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Ghost Boy
Martin Pistorius vertelt in Ghost Boy hoe hij als kind het locked-in-syndroom beleefde. Op zijn twaalfde begon het met een geheimzinnige griep. Binnen anderhalf jaar zat hij in een rolstoel en kon hij niet meer communiceren. Hij zag en hoorde alles, maar niemand merkte het. Je ergste nachtmerrie wordt werkelijkheid. Artsen dachten dat Martin het cognitieve niveau had van een pasgeborene. Hij belandde in een verzorgingstehuis voor gehandicapten, waar hij steeds verder verwijderd raakte van de wereld. Na elf jaar ontdekte een therapeute dat Martin wel degelijk reageerde op prikkels. Zij schonk hem aandacht, bleef met hem praten, en hij ging communiceren met zijn ogen. Dankzij haar hoop bevrijdde hij zich na twaalf lange jaren uit zijn lichamelijke gevangenis. Ghost Boy is een aangrijpend boek. Je leeft als lezer mee met Martin, in zijn onmacht om zich te uiten. Ervaar zelf hoe hoop en doorzettingsvermogen alle moeilijkheden in het leven kunnen overwinnen.
Martin Pistorius (Zuid-Afrika, 1975) communiceert via een stemcomputer, is getrouwd en woont in Engeland. Hij is auteur en webdesigner
Martin Pistorius (Zuid-Afrika, 1975) communiceert via een stemcomputer, is getrouwd en woont in Engeland. Hij is auteur en webdesigner
256 pages, Paperback
First published July 1, 2011
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Displaying 1 - 30 of 2,923 reviews
April 13, 2017
What do you think the worst things to tolerate would be if you had locked-in syndrome and could not communicate at all with people who did not even realise you had cognitive function? Unseasoned food, too-hot coffee (fed through a straw) and being positioned with his testicles trapped under him in his wheelchair. Also that having to watch Barney loving everyone on the care home tv was driving him mad.
The author fell into a vegetative state at age 12 and started to come round at 16, but it was not until he was 19 and a carer realised that he was conscious and listening to her that tests and eventually communication devices made a return to a relatively normal life possible. The author is still in a wheelchair and still uses a computer to speak, but he is married and works at a high level in computers.
What stands out about the book, is the author's detailing of the abuse, especially the sexual abuse he received from women carers who used his body to satisfy themselves in perverse ways secure in the knowledge he couldn't tell anyone. There are also incidents of violence, such as when the author was given an enema so violently he bled copiously. He continued bleeding into the bath he was given. The carer dipped his toothbrush in this bloody, fouled water and brushed his teeth with it.
Every week there are stories of children in care homes and vulnerable adults in old age homes being physically, violently abused. I never imagined that women would sexually abuse teenage boys with (presumed) no mental capacity though.
The book isn't really that interesting. The story is not unique, but the author is, so three stars for the book, but one more for the author for overcoming everything including total illiteracy, to write it.
The author fell into a vegetative state at age 12 and started to come round at 16, but it was not until he was 19 and a carer realised that he was conscious and listening to her that tests and eventually communication devices made a return to a relatively normal life possible. The author is still in a wheelchair and still uses a computer to speak, but he is married and works at a high level in computers.
What stands out about the book, is the author's detailing of the abuse, especially the sexual abuse he received from women carers who used his body to satisfy themselves in perverse ways secure in the knowledge he couldn't tell anyone. There are also incidents of violence, such as when the author was given an enema so violently he bled copiously. He continued bleeding into the bath he was given. The carer dipped his toothbrush in this bloody, fouled water and brushed his teeth with it.
Every week there are stories of children in care homes and vulnerable adults in old age homes being physically, violently abused. I never imagined that women would sexually abuse teenage boys with (presumed) no mental capacity though.
The book isn't really that interesting. The story is not unique, but the author is, so three stars for the book, but one more for the author for overcoming everything including total illiteracy, to write it.
March 29, 2016
Only Virna touches me for no other reason than to soothe my aching body - she comforts and heals, making me feel like something other than the repulsive creature I know I am.
This book is horrifying on many levels.
When Pistorius was 12, he came down with an unknown illness that trapped him inside his own body. Within a few weeks he became paralyzed. Unable to speak or move, Pistorius was a prisoner. Put into a day-home with people with an I.Q. or 30 or lower, Pistorius was still in full possession of his intelligence.
Imagine being able to hear and understand everything that's being said in front of you, but being unable to speak. And being thought of as an "imbecile" who has less intelligence than a toddler.
Pistorius lived the nightmare for over a decade - in a wheelchair, at the mercy of caregivers, and spending hours of every day just staring at the wall.
It wasn't until a caregiver with a kind heart, Virna, started noticing that Pistorius might be aware inside his body and pushing his family to get him tested so that he could find a way to communicate with the world once more.
...
People project whatever ideas they want on the physically passive and silent Pistorius. And he has no way of correcting them.
I remain in so many ways a blank page on to which they write their own script.
"You're so sweet," people will often say.
"What a gentle nature you have!" person after person tells me.
"You are such a kind man," someone else trills.
If only they knew of the gnawing anxiety, fiery frustration, and aching sexual desire that course through my veins at times.
...
I'm rating this so high mostly due to it being a touching and amazing story. A true story and a real one about a very horrifying situation and how this man was lucky enough to (relatively) break free from his hell existence.
However, it was not amazingly well-written and it's obvious Pistorius's strengths lie with computer programming and engineering, not in being a natural-born author.
...
TRIGGER WARNING: Abuse
Pistorius has some sadistic caretakers and there is a graphic chapter about this which may be too traumatic for some readers.
TRIGGER WARNING: Rape
Pistorius is raped and sexually abused by certain female caretakers. This is graphically described in one chapter and may be too traumatic for some readers.
...
Tl;dr - An amazing true story. At times funny, at times terrifying, at times touching - this book ends on a positive note and is overall an uplifting story. But it doesn't gloss over the darkness, terror, rape and abuse that Pistorius experienced. It's also very Christian as Pistorius turns to God for comfort and aid. Not the most well-written book I've ever read, but definitely worth reading, IMO.
