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EXCLUSIVE: 'Ghost Boy' to Sputnik: 'Parents Were Told to Take Me Home to Die'

© Photo : Martin Pistorius / Martin-South-End-on-Sea2
Martin-South-End-on-Sea2 - Sputnik International
Sputnik has talked to author Martin Pistorius, who at the age of 12 began to succumb to locked-in syndrome - a condition which caused him to weaken and eventually stop moving and thinking.

Doctors informed his parents that he had the mind of a baby and that they should take him home to die.

However, Martin continued to live and when he was 16 he awoke and spent the next 8 years as a conscious mind trapped inside his own body.

Now married, working and getting worldwide attention for his autobiography “Ghost Boy,” Martin told his incredible story to Sputnik with the aid of a device that speaks the words he types into a computer.

Sputnik: In your book, "Ghost Boy," you describe how you were trapped in your own body for 12 years. How did that happen?

Martin Pistorius: In my book I talk about how I came home from school one day not feeling well. At first, the doctors thought I had the flu and prescribed the usual treatment. However, my condition steadily got worse and I was hospitalized. My body weakened, I lost the ability to speak and control my movements. I slipped away inside my body.

At first, I wasn’t aware of what was going on and everyone believed I had the intelligence of a 3-month-old baby. My parents were told they should take me home to die. But I didn’t die and about four years later I began to gradually become aware and conscious of what was going on around me. But nobody noticed that I was there.

© Photo : Martin Pistorius / Martin Pistorius and his father
Martin Pistorius and his father - Sputnik International
Martin Pistorius and his father

Sputnik: How did the illness affect your family?

Martin Pistorius: My entire family was deeply affected by what happened to me. In “Ghost Boy” I describe how my mother in particular had a difficult time coming to terms with what had happened to me. For her, she said it was like her son died when he was 12. My father was a tower of strength through it all. In fact, without him I don’t think I would be where I am today. My father and I have always had a close bond, probably from the day I was born.

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My father’s care and the fact the he never gave up was a comfort to me. But, at the same time, it was really hard for me. I knew the pain and distress my condition caused. That upset me and felt guilty about it even though, intellectually, I knew it wasn’t my fault. These days my parents are happy for me and very proud of me and of what I have achieved.

Sputnik: After several years of being unaware of the world around you, you began to wake up – could you tell us about that time in your life?

Martin Pistorius: For about the first four years I was completely unaware of my surroundings. Then, gradually, my mind started knitting itself back together. My memories are quite fuzzy about that period. I remember being moved, lifted from wheelchair back to bed, being fed and cared for. Once I was fully aware again and conscious about what was going on around me I could see, hear and understand everything, but nobody realized that.

I often say it was like being a ghost, which is why the title of my book in English is “Ghost Boy.” You can hear, see and understand everything around you, but you have absolutely no power over anything. For me the feeling of complete and utter powerlessness is probably the worst feeling I have ever experienced and I hope I will 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 to where you will be tomorrow or next week, and there is nothing you can do about it. 

© Photo : Martin Pistorius / Martin Pistorius
Martin Pistorius - Sputnik International
Martin Pistorius

Sputnik: How did you manage being invisible to everyone around you emotionally?

Martin Pistorius: Mostly through escaping into my mind. I would literally lose my mind and imagination. I would imagine all sorts of things, like being very small and climbing into a spaceship and flying away. My wheelchair would magically transform into a flying vehicle, like in a James Bond film, with rockets and missiles. I would sometimes watch things move, whether it be how sunlight moved throughout the day, or watch insects of some sort scurry about. But really, I lived in my mind to the point where at times I was oblivious to the world around me.

I would also have conversations with people in my mind. To be honest, I still find myself doing it. I sometimes find myself talking to Joanna in my mind when she is not with me, and I sometimes make a conscious effort to tell her when we are actually together.

Sputnik: When did someone realize that you were conscious and what happened afterwards?

Martin Pistorius: Verna, a quiet, soft-spoken, shy person started working at the day-care center I was in at the time. First I didn’t think anything of her; she was just another caregiver. I had seen so many of them come and go over the years. But then I began to notice and sense that she was different. She was special, the catalyst who changed everything. She treated me and spoke to me differently. Verna would talk to me as if I understood, almost expecting a response.

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When she eventually picked up on the subtle signs that I understood what she was saying and began to see me. It was amazing, really exciting, it gave me something else to focus on and think about. I think being seen and see another person validate your existence is incredibly important. In a sense, it makes you feel like you matter. Then I happened to see a program about augmentative and alternative communication on TV and realized that it could possibly help me. She spoke to my parents about taking me to be assessed.

In July 2001, I was taken for an assessment where I could demonstrate that I had the potential to communicate. Obviously, a lot has happened since then which I talk about in detail in my book.

© Photo : Martin Pistorius / Martin Pistorius
Martin Pistorius - Sputnik International
Martin Pistorius

Sputnik: Could you tell us about your life now? Your family, job, future plans?

Martin Pistorius: Life now is fantastic! As you know from the book, I’m married to the most beautiful lady. We have been married for eight-and-a-half years. Married life is wonderful; having someone to share my life with is unbelievably special. As I have become stronger physically and have more control over my body I was able to learn to drive. It’s awesome, I really enjoy driving. I have now also started doing wheelchair racing. It’s fantastic! I have been able to compete in a number of events. 

I’m looking forward to competing in more races this year. Currently, I’m working for myself doing web development and other computer-related work as well as from time to time giving talks to all over the world. I enjoy working and it’s a privilege to be able to contribute to society and do one’s best to earn a living. Our big dream for the future is to buy a house that suits our needs, especially with the wheelchair and we are [working] hard towards that. My wife and I live quite a simple life. We live in Essex in the UK.

Life is good, we go to the movies as often as we can, and we love taking long walks together and traveling. The world is such an interesting place with so much to see. Life, while not without challenges, is absolutely wonderful. I’m truly happy now. Life is worth living again. 

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