There is a very real fear that most of us have. To be trapped inside your body in a coma-like state without being able to move or respond. The thought sent shivers down my spine. Well, a man locked inside his body for years, able to hear, see and comprehend his surroundings, has come forward with an up-close walk-through of his story.
Martin Pistorius, now 47 shares his encounter
When Martin was 12, he came home from school with a sore throat. He was treated for flu and sent home. Over the next week, nothing improved, in fact, things just worsened. So much so, that he ended up being hospitalized shortly thereafter. “I tested positive for cryptococcal meningitis and tuberculosis of the brain and was treated for both,” he told said. “My body weakened and I lost the ability to speak and control my movements.”
This put him in a vegetative state, unable to move or respond
Martin discussed how he was left in an almost coma-like state in his 2012 book, Ghost Boy. Pistorius’ parents Joan and Rodney had no idea why their son was left in the state he was in and were certainly not prepared to give up. They decided to have him moved to a special care center. Pistorius described feeling like ‘an empty shell, unaware of anything around me’.
“I was able to hear, see and understand everything around me but I had absolutely no power or control over anything. For me, that feeling of complete and utter powerlessness is probably the worst feeling I have ever experienced, and I hope I never have to experience it again. It is like you don’t exist, every single thing in your life is decided by someone else. Everything, from what you wear, to what you eat and drink, even if you eat or drink, to where you will be tomorrow or next week. And there is nothing you can do about it.”
Nobody noticed Martin come out of his coma, aware of everything around him
He specifically remembered watching reruns of Barney over and over again while at the care center, unable to say a word. “I cannot even express to you how much I hated Barney,” he declared in an interview with NPR. His mom, Joan says she struggled tremendously when it came to dealing with her son’s medical condition.
In his memoir, he recalls sitting in his wheelchair one day when his mum said to him: “I hope you die.”
This obviously affected him tremendously, but he knew where his hurt mother was coming from. In order to keep his sanity, he’d use his imagination. “I’d imagine all sorts of things, like being very small and climbing into a spaceship and flying away. Or that my wheelchair would magically transform into a flying vehicle. I would sometimes watch things move, whether it be how sunlight moved throughout the day. Or watching insects of some sort scurry about, but, really, I lived in my mind to the point where at times I was oblivious to the world around me.”
While in intensive care after waking from his coma, the then-25-year-old Pistorius was sent to the Augmentative And Alternative Communication at the University Of Pretoria for further tests
In 2001, when Pistorius was 25, a relief carer at the day center, Virna van der Walt, encouraged his parents to take him to the Centre For Augmentative And Alternative Communication at the University Of Pretoria. It was then that doctors made an astounding discovery. A researcher held up various images for Martin to identify.
Martin was asked to identify and locate a ball in the first image. He located the shape and was then asked to point out a dog. What a miraculous discovery. 13 years after first falling ill proved that Martin was conscious and able to communicate with those around him. His parents were ecstatic and purchased a specialized computer for him.
The computer came preloaded with special software similar to what the late theoretical physicist Stephen Hawking used which made communication easier for him. Pistorius would select the letters or symbols he wanted to use via a special band placed on his forehead. This acted like a mouse, pulling up a cursor on the screen.
Life after a coma, love even
Martin started working with van der Walt at the care center in 2003. A job he thoroughly enjoyed. This is where he met a social worker called Joanna. Things quickly escalated and the couple ended up marrying in Essex in 2009. They have since welcomed a son, Sebastian Albert Pistorius into their lives in 2018 and Pistorius often shares updates on the happy family on his own Instagram. He has a new job, working as a computer scientist and web developer, and maintains that he is tremendously grateful for where he is today.