detail. Also the verses and singing.

And that’s one of the reasons I believe in miracles. That and the first glimpse of each of my newborns’ precious faces. Miracles. To me, miracles are just divine glimpses. Glimpses reminding me to look Up.

(If you’re new here, I post recipes during the week and muse on the weekends. Thank you for visiting today.)

If you’re a book worm like me, here’s a list (and short reviews) of other books I love that you might like too: Reading List 2015

The post Life As a Secretly Lucid Vegetable appeared first on Through Her Looking Glass.