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 an unknown degenerative disease had left him with the mind of a baby and he probably had less than two years to live.
Martin was 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. In this extract from his deeply moving memoir Ghost Boy, Martin describes what it felt like in those horrific years.
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 movements or speak, I didn’t think about what I could or couldn’t do. Thoughts rushed through my mind that I never considered voicing and I didn’t realise 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 realised they belonged to me. It was the same with the two hands that trembled uncontrollably whenever I saw them nearby. They were part of me too but I couldn’t control them at all.
I wasn’t paralysed: 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 I couldn’t control them. People were always trying to make me use my legs – physios 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. But while my body and I were locked in an endless fight, my mind was slowly getting 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. I was completely entombed.
That was six years ago. At first I wanted to fight my fate by leaving some tiny sign to guide people back to me, like the pieces of bread Hansel and Gretel left behind to help them find their way out of the dark woods. But gradually I came to understand that my efforts would never be enough: even as I came back to life, no one fully understood what was happening.