This book is horrifying on many levels.
When Pistorius was 12, he came down with an unknown illness that trapped him inside his own body. Within a few weeks he became paralyzed. Unable to speak or move, Pistorius was a prisoner. Put into a day-home with people with an I.Q. or 30 or lower, Pistorius was still in full possession of his intelligence.
Imagine being able to hear and understand everything that's being said in front of you, but being unable to speak. And being thought of as an "imbecile" who has less intelligence than a toddler.
Pistorius lived the nightmare for over a decade - in a wheelchair, at the mercy of caregivers, and spending hours of every day just staring at the wall.
It wasn't until a caregiver with a kind heart, Virna, started noticing that Pistorius might be aware inside his body and pushing his family to get him tested so that he could find a way to communicate with the world once more.
...
People project whatever ideas they want on the physically passive and silent Pistorius. And he has no way of correcting them.
I remain in so many ways a blank page on to which they write their own script.
"You're so sweet," people will often say.
"What a gentle nature you have!" person after person tells me.
"You are such a kind man," someone else trills.
If only they knew of the gnawing anxiety, fiery frustration, and aching sexual desire that course through my veins at times.
...
I'm rating this so high mostly due to it being a touching and amazing story. A true story and a real one about a very horrifying situation and how this man was lucky enough to (relatively) break free from his hell existence.
However, it was not amazingly well-written and it's obvious Pistorius's strengths lie with computer programming and engineering, not in being a natural-born author.
...
TRIGGER WARNING: Abuse
Pistorius has some sadistic caretakers and there is a graphic chapter about this which may be too traumatic for some readers.
TRIGGER WARNING: Rape
Pistorius is raped and sexually abused by certain female caretakers. This is graphically described in one chapter and may be too traumatic for some readers.
...
Tl;dr - An amazing true story. At times funny, at times terrifying, at times touching - this book ends on a positive note and is overall an uplifting story. But it doesn't gloss over the darkness, terror, rape and abuse that Pistorius experienced. It's also very Christian as Pistorius turns to God for comfort and aid. Not the most well-written book I've ever read, but definitely worth reading, IMO.
August 10, 2018
TW/ sexual and physical abuse
It's been a while since a book has touched my heart like this did. The beginning of Martin's story is one of horror, but it evolves to be one of great triumph and growth. I loved his story of how he goes from someone who believes himself to have no future to someone who now has a bestselling book, his own business, and is expecting a child. This book was also a great exploration of people with non-verbal disabilities and how dehumanizing it can feel, so it really expanded my sympathy and made me more conscientious of people whose lives are like Martin's. The audiobook for this was fantastic and I would recommend it as long as you can handle sensitive subject matter about abuse.
It's been a while since a book has touched my heart like this did. The beginning of Martin's story is one of horror, but it evolves to be one of great triumph and growth. I loved his story of how he goes from someone who believes himself to have no future to someone who now has a bestselling book, his own business, and is expecting a child. This book was also a great exploration of people with non-verbal disabilities and how dehumanizing it can feel, so it really expanded my sympathy and made me more conscientious of people whose lives are like Martin's. The audiobook for this was fantastic and I would recommend it as long as you can handle sensitive subject matter about abuse.
February 17, 2015
I was so eager to read this book, the story sounded amazing. Unfortunately it was poorly written. I was actually bored at some of the rambling and skipped through pages and pages. The "characters" were real people, they should have been "developed" more. I didn't really feel a connection to any of them, except Martin.
I truly don't understand the 4 and 5 star ratings. I think they are based on the idea of the story, not the book itself.
I truly don't understand the 4 and 5 star ratings. I think they are based on the idea of the story, not the book itself.
November 27, 2013
This is the incredible story of a once-normal 12 year old boy who fell inexplicably sick and became a « living vegetable ». For six years, he’s “out”. Between the age of 18 and 20, his mind slowly but steadily resurges, while his body remains totally unresponsive to his will. To the world, including the people caring for him and even to his family, he still seems the lifeless body without a brain or any intelligence. While Martin himself does not remember being the once-normal 12 year old, he does feel that the way he is being treated and occupied (or not) is unsuitable: “No one seems to consider that even people who are thought to be intellectually impaired can change as they grow older”. Not to mention the people who consider him solely an object of their perversion as they abuse and mistreat him.
More by chance than anything else, one carer finally suspects that Martin’s movements could be more than random and actually considers them signs. Only because of one person’s close attention and conviction is Martin finally assessed and is enabled to start communicating with his environment. Over many years of training and patience and while showing a high degree of intelligence, will power and motivation, he manages to lead a life as normal and happy as he could possibly hope for ever since his awakening.
The most scary questions – apart from the obvious questions like “who makes sure that carers don’t abuse of their power over helpless individuals totally dependent on them” – for me remain these: “What would have happened if that one carer had not paid this much attention?” and “How many people are in institutions these days who are believed not to be taking part in this world just because we do not understand their signs of trying to show us that even in the most useless body, a totally healthy mind might be struggling to cope?”
An inspiring and breathtaking story, which made me cry and lose trust in this world as much as it made me smile and very happy eventually.
More by chance than anything else, one carer finally suspects that Martin’s movements could be more than random and actually considers them signs. Only because of one person’s close attention and conviction is Martin finally assessed and is enabled to start communicating with his environment. Over many years of training and patience and while showing a high degree of intelligence, will power and motivation, he manages to lead a life as normal and happy as he could possibly hope for ever since his awakening.
The most scary questions – apart from the obvious questions like “who makes sure that carers don’t abuse of their power over helpless individuals totally dependent on them” – for me remain these: “What would have happened if that one carer had not paid this much attention?” and “How many people are in institutions these days who are believed not to be taking part in this world just because we do not understand their signs of trying to show us that even in the most useless body, a totally healthy mind might be struggling to cope?”
An inspiring and breathtaking story, which made me cry and lose trust in this world as much as it made me smile and very happy eventually.
