Martin Pistorius

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. Ghost Boy is an incredible, deeply moving story of recovery and the power of love. Through Martin's story we can know what it is like to be here and yet not here - unable to communicate yet feeling and understanding everything. Martin's emergence from his darkness enables us to celebrate the human spirit and is a wake-up call to cherish our own lives.

Ghost Boy

Highlighting this because a very, very condensed summary of this passage is what made me want to read this book. (Non-fiction in case it isn't clear)

Jonnie

But there was one fight I'll never forget because after Dad had stormed out, Mum was left crying on the floor. She was bringing 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."

The rest of the world felt so far away when she said those words, and I stared blankly as she got up and left me in the silent room. I wanted to do as she bid me that day. I longed to leave my life because hearing those words was more than I could bear.

As time passed, I gradually learned to understand my mother's desperation, because as I sat there in the care home and listened to other parents talk, I discovered many others felt just as tormented as she did. 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 had loved so much. Every time she looked at me she could only see the ghost boy he'd left behind.

Says a lot about the nature of relationships with other people. This is why you have to show outsiders text conversations and ask them, "Am I interpreting this correctly?" It's so much harder to tell when you're involved. It also reminds me of how people say things about abused women like, "How could she stay with him after he did those things, said those things?" It's hard to tell from the inside.

I feel more and more angry at a world that I often don't understand, but I'm as much to blame for my anger as others. When I was a ghost boy, I could understand people: if they dismissed, doubted, or undermined, I could see it; if they praised, teased, or were shy, I could tell. But I'm not longer an outsider. I see things from a different perspective now. It's impossible at times to recognize how people are behaving towards me as I try to interact with them. All my reference points have changed. It's as if I can only calibrate others when they have nothing to do with me: if someone is rude, I don't realize it; if they are impatient, I can't see it.

Ghost Boy quotes

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