21 Apr 2015

Ghost Boy - Martin Pistorius

From Jesse Mulligan, 1–4pm, 3:08 pm on 21 April 2015

When Martin Pistorious was just 12 years old, he fell into a coma-like state suffering from a mysterious illness.  The little South African boy was unable to move or talk. 

Martin spent four years completely unaware of his surroundings. Then his mind suddenly became active again, but no-one knew he was there.

 I often say it was like being a ghost. You can hear, see and understand everything around you, but you have absolutely no power over anything...It is like you don’t exist, Every single thing in your life is decided by someone else, from what you wear to what you eat or drink, and there is nothing you can do about it.”

For 8 years, Martin Pistorious was unable to speak or move or alert anyone to the fact that his mind was active again.

Ghost Boy by Martin Pistorius

Photo: Supplied

Today he is married and has a career, and has written a haunting account of his experience in a new book called Ghost Boy: The Miraculous Escape of a Misdiagnosed Boy Trapped Inside His Own Body.  He has regained control of his head and arms, but needs a computer with a voice synthesizer to communicate.

During the dark days when no one knew he had become conscious again, he would lose himself in his imagination. "I’d imagine all sorts of things' like my wheelchair  transforming into a flying vehicle a la James Bond with rockets or missiles" he says.

He would watch insects with great intensity, listen to the radio and dream of playing cricket.  Sometimes his caregivers would park him in front of the TV to watch the children’s show, Barney.  Now the purple dinosaur triggers difficult emotions. “Maybe it’s that fact that he was so jolly and I absolutely was not but I cannot watch the show” says Martin.

It took Martin Pistorious some time to fully comprehend that he was trapped in his own body. For his family, it was also an extremely difficult time.  His Mother, unaware that Martin could hear and understand everything around him, told him she hoped he would die. “ I understood” he says about his Mother’s statement. “It broke my heart but not so much because she thought they would be better off without me, I thought that too, but because I could see how my illness affected all of them”.

Over the years, Martin spent time in several care facilities and says he was abused physically, mentally and even sexually in all of them.

I was hit, pinched, manhandled and intentionally dropped...even sexually abused at the day care centre...Not being able to communicate makes you a perfect victim because you can never tell anyone. There was never a care home I was in that I didn’t see some abuse, even if it didn’t happen to me."

There were many times when Martin tried to alert everyone to his awakening.  He describes his Father as his tower of strength through his 12 year ordeal.  He tried to alert him about his awakening.  “My Father was putting me into bed and I was trying as hard as I could to move to indicate to him that I was more aware than he thought” says Pistorious. “I remember how my heart was pounding and it felt like I was making these big movements, however they were barely perceivable. I was truly trapped” he adds.

Everything changed when a new care-giver named Verna came to work at the day care centre where Martin spent his days. “At first I thought she was just another carer, I had seen so many of them come and go” he says. “But I sensed she was different. She would talk to me as if I understood everything”. She noticed small ways that Martin indicated that he understood. She saw signs of his awareness in his eyes and urged his family to investigate.  “I think being seen validates your existence. It makes you feel like you matter”.

They took him to the Centre For Augmentative And Alternative Communication at the University of Pretoria, where he started getting more intense therapy.  Eventually he was given a computer to communicate and connect with the world he had only been able to watch for 12 years.

He’s married now and works as a web designer in England. He doesn’t like to dwell on the past. “ I am truly blessed. I have learned to appreciate the small, simple and yet important things in life; being with the people you love, the feel of sunshine on your skin, the taste of your favorite food”.

He also hopes his story will remind everyone who has a loved one in care never to give up hope. “Treat everyone with kindness and dignity whether you think they understand you or not”