December 2, 2011
If you work with people with disabilities- specifically Profound and Multiple you really should read this book. I came in at the end of an interview on Radio 4 with the author, and noted down the title. I tend to buy books almost by chance- quick read of the blurb, or a writer I already know. I went out that week to buy this book. The story is remarkable. Imagine coming round and having lost part of your life and not being able to communicate. Not saying when you were uncomfortable, being spoken across, never being asked your opinion, not being able to make choices. Luckily, when Martin was in this state, his aromatherapist notices that some movements may not have been random and after some time he is assessed and appropriate communication devices are offered to him. I really need to read it again and I did speed read it and have since lent it out. Totally inspiring and reconfirmed my practice when teaching PMLD students. Highly recommended.
February 14, 2015
What a wonderful story that was so poorly written it was sad. This had the potential to be a great story, perhaps even an important story, but the crafting of this story made it seem uninteresting and mundane. The publisher should have hired someone to write this.
September 17, 2018
"Have you ever seen one of those movies where someone wakes up as a ghost but doesn't even know they've died? However much I tried to beg and plead, shout and scream, I couldn't make them notice me. I was invisible. The ghost boy."
Great book. When Martin was 12, he became sick. The doctors didn't know why. Within 18 months he was a 'vegetable' ... unable to speak, or move. A couple of years went by, and he began to slowly 'awake'. But no one noticed ... for ten long years ... until a carer named Virna van der Walt became convinced that Martin was more aware than anyone realised. She's the real heroine of this story. "She was the catalyst who changed everything. Had it not been for her, I would probably either be dead or forgotten in a care home somewhere." She convinced his parents to take him to the Center for Augmentative and Alternative Communication. Then the rest of his life began. Finally, he had a way out of the silent world. Things began to happen. A wife. A business. Joy. Peace. Love. Good stuff.
Just a warning for those who would appreciate one ... he was abused in the day care centres. Sexual abuse. Physical abuse. Emotional abuse. Sickening. He is very open, honest, and lays it all out there.
4 Stars = It touched my heart, and/or gave me much food for thought.
Great book. When Martin was 12, he became sick. The doctors didn't know why. Within 18 months he was a 'vegetable' ... unable to speak, or move. A couple of years went by, and he began to slowly 'awake'. But no one noticed ... for ten long years ... until a carer named Virna van der Walt became convinced that Martin was more aware than anyone realised. She's the real heroine of this story. "She was the catalyst who changed everything. Had it not been for her, I would probably either be dead or forgotten in a care home somewhere." She convinced his parents to take him to the Center for Augmentative and Alternative Communication. Then the rest of his life began. Finally, he had a way out of the silent world. Things began to happen. A wife. A business. Joy. Peace. Love. Good stuff.
Just a warning for those who would appreciate one ... he was abused in the day care centres. Sexual abuse. Physical abuse. Emotional abuse. Sickening. He is very open, honest, and lays it all out there.
4 Stars = It touched my heart, and/or gave me much food for thought.
February 21, 2015
This is a heartfelt and moving story. Don't let the three stars mislead you; this will pull on your heartstrings and make you appreciate just how much we take it for granted that we can verbalize our communications.
Nevertheless, the promo information misrepresented the nature of the story and made it seem like Martin was completely unable to communicate or let anyone know that he was conscious at all.
Second, the narrative framing is somewhat hard to follow. Events are presented out of sequence and often without dates, so it's tricky to follow a sense of progression as Martin recovers and regains some control of his life.
So, in the end, I'm torn: the story here is very heartfelt and sincere, but I think the prose needs some sprucing up and restructuring. I leave it to you to decide what that's worth in terms of a rating. For me, I think I'll split the difference here.
Nevertheless, the promo information misrepresented the nature of the story and made it seem like Martin was completely unable to communicate or let anyone know that he was conscious at all.
Second, the narrative framing is somewhat hard to follow. Events are presented out of sequence and often without dates, so it's tricky to follow a sense of progression as Martin recovers and regains some control of his life.
So, in the end, I'm torn: the story here is very heartfelt and sincere, but I think the prose needs some sprucing up and restructuring. I leave it to you to decide what that's worth in terms of a rating. For me, I think I'll split the difference here.
June 15, 2017
Die Bewertung gilt nicht der Geschichte, sondern drückt mein Lesevergnügen aus.
Autobiografien sind nämlich meiner Meinung nach oft nicht zu bewerten und unter diese Kategorie fällt auch die Geschichte von Martin Pistorius.
Die Geschichte war alles in allem sehr schockierend, ergreifend und interessant, auch wenn ich die ein oder andere Stelle als ein wenig langwierig empfunden habe.
Autobiografien sind nämlich meiner Meinung nach oft nicht zu bewerten und unter diese Kategorie fällt auch die Geschichte von Martin Pistorius.
Die Geschichte war alles in allem sehr schockierend, ergreifend und interessant, auch wenn ich die ein oder andere Stelle als ein wenig langwierig empfunden habe.
March 20, 2015
I'm not going to rehash the plot, because it's already been done, so I'll get right to my review of the book. I give Martin Pistorious a lot of credit for not only surviving a devastating illness, but thriving despite it. His story is remarkable and inspiring. However, the editing and sequencing of the events in the book caused me knock a few stars off of my rating. The chapters skipped from one year to another in no sequential order, and no dates were given so I couldn't begin each section of the book knowing the time-frame. While I understand that many authors of biographical novels take this approach and provide flashbacks during the course of the book, Pistorious's method was ineffective and diaorganized.
If readers can look past the structure of the book, it is an enjoyable and inspiring story about a person who survived insurmountable odds.
If readers can look past the structure of the book, it is an enjoyable and inspiring story about a person who survived insurmountable odds.
July 10, 2015
I read this after hearing about Pistorius's story on "Invisibilia," and I'm torn on reviewing the book. On the one hand, the story itself is unbelievably gripping and fascinating. I also do believe, strongly, that it's crucial that he got to tell his own story, after so many years of silence. That said, I felt like I would rather have read a really good third-person nonfiction account of the whole thing. Like a Laura Hillenbrand book, or something along the lines of The Immortal Life of Henrietta Lacks. I just felt like there were so many fascinating stories and perspectives that weren't explored here, and I think sometimes you aren't the best person to tell your own story, even if it's important that you do so and even though it is YOUR story. Elegant, literary writing can be truer than first-person exposition because it recreates emotions rather than facts. Still, Pistorius is a competent if not an artistic writer, and the book does get much stronger after an inconsistent beginning (he doesn't seem to know how to handle the back story of his illness that he can't remember himself - if I hadn't heard the podcast first I think I'd actually be incredibly confused about what happened) before getting a bit maudlin at the very end. Definitely worth listening to the "Invisibilia" episode at the very least and then reading this if Martin's story piques your interest, as it did mine.
