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Menings | Opinion > Onderhoude | Interviews > English

Janet van Eeden in coversation with Martin Pistorius


Janet van Eeden - 2011-09-02

Title: Ghost Boy. My escape from a life locked inside my own body.
Author: Martin Pistorius with Megan Lloyd Davies
Publisher: Jonathan Ball
ISBN: 9781868424443

Click here to buy Ghost Boy from kalahari.com.

 




Review by Janet van Eeden

Once in a while a book comes along which breaks all boundaries. Ghost Boy falls into the genre of memoir, yet because it is so well written and its subject matter is so compelling it felt more like a page-turning novel.

Martin Pistorius, the subject of this book, describes his years which were nothing short of hell as he lived in a silent world with locked-in syndrome. After falling ill with an undiagnosed disease at the age of 12 he became physically and mentally weaker until he was completely wheelchair-bound and mute. Within a matter of months he changed from being a normal, healthy young boy into a completely dependent, paralysed body with the mind of a baby, according to medical experts. As he says in the book, for years he was just a “job” to most people around him, someone to be changed, fed and put to bed. At first he was completely unaware of his surroundings, but then, when he turned 16, his consciousness returned, slowly but surely. When he was 19, he was fully aware of everything around him, able to understand words spoken to and about him, able to follow television programmes and work out complex intrapersonal relationships between his caretakers. But the horror was that no one around him knew that he had “come back to life”.

Pistorius spent years of frustration and anguish, aware of everything around him, but unable to tell anyone that he was “there”. One of the saddest parts of the book is when he describes how he was abused by certain carers in a care facility he was taken to when his parents went on very rare breaks. It is such an indictment on humanity that there are people in these facilities who use their power over the most vulnerable to enact their basest desires.

This story falls into the classic tradition of the hero’s journey. Pistorius is the ultimate underdog whose indomitable spirit conquers insurmountable obstacles. It is with disbelief and relief that the reader finally learns of one person’s ability to see the soul behind the disabled body. When Virna, a carer at the day-care facility Pistorius attends daily, takes the time to recognise intelligence in his eyes when he is 21, she starts him on a path which allows him to communicate his most intimate thoughts to those around him. With the help of technology Pistorius is able to voice his thoughts and feelings at last. The floodgates open and Pistorius discovers an innate affinity for working with computers which allows him to come back to life as a human being. The ending of his story is almost unbelievably perfect.

I read hundreds of books a year, but this one has been a stand-out for me because of Martin Pistorius’s bravery in confronting almost incredible odds. You couldn’t make up a story like this. Special credit must be given to his ghostwriter, Megan Lloyd Davies, who has skilfully created a page-turning novel out of a heart-wrenching story. (I also asked her a few questions after this interview with Pistorius.)

After reading Ghost Boy, one can’t help feeling that any trials one is going through are minor. It is the most inspirational book I’ve read this year.

Q&A with Martin Pistorius

Martin, seldom have I read a story which touched me so deeply. You describe your experiences vividly in your book, but could you tell the readers of LitNet how one survives such unimaginable and painful isolation?

The primary way I coped was to lose myself in my imagination. I would spend hours imagining all sorts of things, I would have conversations with people, I’d fantasise about being a Formula 1 driver, a space man, a pirate, a spy à la James Bond, or a cricket star, etc. I was able to create this world in my mind, which really helped. I would also do what I could to pass the time, such as watch the sun move, watch things grow, and bugs, particularly ants scurrying about.  

Has anyone ever discovered what it was that caused your body to fail you when you were 12 years old? Is it something that still bothers you, not knowing what caused you those years of disconnection? Or have you made peace with not knowing?

Apart from testing positive for TB of the brain and Cryptococcal meningitis, no. No, it doesn’t bother me at all, to be honest. I am who I am and I’m okay with that. I don’t really dwell on the past or even really think about it; I live and enjoy life as much and as best I can.

I really felt for your parents and their confusion and heartache dealing with the loss of a child, effectively, when you “disappeared” at 12. You were in a very dark place yourself, but as a parent who has dealt with a sick child who crashed out of school for three years, I could understand their pain. It’s the hardest thing on the planet for parents to see their child suffering. Your father comes across as the most compassionate man. Whereas they couldn’t quite work out whether to believe in your relationship with Joanna when you first met her, has your marriage to her set their minds at ease and given them peace at last?

Yes. I think they were just being good parents and not wanting me to get hurt. But as time went by, and even before they had met Joanna in person, I think they knew. My father would refer to her as “the daughter-in-law (‘skoondogter’)”. I do think it was a tremendous adjustment for them to let go of a child that had been through all I had and seemed so frail at times, and comprehend that I was now an independent, married man. Now they love Joanna just as much as all their other children.

I was amazed to learn that you had an innate ability to understand computers after you finally found a way to communicate with those around you. Do you think this was an aptitude you had before the illness which finally came to light? Or do you think the years of being “locked in” allowed your brain to develop in a different way?

