12 years invisible: How Martin Pistorius emerged from a 'prison' of silence
Martin Pistorius was believed to be in a 'vegetative state' for 12 years, only to wake up and inform his caretakers he had been conscious. His triumph over adversity is captured in his memoir.
Faith, hope, and love . . . these three things helped Martin Pistorius survive his 12 years of silence.
In South Africa in the late 1980s, 12-year-old Martin had the world at his fingertips. A young, bright boy, he spent most of his time thinking about electronics. Then, over time, he lost his ability to move, to make eye contact, and eventually to speak. This began a long, difficult stretch of his life in which he was believed to be in a "vegetative state," but was actually conscious and aware of his surroundings.
For 12 years, Pistorius was falsely believed to be completely oblivious to his surroundings, a time he has documented in his published memoir, “Ghost Boy: My Escape From a Life Locked Inside My Own Body.” Doctors diagnosed him with cryptococcal meningitis, but could not explain his sudden fade into comatose. According to NPR, doctors advised his parents, Rodney and Joan Pistorius, to take him home and keep him comfortable until he passed on. But he kept living.
Every day, Rodney would get up at 5 a.m. to dress his son and drive him to a special health care center. Eight hours later, he would pick him up and bring him home to bathe, feed, and put him to bed. He would wake up after two hours of sleep each night to turn Martin.
What no one realized was that after two years in his unresponsive state, Martin became aware. He saw and heard everything, but couldn't move. He grew to hate the children’s television show Barney, as the care center would constantly play re-runs since they did not realize Martin was awake. He was painfully aware that his family kept living their lives, going on family vacations with his two siblings without him. One day, his mother told him, “I hope you die,” leaving him angry, frustrated, and heartbroken that he was helpless to change his situation.
“My mind was trapped inside a useless body, my arms and legs weren’t mine to control and my voice was mute,” Martin writes in his memoir. “I couldn’t make a sign or sounds to let anyone know I’d become aware again. I was invisible – the ghost boy.”
In such circumstances, when even the support of your family fades, how does one find the will to live?
Martin admits to going through a phase in which it was better not to think. With no control over anything, it was the only way he knew to cope.
“You don’t really think about anything. You simply exist. It’s a very dark place to find yourself because, in a sense, you are allowing yourself to vanish,” he said to NPR. But then he decided to try to reassert control of his life. At first, he took mental baby steps.
Martin learned to tell time by the rising and setting of the sun. He began to think about the thoughts that haunted him, and reached a healthier, more compassionate perspective of his family’s response to his illness.
“As time passed, I gradually learned to understand my mother’s desperation. Every time she looked at me, she could see only a cruel parody of the once-healthy child she had loved so much,” said Martin. He continued to grow mentally and emotionally, until one day his progress was noticed.
When he was 25, Virna van der Walt, Martin’s aromatherapist, noticed his slight smiles, his efforts to indicate he was aware by nodding and gazing. At her request, he went for testing at the Centre for Augmentative and Alternative Communication at the University of Pretoria, where tests confirmed he was aware and responsive. His consciousness was finally recognized by others.
From then on, progress was easier for Martin, now 39. He taught himself to read and write. He got a job at a health center. He went to university. And in 2009, he married Joanna. The couple lives in England, and he works as a web designer.
Martin wrote his book, “Ghost Boy,” to highlight the triumph of the human spirit, and serves as a wake up call to how we value human life.
“It was she (Joanna) who has taught me to understand the true meaning of the Bible passage we were having read at the [wedding] service: ‘There are three things that will endure — faith, hope, and love — and the greatest of these is love’,” Martin said.
“My life has encompassed all three and I know the greatest of all is indeed love, in all its forms. I’d experienced it as a boy and a 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.”