February 20, 2013
Sometimes you find those remarkable life stories that are almost too awe inspiring to be true. This is the case with this book. Martin has to overcome extraordinary odds in order to be able to write this book, and faces deep personal issues outside of his illness before he can accept who he is and the love of an equally extraordinary woman. I loved this personal account, and I loved the way this book was written between times because it made the reality of his illness always at the forefront. A five star work, you couldn't want more from an autobiography than this stunning honesty.
July 3, 2022
A book about finding life again. When Martin regains consciousness he is in a paralyzed body with no means to communicate. It takes many years before he receives a test that enables him to show that he has a vocabulary and is still “in there”. The book starts with this and weaves in and out of progress and the years of having no means to communicate. Brilliant, brave - and also horrifying.
January 15, 2015
Great story for everyone to learn more about augmentative and alternative communication. A must read for speech therapists and special educators.
February 5, 2015
The ONE book I'm going to recommend to EVERYONE. Period.
I can't describe how honest and dear this story is, how I laughed through tears, cheered quietly, mourned, happily sighed, and came to an unlikely empathy with Martin....in the two hours (3-5 a.m.) it took me to devour it.
Read it.
Buy it and share it. (It's too good to check out of the library, because you'll want it on your shelves. Really!)
But I hope all libraries find this book and add it to their collection!
I can't describe how honest and dear this story is, how I laughed through tears, cheered quietly, mourned, happily sighed, and came to an unlikely empathy with Martin....in the two hours (3-5 a.m.) it took me to devour it.
Read it.
Buy it and share it. (It's too good to check out of the library, because you'll want it on your shelves. Really!)
But I hope all libraries find this book and add it to their collection!
September 28, 2015
It's a good story, but not a good book. There are a lot of things that I felt were problematic, and maybe not handled correctly. It was sometimes physically painful for me to read this. I will say this book brings many important issues to light, many of which most people might not even think about, such as mistreatment of people in care homes.
January 26, 2021
Мартин Писториус рассказывает свою историю о том, как он однажды стал мальчиком-призраком, запертым внутри собственного тела, а потом медленно и трудно пытался вернуться к нормальной жизни.
До 12 лет он был обычным здоровым и веселым ребенком, который жил в Южной Африке со своими родителями, братом и сестрой. Однажды он пришел домой из школы, сказал маме, что у него болит горло, и с того дня неизвестная болезнь начала загонять его в темноту и неподвижность. Спустя год он был в коме, но в 16 лет сознание начало постепенно возвращаться, а к 19 годам он полностью осознавал происходящее, только никак не мог дать понять об этом окружающим. Всё это время о нем заботятся родители, причем отец наотрез отказался отдавать Мартина в специальное учреждение, хотя мать на этом настаивала. И только когда ему было 25, одна из сиделок заметила его осмысленный взгляд и настояла на тестировании, с которого и начался долгий и сложный путь Мартина к возможности общаться с окружающим миром.
Отличная книга. Такую невероятно тяжелую историю Мартин рассказал очень просто. Взгляд изнутри человека, которого и за человека уже никто не считает. В книге есть жутчайшая глава о том, как в некоторых заведениях, куда Мартина отдавали на время, когда его родители были вынуждены куда-то уехать, относятся к таким больным, и что именно персонал позволяет себе делать, зная, что пациенты же "все равно ничего не чувствуют и никому не смогут рассказать" (большой, нет - огромнейший привет Джуду из "Маленькой жизни"). И я очень-очень рада, что у Мартина всё в итоге сложилось хорошо. Можете погуглить и проверить))
До 12 лет он был обычным здоровым и веселым ребенком, который жил в Южной Африке со своими родителями, братом и сестрой. Однажды он пришел домой из школы, сказал маме, что у него болит горло, и с того дня неизвестная болезнь начала загонять его в темноту и неподвижность. Спустя год он был в коме, но в 16 лет сознание начало постепенно возвращаться, а к 19 годам он полностью осознавал происходящее, только никак не мог дать понять об этом окружающим. Всё это время о нем заботятся родители, причем отец наотрез отказался отдавать Мартина в специальное учреждение, хотя мать на этом настаивала. И только когда ему было 25, одна из сиделок заметила его осмысленный взгляд и настояла на тестировании, с которого и начался долгий и сложный путь Мартина к возможности общаться с окружающим миром.
Отличная книга. Такую невероятно тяжелую историю Мартин рассказал очень просто. Взгляд изнутри человека, которого и за человека уже никто не считает. В книге есть жутчайшая глава о том, как в некоторых заведениях, куда Мартина отдавали на время, когда его родители были вынуждены куда-то уехать, относятся к таким больным, и что именно персонал позволяет себе делать, зная, что пациенты же "все равно ничего не чувствуют и никому не смогут рассказать" (большой, нет - огромнейший привет Джуду из "Маленькой жизни"). И я очень-очень рада, что у Мартина всё в итоге сложилось хорошо. Можете погуглить и проверить))
October 3, 2011
"In January 1988, aged twelve, Martin Pistorius 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 that an unknown degenerative disease had left him with the mind of a baby and he probably had less than two years to live. Martin went on to be cared for at centres for severely disabled children, a shell of the bright, vivacious boy he had once been. What no-one knew is that while Martin's body remained unresponsive his mind slowly woke up, yet he could tell no-one; he was a prisoner inside a broken body.
Then, in 1998, when Martin was twenty-three years old, an aromatherapy masseuse began treating him and sensed some part of him was alert. Experts were dismissive, but his parents persevered and soon realised their son was as intelligent as he'd always been. With no memory of the time before his illness, Martin was a man-child reborn in a world he didn't know. He was still in a wheelchair and unable to speak, but he was brilliantly adept at computer technology. Since then, and against all odds, he has fallen in love, married and set up a design business which he runs from his home in Essex."
