Imagine getting caged in your own body. You are well aware of what’s going on but have no way to let people know what you think and how you feel. Will you survive if you are emotionally invisible to people you love?
Try putting yourself in the shoes of Martin Pistorius, a young boy who fell into a state where the only thing he had were his own thoughts. His story was made public through NPR’s new show, which focuses on human behavior, Invisibilia.
Before he fell ill, Martin was just a normal South African young boy whose thoughts were filled with everything related to electronics. But when he turned 12, a strange disease took its toll on his life. His doctor’s could not name what it exactly was, but they were suspecting it could be cryptococcal meningitis, a fungal infection that targets the tissues in the brain and spinal cord.
The disease was slowly eating Martin’s system up. At first, he became paralyzed. Then he lost his ability to make an eye contact. It got worse and worse until he was unable to speak.
The doctors told Rodney and Joan Pistorius, Martin’s parents, that eventually, it would feel like their son was not there at all. The doctors suggested them to let him rest at home and to attend to his needs until he passes.
But Joan said that her son did not die. “Martin just kept going, just kept going,” she narrated.
Still, Rodney and Joan took care of their son the best way they could.
For twelve long years, Rodney would often wake up around five in the morning to prepare for work. But first, he’d dress his son up to take him to a special care center.
Eight hours later, he’d return to where he left him and take him home. He would then bathe him, help him eat, and put him to sleep. Two hours later, he would wake up to turn him so he wouldn’t get any bedsore.
Joan admitted that for once, she hoped Marin would just die. She shared, “I know that’s a horrible thing to say. I just wanted some sort of relief.”
She thought he didn’t hear it, but Martin said that he clearly did.
Two years into his vegetative state, Martin started to “wake up,” beginning to see and understand what was happening around him. But still, he could not move his body. He admitted that he still felt alone. “Everyone was so used to me not being there that they didn’t notice when I began to be present again. The stark reality hit me that I was going to spend the rest of my life like that—totally alone,” he said.
Martin was left with no other company but his own thoughts. Sadly, even the things that were on his mind left him doomed. They weren’t all positive ones. Martin knew it wouldn’t do him any good, so he chose to shut out those thoughts, which he believed he got really good at. He noted, “You don’t really think about anything. You simply exist. It’s a very dark place to find yourself because, in a sense, you are allowing yourself to vanish.”
Martin spent most of his days at the special care center watching reruns of kids shows. But eventually, he got tired of it. He didn’t want to die that way.
Even though he couldn’t move, Martin wanted to have a little control over his every day. His first step was to learn how to tell the time based on the movement of the sun across the room he was staying.
The ugly thoughts, Martin tried to turn them into good ones. When he heard his mother say that she hoped he would just die, Martin used it as a reason to try even harder.
“The rest of the world felt so far away when she said those words. [But] As time passed, I gradually learned to understand my mother’s desperation. Every time she looked at me, she could see only a cruel parody of the once-healthy child she had loved so much,” Martin said.
When Martin began to face the bad thoughts head-on and change them, his body changed too. As his mind began to feel better, his system did the same.
Now 39 years old, Martin continues to try to live a good life with his family in Harrow, London.
It was unimaginably painful for a young man to live with only his own thoughts to guide him. To try to prove to everyone that you still exist while they’re so firm in their belief that you got no hope was a hard battle. But Martin proved that the courage to fight for your existence stems from your want to be loved again.
Martin Pistorius shares how he survived the hellish life of being “invisible” through a memoir titled Ghost Boy.
See the video here.
Here are more inspiring stories you have to read.