Have you ever felt that changing your unhelpful thinking, or changing an unproductive habit is just too hard? This story might encourage you to challenge those beliefs and change your life for the better.
After reading and re-reading Ghost Boy by Martin Pistorius, I am only now beginning to understand the true power of our brains.
When Martin was a healthy boy of 12, he came home from school complaining of a sore throat. Over the next two years, a virus gradually paralyzed his brain. By 14, he had become a mute quadriplegic. His parents were told he would never recover.
Eventually his parents accepted that nothing more could be done, but Martin’s father refused to let him leave home. Every morning, Rodney woke, washed, dressed, and fed him, then took him to a care centre, where Martin stayed all day either lying on a mattress or strapped into a wheelchair.
In the evening, Rodney brought him home, fed him at the table with his mother, brother, and sister, watched TV with Martin on the couch, and put him to bed. Every two hours during the night, Rodney got up to turn Martin’s body to prevent bed sores.
At age 16, Martin began to become aware of his surroundings. By the time he was 19, his mind was fully intact, but he couldn’t communicate with anyone around him. For the next 6 years, he felt completely trapped in a body he couldn’t control. He could only move his eyes, smile, and slightly jerk his head. He tried very hard to communicate with his father with no success.
One day in 2000, Virna, a relief caregiver began to talk to him directly as if he could understand her. Gradually, over a period of months, Martin began to get eye contact with her. Virna persuaded his parents to take him to the Centre for Augmentative and Alternative Communication (AAC) when Martin was 25.
Martin showed everyone that he could understand requests to look at certain pictures and eventually he was able to jerkily use his head and sometimes his right hand to control switches. Once Martin got a band on his forehead with a laser light he could use as a switch, he worked for 6-8 hours a day, learning to do more and more.
Over the next year, Martin mastered 12 different software programs and learned how to turn his typed words into speech. In November 2003, he gave a talk to 350 people at the AAC. He seemed to have an intuitive feel for computers and by January 2004, he was working 2 days a week for the Health Centre and 2 days a week for the AAC. Later he started testing software for a UK company. By then, he had an electric wheelchair and he had taught himself to read and write.
In 2007 Martin’s younger sister Kim introduced him to her friend Joanna over Skype. Martin and Joanna had a special connection right away, and over the next few months they corresponded daily and planned to meet. Martin explained to Joanna just what limitations he still had. He couldn’t talk and still communicated through his computer. He could feed himself finger food, but needed to be spoon fed anything else. He needed help to get in and out of the shower, but could wash and dry himself. He could dress himself and move his manual wheelchair around with his feet, but his arms were not yet strong enough to move a manual wheelchair. Joanna wasn’t bothered by any of those limitations.
Happily in love, they had a wonderful holiday in England. In August 2008, they travelled to a conference in Canada where Martin gave a speech to 2,000 people. He had a full time, well paid job with the Scientific Research Institute. When Joanna came to visit him in South Africa, Martin arranged to take her up in a hot air balloon, where he proposed to her with a beautiful ring he designed. They were married in England in 2010.
Now living in England, Martin is still improving. His hands, arms, and legs are getting stronger, and he and Joanna are very happy together.
I find it fascinating and very exciting how Martin’s brain, which was “frozen” for many years, has completely recovered intellectually and how his body is gradually, but steadily catching up. I highly recommend you read his book and check out his TED talk. In August 2015, Martin gave his talk showing even more physical strength and highlighting how strongly our pre-conceived beliefs influence what we can learn today. Martin is a symbol of hope for anyone who wants to get more power from their brain.