A man who had ‘locked-in syndrome’ for 12 years has revealed what it was like when he realised what was happening.
Martin Pistorius, from Johannesburg, South Africa, was just 12 when he fell into a coma and lost voluntary motor control.
The healthy 12-year-old came home from school in 1988 and told his mum that he had a sore throat and headache. Though with each passing day, his condition got worse and he lost the ability to communicate and use his body.
Martin couldn’t communicate with anyone for over a decade. (NBC News)
Falling into a vegetative state, doctors believed that he fell into a coma, before it emerged that he was completely paralysed and unable to talk.
‘Locked-in syndrome’ happens to be a rare neurological condition where a person is conscious but unable to move or communicate, except via eye movements.
At around 16, he regained consciousness and achieved full consciousness by 19. However, he was still completely paralysed with the exception of his eyes.
Explaining what it was like when he regained consciousness, he told The Wright Stuff: “It’s like a cold, sinister frustrating and frightening feeling, which seems to throttle every cell in your body.
“It’s was like you’re a ghost witnessing life unfold in front of you and nobody knows you are there.”
Martin’s childhood memories got wiped. (Instagram/@martinpistorius)
Whilst watching the news, he consciously remembered everything, from Princess Diana’s death, to the 9/11 attacks.
“But nobody thought I was even aware of them, let alone the fact that I not only knew about them, but was shocked or excited or saddened like everyone else,” he added.
Understandably, his family found it extremely tough and breaking point came when his mother turned to him and said: “I hope you die,” unaware that he could hear it.
“It broke my heart, in a way, but at the same time, particularly as I worked through all the emotions. I felt only love and compassion for my mother,” Martin said.
“My father’s faith in me was stretched almost to breaking point – I don’t think it ever disappeared completely,” he also told the Daily Mail.
Martin now advocates for disability rights. (Instagram/@martinpistorius)
“Each day Dad, a mechanical engineer, washed and fed me, dressed and lifted me. A bear of a man with a huge beard like Father Christmas, his hands were always gentle.
“I would try to get him to understand I had returned, willing my arm to work. ‘Dad! I’m here! Can’t you see?’ But he didn’t notice me.”
He thanked his therapist as ‘the catalyst who changed everything’, saying: “Had it not been for her, I would probably either be dead or forgotten in a care home somewhere.”
Martin eventually recovered enough to live independently in a wheelchair and a computer that speaks for him.
Now, he is a father, advocates for disability rights, works as a web designer, and shares his story through public speaking.