What a wonderful read! I thoroughly enjoyed this book and Martin's searingly honest recount of his life trapped within his body. Martin's enthusiasm is infectious and you cannot help but be inspired by his story and attitude.
Then, in 1998, when Martin was twenty-three years old, an aromatherapy masseuse began treating him and sensed some part of him was alert. Experts were dismissive, but his parents persevered and soon realised their son was as intelligent as he'd always been. With no memory of the time before his illness, Martin was a man-child reborn in a world he didn't know. He was still in a wheelchair and unable to speak, but he was brilliantly adept at computer technology. Since then, and against all odds, he has fallen in love, married and set up a design business which he runs from his home in Essex."
What a wonderful read! I thoroughly enjoyed this book and Martin's searingly honest recount of his life trapped within his body. Martin's enthusiasm is infectious and you cannot help but be inspired by his story and attitude.
April 10, 2015
An overwhelming, heart-breaking true story of Martin Pistorius .The kid who was diagnosed with an unknown neurological disorder that kept him trapped in his own lifeless body; a ghost boy having a soul with a useless body.
I don’t want to spoil the miraculous story of Martin. But I should say, as Martin wanted from writing his own life experience, that everyone’s life is a white piece of paper that’s colored upon which colors he wants whatever his circumstances are.
As the Bible says:” There are three things that will endure—faith, hope, and love. And the greatest of these is love.”
Whatever the life you’re living, don’t abhor it because God has given you, aside from a deficiency you may suffer from, a strength that nobody shares with you. You only have to fathom yourself and decipher the hidden cipher, in order to be what you are meant to be.
Whatever the adversity is, you’ve got to know that there’s a bigger God whom you have to have faith in Him, and show him gratitude for what he has given to you.
Martin, the man who tells us that impossible is nothing when you’ve got the fortitude, the will, and love for what you aim to be, shares with us his unbelievable, sore story yet touching and moving.
A MUST READ.
I don’t want to spoil the miraculous story of Martin. But I should say, as Martin wanted from writing his own life experience, that everyone’s life is a white piece of paper that’s colored upon which colors he wants whatever his circumstances are.
As the Bible says:” There are three things that will endure—faith, hope, and love. And the greatest of these is love.”
Whatever the life you’re living, don’t abhor it because God has given you, aside from a deficiency you may suffer from, a strength that nobody shares with you. You only have to fathom yourself and decipher the hidden cipher, in order to be what you are meant to be.
Whatever the adversity is, you’ve got to know that there’s a bigger God whom you have to have faith in Him, and show him gratitude for what he has given to you.
Martin, the man who tells us that impossible is nothing when you’ve got the fortitude, the will, and love for what you aim to be, shares with us his unbelievable, sore story yet touching and moving.
A MUST READ.
April 30, 2016
Tämä on uskomaton kertomus pojasta, jonka kehitys alkoi hidastua ja häneen ei saanut minkäänlaista kontaktia. Hän oli päivisin hoitokodeissa ns. säilössä, mutta onneksi sinne tuli toimintaterapeutiksi henkilö, joka huomasi, että martin ymmärtää, mutta ei pysty kommunikoimaan. Nykyisin Martin on naimisissa ja kulkee luennoimassa vammastaan puhesyntetisaattorin avulla.
January 16, 2015
If you're not moved by this book you're made of stone. I think it's very brave of him to be so open & honest about his life in such a genuine & humble manner. I wish him a life full of everything his heart desires.
October 9, 2020
Una historia real que podría haber sido plasmada de un modo más impactante o memorable. No está mal, pero podría ser mejor. El libro narra las vivencias de Martin Pistorius tras “despertar” del limbo en el que estuvo perdido tras caer enfermo cuando solo tenía 12 años. Parece ser que no hay un diagnóstico que explique totalmente lo que le ocurrió, solo se sabe que empezó a sentirse mal y que acabó quedándose en un estado prácticamente vegetal: perdió el habla, la movilidad e incluso la capacidad de pensar. Ni siquiera él recuerda qué pasó durante algunos años, solo sabe que sobre los 16 años su consciencia despertó y se dio cuenta de que estaba prisionero en su propio cuerpo. Era incapaz de comunicarse y todos creían que ni se enteraba de lo que sucedía a su alrededor, pero Martin sí que podía escuchar y sentir, el problema es que no encontraba una manera de avisar a los demás.
En este libro que Martin creó junto con la escritora Megan Lloyd Davies, él quiere que sepamos lo que sintió y los retos que tuvo que afrontar cuando por fin alguien se dio cuenta de que no estaba tan incapacitado como parecía.
Esta obra cuenta en total con 252 páginas, así que es relativamente breve, pero tengo que reconocer que la primera mitad se me hizo eterna. Cada página se me hacía más cuesta arriba que la anterior y hasta me planteaba abandonar la lectura. No se veía un orden cronológico claro en lo que se contaba, habían varias divagaciones sobre las fantasías de Martin y se mostraba una recuperación que no estaba bien explicada. Esto último fue lo peor, pues Martin pasó de no poder moverse a realizar acciones que eran imposibles sin un buen dominio del cuerpo. También se dice que no sabía leer y que, sin embargo, en poco tiempo, era capaz de usar con maestría programas informáticos. Yo no digo que no pudiera hacer estas cosas, pero era como si hubieran lagunas temporales en lo que se narraba. Estoy segura de que Martin hizo muchísima rehabilitación, pero no se ahonda en eso, así que resulta chocante que en aparentemente poco tiempo se diga que no es capaz de comer solo pero que sí que se le da muy bien hacer fotocopias o archivar. A mí que alguien me explique cómo haces fotocopias o archivas sin poder mover los brazos. Y ya aclaro que no es que volviera totalmente a la normalidad, Martin simplemente logró conseguir comunicarse y realizar pequeños gestos, pero continuó en una silla de ruedas y sin poder hablar. La cuestión es que, incluso así, es innegable que logró superarse a sí mismo y dar una lección de lo que es la fuerza de voluntad.