I don’t really know – perhaps a combination of the two. From the stories I have heard about how I was as a child I did seem to have a natural aptitude for such things. As well as having spent so much time living in my mind – perhaps that, too, helped to develop something … I don’t know.

I can’t help feeling sorry for the many others out there who don’t have someone as caring as Virna to give them a voice. Do you ever imagine what your life would have been like if Virna hadn’t realised your eyes were responding to her?

I don’t know if I’d go so far as to say I have imagined what it would be like, partly because I don’t really want to think about it. But yes, I have thought about it. I would most likely be stuck away in some institution waiting for death to release me – assuming, of course, I wasn’t already dead. While I don’t think about it much, I do realise how easily things could have been very different from how they are now had one or two things not happened. I am also often troubled by the thought of more people out there in similar situations to what I was in.

I was horrified to read about the appalling abuses you suffered at the hands of so-called carers in a facility where you left when your parents went on very rare holidays without you. Have you ever reported these heartless souls to ensure they don’t hurt others in their care the way they hurt you?

The short answer is no. It was reported to some extent, for example to the home I was in, but nothing came of that. I did consider reporting it elsewhere, such as the Medical and Dental Council, as well as laying criminal charges. But unfortunately you can’t do this anonymously and I was already so traumatised that I couldn’t bear the thought of having to go through and relive all that and face the people who did it to me. I also wasn’t sure if anyone would believe me if it came to proving it because it was my (a disabled person who speaks through a computer) word against theirs. So I asked for further action not be pursued, and I got on with my life. Perhaps that was wrong of me, and perhaps had I felt there was more support for victims I may have felt differently, but I just wasn’t strong enough at the time to do it.

One thing which struck me so profoundly is that your spirit is incredibly strong. If you could give anyone who is going through adverse circumstances some advice about how to face hard times, what would you say?

I’d say it’s okay to admit it’s hard and even to feel like giving up – but never to give up. I once read a quote which stuck with me; I’m not sure who said it, but it goes: “Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow.’”* Just keep going and try to find and have a dream. Don’t worry if you don’t know how – just carry on and don’t give up.

[* The quotation is by Mary Anne Radmacher, author of motivational books and inspirational quotes, an artist and a calligrapher.] 

It’s a cliché to say that love saved your life, but there is no escaping this truth. Your father loved you so unconditionally that he insisted that you stay with the family in your darkest years even though this almost tore the family apart. And if Virna hadn’t had the compassion and love to really “see” you, you would have gone through life in the most unimaginable isolation. Finally your dear wife, Joanna, saw beyond your physical self to love your soul. Do you agree that your ultimate salvation was being loved by a few very special others?

Yes, love is the most powerful thing and I believe absolutely in what was said in 1 Corinthians 13, which we had read at our wedding: “There are three things that will endure – faith, hope and love – and the greatest of these is love.”

Questions for your co-writer, Megan Lloyd Davies:

I have co-written or edited work for others before, so am very aware of the importance your skill had in the final result of this book. How did the actual writing of this book take place? Did you take notes from Martin or did you shape his words into a good novel shape?

As well as seeing Martin face to face and flying to see him and Joanna when they were on holiday in South Africa, we worked extensively by e-mail – me writing questions and Martin answering them. He worked incredibly hard and wrote an amazing number of words which took months and months to do. My main job is to draw people out, ask questions that they’ve often never asked themselves, and then explain their story to readers – with particular focus on the emotional dynamics of what happened. After listening to what Martin had to say I then imagined myself into his position. The best way I can describe what I do as a ghostwriter is to compare it to baking a cake: my subjects give me the key ingredients during interviews and I then blend them, bake them and ice them to give the book pace, texture, a coherent voice and the peaks and troughs that any narrative needs in order to propel a reader through it. We also made a conscious decision that this book would be a little more literary than some ghosted books and Martin gave me total support in writing it in a way that reflected this.

I had to admire your skilful story creation. This is an excellent book and it must be in no small measure due to your skill as a writer. How did you come to work on this project?

As a full-time ghostwriter I’m constantly on the lookout for stories and first made contact with Martin in February 2010 after seeing an article about him in a British newspaper. After an initial meeting we agreed to work on the project together. I felt sure that the book would touch everyone who read it because it’s such an amazing story of love in so many ways and the kind of strength that inspires people.

What was the daily progression of the creation of this book?

We spent hours and hours on e-mail together and Skyped a lot too! The book took about nine months in total to write – compared with most books I write that are turned around in four.

Could you tell the readers of LitNet your writing background and tell us what else you have written?

After working as a news reporter on a national paper I left to ghost-write my first book in 2005, about a mother who was wrongly convicted of murdering her babies – one of several women convicted after their children died of cot death. Since then I have written seven other books – including ones about a woman who was sex-trafficked from Ukraine to the UK, a former child soldier from Sudan and a boy with autism.

Thank you both so much for taking the time to answer my long questions. Well done both of you!!

Thanks so much for your feedback. It’s really good to hear, because as a ghostwriter you often get so distanced from a book once it’s published and so it’s nice to hear good things!!