We all face challenges as we move through the stages of life…whether it be losing weight, buying a new house, or the stress of a new job. Few of us, however, can imagine facing the obstacles that confronted Martin Pistorius and his family. In 1988, at age 12, Martin fell sick and experienced a steady physical and mental decline that proved difficult to diagnose. Martin had traveled beyond the realms of what medicine understood. He was treated for meningitis but no definitive diagnosis was ever made. He appeared to be suffering from a degenerative neurological disorder. The South African medical profession advised his parents to put him in an institution until he passed.
This memoir (Ghost Boy) reveals the complex web of emotions and responsibilities that Martin’s family had to confront on a daily basis. Martin’s mother eventually fell victim to feelings of darkness and desperation, concerned about the effect the exhausting care for Martin was having on her other children. At this point, Martin truly appeared like a “ghost boy”…unresponsive and in a persistent vegetative state. His father insisted that Martin not spend all his time at a care center where the only entry requirement is an IQ of thirty or less. Martin spent every evening, his overnight hours and his weekends in his own home, thanks to his father’s dedicated and loving care. Martin loved being with his family (even if he could not express it) and felt sadness on Sunday nights when he faced another week at the care center with Barney and Teletubbies blaring.
At the age of sixteen, Martin’s mind began to slowly awaken, and he was no longer an empty shell. By age nineteen, he again knew who he was and where he was situated. Unfortunately, he had no way to communicate his return to awareness, as he could not speak or control his unruly limbs. There is an excellent chapter in the book called Coming Up For Air that recreates in short snippets what this experience was like for Martin:
I can smell sunshine.
Music, high and tinny. Children singing. Their voices fade in and out, loud then muffled, until they fall silent.
A carpet swims into view. It’s a swirl of black, white and brown. I stare at it, trying to make my eyes focus, but the darkness comes for me again.
In later chapters, Martin recounts with brutal honesty the abuse he suffered at the hand of some of his caretakers. As a mother, it was painful for me to read these passages and to know that people could abuse their power and take advantage of the weak and defenseless. Among the bad apples, there were many truly good caretakers who engaged Martin in conversation, even if he did not appear to respond. A new employee at the care centre named Virna looked at Martin with fresh eyes. She had heard experts talk about what could be done to help those who can’t speak, using switches and electronic devices to help people communicate. She thought Martin might be a suitable candidate. Virna spoke to Martin’s parents, who agreed to have him tested.
The book enters inspirational territory as we learn of Martin’s rapid progress back to the world of the living. With the help of a computer with a special software program, the tireless support of his parents and some mentors, Martin learns at a rapid pace and uses his computer skills to find volunteer work and eventually a paying job. His world was expanding rapidly. Physically he still had many limitations and mentally he was challenged by a world that requires a million decisions, from what cereal to buy (of the 100 on the shelf) to the colour of a new pair of shoes. Since Martin spent his formative years making absolutely no decisions, you can imagine how challenging this modern world must seem!
In one chapter Martin describes his experience trying to make breakfast. He had never even made coffee before as he did not trust his shaking hands. The vivid imagery in these passages really brought home the complexities of a task that most of us take for granted:
Now for the jam – my final Everest. I pulled the jar towards me and thrust my knife into it. It clattered inside the jar before skidding off in the opposite direction to the toast when I pulled it out. I forced the knife downwards, cleaving it to my will as it hit the side of the toast before skittering across the plate and leaving a glistening red slick on the table. I stared at the battered toast before looking at the floor, which was covered in coffee granules and sugar. The butter looked as if a wild animal had chewed it and jam had erupted like a volcano across the table (p.235).
Making breakfast fills Martin with euphoria. That is really what living is all about: achieving previously unattainable goals, and then making a new list.
Martin’s new life, though busy and rewarding, was incomplete. Would he ever find love? He was open to the prospect. A chat with his sister on a webcam introduced him to his sister’s friend, Joanna. If you are a romantic at heart, you must read this book and find out for yourself how this relationship progresses!
If you like this book try reading (or watching):
The Diving-Bell and the Butterfly by Jean-Dominique Bauby
The diary of Jean-Dominique Bauby who, with his left eyelid (the only surviving muscle after a massive stroke) dictated a remarkable book about his experiences locked inside his body.
The movie (directed by Julian Schnabel) is also excellent, and won numerous awards including Best Foreign Language Film and Best Director at the Golden Globes.