Hay detalles que me hicieron plantearme si el problema se debía a la traducción y por eso las actividades que supuestamente Martin realizaba no encajaban con sus capacidades físicas y mentales. Considero que o era eso o era que Martin y la escritora no supieron explicarse. A esto hay que sumarle que el caos narrativo no ayudaba, yo no veía sentimiento en lo que iban contando y notaba que se mezclaban muchos asuntos. Seguramente me voy a explicar fatal, pero lo que me pasaba era lo siguiente: si pensaba en lo que Martin vivió, sufría, pero sufría por el hecho de analizar lo que sería estar así. El texto que estaba leyendo ni me rompía emocionalmente ni me angustiaba. La única parte más o menos emotiva era la relacionada con su familia, ya que ahí se notaba que a Martin le dolieron determinadas actitudes.
Cuando ya había perdido la esperanza de encontrar algo positivo en la lectura, el libro remontó. La segunda mitad sí que estaba muy bien estructurada y se veía de forma ordenada lo que Martin vivió durante una etapa en la que comenzó a relacionarse más. Ahí nos comenta de manera cercana qué era para él depender de otras personas y que le vieran como un igual y no como un discapacitado, la complejidad de realizar gestos simples y lo abrumado que se sintió al tener que empezar a tomar decisiones. Asimismo, también nos relata cómo se propasaron con él en centros en los que estuvo y las humillaciones que sufrió. En serio, esa parte es impactante, hay personas que son la maldad personificada y que deberían ser castigadas.
Todo acaba en un momento especial para Martin y lo vi muy tierno. A pesar de que esta lectura no me ha fascinado y que le he visto varios puntos débiles, la remontada final me hizo desear que Martin escribiera otra obra contando cómo siguió su vida.
Ni he odiado ni he amado el libro, pero creo que merece que le echéis un vistazo si tenéis ocasión. En algunos aspectos, realmente logra dar que pensar.
En este libro que Martin creó junto con la escritora Megan Lloyd Davies, él quiere que sepamos lo que sintió y los retos que tuvo que afrontar cuando por fin alguien se dio cuenta de que no estaba tan incapacitado como parecía.
Esta obra cuenta en total con 252 páginas, así que es relativamente breve, pero tengo que reconocer que la primera mitad se me hizo eterna. Cada página se me hacía más cuesta arriba que la anterior y hasta me planteaba abandonar la lectura. No se veía un orden cronológico claro en lo que se contaba, habían varias divagaciones sobre las fantasías de Martin y se mostraba una recuperación que no estaba bien explicada. Esto último fue lo peor, pues Martin pasó de no poder moverse a realizar acciones que eran imposibles sin un buen dominio del cuerpo. También se dice que no sabía leer y que, sin embargo, en poco tiempo, era capaz de usar con maestría programas informáticos. Yo no digo que no pudiera hacer estas cosas, pero era como si hubieran lagunas temporales en lo que se narraba. Estoy segura de que Martin hizo muchísima rehabilitación, pero no se ahonda en eso, así que resulta chocante que en aparentemente poco tiempo se diga que no es capaz de comer solo pero que sí que se le da muy bien hacer fotocopias o archivar. A mí que alguien me explique cómo haces fotocopias o archivas sin poder mover los brazos. Y ya aclaro que no es que volviera totalmente a la normalidad, Martin simplemente logró conseguir comunicarse y realizar pequeños gestos, pero continuó en una silla de ruedas y sin poder hablar. La cuestión es que, incluso así, es innegable que logró superarse a sí mismo y dar una lección de lo que es la fuerza de voluntad.
Hay detalles que me hicieron plantearme si el problema se debía a la traducción y por eso las actividades que supuestamente Martin realizaba no encajaban con sus capacidades físicas y mentales. Considero que o era eso o era que Martin y la escritora no supieron explicarse. A esto hay que sumarle que el caos narrativo no ayudaba, yo no veía sentimiento en lo que iban contando y notaba que se mezclaban muchos asuntos. Seguramente me voy a explicar fatal, pero lo que me pasaba era lo siguiente: si pensaba en lo que Martin vivió, sufría, pero sufría por el hecho de analizar lo que sería estar así. El texto que estaba leyendo ni me rompía emocionalmente ni me angustiaba. La única parte más o menos emotiva era la relacionada con su familia, ya que ahí se notaba que a Martin le dolieron determinadas actitudes.
Cuando ya había perdido la esperanza de encontrar algo positivo en la lectura, el libro remontó. La segunda mitad sí que estaba muy bien estructurada y se veía de forma ordenada lo que Martin vivió durante una etapa en la que comenzó a relacionarse más. Ahí nos comenta de manera cercana qué era para él depender de otras personas y que le vieran como un igual y no como un discapacitado, la complejidad de realizar gestos simples y lo abrumado que se sintió al tener que empezar a tomar decisiones. Asimismo, también nos relata cómo se propasaron con él en centros en los que estuvo y las humillaciones que sufrió. En serio, esa parte es impactante, hay personas que son la maldad personificada y que deberían ser castigadas.
Todo acaba en un momento especial para Martin y lo vi muy tierno. A pesar de que esta lectura no me ha fascinado y que le he visto varios puntos débiles, la remontada final me hizo desear que Martin escribiera otra obra contando cómo siguió su vida.
Ni he odiado ni he amado el libro, pero creo que merece que le echéis un vistazo si tenéis ocasión. En algunos aspectos, realmente logra dar que pensar.
January 6, 2017
This book is so bitter sweet. I honestly still feel like crying over this story. This man was trapped in his body for 12 years and knew everything that was said and done to him. Abused in so many ways including raped by caretakers. My heart breaks for him.
This true story is terrifying, and encouraging. This story should be an example to all when you think of leaving someone you love in the hands of other people, knowing your loved one can't communicate their pain, emotions, or the horrible things someone may be doing to them.
I can't believe how understanding and loving this man continues to be after all he went through, even hearing his own mother wish him dead. I'm so glad he found love and he continues to have love in his heart.
This true story is terrifying, and encouraging. This story should be an example to all when you think of leaving someone you love in the hands of other people, knowing your loved one can't communicate their pain, emotions, or the horrible things someone may be doing to them.
