When Martin Pistorius, who was only 12 years old at the time, came home from school one day with a sore throat, little did he anticipate that he was on the brink of losing an entire decade of his life.
What doctors initially thought was a straightforward case of the flu swiftly evolved into a condition that led him into a coma.
Hailing from South Africa, Pistorius received a diagnosis of both cryptococcal meningitis and tuberculosis of the brain, prompting the initiation of treatment for both conditions.
As his body weakened, and he lost the ability to speak and move, Pistorius found himself in a vegetative state—a challenging experience he detailed in his 2011 book, “Ghost Boy.”
Although Joan and Rodney, his parents, were not provided with a conclusive explanation of their son’s condition, they were unwilling to give up on him. They decided to keep him in a care center, holding onto hope for his recovery.
In a conversation with LADbible last year, the 49-year-old, reflecting on his experience, likened his coma to being trapped in ‘an empty shell,’ completely unaware of anything happening around him.
Martin Pistorius in hospital. Credit: Supplied
“I could hear, see, and comprehend everything happening around me, yet I had absolutely no power or control over anything.”
“The sensation of absolute and utter powerlessness is, for me, perhaps the most distressing feeling I’ve ever encountered, and I fervently hope to never experience it again. It’s as if you don’t exist, and every aspect of your life is determined by someone else.”
“Every detail, from your clothing to your food and drink choices, even the decision of whether to eat or drink, to where you’ll be tomorrow or next week, is entirely beyond your control, and there’s nothing you can do about it.”
At that time, nobody had realized that Pistorius had regained consciousness and was absorbing everything happening around him.
He vividly recalled being left with no choice but to watch reruns of Barney in the special care center.
Martin and his dad Rodney. Credit: Supplied
“I previously stated in an NPR interview that I couldn’t adequately convey the extent of my dislike for Barney.”
During that period, Joan, his mother, acknowledged that there were moments when she found it challenging to accept her son’s condition.
In his memoir, he recounts a poignant moment when he was seated in his wheelchair, and his mother uttered the heartbreaking words to him: “I wish you would pass away.”
Those words had a profound impact on him, eliciting feelings of deep sadness and distress. However, he expressed understanding of the source behind those sentiments.
To maintain his mental well-being, he relied on his imagination, envisioning various scenarios such as shrinking down to a small size and boarding a spaceship for a journey into the unknown. He also imagined his wheelchair undergoing a magical transformation into a flying vehicle.
At times, I found solace in observing the subtle movements around me, like the way sunlight shifted and evolved throughout the day.
I would also find fascination in observing insects bustling around, yet, truthfully, my existence became so immersed in my thoughts that, at times, I remained oblivious to the world unfolding around me.
In 2001, at the age of 25, a relief carer at the day center, Virna van der Walt, urged Pistorius’s parents to bring him to the Center for Augmentative and Alternative Communication at the University of Pretoria.
At the center, a researcher presented a sheet of paper adorned with symbols and requested him to use his eyes to identify a ball among them.
Once he successfully identified the shape, he was then tasked with locating the representation of a dog.
Martin Pistorius and his wife Joanna. Credit: Supplied
Almost 13 years after falling ill, he finally disclosed his consciousness and ability to communicate.
His parents invested in a computer preloaded with communication software, akin to the technology employed by the late theoretical physicist Stephen Hawking.
Pistorius used a head-mounted band as a mouse-like device to select letters, words, or symbols on the computer loaded with communication software.
After his recovery, Martin commenced working with van der Walt in 2003 at the care center.
He encountered the love of his life, Joanna, employed as a social worker. They tied the knot in Essex in the year 2009.
In 2018, they joyfully welcomed a son named Sebastian Albert Pistorius, and Pistorius frequently posts pictures of his family on Instagram.
Currently, he is employed as a computer scientist and web developer.
