They all thought he was gone. But he was alive and trapped inside his own body for ten years.
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.
|Publisher:||Nelson, Thomas, Inc.|
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About the Author
Read an Excerpt
The Miraculous Escape of a Misdiagnosed Boy Trapped Inside His Own Body
By MARTIN PISTORIUS
Thomas NelsonCopyright © 2013 Martin Pistorius
All rights reserved.
I spend each day in a care home in the suburbs of a large South African city. Just a few hours away are hills covered in yellow scrub where lions roam looking for a kill. In their wake come hyenas that scavenge for leftovers and finally there are vultures hoping to peck the last shreds of flesh off the bones. Nothing is wasted. The animal kingdom is a perfect cycle of life and death, as endless as time itself.
I've come to understand the infinity of time so well that I've learned to lose myself in it. Days, if not weeks, can go by as I close myself down and become entirely black within—a nothingness that is washed and fed, lifted from wheelchair to bed—or as I immerse myself in the tiny specks of life I see around me. Ants crawling on the floor exist in a world of wars and skirmishes, battles being fought and lost, with me the only witness to a history as bloody and terrible as that of any people.
I've learned to master time instead of being its passive recipient. I rarely see a clock, but I've taught myself to tell the time from the way sunlight and shadows fall around me after realizing I could memorize where the light fell whenever I heard someone ask the time. Then I used the fixed points that my days here give me so unrelentingly—morning drink at ten a.m., lunch at eleven thirty, an afternoon drink at three p.m.—to perfect the technique. I've had plenty of opportunity to practice, after all.
It means that now I can face the days, look at them square on and count them down minute by minute, hour by hour, as I let the silent sounds of the numbers fill me—the soft sinuousness of sixes and sevens, the satisfying staccato of eights and ones. After losing a whole week like this, I give thanks that I live somewhere sunny. I might never have learned to conquer the clock if I'd been born in Iceland. Instead I'd have had to let time wash over me endlessly, eroding me bit by bit like a pebble on the beach.
How I know the things I do—that Iceland is a country of extreme darkness and light or that after lions come hyenas, then vultures—is a mystery to me. Apart from the information that I drink in whenever the TV or radio is switched on—the voices like a rainbow path to the pot of gold that is the world outside—I'm given no lessons nor am I read to from books. It makes me wonder if the things I know are what I learned before I fell ill. Sickness might have riddled my body, but it only took temporary hostage of my mind.
It's after midday now, which means there are less than five hours to go before my father comes to collect me. It's the brightest moment of any day because it means the care home can be left behind at last when Dad comes to pick me up at 5 p.m. I can't describe how excited I feel on the days my mother arrives after she finishes work at two o'clock.
I will start counting now—seconds, then minutes, then hours—and hopefully it will make my father arrive a little quicker.
One, two, three, four, five ...
I hope Dad will turn on the radio in the car so that we can listen to the cricket game together on the way home.
"Howzat?" he'll sometimes cry when a wicket is bowled.
It's the same if my brother David plays computer games when I'm in the room.
"I'm going up to the next level!" he'll occasionally shriek as his fingers fly across the console.
Neither of them has any idea just how much I cherish these moments. As my father cheers when a six is hit or my brother's brow knits in frustration as he tries to better his score, I silently imagine the jokes I would tell, the curses I would cry with them, if only I could, and for a few precious moments I don't feel like a bystander any more.
I wish Dad would come.
Thirty-three, thirty-four, thirty-five ...
My body feels heavy today, and the strap holding me up cuts through my clothes into my skin. My right hip aches. I wish someone would lie me down and relieve the pain. Sitting still for hours on end isn't nearly as restful as you might imagine. You know those cartoons when someone falls off a cliff, hits the ground, and smashes—kerpow!—into pieces? That's how I feel—as if I've been shattered into a million pieces, and each one is hurting. Gravity is painful when it's bearing down on a body that's not fit for the purpose.
Fifty-seven, fifty-eight, fifty-nine. One minute.
Four hours, fifty-nine minutes to go.