I can't believe how understanding and loving this man continues to be after all he went through, even hearing his own mother wish him dead. I'm so glad he found love and he continues to have love in his heart.
June 21, 2017
Ugh, how does one rate an autobiography of someone who went through SO MUCH and triumphed? I'm going to go with 4.5 stars, rounded down to 4, because I didn't love it enough to make it a keeper and re-read it.
It IS a worthy book to read though. It's the story of a man who was basically "locked in" to his body after a mysterious illness made him comatose, then in an awakened state, but where he had no control over his body or speech. For years.
I give this man credit, he did NOT go insane or will himself dead, though he did come close. He went through some horrific, but not horribly graphically described, mal-treatment and abuse at the hands of those who were supposed to be helping him, but from helping hands he really did receive help. One of those staff members saw the spark of awareness in him and helped him to bring it out so others would know he wasn't just a body with the mind of the eight year old he was when he got sick.
The only thing I wish was gone into was if justice was ever done to those who hurt and abused him and undoubtably others. Not necessarily legal justice, as what happened to him couldn't be proven so late in time, but to at least prevent them from hurting others. And for legal justice if they could be proven to be currently hurting others in their care. I didn't need much, just something saying that he and his family notified the authorities and that the authorities were looking into the allegations. Though I guess if the case/s were ongoing, it probably couldn't be mentioned in the book.
The story ended on such a happy, gentle, positive note. Seriously, if you think you have problems, read this book. It'll both cure you and make you see that if he can work and get to where he is today, then we can too, especially if we have less holding us back.
This man and his lady are an inspiration to us all. And it is an important lesson for all. Just because a person can't speak or control the movements of their body doesn't mean they are dumb or aren't there. They can hear, think and feel. We may never know to what extent, but NEVER treat ANYone, no matter what they look like or their disability, as less than yourself. So important for some people to learn.
Me included in that I tend to not know how to deal with those not like myself. The simple answer is, "like you want to be treated, dumbie!". I guess I'm self conscious and don't want to come across as an idiot, so I don't say anything or make eye contact (to be fair, I'm not big on eye contact with my own friends and family, so I'm not trying to be rude, but I have to make an extra effort to do so. Yay shy.) and I come across as rude and superior when I'm just embarrassed at my own inadequacy.
So this book has gone quite a way to waking me up that it's not all about me. Get over myself and just be ME with another person. Again, toss shyness in the mix and it can be a challenge, but really, if Martin can do what he has done, I think I can get over my self-doubt and be a decent human being to others.
I highly recommend this book to everyone, YA and up I would say. Nothing too horrible in it, but he does go into his abuse and it may be a bit much for those Middle Grade and below. Trigger warning, there is sexual abuse mentioned. Not graphic, but it is there.
It IS a worthy book to read though. It's the story of a man who was basically "locked in" to his body after a mysterious illness made him comatose, then in an awakened state, but where he had no control over his body or speech. For years.
I give this man credit, he did NOT go insane or will himself dead, though he did come close. He went through some horrific, but not horribly graphically described, mal-treatment and abuse at the hands of those who were supposed to be helping him, but from helping hands he really did receive help. One of those staff members saw the spark of awareness in him and helped him to bring it out so others would know he wasn't just a body with the mind of the eight year old he was when he got sick.
The only thing I wish was gone into was if justice was ever done to those who hurt and abused him and undoubtably others. Not necessarily legal justice, as what happened to him couldn't be proven so late in time, but to at least prevent them from hurting others. And for legal justice if they could be proven to be currently hurting others in their care. I didn't need much, just something saying that he and his family notified the authorities and that the authorities were looking into the allegations. Though I guess if the case/s were ongoing, it probably couldn't be mentioned in the book.
The story ended on such a happy, gentle, positive note. Seriously, if you think you have problems, read this book. It'll both cure you and make you see that if he can work and get to where he is today, then we can too, especially if we have less holding us back.
This man and his lady are an inspiration to us all. And it is an important lesson for all. Just because a person can't speak or control the movements of their body doesn't mean they are dumb or aren't there. They can hear, think and feel. We may never know to what extent, but NEVER treat ANYone, no matter what they look like or their disability, as less than yourself. So important for some people to learn.
Me included in that I tend to not know how to deal with those not like myself. The simple answer is, "like you want to be treated, dumbie!". I guess I'm self conscious and don't want to come across as an idiot, so I don't say anything or make eye contact (to be fair, I'm not big on eye contact with my own friends and family, so I'm not trying to be rude, but I have to make an extra effort to do so. Yay shy.) and I come across as rude and superior when I'm just embarrassed at my own inadequacy.
So this book has gone quite a way to waking me up that it's not all about me. Get over myself and just be ME with another person. Again, toss shyness in the mix and it can be a challenge, but really, if Martin can do what he has done, I think I can get over my self-doubt and be a decent human being to others.
I highly recommend this book to everyone, YA and up I would say. Nothing too horrible in it, but he does go into his abuse and it may be a bit much for those Middle Grade and below. Trigger warning, there is sexual abuse mentioned. Not graphic, but it is there.
October 22, 2014
I came across Martin Pistorius' name by chance while reading a technical item on PC accessibility tools, years ago. I was so intrigued by the glimpse into his experience that I wrote to him to get to know more about his amazing story. We corresponded several times and became quite friendly. When Martin told me he was having his biography published, I impatiently waited for about fourteen months to read it.
This is one of those astounding biographies that reveals the hidden but exceptional people who cope with unimaginable odds. I so intensely wanted to understand the mechanisms that are used for abnormal coping by people who endure and survive the unthinkable.
My reason for rating this book at four stars instead of five is that I still yearned for more information after reading this book. I understand the authors' approach in avoiding what they judge would be unnecessarily detailed minutiae of a confined intellect - but I'm one of those insatiable people who need to know as much as I can soak up about this awe-inspiring experience and Martin's ongoing recovery.
As an aside, when I ordered the book, the distributor got their wires crossed and sent me a novel with the same title (author Iain Lawrence) about a young albino boy who literally runs away with a travelling circus, from an unpleasant home-life . My review of that will appear on GoodReads as well. (I see that there is yet a third Ghost Boy title, this one by Felicity Pulman - aimed at much younger readers.)
