After 12 years with locked-in syndrome, Martin Pistorius shares his overwhelming feeling of powerlessness upon realizing his true condition.
Martin Pistorius faced an unimaginable struggle when he was diagnosed with locked-in syndrome at the age of 12.
This rare condition left him unable to move or speak, while his mind remained aware of everything around him.
For over a decade, Martin lived in a state where he could hear and understand, but could not communicate.
He has shared his profound experience of realizing his condition.
What is locked-in syndrome?
Locked-in syndrome is a rare and debilitating neurological disorder where a person is conscious and aware but unable to move or speak.
Man reveals feeling powerless when suffering from “locked-in” syndrome for 12 years
His syndrome began in January 1988 when Martin returned home from school with a sore throat.
His parents took him to the hospital, where doctors were baffled by his rapid decline.
Initially, they suspected cryptococcal meningitis and tuberculosis of the brain, but treatment did not improve his condition.
Martin’s body weakened, and he fell into a vegetative state for four years.
During this time, his family was told that he had no hope of survival and that he had the mind of an infant.
Martin often felt like an empty shell, unaware of his surroundings.
“I remember around my 16th birthday people talking about the stubble on my chin and wondering whether to shave me.
“It scared and confused me to listen to what was being said because, although I had no memories or sense of a past,
I was sure I was a child and the voices were speaking about a soon-to-be man,” Martin revealed.
Martin realized his condition on his 16th birthday
However, on his 16th birthday, a significant change occurred.
He began to regain consciousness, but the experience was both thrilling and terrifying.
“I was able to hear, see, and understand everything around me but I had absolutely no power or control over anything.
“For me, that feeling of complete and utter powerlessness is probably the worst feeling I have ever experienced, and I hope I never have to experience it again,” the man shared.
He could hear conversations about his care but was unable to express his thoughts or feelings.
Martin described the overwhelming sense of powerlessness he experienced during this time.
He was aware of everything but could not control any aspect of his life.
This feeling of helplessness haunted him for years as he moved between home and care centers.
He feared he would die without anyone realizing he was conscious.
“What really got to me was the complete and utter powerlessness,” Martin explained.
“Every single aspect of your life is controlled and determined by someone else.
They decide where you are, what you eat, whether you sit or lie down, in what position you lie in, everything,” Martin said.
In 2001, a therapist named Virna van der Walt recognized a spark in Martin’s eyes. She believed he was more aware than others thought.
With her encouragement, his parents took him to the Centre for Augmentative and Alternative Communication (CAAC).
There, they discovered that Martin had regained consciousness. This moment was life-changing for him.
Using a computer equipped with communication software, Martin finally found a way to express himself.
He could select letters and words, allowing him to communicate with his family.
Martin Pistorius’s journey of recovery and accomplishment
In 2003, Martin Pistorius began working with therapist Virna at the care center.
He later met his wife, Joanna, and they emigrated to the UK, marrying in Essex in 2009.
Martin documented his journey in his book, *Ghost Boy*, and gave a TED Talk in 2015 titled “How my mind came back to life – and no one knew.”
In 2018, he welcomed a son, Sebastian, with Joanna, and he has continued to thrive in his personal and professional life.
“Since 2010, I have graduated with a first-class honors degree in computer science and learned to drive.
“I also published my book *Ghost Boy*, gave a TED Talk, started wheelchair racing, set a European record, earned a Doctorate, traveled far and wide, and became a father,”
“I am intensely grateful to the people who have passed through my life, and those who remain part of it, especially my wife.
For without them and the grace of God, none of this would have been possible,” Martin admitted.