NEW YORK (CNN) – For 12 years, Martin Pistorius says he was trapped inside his own body. He suffered from an illness no one could explain and doctors said he was in some sort of vegetative state. What no one realized was that for most of those 12 long years, Martin was fully conscious.
Pistorius: “You can hear, see and understand everything around you. For me, that feeling of complete and utter powerlessness is probably the worst feeling I have ever experienced.”
Growing up in South Africa, martin was a happy and healthy child but in January of 1988, at 12 years old, he came home from school complaining of a sore throat.
Pistorius: “At first the doctors thought I had flu and prescribed the usual treatment. However, my condition steadily got worse and I was hospitalized.”
Doctors performed test after test on Martin, and treated him for tuberculosis and something called Cryptococcus meningitis, but they never made an official diagnosis. They just didn’t know.
Pistorius: “My body weakened and I lost the ability to speak and control my movements.”
Doctor’s thought he’d fallen into a vegetative state where he couldn’t see or hear anything around him. They didn’t know how to cure it and gave him two years to live.
Pistorius: “The doctors said to take me home and wait for me to die.”
Every morning, martin’s father would wake him up, bathe him, feed him and take him to a care center, never knowing his son was actually aware of everything that was happening to him.
Anderson Cooper: “I want to read something that you wrote in the book. You wrote, “Have you ever seen one of those movies in which someone wakes up as a ghost but they don’t know they’ve died? That’s how it was, as I realized people were looking through and around me, and I didn’t understand why.” How did you cope? I mean, feeling like you were invisible. How did you cope all of those years?”
Pistorius: “Mostly through escaping into my mind. I’d imagine all sorts of things, like being very small and climbing into a space ship and flying away. Or that my wheelchair would magically transform into a flying vehicle ala James Bond, with rockets and missiles. I would sometimes watch things move, whether it be how sunlight moved throughout the day. Or watching insects of some sort scurry about.”
He says he was abused in some of the care centers he was brought to over the years. However, one of the things that upset him the most was being placed in front of a television for hours at a time, with nothing else to watch but Barney.
Pistorius: “I often spent my days positioned in front of the TV. To this day I hate Barney. Not that I have anything against Barney but it triggers memories and emotions which are really difficult for me.”
Anderson Cooper: “You write about your mom as well and a time when your mom in the midst of distress said that essentially she wished you would die. And when I read that, I just kept thinking about for you, hearing that, you did hear it, you did understand what she said. How did you deal with that?”
Pistorius: “For her, it was like her son died when he was 12. So while I was very sad and upset by what she said, I understood where that was coming from.”
Anderson Cooper: “Were there times when you actually wanted to die? I mean not being able to communicate, trapped within your body, and trapped with your thoughts constantly like that. I mean, you wrote that there was a time you actually wanted to die??”
Pistorius: “Yes, in some of the darkest moments I not only wanted to die but I longed for death to realize me. I also often felt everyone would be better off if I were dead.”
One of his nurses came to believe that Martin understood what she was saying to him, his nurse, Virna. She urged his parents to get him tested again.
Pistorius: “She was the catalyst who changed everything, and had it not been for her I’d probably either be dead or forgotten in a care home somewhere.”
To his doctors’ astonishment, Martin showed signs he could understand. And slowly began to be able to communicate once again.
Anderson Cooper: What was that like?”
Pistorius: “I guess the best word would be relief, and also excitement, mixed in with a bit of trepidation. I remember leaving the assessment and feeling happy and, just, like wow. But also thinking to myself, what’s next?”
Martin’s physical health improved along with his ability to communicate. Now, he’s able to slowly type words into a computer that turn into speech, which is why we gave him some of our questions in advance. Martin went on to get a college degree. He now owns his website design business and even met and married a wonderful woman named Joanna.
Anderson Cooper: “What do you think the connection for you was?”
Joanna Pistorius: “I think initially the connection was physical, I thought he was so attractive. But we…”
Anderson Cooper: “He’s blushing (laughter)”
Joanna Pistorius: “From the start, we were really honest with one another and really listened without any judgment and therefore we could share our inner most feelings. We just understand one another.”
Pistorius: “Now we’re talking about starting a family. That’s something we’re really excited about.”
What happened to Martin is still a mystery and while doctors say he won’t be able to walk or talk again, he continues to grow stronger mentally and physically every day.
Anderson Cooper: “For people who are watching this – what do you want them to take away from your story?”
Pistorius: “I think that there is always hope, no matter how small. And also to treat everyone with kindness, dignity, compassion and respect, whether you think they understand or not. To never underestimate the power of the mind, the importance of love and faith and to never stop dreaming.”