Locked inLocked in
All In The Mind
At the age of 12 Martin Pistorius developed a mysterious neurological illness. He fell into a coma and was unable to move or communicate. It was assumed he had no awareness but a couple of years later he began to wake up—yet no-one knew. He was trapped inside his body for almost 10 years until he found a way to communicate. Using computer-generated voice technology he tells us about how he coped with this terrifying ordeal, and how he found the love of his life.
28:50•3 May 2015
Locked In but Not Gone: Martin Pistorius on Awareness, Love and Hope
Episode Overview
- Locked-in syndrome can look like a vegetative state, yet the person may be fully aware and conscious.
- Extreme powerlessness and boredom in long-term care can be emotionally devastating and worsen suffering.
- Small signs of awareness, like subtle eye movements, can be crucial in proving someone can understand and communicate.
- Imagination, deliberate thinking and choosing what to focus on can help create purpose and resilience in bleak circumstances.
- Treat every person with kindness, dignity, compassion and respect, whether you think they understand or not, and never stop dreaming.
“I think being seen and having another person validate your existence is incredibly important.”
What drives someone to seek a life beyond a body that no longer responds? This episode follows Martin Pistorius, who became aware again after a childhood coma yet spent nearly a decade unable to move or speak, assumed to have no consciousness. You'll hear him describe the chilling moment he realised he was "the ghost boy", invisible to everyone around him.
Using computer-generated speech, Martin explains how his awareness slowly returned, like a blurred grey picture gradually turning into "crystal clear and in vibrant colour". He talks openly about the terror of total powerlessness, long years in care homes, boredom so intense it felt soul-destroying, and the brutal mistreatment and abuse he experienced when nobody believed he could understand.
Neuroscientist Dr Michelle Veldsman adds context, breaking down locked-in syndrome, how it can mimic a vegetative state, and the brain-scanning methods used to detect hidden awareness. Her commentary shows how many more people than we realise might be awake inside bodies that can't respond. The emotional core of the episode is Martin’s inner coping strategies.
He shares how imagination, mental conversations, and a stubborn determination kept him going: allowing himself to feel pain, then choosing to focus on "how you can change things for the better". A key turning point comes when carer Verna notices tiny eye movements and treats him as if he understands, giving him the chance to use communication technology. Then the story shifts into a surprising love story.
Joanna recalls first seeing Martin on a computer screen, feeling an instant connection, and choosing to focus on what he can do rather than his limitations. Together, they talk about building a shared life, writing his book "Ghost Boy", and their hopes for a home and family.
If you’ve ever wondered how much strength a mind can hold when a body breaks down, this episode might leave you asking how many "ghost" people around you are waiting to be truly seen.
Do you want to link to this podcast?
Get the buttons here!
More From This Show
The latest episodes from the same podcast.