One, two, three, four, five ...
Try as I might, my mind keeps returning to the pain in my hip. I think of the broken cartoon man. Sometimes I wish I could hit the ground as he does and be smashed into smithereens. Because maybe then, just like him, I could jump up and miraculously become whole again before starting to run.
Until the age of twelve, I was a normal little boy—shyer than most maybe and not the rough-and-tumble kind but happy and healthy. What I loved most of all was electronics, and I had such a natural ability with them that my mother trusted me to fix a plug socket when I was eleven because I'd been making electronic circuits for years. My flair also meant I could build a reset button into my parents' ancient computer and rig up an alarm system to protect my bedroom from my younger brother and sister, David and Kim. Both were determined to invade my tiny Lego-filled kingdom, but the only living thing allowed to enter it, apart from my parents, was our small yellow dog called Pookie, who followed me everywhere.
Over the years I've listened well during countless meetings and appointments, so I learned that in January 1988 I came home from school complaining of a sore throat and never went back to classes again. In the weeks and months that followed, I stopped eating, started sleeping for hours every day, and complained of how painful it was to walk. My body began to weaken as I stopped using it and so did my mind: first I forgot facts, then familiar things like watering my bonsai tree, and finally even faces.
To try and help me remember, my parents gave me a frame of family photos to carry around, and my mother, Joan, played me a video of my father, Rodney, every day when he went away on business. But while they hoped the repetition might stop the memories slipping from my mind, it didn't work. My speech deteriorated as I slowly forgot who and where I was. The last words I ever spoke were about a year after I first became ill as I lay in a hospital bed.
"When home?" I asked my mother.
But nothing could reach me as my muscles wasted, my limbs became spastic, and my hands and feet curled in on themselves like claws. To make sure I didn't starve as my weight plummeted, my parents woke me up to feed me. As my father held me upright, my mother spooned food into my mouth, and I swallowed instinctively. Other than that, I didn't move. I was completely unresponsive. I was in a kind of waking coma that no one understood because the doctors couldn't diagnose what had caused it.
At first, the medics thought my problems were psychological, and I spent several weeks in a psychiatric unit. It was only when I was suffering from dehydration after the psychologists failed to persuade me to eat or drink that they finally accepted my illness was physical and not mental. So brain scans and EEGs, MRI scans and blood tests were done, and I was treated for tuberculosis and cryptococcal meningitis, but no conclusive diagnosis was made. Medication after medication was tried—magnesium chloride and potassium, amphotericin and ampicillin—but to no effect. I'd traveled beyond the realms of what medicine understood. I was lost in the land where dragons lie, and no one could rescue me.
All my parents could do was watch me slip away from them day by day: they tried to keep me walking, but I had to be held up as my legs got weaker and weaker; they took me to hospitals all over South Africa as test after test was run, but nothing was found; and they wrote desperate letters to experts in America, Canada, and England, who said their South African colleagues were surely doing all that could be done.
It took about a year for the doctors to confess that they had run out of treatment options. All they could say was that I was suffering from a degenerative neurological disorder, cause and prognosis unknown, and advise my parents to put me into an institution to let my illness run its course. Politely but firmly the medical profession washed its hands of me as my mother and father effectively were told to wait until my death released us all.
So I was taken home, where I was cared for by my mother, who gave up her job as a radiographer to look after me. Meanwhile my father worked such long hours as a mechanical engineer that he often didn't get home to see David and Kim before they went to bed. The situation was untenable. After about a year at home, at the age of fourteen it was decided that I should spend my days in the care center where I am now, but I'd go home each night.
Years passed with me lost in my dark, unseeing world. My parents even tried putting mattresses on the living-room floor so that they, Kim, and David could all live as I did—at floor level—in the hope of reaching me. But I lay like an empty shell, unaware of anything around me. Then one day, I started coming back to life.
COMING UP FOR AIR
I'm a sea creature crawling along the ocean floor. It's dark here. Cold. There's nothing but blackness above, below, and all around me.
