At what point would a mother wish her son dead? If you were Joan Pistorius, you'd understand.
Martin Pistorius was a lively 12-year-old living in South Africa. In 1988, he went home from school with a sore throat and was never quite the same after. He fell ill to the point that he stopped eating. He would sleep for hours every day and would be unable to walk without pain. His mind weakened as his body deteriorated. He received treatment but doctors were never exactly sure about what got him sick in the first place.
Doctors eventually gave up, telling Martin's family to bring the boy home and keep him comfortable until the illness took its course. His mother, worrying about the amount of care he would need and its effect on the Pistoriuses' other children, wanted to entrust him to full-time residential care. Rodney, his father, would have none of that.
Every morning, Rodney would get up, dress Martin and take him to a special care center. After eight hours, he'd pick up his son, take him home, give him a bath, feed him and put him to bed. Rodney also woke up every two hours at night to turn Martin over in his bed so he wouldn't develop bedsores.
This was the kind of life the Pistoriuses lived for 12 years.
In pain for her son, at some point Joan told Martin she hoped he would die. It was a horrible thing to say but, as a mother, she just wanted relief. She also didn't think that her son would hear her given his state.
"Yes, I was there, not from the very beginning, but about two years into my vegetative state, I began to wake up," recounted Martin.
Bit by bit he regained his thoughts and further down the road he was able to control his body again. In 2001, he was taken to the University of Pretoria's Center for Augmentative and Alternative Communication where they were able to establish that he is alive and well in his head and simply needs help communicating.
Martin is 39 years old now and he's living in Britain with his wife Joanna. He's still in a wheelchair and still needs help with many of his day-to-day activities but he's himself now, no longer a prisoner in his own mind due to a sickness that no one really understood. He wrote Ghost Boy in 2011 to share his experience.
