Man Who Suffered From Locked-In Syndrome For 12 Years Describes Moment He Woke Up Realised What Was Happening

Martin Pistorius from Johannesburg, South Africa, was just 12 years old when his life changed dramatically.

After coming home from school one day in 1988 complaining of a sore throat and headache, his condition rapidly deteriorated.

Day by day, Martin's health worsened until he could no longer communicate or move his body, eventually falling into what doctors initially thought was a coma.

It was later discovered that he was suffering from 'locked-in syndrome'—a rare neurological condition where a person remains conscious but cannot move or communicate, except through eye movements.

Martin couldn't communicate with anyone for over a decade. NBC News

By the age of 16, Martin began to regain consciousness, and by 19, he was fully conscious but still completely paralyzed except for his eyes.

In an interview with The Wright Stuff, Martin shared what it was like to regain consciousness: 

"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."

Despite his paralysis, Martin was acutely aware of major events happening around him, including the death of Princess Diana 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 emotional toll on his family was immense, and at one point, his mother, overwhelmed by despair, told him, "I hope you die," not realizing he could hear her.

Martin's childhood memories got wiped. Instagram/@martinpistorius

"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 expressed.

He also shared with the Daily Mail how his father's faith was nearly shattered: 

"My father's faith in me was stretched almost to breaking point – I don't think it ever disappeared completely. 

"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."

Martin now advocates for disability rights. Instagram/@martinpistorius

Martin credits 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, using 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 experiences through public speaking.