But then I begin to see snatches of light glimmering overhead. I don't understand what they are.
Something tells me I must try to reach them. It drives me upwards as I kick towards the shards of light, which skitter across the surface far above me. They dance as they weave patterns of gold and shadow.
* * *
My eyes focus. I'm staring at a baseboard. I'm sure it looks different than it normally does but I don't know how I know this.
* * *
A whisper across my face—wind.
* * *
I can smell sunshine.
* * *
Music, high and tinny. Children singing. Their voices fade in and out, loud then muffled, until they fall silent.
* * *
A carpet swims into view. It's a swirl of black, white, and brown. I stare at it, trying to make my eyes focus, but the darkness comes for me again.
* * *
A wash cloth is pushed cold across my face and I feel my cheek flame in disapproval as a hand holds my neck steady.
"I won't take a second," a voice says. "We've got to make sure you're a clean boy now, don't we?"
* * *
The snatches of light become brighter. I'm getting closer to the surface. I want to break through it but I can't. Everything is too fast, whereas I am still.
* * *
I smell something: shit.
I drag my eyeballs upwards. They feel so heavy.
A little girl is standing in front of me. She is naked from the waist down. Her hand is smeared brown. She giggles as she tries to open the door.
"Where are you going, Miss Mary?" a voice asks as a pair of legs appears at the edge of my vision.
I hear the door being closed and then a grunt of disgust.
"Not again, Mary!" the voice exclaims. "Look at my hand!"
The little girl laughs. Her delight is like a ripple of wind carving a groove in sand running smooth across a deserted beach. I can feel it vibrating inside me.
* * *
A voice. Someone is speaking. Two words: sixteen and death. I don't know what they mean.
* * *
It's nighttime. I'm in my bed. Home. I gaze around in the half-darkness. A row of teddy bears lies beside me, and there's something lying on my feet. Pookie.
But as the familiar weight disappears, I can feel myself rising. I'm confused. I'm not in the sea. I'm in real life now. But still I feel as if I'm floating, leaving my body and moving upwards towards my bedroom ceiling.
Suddenly I know that I'm not alone. Reassuring presences are wrapping themselves around me. They comfort me. They want me to follow them. I understand now that there's no reason to stay here. I'm tired of trying to reach the surface. I want to let go, give myself up to the deep or to the presences that are with me now—whichever takes me first.
But then one thought fills me: I can't leave my family.
They are sad because of me. Their grief is like a shroud that envelops me whenever I break through the surface of the waves. They'll have nothing to grab on to if I leave. I can't go.
Breath rushes into my lungs. I open my eyes. I'm alone again. Whatever was with me is gone.
I have decided to stay.
Even as I became aware, I didn't fully understand what had happened to me. Just as a baby isn't born knowing it can't control its movement or speak, I didn't think about what I could or couldn't do. Thoughts rushed through my mind that I never considered speaking, and I didn't realize the body I saw jerking or motionless around me was mine. It took time for me to understand I was completely alone in the middle of a sea of people.
But as my awareness and memories slowly started to mesh together, and my mind gradually reconnected to my body, I began to understand I was different. Lying on the sofa as my father watched gymnastics on TV, I was fascinated by the bodies that moved so effortlessly, the strength and power they revealed in every twist and turn. Then I looked down at a pair of feet I often saw and realized they belonged to me. It was the same with the two hands that trembled constantly whenever I saw them nearby. They were part of me too, but I couldn't control them at all.
I wasn't paralyzed: my body moved but it did so independently of me. My limbs had become spastic. They felt distant, as if they were encased in concrete, and completely deaf to my command. People were always trying to make me use my legs—physical therapists bent them in painful contortions as they tried to keep the muscles working—but I couldn't move unaided.
If I ever walked, it was to take just a few shuffling steps with someone holding me up because otherwise I would crumple to the floor. If I tried to feed myself, my hand would smear food across my cheek. My arms wouldn't instinctively reach out to protect me if I fell, so I'd hit the ground face first. I couldn't roll myself over if I was lying in bed, so I'd stay in the same position for hours on end unless someone turned me. My limbs didn't want to open up and be fluid; instead they curled into themselves like snails disappearing into shells.
