A man who suffered from a rare neurological disorder called ‘locked-in syndrome’ has revealed how he managed day-to-day life with the condition.
Martin Pistorius was born in Johannesburg, South Africa in 1975 and had spent the first 12 years of his life enjoying a typical childhood.
However his life would be changed forever during the late 1980s when he began losing the ability to move or communicate. Doctors initially treated him for cryptococcal meningitis and tuberculosis of the brain, however none of the treatments proved successful.
For the next few years, Pistorius was completely locked inside his own body while his parents were informed by doctors that he was unlikely to ever reawaken.
Martin had begun to feel unwell at around 12 years old. (NBC News)
Pistorius’ would later begin to regain consciousness at age 16 and described the process of re-understanding his surroundings as like ‘a baby being born’. He believes it took him another three years to fully regain awareness of his surroundings.
However Pistorius wasn’t able to communicate his reawakened state with anyone around him. It would take another six years for his awakened state to be picked up on, after carer Virna van der Walt encouraged his parents to visit the Centre For Augmentative And Alternative Communication at the University Of Pretoria for support.
After confirming that he was indeed awake and able to understand what was happening around him, Pistorius’ parents invested in a specialist computer which aided his communication.
‘had absolutely no power or control over anything’
There’s of course the question of how Pistorius was able to pass the time for all those years, with now 49-year-old revealing in an interview with CNN that he coped by ‘escaping’ into his mind.
“Mostly through escaping into my mind. I’d imagine all sorts of things,” he explained.
“Like being very small, climbing into a spaceship and flying away or that my wheelchair would magically transform into a spaceship and fly away.”
Pistorius added that he would also spend hours watching insects ‘scurry about’ and follow the sunlight as it moved throughout the day to pass the time.
Pistorius described suffering from locked-in syndrome as ‘an empty shell’ in a 2023 interview with LADbible.
“I was able to hear, see and understand everything around me but I had absolutely no power or control over anything,” he said.
What is ‘locked-in syndrome’?
According to the NHS, ‘locked-in syndrome’ is a condition where a person is completely conscious and aware of their surroundings but unable to move their body or speak.
Cognitive function is unaffected by locked-in syndrome and sufferers usually retain eye-movement, which allows them to communicate.
Locked-in syndrome can be caused by a number of different things however it’s widely understood to be caused by traumatic brain injury and diseases which impact the pons area of the brain, which is the middle of the brainstem.
Martin now works in computers, is married and a father. (Supplied)
Through the use of his wheelchair and assisted communication systems Pistorius has since been able re-learn how to read, begin socialising and attend college.
He now works as a computer scientist and web developer alongside publishing a book about his condition and starting a family with his wife Joanna.
