Jan 23, 2014

book review // ghost boy


Ghost Boy: The Miraculous Escape of a Misdiagnosed Boy Trapped Inside His Own Body
by Martin Pistorius

Ghost Boy is an autobiography of the extraordinary life of Martin Pistorius,  a misdiagnosed young man trapped in his own body. It is a tale of courage, hope, and freedom, yet does not shy away from the despair and passivity that riddled his younger years.

On a fateful day in South Africa in 1988, twelve-year old Martin had a simple sore throat that quickly degenerated into a mysterious neurologic disorder causing Martin to be a mute quadriplegic. For several years, he was a hollow shell, unknowing and unresponsive. He was thought to be in a vegetative state that would carry on until death.

And then he woke up.

His mind became clearer yet he was trapped in a body that would not listen to his commands. He was spastic when he wanted to be still and still when he wanted to move. He understood all that was going on him, at a much deeper level than anyone dared hope, yet no one knew that his mind, emotions, desires, and fears were intact for ten excruciating years.  He was just as emotionally wrought over history-altering events [such as Princess Diana's death in 1997] that others where.

He was victim to abusive caretakers and could sense when people spoke to him as if they spoke to a wall. He was dealt with roughly, being thrown into chairs and left undressed in the cold room because careless and heartless workers assumed he was worthless. "Do they really think that a limited intellect means a child can't feel viciousness in a person's touch or hear anger in the tone of their voice?" [p.43]

He was aware just as you and I would be of our surroundings, yet he was powerless to communicate any of this because everyone around him had placed him in a box. Mute. Vegetable. Unresponsive. These labels imprisoned him because no one took time to see the life in his eyes; they merely saw the box they had placed him in [p.17].  He fell into bouts of anxiety and depression as he wondered if he would ever be loved or understood. His life was passive and torturing monotony, devoid of hope. A caged bird with no song to sing.

He was a ghost boy.

And then, miraculously, a caretaker named Virna started realizing that he would make facial gestures in response to her compassionate dialogue. She was the first person to talk to him rather than about him, "making me feel like something other than the repulsive creature I know I am" [p.53]. She believed in him and urged others to believe as well. Soon after, he underwent testing to evaluate his ability to use switches and computer programs to communicate. More than one year later, he finally started using personalized communication devices to slowly gain the ability to communicate and life independent of others, a far cry from his early years as a completely depended teenager due to his medical condition.

Over the next years, Martin grew in his understanding of the communication software, and was eventually able to hold conversations with people through voice-activated software, emailing, and alphabet boards.  Simple requests or statements such as "I'm hungry" became his "personal Mount Everests" [p.55]. He eventually started volunteering at the communication center he was first evaluated at and has since had several jobs, now owning his own company. His newfound zest for life inspired many people, whether in the same circumstances as him or typically-developed "normal" adults. He even gained the attention of a beautiful woman who would later become his wife, moving from his home in South Africa to England.

Ghost Boy is a inspiring story that personally hit me because I worked with medically fragile children for four years, many of whom where deemed never to speak or walk in their lifetime. I witnessed the joy of communicating through switches and computers. The relief of a teenager when I finally guessed or interpreted their request will forever stick with me. I could not imagine the frustration of wanting something as simple as readjusting a blanket or an itch to be scratched and feeling utterly powerless to having that need met.

Martin is painstakingly honest about the long, hard road that took him from a voiceless caged bird to a songbird with purpose and hope. He explained the "Three Furies" that riddled his early life: Frustration, Fear, Loneliness and how he overcame them as he later became able to communicate. He explains that it was not only the inability to communicate that plagued him, but his greatest challenge was not being listed to [p.149]. He goes into detail about the hurt he felt that no one wondered about the anxiety he felt when he would be left for respite care at a care home on a farm where he was abused.
 "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 they would see what was written on my face? Fear . . . I had feelings. I wasn't just a ghost boy. But no one looked" [p. 153].
Martin also explained that though no one else understood him in his younger years, he talked to God.
"He was real to me, a presence inside and around me that calmed me and reassured me . . . I spoke to God as I tried to make sense of what happened to me and asked Him to protect me from harm .  . . I talked to him endlessly because I knew we shared something important. I didn't have proof that He existed but I believed in Him anyway because I knew He was real. God did the same for me. Unlike people, He didn't need proof that I existed -- He knew I did" [p.161].
His reflection over the many years of working hard to be able to communicate through relationships, both personal and career-related, is mature and introspective:
"As time has passed, my confidence has grown, and I've realized that I'm trusted by my colleagues . . . life is about checks and balances, small victories and minor failures. I'd spent years longing for things to happen to me, for events to take my life somewhere unexpected. Although I found it disorienting when it started to happen each day, week or month, I learned that this is what life is like -- unpredictable, uncontrollable, and exciting" [p. 214]. 

Even if you do not have someone in your life with identical circumstances as Martin Pistorius, there are a lot of lessons to learn from his life. For me, the greatest of these was that every person has worth and a right to life. I cannot deem a life any less significant than it truly is because God has placed His worth over every life. We are made in His image, even if the disease and depravity of this world mark us with deformities in our physical, mental, or emotional state. Still, all have worth and all are priceless in His eyes. And that is what He calls us to as well. He calls us to not look down to those who are different than us or who the world will call mute or a lost cause. Instead, we are to look at each person as having value, potential, and a voice that is yearning to be heard. Will we listen?

Want more?
Here is an article about Martin in UK's DailyOnline
A video interview with Martin and his wife
Buy a copy of the book from Amazon

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Disclosure: I received a copy of this book for free through BookSneeze in exchange for this review. All opinions expressed are my own

2 comments:

  1. Wow!! I need to go look him up.
    "Unlike people, He didn't need proof that I existed -- He knew I did"
    That line just gave me chills. So so true!
    Thanks for sharing!

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  2. Sounds so scary! Definitely an interesting read.

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Elle Alice