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.”
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
Poignantly introduced, Allie! Listening to Martin explain what it was like to be trapped in a body while unable to express himself made me more aware of the feelings experienced by our oldest daughter (with Down Syndrome)due to trouble communicating. It frustrates her and brings a measure of sadness into her life. Obviously she and Martin are wired much differently, intellectually, yet both have struggled with making themselves understood and “known”, and having their emotional needs met. Hope to be able to find this book at the library. In the meantime, will be interested in tagging along and listening to those who join the discussion.
Martin is such an amazing human being and I can’t imagine the frustration he felt unable to communicate for those many years. I see my little Hudson too and imagine how frustrating it must be to only point and gesture most of the time, always hoping someone will understand what you want and need. Communication is such a gift and it’s easy to forget that until we see Martin and what an isolating world it becomes without it. XO
Shashi @ RunninSrilankan says
Oh Wow Allie – what an amazing review! I bought the book but haven’t been abe to bring myself to read it yet – but think I will start now. While my dad was grown, in his last years here on earth, he was unable to do a lot for himself or communicate effectively and I often wondered what exactly he was feeling and thinking – and this book struck a cord. That TED talk when Martin P. talks about the effect of a strangers smile as he sat in the car when his dad went into a store had me bawling – such a simple act can give so much hope – with the giver not even realizing it. And I love how Martin P. describes Joanna as someone “who listens to the whispers of my soul and loves me for who I am.” Wow – what an amazing book – what an amazingly beautiful human Martin is – just like you, my sweet friend!
I hope you and all your boys have a wonderful weekend. Big hugs!
Dear Shashi, thanks so much for taking the time to read this post, friend. I know you read blogs ALL WEEK LONG, truly sweet of you to drop by on the weekend. It’s a hard read, but one of the most amazing things Martin says is that he lived a life of mostly fantasy just to keep sane and occupy his mind. But the only thing he knew was really real, was God. He says God was his constant companion. His family believed in God, but they apparently never attended church. It’s fascinating to hear how Martin trusted God in his darkest moments that lasted for many years. I promise it will be a very hard read, but I don’t think you’ll regret it. I’m a different person after reading it. I’m so happy that Martin and Joanna have each other. I’m so glad he can finally have some happiness here on earth. Yeah, I cried about that stranger smiling at him in the car too. We just have no idea the life impact we can have on others without even knowing it. My grandfather had a stroke shortly after my second little boy was born back in 2001, when we were still living in SC. I flew up to CT be with him for a while, and baby Jacob came with me. At this point my grandfather was non-verbal, and I was chatting with him and changed little Jacob’s diaper on the end of the bed. My grandfather, who hadn’t spoken in some time, said “no clothes, no clothes”, and apparently those were the last words he ever spoke. Seeing your dad unable to communicate must have been so hard, friend. He was blessed to have a sweet daughter like you. Have a wonderful week! xo
Aunt Pinkie says
This was an incredible post. Martin’s Ted talk was particularly poignant and inspiring! I am about half way through the book and now hope to finish it. It has been a hard read, I must admit. Thanks for opening our eyes and our minds!
Thanks for coming along for the ride Aunt Pinkie. It was quite a read, wasn’t it. I don’t regret reading it, but it was so hard to hear of his pain and suffering. What I didn’t mention in this post and I should have, was that there were many kind and wonderful caregivers along the way. At one point Martin says there were more good and kind people than there were not. So that is a bright spot. It’s just that the bad ones were so awful.
RuthAnne Fuller says
I meant to order this book the last time you highlighted it…never did…now it is on my Kindle…I am sure I shall be touched dramatically by his story. Not sure when I will get to read it thought…Dynel and the 10 grands are spending their spring break with us beginning late Tuesday…will be busy time including a wedding shower for Alyson, who turned 22 this week, graduates college in May and get married on Aug. 20 after a summer of ministry at The Wilds Camp in Brevard, NC. Do take care…Grace and Blessing to y’all…hi to Jon…Ruth Anne
Hi RuthAnne, you and Herb sure do stay busy! Glad to hear of all your exciting plans and that Alyson is graduating and getting married this summer. Sounds wonderful. Love to all!
Susie Mandel says
I’m so glad you recommended this book, Allie. It was incredible. Like you, I felt so many emotions while reading it. What an amazing impact Martin Pistorius has had on so many people. I think a few things that hit me hardest while reading the book were what his mom went through, the abuse he suffered at the hands of incredibly horrible women, and the patient and unconditional love of his father. What an inspiring story he tells and has lived. I loved the Ted Talk video you included, too. My favorite part was how his face lit up and he smiled at the mention of his wife’s name. That was precious. Thanks again SO much, Allie. This book is a life changer.
Hi Susie, thanks for coming along on this ride. I was so glad my friend Lori just happened to randomly mention the TED talk the other day so I could include it here – I loved seeing Martin and hearing him speak. I think the TED talk was from about six months ago if I remember correctly. Yeah, I loved seeing him smile at Joanna’s name too. After all he’s been through, it’s wonderful to see him get snatches of joy and happiness. What a gift. He really made me think when he said “They say that actions speak louder than. But do they?” It means something coming from someone who couldn’t communicate for many years. Love you Susie, have a great week!
