A man who was trapped in his own body for 12 years with locked-in syndrome has explained what it felt like when he woke up.
Martin Pistorius, a man from Johannesburg, South Africa, was just 12 years old when his life took a drastic turn.
In 1988, the previously healthy boy came home from school complaining of a sore throat and headache.
As the days passed, his condition deteriorated rapidly, leaving him unable to communicate or move.
Eventually, he slipped into a vegetative state, with doctors believing he was in a coma.
However, it later emerged that Pistorius was suffering from locked-in syndrome, a rare neurological disorder in which a person is fully conscious but completely paralyzed, with the ability to communicate only through eye movements.
Pistorius regained partial consciousness at the age of 16 and achieved full awareness by the time he was 19, yet remained entirely paralyzed except for his eyes.
Describing the moment he realized he was conscious but trapped in his own body, Pistorius told The Wright Stuff: "It's like a cold, sinister, frustrating, and frightening feeling, which seems to throttle every cell in your body.
"It was like you're a ghost witnessing life unfold in front of you and nobody knows you are there."
During this period, Pistorius vividly recalled global events like Princess Diana's death and 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.
The ordeal took a severe toll on his family. His mother, unaware that he could hear her, once said in despair, "I hope you die."
Reflecting on this moment, Pistorius said: "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."
His father, who never completely lost hope, continued to care for him daily.
Pistorius described one particularly painful memory in The Daily Mail: "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... Rage filled me. I felt sure I’d burst. I gasped for breath."
Pistorius's turning point came in an unexpected way—through the children’s TV show Barney, which he was forced to watch repeatedly at the care center where he spent his days.
"I cannot even express to you how much I hated Barney," Pistorius told NPR during an episode of Invisibilia, a program on human behavior.
His frustration became a catalyst for change as he began to track time by the sunlight in the room, taking the first steps toward reclaiming his mind.
As Pistorius learned to "reframe" and "reinterpret" his darkest thoughts, his health gradually improved.
By age 26, he had regained enough control to communicate using a computer, stunning his family. "When he gets the tools to communicate, he forges ahead," his mother, Joan Pistorius, told NPR.
Pistorius's progress continued as he pursued a degree in computer science, started a web company, and penned his memoir, Ghost Boy, published in 2011.
Martin’s life took another dramatic turn when he met Joanna, a South African social worker living in Britain.
After months of emails and video chats, Joanna invited Martin to visit her in England.
Despite his initial doubts, Martin realized that Joanna saw him for who he truly was. "You’re the most honest man I’ve ever met," she told him, "and you’ve made me so happy," per the Daily Mail.
Their relationship blossomed, leading to Martin’s move to England. They married in June 2009 in Essex, with Martin reflecting on the vows he was about to make: "For better, for worse, in sickness and in health."
Reflecting on his journey, Martin said: "My life has encompassed all three [faith, hope, and love], and I know the greatest of all is indeed love."
Martin and Joanna have since welcomed a child, Sebastian, together.
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