Just as a photographer carefully adjusts his camera lens until the picture becomes clear, it took time for my mind to focus. Although my body and I were locked in an endless fight, my mind got stronger as the pieces of my consciousness knitted themselves together.
Gradually I became aware of each day and every hour in it. Most were forgettable, but there were times when I watched history unfold. Nelson Mandela being sworn in as president in 1994 is a hazy memory while Diana's death in 1997 is clear.
I think my mind started to awaken at about the age of sixteen, and by nineteen it was fully intact once more: I knew who I was and where I was, and I understood that I'd been robbed of a real life. That was six years ago. At first I wanted to fight my fate by giving some tiny sign, a movement or a look that, like the pieces of bread Hansel and Gretel left behind to help them find their way out of the dark woods, would guide people back to me. But gradually I came to understand that my efforts would never be enough: as I came back to life, no one fully understood what was happening.
Excerpted from GHOST BOY by MARTIN PISTORIUS. Copyright © 2013 Martin Pistorius. Excerpted by permission of Thomas Nelson.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
1 Counting Time 1
2 The Deep 5
3 Coming Up for Air 10
4 The Box 13
5 Virna 19
6 Awakening 23
7 My Parents 32
8 Changes 36
9 The Beginning and the End 39
10 Day by Day 45
11 The Wretch 50
12 Life and Death 54
13 My Mother 58
14 Other Worlds 65
15 Fried Egg 68
16 I Tell a Secret 71
17 The Bite 76
18 The Furies 78
19 Peacock Feathers 83
20 Daring to Dream 88
21 Secrets 96
22 Out of the Cocoon 99
23 An Offer I Can't Refuse 101
24 A Leap Forward 104
25 Standing in the Sea 109
26 She Returns 112
27 The Party 114
28 Henk and Arrietta 120
29 The Healer 124
30 Escaping the Cage 129
31 The Speech 135
32 A New World 141
33 The Laptop 144
34 The Counselor 146
35 Memories 150
36 Lurking in Plain Sight 154
37 Fantasies 158
38 A New Friend 162
39 Will He Ever Learn? 164
40 GD and Mimi 169
41 Loving Life and Living Love 173
42 Worlds Collide 178
43 Strangers 184
44 Everything Changes 189
45 Meeting Mickey? 193
46 The Real Me 197
47 A Lion's Heart 199
48 I Tell Her 203
49 Sugar and Salt 205
50 Falling 211
51 Climbing 218
52 The Ticket 221
53 Coming Home 226
54 Together 229
55 I Can't Choose 236
56 Fred and Ginger 240
57 Leaving 244
58 A Fork in the Road 247
59 Confessions 249
60 Up, Up, and Away 253
61 Saying Goodbye 260
62 Letting Go 265
63 A New Life 267
64 Waiting 271
Most Helpful Customer Reviews
Wow. Wow. Wow. What an awesome, tragic and inspiring story! Just absolutely uplifting! I started this and was hooked from the first sentence barely able to put it down. Martin provides us with such an immense insight into the value of life, one that doctors washed their hands of, one doctors said should be left to die, a life people thought worthless, a life many objectified and abused. Just imagine being fully cognizant, inside your own body, but unable to communicate in any manner, no sounds, no movements, nothing, a "vegetable". Martin knew God was real and with him in the darkness just as he knew God knew he, Martin, was real. With God's presence, he persevered until one day a caregiver convinced others that there was more to Martin than they all thought. An inspiring story of love and the preciousness of all life. A must read!!
This is a beautiful and inspirational book. Martin's life story is extraordinary.
That was one of the most inspiring books I have ever read. Thank you for sharing your life with us.
The life of the child is compelling. I consistently found myself wondering what and how I would think and feel if I were him. The flow of the story and style of writing however I didn't connect to. I would still recommend this book as I feel it conveys powerful messages.