This is one of those astounding biographies that reveals the hidden but exceptional people who cope with unimaginable odds. I so intensely wanted to understand the mechanisms that are used for abnormal coping by people who endure and survive the unthinkable.
My reason for rating this book at four stars instead of five is that I still yearned for more information after reading this book. I understand the authors' approach in avoiding what they judge would be unnecessarily detailed minutiae of a confined intellect - but I'm one of those insatiable people who need to know as much as I can soak up about this awe-inspiring experience and Martin's ongoing recovery.
As an aside, when I ordered the book, the distributor got their wires crossed and sent me a novel with the same title (author Iain Lawrence) about a young albino boy who literally runs away with a travelling circus, from an unpleasant home-life . My review of that will appear on GoodReads as well. (I see that there is yet a third Ghost Boy title, this one by Felicity Pulman - aimed at much younger readers.)
March 3, 2014
Ghost Boy is written as a journey, which the reader takes along with the writer. The journey gives a vivid picture of what one individual with physical limitations goes through and how they meet each new experience along the way. This book is written in the voice of the author/main character, Martin pistorius.
I cannot say enough good things about Ghost Boy. Late at night I struggled to put the book down. I felt propelled to turn each and every page. Martin held my complete attention.
Ghost Boy awakened my emotions, causing me to cry with sadness and with joy. What Martin went through, even though it is displayed in detail, I could in no way imagine what it must have been like. Not being able to say if something is hot or cold, to scream out in pain, to report to another experienced torment.
Ghost Boy leads the reader to believe the main character, Martin, has a relationship with God, but it does not go into detail in regards to that relationship as a focal point.
I highly recommend Ghost Boy to all who are of adult age. There are some instances within the writing which may not be appropriate for younger readers.
BookLook Bloggers has provided me with a complimentary copy/advanced reading copy of this book in exchange for an honest review.
I cannot say enough good things about Ghost Boy. Late at night I struggled to put the book down. I felt propelled to turn each and every page. Martin held my complete attention.
Ghost Boy awakened my emotions, causing me to cry with sadness and with joy. What Martin went through, even though it is displayed in detail, I could in no way imagine what it must have been like. Not being able to say if something is hot or cold, to scream out in pain, to report to another experienced torment.
Ghost Boy leads the reader to believe the main character, Martin, has a relationship with God, but it does not go into detail in regards to that relationship as a focal point.
I highly recommend Ghost Boy to all who are of adult age. There are some instances within the writing which may not be appropriate for younger readers.
BookLook Bloggers has provided me with a complimentary copy/advanced reading copy of this book in exchange for an honest review.
May 29, 2015
A truly inspirational story, I loved listening to Martin Pistorius's memoir. Martin was a healthy twelve year old boy when a mysterious illness left him in a coma-like state. This is the story of how, with the love and devotion of his parents and one very important caregiver, he "came back to life" years later.
While parts of the story are difficult to listen to, the whole of it is uplifting. It broke my heart thinking about his parents and their battle to get help for him and also cope with the caregiving he needed.
This is the first audiobook I've listened to narrated by George Guidall and I loved his voice, he's a wonderful reader. I missed the sound of his voice when the book was over. I also missed hearing about what was going on in Martin Pistorius's life. He's an amazing person, I hope he lives happily ever after.
I was a little disappointed that there was no mention of what the doctors think caused his illness or how common or uncommon diseases like this are.
I'd love to read an updated memoir on what he's done since the end of this book.
While parts of the story are difficult to listen to, the whole of it is uplifting. It broke my heart thinking about his parents and their battle to get help for him and also cope with the caregiving he needed.
This is the first audiobook I've listened to narrated by George Guidall and I loved his voice, he's a wonderful reader. I missed the sound of his voice when the book was over. I also missed hearing about what was going on in Martin Pistorius's life. He's an amazing person, I hope he lives happily ever after.
I was a little disappointed that there was no mention of what the doctors think caused his illness or how common or uncommon diseases like this are.
I'd love to read an updated memoir on what he's done since the end of this book.
January 20, 2015
Wow.
Martin's story is intense, from beginning to end. This is definitely a page-turner. I could barely put it down. Still, there are some parts that are hard to read. For example, while reading about some of the abhorrent things he experienced in a care home, I literally felt bile rise in my throat as I started gagging. He doesn't hold back.
I couldn't help but be continuously intrigued and inspired by his story. His miraculous recovery and journey "back to life" as he slowly gained his independence are amazing. Everything he accomplishes, from teaching himself to read to marrying the woman of his dreams, is just mind blowing.
This book is also important on another level: How we treat people with disabilities. As individuals and as a culture, we need to look straight into the mirror that is Martin's book and check ourselves. What needs to change? And how are we going to do it?
This is a fantastic read and I recommend it to anyone!
Martin's story is intense, from beginning to end. This is definitely a page-turner. I could barely put it down. Still, there are some parts that are hard to read. For example, while reading about some of the abhorrent things he experienced in a care home, I literally felt bile rise in my throat as I started gagging. He doesn't hold back.
I couldn't help but be continuously intrigued and inspired by his story. His miraculous recovery and journey "back to life" as he slowly gained his independence are amazing. Everything he accomplishes, from teaching himself to read to marrying the woman of his dreams, is just mind blowing.
This book is also important on another level: How we treat people with disabilities. As individuals and as a culture, we need to look straight into the mirror that is Martin's book and check ourselves. What needs to change? And how are we going to do it?
This is a fantastic read and I recommend it to anyone!
October 27, 2020
I think locked-in syndrome is literally my worst nightmare! The author of this book tells his harrowing personal story, including the horrific physical and sexual abuse he experienced at the hands of carers who thought he would Never be able to tell anyone what they had done to him. But this is only one small part of his story; much more of it involves learning to use assistive communication devices and personal growth. After reading this book I am more determined than ever to speak to everyone, even people I think may not understand me, with kindness and respect. It's a small active decency that might mean a very great deal to someone who feels emotionally lost and abandoned amid the chaos and hurry of humanity.
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