When I heard the CBC interview with Martin Pistorius, I knew I had to read his book Ghost Boy.
Pistorius sank into a vegetative state for four years after being struck by a mysterious disease at the age of twelve. His mind began to emerge from the coma at 16, but his body, with the exception of his eyes, remained paralyzed. No one around him, including his family, knew he was conscious because he was unable to communicate.
This is what it must be like for people with dementia in the later stages, I thought. They are trapped inside their bodies and cannot make themselves understood.
Pistorius’ book is fascinating. It describes what life was like for him as a “ghost boy” until, after years of him being aware but no one knowing he was, one of his caregivers saw glimpses of his potential and arranged for him to be tested; he was 25 years old.
Throughout this time, his father was adamant that Martin should be with his family, so he resided at home and spent his days at a facility for severely disabled children. When his parents traveled, usually once or twice a year, young Pistorius was taken to a “home in the country” where he lived round the clock for several days or weeks while his parents were away.
In a chapter entitled Memories, Pistorius graphically describes the abusive treatment he received in this place:
“Eat it, you f—ing donkey,” the caregiver snaps at me.
I stare at the mince lying gray on the spoon in front of me. I’m 21 years old and still the ghost boy.
“Eat it!”
I open my mouth, and burning hot food is shoveled in. The rancid taste fills my mouth. Bile rises in my throat. I forced myself to swallow.
“And another.”
I open my mouth obediently. I know I must try to think of something else if I’m to persuade my stomach to accept what it is being fed. I look around the room. The jarringly soft strains of classical violins play in the background as I look at the other children here. Some cry; others are silent. My throat burns as I swallow.
“Hurry up, you heap of rubbish. We’ll be here for hours if you don’t speed up.”
The metal spoon crashes against my teeth as she forces another mouthful into me. I wish she would leave me hungry, but I know she won’t.”
Pistorius goes on to say how terrified he became each time he knew he would be taken to this “home in the country:”
“As my heart beat and my throat tightened, I would long to scream and wondered if I could make my parents hear my thoughts if only I tried hard enough.
But the one thing I wished for more than anything else 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 then they would see what was written on my face? Fear. I knew where I was. I knew where I was going. I had feelings. I wasn’t just a ghost boy. But no one looked.
When my mother or father finally came to pick me up, I listened helplessly as they were told I’d had another good stay.”
Martin Pistorius eventually emerged from his silent hell. He learned to communicate using a computer. He became a web designer, he married, he wrote a book, and he gave a TED talk.
But I cried through the chapter called Memories. I cried for Martin Pistorius’ pain and suffering and for his helplessness.
And I cried for all the vulnerable people in this world, many of them with dementia, many of them elderly, who are trapped like Pistorius was, who are unable to make their voices heard, who have no one to advocate for them, who suffer in silence and who are powerless and often forgotten.
They are our ghost people.
My Alzheimer's Story 