Surviving a silent existence: 'I was trapped. I was invisible.'

At just 12 years old, South African Martin Pistorius fell mysteriously ill, leaving him paralysed in a coma-like state and doctors with no answers.

His parents were told to take him home to die.

But years later, Pistorius began to wake up — trapped inside a body that couldn’t move or speak to tell people he was regaining consciousness.

In his 2011 memoir Ghost Boy, he revealed the awkward, funny, and painful times he endured, including hearing his own mother wish he would die.

“For her, it was like her son died when he was 12," Pistorius told RNZ’s Sunday Morning through his voice synthesiser computer programme.

"I feel sad when I think back and remember all the feelings and upset that everyone was feeling.

“But I am not angry or resentful or anything like that. In fact, I feel enormous compassion and love for my mum.

"It was a really hard time for her and she was doing the best she could at the time.”

For about nine years, Pistorius lived a ghostly existence — aware of everything, but powerless to change anything.

“People said and did things they probably never would have if they knew I was listening. Farts, picking their nose, dancing, adjusting underwear, singing…

“I was trapped. I was invisible.”

His story has now been turned into a documentary, which won the Visions Audience Award at the SXSW Film and Television Festival earlier this year.

Pistorius’ illness began in 1988, when doctors initially thought he had the flu.

Tests later revealed cryptococcal meningitis and tuberculosis of the brain — but none could fully explain the mysterious condition that left him with locked-in syndrome.

Of the "three furies" — fear, loneliness, and frustration — it was frustration that tormented him most. Not being able to comfort his parents, he says, was "soul-destroying".

“Sometimes it felt like I was making huge movements, like shouting with my body, only to realise they were barely perceivable.”

With no control over his body, Pistorius turned inward. His imagination became his lifeline.

“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, à la James Bond, with rockets and missiles.

"Or playing cricket. Especially in the later years, I spent a lot of time fantasising about cricket.”

But life in care centres was sometimes cruel. He endured verbal and physical abuse that still haunts him.

“Even though I have come to terms with everything that happened to this day, there are still times when I have nightmares and flashbacks. Thankfully, not that often these days.”

And then there was Barney & Friends. The children’s show which played endlessly on repeat in his room.

“To this day, I hate Barney. I can't stand to listen to or watch Barney now.

"Not that I have anything against Barney, but it triggers memories and emotions which are really difficult for me.

“There are a number of other triggers, but I think in a way, because Barney in particular is so happy and jolly and I absolutely wasn't. It made it worse.

"But yeah, at the same time, I can see the funny side to that now.”

Everything changed in 2001 when a soft-spoken carer named Virna noticed something — subtle signs others had missed. For the first time in years, someone believed he was in there and it gave him hope.

“Life is constantly shifting, like sand in the desert. It doesn't always make the hard times easier, but it is a comfort to know that nothing stays the same forever.

"Even the darkest seasons pass. That sense of hope, even when it's quiet, even when it feels far away, has been a thread I've held onto.”

Learning to use assistive technology was slow and it’s still not perfect, but it has opened the door to connection, and he is deeply grateful for it. Writing Ghost Boy helped him process what he’d been through — and move forward.

“The gift of communication has enormous power. It brought my world back to life.

"That was incredibly exciting, but also daunting, even scary at times.”

Pistorius got married in 2009 and, over the past five years, has improved hand control and upper body strength.

His story has reached new audiences through Ghost Boy, a documentary directed by Rodney Ascher (Room 237, A Glitch in the Matrix).

The 49-year-old father says it was special to watch the premiere with his son.

“It's a strange thing, really, to see your life unfold on screen like that. But, as with my book, my hope is that the film will help others understand what it means to truly be seen and what it takes to survive when you feel invisible, to inspire, and perhaps most of all, to create awareness that even if you can't physically speak, everyone has the potential to communicate, to connect.”