Martin and Joanna at the church after just getting married.Jeff Turnbull
In 1988, at the age of 12, South African Martin Pistorius – a happy, slightly shy boy with a love of Lego, electronics and Pookie, the family dog – came home from school with a sore throat, and within a year had lost his ability to speak, control his muscles, eat, drink, listen and see. Strapped into a wheelchair, he was viewed by the world around him as a vegetable, a shell of the boy he once was. A degenerative neurological disorder had quickly claimed his body and mind.
But after a decade, Martin returned. And though at first he couldn't move his eyes, speak or indicate that he was conscious, he was able to once again hear and process what was said around him; he could watch whatever happened in his line of vision. He was the proverbial fly on the wall, his mind careening between fantasy and despair as the people around him hadn't yet awakened to the fact that his consciousness had returned. Eventually, they realized. And now Martin has relearned to communicate, works full time, is happily married and has written a best-selling book about his experiences. We asked him about being trapped in his body, his awakening, the abuse he endured and the power of hope.
What was it like to be trapped in your body, with everyone around you believing you were unaware?
It is difficult to truly describe what it was like. It took a while for me to become fully aware and conscious of everything going on around me. It was somewhat like looking at a grey, completely out-of-focus photograph and then gradually the colours start to flow back and the picture becomes clearer and clearer, until it is crystal-clear and in vibrant colour. I often say it was like being a ghost, which is why the title of the book is Ghost Boy. You can hear, see and understand everything around you, but you have absolutely no power over anything.
For me, that feeling of complete and utter powerlessness is probably the worst feeling I have ever experienced and [one] I hope I never have to experience again. It is like you don't exist; every single thing in your life is decided by someone else: Everything, from what you wear to what you eat and drink – even if you eat or drink – to where you will be tomorrow or next week. And there is nothing you can do about it.
What went through your mind when someone realized you were conscious?
It was amazing to finally, after all those years, be able to connect with another person. [My massage therapist, Virna,] would talk to me as if I understood, almost expecting a response. When Virna eventually picked up on the subtle signs that I understood what she was saying and began to see me, it was really exciting. It gave me something else to focus on and think about. I remember how my heart would race and how it felt like the fibre of my being wanted to break free. I think being seen and having another person validate your existence is incredibly important, not just for me in that moment, but for everyone. In a sense it makes you feel like you matter.
In your many years trapped in a seemingly brain-dead body, what did you learn about human nature?
That everyone has a story, their own struggles, challenges and insecurities. People, some more than others, put on a mask that they present to the world. However, directly or indirectly, what is going on behind that persona always seems to seep through. Through the way they react to things, the decisions that they make and what they say. Sometimes, I wondered why they couldn't have just been honest and true to themselves because they would sometimes rub people the wrong way, which probably wouldn't have happened had they been their authentic self.
Now that people know you are 'awake,' how do they treat you and each other differently?
I find it depends on the person. Most people treat me "normally" these days. Talking and interacting with me like they would any other person. People do, particularly when they first meet me, tend to find the silences uncomfortable and feel they need to say something. But they get used to it after a little while.
Some people will ignore me completely and talk to the person who is with me. Others think I am deaf and treat me accordingly. Occasionally, some people can be a little patronizing. But in general people treat me the same way they would any other.
In the face of boredom, pain, even sexual abuse at the hands of caregivers, you trained your mind to cope, to escape. How did you do that?
Escaping my reality was really tough. If there happened to be a radio on, that helped. I developed a number of coping strategies to help pass the time and basically to just keep my mind busy. I began to take note of how things changed over time. Everything from how the seasons changed, to things as simple as watching a wet floor dry. Watching how the sun moved across the room and how the light changed.
Another favourite of mine was, if there happened to be an insect of some or other kind, and even better more than one, then I could pretend they were racing each other.
But by far my best coping strategy was to escape into my imagination. I used to live in my imagination. I would have conversations with myself and other people all in my head. I'd imagine I was doing all sorts of things. For example, being very small and climbing into a spaceship and flying away. Or that my wheelchair would magically transform into a flying vehicle à la James Bond, with rockets and missiles. I would live inside my mind, sometimes to such an extent that I became almost oblivious to my surroundings.
Have you used that ability in your new life?
Yes, I find that I am very good at waiting around when I need to, I can keep myself busy for hours. I sometimes find myself talking to [my wife] Joanna in my mind when she's not with me. Something I often did in the past – having conversations in my mind. I then sometimes need to make a conscious effort to actually tell her what I wanted to say when we are together.
Though you admit that at times you gave up hope, and even tried to kill yourself, yours is an inspiring story of perseverance. What message do you have for others (medical community, caregivers, family, society at large)?
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. Never underestimate the power of the mind, the importance of love and faith and to never stop dreaming.
This interview has been condensed and edited.