A man who experienced Total Locked-in Syndrome for 12 years has given a devastating account of his painstaking desire to be noticed, to be heard, and to be loved.
Martin Pistorius was a healthy child with a love for gadgets - until a mystery illness left him in a vegetative state from the age of 12.
He eventually lost the ability to move or speak, with doctors failing to find any sign of mental awareness. His parents, Rodney and Joan Pistorius, were told he was virtually in a coma and had no mental capacity whatsoever.
They took their son home to keep him comfortable, waiting for him to die.
"Martin just kept going," Joan told NPR recently. For 12 years, Joan and Rodney would care for him, taking him to a special care centre during the day and turning him every two hours to avoid bedsores.
Joan recalls whispering "I hope you die" into Martin's ear, thinking he wasn't there to hear it.
But Martin was aware of everything going on around him.
"The stark reality hit me that I was going to spend the rest of my life like that - totally alone."
"No one will ever show me tenderness. No one will ever love me," he thought.
In his book, Martin writes: "My mind was trapped inside a useless body, my arms and legs weren’t mine to control and my voice was mute. I couldn’t make a sign or sounds to let anyone know I’d become aware again."
To overcome the crushing depression of being locked inside his own body, Martin decided to disengage his thoughts completely, and put all his energyinto not thinking.
But there were things he couldn't avoid thinking about, like how he would be left watching Barney re-runs at his care centre all day.
"I cannot even express to you how much I hated Barney," he says.
His hatred for the purple dinosaur made him want to gain a measure of control, so he would track the movement of shadows across the room, allowing him to tell what time it was. This would help him figure out how much longer he would be forced to watch the children's show he hated.
This helped Martin to regain control of his mind, and he began thinking again. As his brain re-engaged, he made incredible medical developments and was eventually able to move again. He could finally show his family that he existed, and he was still there.
As he regained the use of his upper body over several years, Martin became able to type. He began communicating through a text-to-speech device, got a job, started his own company and eventually wrote a book.
Martin now lives in Harlow with his wife Chelsea. He has regained the use of his upper body and still speaks through his computer.Suggest a correction