Martin Pistorius might have finally felt like himself again after regaining consciousness, but he couldn’t communicate it to anyone
A man who spent more than a decade suffering from ‘locked-in syndrome’ while his mind regressed to the age of an infant has told how he felt ‘utterly powerless’ when he finally realised what was going on.
Despite defying the odds and the bleak prognosis doctors had given him, Martin Pistorius explained he was enveloped by sheer despair when he began regaining consciousness – as he was unable to tell anyone.
And tragically, he faced an extremely lengthy wait before anyone realised.
Martin, from Johannesburg, South Africa, was just 12 years old when his life changed forever after he came home from school one day in January 1988 while suffering from a sore throat.
As his condition continued to worsen, his parents rushed him to hospital where baffled medics tried to work out what was wrong with him.
Speaking to LADbible in April this year, Martin explained that doctors suspected he was suffering from cryptococcal meningitis and tuberculosis of the brain, so was treated for both – but these efforts were unsuccessful.
“My body weakened and I lost the ability to speak and control my movements,” he said, while explaining that he began to slip into a vegetative state which would end up lasting for four years.
Martin Pistorius spent his teenage years ‘locked in’ a coma (Supplied)
‘Utter powerlessness’
Doctors could still not determine the cause of the young lad’s condition and told his parents, Joan and Rodney, that he had no hope of survival.
His mum and dad were later informed that an unknown degenerative disease left him with the mind of a baby, wheelchair-bound and mute, while medics estimated he had less than two years to live.
Throughout his teenage years, Martin spent his days in a care centre while he would return to his family each night – and he described this dark period of his life as being like ‘an empty shell, unaware of anything around me’.
But four years after he first fell ill, there was an incredible breakthrough, which the South African says was the moment that he began to feel like himself again – which as you can imagine, was both thrilling and terrifying.
He explained: “I remember around my 16th birthday people talking about the stubble on my chin and wondering whether to shave me.
“It scared and confused me to listen to what was being said because, although I had no memories or sense of a past, I was sure I was a child and the voices were speaking about a soon-to-be man.
“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 again.”
Sadly, nobody around Martin was able to realise he was conscious and they continued to assume he was still in a coma.
He began to regain consciousness when he turned 16 but couldn’t communicate this with anyone (Instagram/@martinpistorius)
Agonising wait
He would spend the next few years being shunted between his home and day-care centres, and he started to lose hope – fearing he would die alone in a care home without anybody realising he was conscious.
“What really got to me was the complete and utter powerlessness,” Martin explained.
“Every single aspect of your life is controlled and determined by someone else. They decide where you are, what you eat, whether you sit or lie down, in what position you lie in, everything.”
But in 2001, Martin met therapist Virna van der Walt at his day centre, who picked up on the ‘sparkle in his eye’ and sensed that her patient could understand a lot more than what other people thought.
She encouraged the then-25-year-old’s parents to take him to the Centre For Augmentative and Alternative Communication (CAAC) at the University Of Pretoria, who realised he had regained consciousness.
Martin described Virna as ‘the catalyst who changed everything’, while adding that he believes he would either be dead or ‘forgotten in a care home somewhere’ if it wasn’t for her.
He recalled how a researcher at CAAC held up a sheet of paper with symbols on it and he was asked to locate a ball with his eyes – and after finding that shape, he was then tasked with tracking down a dog.
This confirmed Virna’s suspicions that Martin was aware of what was going on, resulting in his parents purchasing him a computer that was preloaded with communication software so he could converse with them.
Martin is now happily married to his wife Joanna, who he shares son Sebastian with (Instagram/@martinpistorius)
Second chance
Martin would select letters, words or symbols on the device using a band attached to his head, which would act like a mouse, allowing him to finally regain his voice and his independence.
The medical marvel later started working with Virna at the care centre in 2003, before meeting his wife Joanna and emigrating to the UK – where the pair got hitched to in Essex in 2009.
Martin wrote a book about his harrowing experience, titled Ghost Boy, as well as later hosting a TED Talk in 2015 titled: “How my mind came back to life – and no one knew.”
He went on to welcome a son, Sebastian Albert Pistorius, in 2018 with social worker Joanna and has continued to come on leaps and bounds ever since.
Updating his followers on his progress in an Instagram post, Martin explained: “Since 2010 I have: graduated with a first class honours degree in computer science, learnt to drive, publish my book (Ghost Boy), given a TED Talk, started wheelchair racing, set a European record, been awarded a Doctorate, travelled far and wide, and become a father.
“I am intensely grateful to the people who have passed through my life, and those who remain part of it, especially my wife. For without them and the grace of God, none of this would have been possible.”
These days, Martin is a computer scientist and web developer – with a kick ass life story which should serve as a reminder to us all to not take anything, especially our voices and independence, for granted.