This book is amazing. It's the story of Martin. A normal boy living in South Africa until one day, at the age of 12, he comes home complaining of a sore throat. In a few months, Martin can't walk, talk, move, or eat on his own. Through this book Martin chronicles the ups, downs, & breakthroughs in his health & how he met the love of his life. I definitely recommend this book to anyone. *I received this book from Booksneeze in exchange for my review.*
Amazing autobiography! This book will make you realize just how much we take for granted in our lives!
I absolutely loved this book. I couldn't put it down.
Much more to this remarkable story! What was the correct diagnosis for this preteen at the time of the onset of his symptoms? The "nerve degeneration" concept is very broad, and doesn't really provide sufficient or specific information of lessons for future diagnosticians. The rare case of this young man's dramatic and difficult recovery from a "comatose" state has many lessons for health care systems and providers. This young man's experience supports a growing demand for around the clock surveillance of institutionalized persons, including those persons in long term health care and incarcerated persons. Sadly, there are disturbed persons in any group, and some of these disturbed individuals seek opportunities for criminal abuse of others in long term care facilities and in prison environments. Forty years ago, in my basic training as a registered nurse in the USA, I was taught that hearing was the last sense to be lost, and that the capacity to hear often remained in patients in a coma. I was taught, to assume comatose patients were able to hear, just as some surgical patients can retell jokes that surgeons told while they operated on the patient. I, and the nursing colleagues with whom I have worked over the decades of my nursing career, have cared for comatose patients applying the assumption that the person is able to hear. It is regrettable, and unconscionable, that, as reported by this young man, his caregivers did not universally provide a caring, and professional level of nursing care for him during the years that he, and his parents, depended on their services. The story of he and his wife is inspirational.
This was amazing!!!
I recommend this book to anyone.
Amazing book.. Amazing life I would love to read a sequel to this story or even a movie . Don't miss reading this book . It awakens every emotion you will ever have. Good luck and happiness always Martin.
Ghost Boy is a stunning story about a boy trapped inside his body for years and years. Thankfully he eventually returned to the land of the living through the power of love and faith. A true celebration of the human spirit.
Not very well written as he jumps around and can be dificult to follow. In general it is a good read just like "Look Up For Yes."
All in the entire book was not bad, I think it was just the particular genre; I stepped out of my comfort zone with this book, which is a good thing really just a bit scary. It is about a normal boy who, at the age of 12 became ill. Doctors didn't know what was wrong or how to treat him. He ended up in a wheelchair, unable to talk and his parents were told that there was basically nothing going on in his mind. This is his story. It's a heartbreaking story but yet an uplifting story of a journey that is enough to scare the healthy person straight, I think this why it was hard for me to get through it. It did not have anything to with Martin's story because he has a very compelling story to tell you.
This was a very inspiring story. The shear will and determination Martin has to meet every challenge in his life puts life in perspective, This man is golden. I am so sorry he had to endure the abuse and cruelty from some of his caregivers. Where Martin deserves every happiness for the rest of his life, those that took advantage and abused him will hopefully get what they deserve.
Good reading but too drawn out.
Beautifully written and inspirational. I could barely put it down.
A tremendous book, about an individual, who rose above, what others might consider physical shortcomings and disibilities.
Excellent book! Couldn't put it down!
A great book. Written in the first person and very insightful. For those who need to understand as well as those that need hope and faith that they will find love.
This book was amazing! He writes it in such a way that you feel his pain, struggle!
Amazing ! Beautiful ! "Affliction eclipsed by Glory". This book has touched me in a supernatural , God blessing way . An insightful mind that by God's Grace is so beautifully raw . Thank you for sharing your life and your mind .
What an amazing true story! I laughed, cried, and cheered out loud for Martin's successful journey.
What an amazing story. Often hard to put down. So glad I read it.
Heart wrenching and heart warming all in one! Martin so honestly shares with us his life; the triumph and tragedies alike. Please take the time to read this amazing story of a life transformed. Hopefully it inspires you to reflect on how you interact with people with disabilities. Thank you Martin for sharing.