Martin Pistorius had just turned 12 when he began to experience the negative effects of a mysterious illness.
He came home from school one day with a sore throat—just days later he found himself unable to eat, sleeping almost constantly, and struggling to speak.
The 12-year-old was soon rushed to the hospital and put on life support, as doctors attempted to figure out what was wrong. His mother said that Martin’s last words as a child were spoken in the hospital: “When home?”
For the next 12 years, according to Pistorius, he lived with locked-in syndrome and was unable to move. His best-selling book, “Ghost Boy,” published in 2013, chronicled his life.
According to Today.com in a 2018 report, he is confined to a wheelchair and communicates with the aid of a device that speaks words that he types.
“For so many years, I was like a ghost. I could hear and see everything, but it was like I wasn’t there. I was invisible,” Pistorius said in 2016.
When he lost the ability to move, doctors informed his parents that he would likely die. But he didn’t.
“Martin just kept going, just kept going,” his mother said, according to NPR.
His father would get up at 5 a.m. and get him dressed, load Martin in the car, and take him to a special care center. “Eight hours later, I’d pick him up, bathe him, feed him, put him in bed, set my alarm for two hours so that I’d wake up to turn him so that he didn’t get bedsores,” Rodney, his father, told the news outlet.
And in one instance, to highlight the bizarre nature of his condition, Joan, Martin’s mother, recalled one incident where she told her son: “I hope you die.”
“I know that’s a horrible thing to say,” she said later. “I just wanted some sort of relief.”
Joan apparently didn’t think her son could hear what she said, but he was able to.
“Yes, I was there, not from the very beginning, but about two years into my vegetative state, I began to wake up,” Martin said.
When he was about 14 or 15 years old, he said, “I was aware of everything, just like any normal person.” However, he couldn’t move.
“Everyone was so used to me not being there that they didn’t notice when I began to be present again,” he told NPR. “The stark reality hit me that I was going to spend the rest of my life like that — totally alone.”
While he was trapped in his own body, Martin said he had to disengage his own thoughts.
“You don’t really think about anything,” Martin added. “You simply exist. It’s a very dark place to find yourself because, in a sense, you are allowing yourself to vanish.”
He went more into detail during an interview with The Daily Mail:
“My father’s faith in me was stretched almost to breaking point – I don’t think it ever disappeared completely. Each day Dad, a mechanical engineer, washed and fed me, dressed and lifted me. A bear of a man with a huge beard like Father Christmas, his hands were always gentle.
The Ghost Boy: The uplifting story ofhow Martin Pistorius survived a mystery paralysis http://t.co/yxexyPr4dt @Femail pic.twitter.com/ZUfvSxPTGq
— Marcel Rivera Paniza (@UtopiasArchitct) January 10, 2015
I would try to get him to understand I had returned, willing my arm to work. “Dad! I’m here! Can’t you see?” But he didn’t notice me.
He continued to undress me and my gaze slid to my arm. It was not moving: its only outward manifestation was a muscular twitch close to my elbow. The movement was so tiny I knew my father would never notice it.
Rage filled me. I felt sure I’d burst. I gasped for breath. “Are you OK, boy?” Dad asked as he heard my ragged breathing and looked up.
I could only stare, praying my silent desperation would somehow communicate itself.
“Let’s get you into bed, shall we?””
At one point, he decided to try and keep track of the sunlight to tell time in the room.
Slowly, his mind felt better and he was able to move his body again. By age 26, he was able to use a computer to communicate.
“When he gets the tools to communicate, he forges ahead,” his mother added to NPR.
Pistorius is now living in the United Kingdom with his wife, Joanna, according to the Washington Post.
He now wants people to hear his message of believing that anything is possible.
“Treat everyone with kindness, dignity, compassion and respect—irrespective of whether you think they understand or not,” he said. “Never underestimate the power of the mind, the importance of love and faith, and never stop dreaming.”