Aunt Margie says
“Ghost Boy” is the most riveting book I have read in a long while, and not for the faint of heart. The reality that one could be robbed of his personhood, and then treated like an imbecile with added unthinkable cruelties is excruciating, not only for Martin, but for the reader. For one whose whole communication system was shut down for years, the marvel was his magnificent ability to weave words together like a masterful painting. The boy-man was busy creating during all those dark years. His undercurrent of love for his parents, even through their despair, was beautiful. He told his story truthfully and painfully yes, but without the scars of bitterness that one would expect. Which is not to deny the scars from the abuse. Joanna, Joanna, you are a breath of fresh air! “Ghost Boy” is now part of ME, tangled in my soul, and Allie, this was a GREAT recommendation.
Dear Auntie M – it was quite a read and thanks for coming along on this journey. I had to put the book down a few times and come back later, it was that painful. Everything you said about Martin resonates so deeply with me too. I’m amazed at his incredible communication skills. For one who was left “in the dark” for so many years, he’s truly a miracle. I respect him so much for choosing to forgive. We had a live book discussion at church last Saturday morning on Ghost Boy, and it was really cathartic to be able to talk this book through with other women. XO
Dear Allie, This book was very worthwhile and I was extremely glad to have accepted your invitation to join in the reading.
In some ways, this book was truly uplifting: the resilience of the human spirit, the fact that Martin reconnected with his family and with the world, and found his place in it, that he accepted himself, found his vocation, and met a true love. It was a remarkable story, and I think an important one for him to share with the world. An important story for people to read.
It was also a very difficult read. To be trapped in a body that won’t allow you to communicate anything with the world around you, it must be one of the hardest things a human could endure. My heart went out to the family, too. I can’t imagine how hard the experience must have been for them. Without a doubt, the hardest part of this book for me to read was the abuse. I actually had to stop reading the book for about a week. It is hard to understand how a caregiver could carry that kind of cruelty in them, and it breaks my heart. The fact that Martin spoke up by writing his book raises awareness and that in itself can make a profound difference.
Martin writes his compelling story so well and with such honesty, I had read the first 8 chapters within hours of picking the book up from the library. This book makes a person think about the ways in which we communicate, the importance of seeing the whole person, and of realizing that we never really can know what is inside another person’s mind and heart.
Thanks Allie, this was an incredible story, and I had been waiting to read this post. I will remember Ghost Boy’s lessons as I deal with people. It was a reminder to pay attention, a reminder of the power of patience, kindness and compassion. Have a wonderful weekend my friend. Xoxo
Hi Carina, you were so brave to come along on this book reading journey. I know it was such a hard read. I didn’t know how hard until I got into it myself. I agree, it was uplifting in that it had a positive outcome and that he found his place. And yet, to hear of the cruelty and abuse. I truly don’t understand how anyone could be that harsh and cruel. I stopped reading it for a while too. I wondered how I could keep reading. And the fact is, that he actually LIVED it. I am so glad he told his story too. When choosing the title of this post I did a search through google to find out how many times his name has been searched, and it’s amazing how many times — thousands and thousands. I know his sharing his story is making a difference in the world. He’s a brave man to tell his painful story, because just in the writing and talking it through, he had to re-live that nightmare. And that must have been excruciating. I wish he and Joanna all the happiness in the world. I too will always remember the amazing lessons from this book. In the TED talk he says, “They say actions speak louder than words. But do they?” That, coming from someone who couldn’t communicate for many many years, made me think really really hard. Thanks for your insightful comments Carina, I loved hearing what you had to say and it was great to connect over the miles on this poignant read. Hope you and your family have a wonderful week, friend. XO
Cheyanne @ No Spoon Necessary says
I haven’t read the book yet, Allie, so I totally scrolled past all your discussion, because I didn’t want to spoil it for myself! But I did want to tell you that this book is still on my list of things I must read! Just need to find a little time for myself and a good leisurely read! I’ll be back to read this post when I’ve read the book though! Cheers, sweets – to a beautiful day! xo
Glad you didn’t spoil it for yourself Cheyanne, it’s a good and poignant read my friend. You and Boy have a wonderful Easter, wherever you are, whatever you do. xo
Mandi Korn says
I told you that I would not be able to read this book, I am too weak of mind to be able to handle anything of this magnitude, for quite some time. Even after reading your review and what others said about it, I still will probably not get myself to a place of endurance. I find myself falling more and more “off the grid” as the days go by, so I do not have to hear about human suffering or what the world is slowly turning into. I know that there are positives to take from the book, and I am glad that you and others have gained from that…..maybe one day I will too.
Hey Mandi, I so get it friend. Hopefully you took away something of value from the post anyway. And there have definitely been times in my life when I was unable to take on additional pain or suffering. Many times. Often what we have on our own plates is more than enough. I remember right after Hudson was born with a surprise diagnosis of Down syndrome, the book “Unbroken” was just coming out. And everyone I knew was reading it and telling me what a fascinating read it was. And I’d heard about the terrible torture Louis had endured in the concentration camps, and I just knew I couldn’t take that on then. I wasn’t in a frame of mind to enter someone else’s suffering, I had to get through my own stuff. The interesting thing is, I’ve STILL not read the book, though I did see the movie. Wishing you a wonderful Easter Mandi, you’re all set with those adorable chicks!