At some point in our lives, most all of us have experienced feeling invisible to some degree. Whether it’s in school where you didn’t quite fit in, at work where you don’t feel heard, or even at home where you can’t get comfortable – at some point we’ve all struggled with feeling invisible.
Martin Pistorius has also experienced this feeling – but for him it wasn’t just a small portion of life, it was every single day of his life for more than a decade. For 12 years he was literally unable to talk to or be understood by anyone and he felt utterly alone, even with people surrounding him all the time.
In the late 1980s, Martin was just a regular young boy growing up in South Africa, with a knack for working with electronics. But at 12 years of age, he came down with a strange illness, seemingly out of the blue. The doctors couldn’t pin down exactly what it was, but believed he had something called cryptococcal meningitis — a disease that got progressively worse, and robbed him of his ability to move by himself, make eye contact, or speak.
He was left in a completely vegetative state. The doctors told his parents he was as good as gone and their best bet was to just make him comfortable at home until he died.
But he didn’t die.
“Martin just kept going, just kept going,” his mother, Joan Pistorius, told NPR.
His daily routine consisted of his father waking up at 5 o’clock every morning, getting him dressed, loading him in the car, taking him to the special care center for the day. After the work day he would pick him back up, bathe him, feed him dinner, put him to bed and set his alarm clock for two hours.
“I’d wake up to turn him so that he didn’t get bedsores,” Rodney Pistorius explained.
For years they lived like this, and while there is a period of time that is blacked out in his memory, Martin wasn’t unaware of what was going on outside of his body. He was very aware.
“I was there, not from the very beginning, but about two years into my vegetative state, I began to wake up,” says Martin.
At about 14 or 15 years of age, he regained consciousness.
“I was aware of everything, just like any normal person,” he says.
So he was completely present when his mother walked up to him one day and said “I hope you die.” She thought he couldn’t register anything.
Thinking back on that moment, Joan says “I know that’s a horrible thing to say. I just wanted some sort of relief.”
Martin, now 39, eventually came to that understanding, but only after a long struggle of being trapped in an immobile body with nothing but his own thoughts for company.
“Everyone was so used to me not being there that they didn’t notice when I began to be present again,” he explains. “The stark reality hit me that I was going to spend the rest of my life like that — totally alone.”
Thoughts of never experiencing tenderness or love consumed him.
“You are doomed” he constantly told himself.
So to deal with the pain, he went through a period of disengaging completely from his thoughts.
But that was a dark place to be in, he recalls.
“You don’t really think about anything. You simply exist” he told reporters, adding “In a sense, you are allowing yourself to vanish.”
Over time however, he learned to change that way of living. He wanted some control over his life, so he started by figuring out how to tell what time it was by watching the way the sun moved across his room.
That was the beginning and from there he started to completely re-frame how he looked at the world and thought about himself.
Even going back to what his mom had said, a moment that forced him to ask himself why a mother would say something like that, led to great understanding.
“The rest of the world felt so far away when she said those words” he says, but “as time passed, I gradually learned to understand my mother’s desperation. Every time she looked at me, she could see only a cruel parody of the once-healthy child she had loved so much.”
And he understood it was out of love she said those words — not hate, nor anger.
He started to come to terms with everything and slowly, as he overcame his demons mentally, his body started to overcome its disabilities. He started regaining control when one day, when he was 25, a nurse noticed Martin smiling slightly, as well as nodding and gazing to indicate he was aware. Convinced that there was something behind that smile, she requested he be sent to the Centre for Augmentative and Alternative Communication at the University of Pretoria. Her requests were honored, and tests found that he was in fact completely conscious.
From there, with the acknowledgement of everyone that he was present, he improved by leaps and bounds. He taught himself to read and write, got a job at a health center, attended school and got married to a woman named Joanna in 2009. Today he has a published book under his name, titled Ghost Boy, in which he talks about his journey – from the deepest moments of despair to the highest peaks of triumph.
Talking of faith, hope and love, he says:
“My life has encompassed all three and I know the greatest of all is love, in all its forms. I’d experienced it as a boy and a man, as a son, brother, grandson, and friend, I’d seen it between others and I know it could sustain us through the darkest of times.”
To learn more about Martin’s story and how he reclaimed his life, listen to Invisibilia, NPR’s newest program and buy Martin’s book, Ghost Boy: The Miraculous Escape of a Misdiagnosed Boy Trapped Inside His Own Body.