Imagine being able to see and hear everything around you, but not being able to talk and tell the people you love you could understand them.
From 1988 to the year 2000, this was Martin Pistorius’ reality.
When he was 12 years old, Martin fell ill. He stopped eating, lost his voice, and within 18 months, was in a wheelchair. Doctors told his family he was affected by an unknown degenerative disease that had left him with the mind of a child. They gave him two years to live.
He was trapped in his own body. But his situation was not what the doctors: he was aware of everything that was going on around him, but he couldn't respond in any way. No movement. No language. Nothing.
His devastated parents thought their son was gone, and the best thing that could happen was that he passed away peacefully. They had no idea he could hear them discussing their wishes in front of him.
"I told him 'I hope you die.' I know that’s a horrible thing to say. I just wanted some sort of relief,” his mother Joan Pistorius told NBC Nightly in a profile on her son.
Ten years into the 12 year illness, one of Martin's therapist's noticed a "glimmer in his eye". Tests were done, and revealed Martin had a fully functioning brain and was able to communicate. Enhancements in medical science showed he had been suffering from cryptococcal meningitis, a fungal infection of the tissues covering the brain and spinal cord.
“The rest of the world felt so far away when she said those words. As time passed, I gradually learned to understand my mother's desperation. Every time she looked at me, she could see only a cruel parody of the once-healthy child she had loved so much,” Martin told NBC.
Now, 15 years on, Martin is fully awake, speaks through a voice synthesizer and moves using a wheelchair. In 2008 he met Joanna, and one year later the pair were married.
Martin has since released his book Ghost Boy, which goes into detail about his experiences. "For so many years I was like a ghost. It was like I wasn't there, like I was invisible" he said.
Watch Martin and his family speak about his experiences here:
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