Ghost Boy: My Body And Mind Disappeared, And Then One Day I Woke Up Again
Martin Pistorius is the author of the New York Times best-selling book Ghost Boy: The Miraculous Escape of a Misdiagnosed Boy Trapped Inside His Own Body.
At the age of 12, an unknown illness left him wheelchair-bound and unable to speak. He spent 14 years in institutions.
In 2001, he learned to communicate via computer, made friends, and changed his life. In 2008, he met the love of his life, Joanna, and immigrated to the UK. They married in 2009 and in 2010, he started his own business.
He proudly shared an excerpt of his incredible story with Elite Daily. For more information on Martin's incredible journey, visit GhostBoyBook.com.
My mother looked at me, her eyes filled with tears. 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.
“You must die,” she said slowly. “You have to die.”
The rest of the world felt so far away when she said those words. 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.
As time passed, however, I gradually learned to understand my mother’s desperation and forgive her. Every time she looked at me, she could see only the ghost boy who’d been left behind after her once-healthy son fell sick.
When I was 12, I came home with a sore throat in January 1988 and never returned to school. In the months that followed, I stopped eating and started sleeping for hours each day and complained of how painful it was to walk.
As my body weakened, so did my mind: First, I forgot facts, then familiar things like watering my bonsai tree, and finally even faces.
My muscles wasted, my limbs became spastic, my hands and feet curled in on themselves like claws.
I was completely unresponsive and the doctors couldn’t diagnose what had caused it.
I was treated for tuberculosis and cryptococcal meningitis, but no conclusive diagnosis was made. Medication after medication was tried – to no effect. After about a year of tests, the doctors confessed they had run out of options. All they could say was I had a degenerative neurological disorder, and that my parents Joan and Rodney should put me into an institution and let my illness run its course.
Politely, but firmly, the medical profession washed its hands of me. We were, in effect, told to wait until my death released us all.
Age 14, I spent my days in a care center and returned home each night. Two more years passed with me lost in my dark, unseeing world.
I lay like an empty shell, unaware of anything around me.
Then, one day, I started coming back to life. At first, there were just flashes as my mind began to awaken. By the time I was 19, it was fully intact: I knew who I was and where I was, but my limbs were useless and my voice mute. Have you ever seen one of those movies in which someone wakes up as a ghost, but doesn't know he or she has died? That’s how it was, as I realized people were looking through and around me.
I couldn’t make a sign or a sound to let anyone know I’d become aware again. I was invisible – The Ghost Boy.
Slowly, I regained enough control of my neck to jerk my head down and to the right, lifting it occasionally or smiling in reply to simple questions.
But people didn’t realize what my new movements meant: They thought it showed only the most basic improvement. No one considered my improved responses might mean my intelligence was intact.
There was one person who offered me safe passage from my silent self: Virna van der Walt, a relief caretaker at the day center who used to give me aromatherapy massages. She was sure I could understand what she said because of the way I looked and smiled at her. Soon, she persuaded my parents I should be tested to see if there was any possibility I might communicate.
I was 25 when I was taken to the Center for Augmentative and Alternative Communication at the University Of Pretoria. Sitting behind a large sheet of Perspex with pictures of everyday objects pasted onto it, a therapist asked me to look at the ball, the dog and the television.
“I’m sure you understand us,” Shakila, the therapist assessing me, said. "I can see from the way your eyes travel you can identify the symbols we ask you to and are trying to use your hand to do the same. I feel sure we’ll be able to find a way to help you communicate.”
Unsure of what I might be able to do after so many years of being convinced I had severe learning difficulties, my parents took a leap of faith and bought a computer loaded with communication software. The speed with which I learned surprised my Mom, who’d given up her job as a radiographer to help me.
Slowly, she helped me build up a vocabulary – adding more and more words to vocabulary grids that were “spoken” by an electronic voice after I selected which ones I wanted to use.
I progressed quickly and my ease with computers made my father suggest I might be able to help at a local health center. I started in 2003, working to fix problems on computers. On days when I was not working, I was at home practicing on mine.
Then, the CFAAC offered me a job. Suddenly, life and I were colliding as I had new experiences: tasting a cloud of melting sugar called "Candyfloss" in the UK, feeling the warm pleasure of shopping for Christmas presents for my family for the first time.
I was starving for information -- there was so much to know. I was learning to build websites and was accepted to a university course, becoming one of the first two South Africans with non-functioning speech to graduate.
But one thing was missing: love. Ever since I had started to communicate, my hope was drawn toward women like a moth to a flame, only for me to be burned by their indifference.
When I met Joanna, I wondered if she would be different. She was a South African social worker who’d settled in Britain and become friends with my sister Kim, who was working there.
We met during a family web chat in 2008 and started emailing each other, culminating in Joanna suggesting we get together in Britain. I was curious about why she wanted to meet me.
“Because you’re the most honest man I’ve ever met,” she said.
Until we met, there would always be a fraction of doubt, however tiny. But Joanna taught me living life was about taking chances, even if they made me feel afraid.
After I arrived in Britain to meet Joanna for the first time in person, we couldn’t bear to be apart even for a moment. I had never known anyone who accepted me so completely and had so much peace inside. It was the simplest but most perfect of feelings.
It was inevitable that I would move to Britain and settle with Joanna, in Harlow, Essex. I found work as a web designer and got used to the small flat we shared.
We married in June 2009 in a church in Essex. As I sat waiting for Joanna’s arrival in a horse-drawn carriage, I contemplated the vows I was about to make.
It was Joanna who taught me to understand the true meaning of the Bible passage we were having read at the service: “There are three things that will endure – faith, hope and love – and the greatest of these is love.”
My life has encompassed all three and I know the greatest of all is love, in all its forms. I’d experienced it as a boy and man, as a son, brother, grandson and friend, I’d seen it between others and I know it could sustain us through the darkest of times.
Now it was lifting me closer to the sun than I ever thought I would fly.