'Ghost Boy' - locked inside his body

Lynne Malcolm: Hi, you're with All in the Mind, I'm Lynne Malcolm. Today, a young man's escape from a lonely nightmare becomes a moving love story.

Reading: Have you 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 realised people were looking through and around me, and I didn't understand why. However much I tried to beg and plead, shout and scream, I couldn't make them notice me. My mind was trapped inside a useless body, my arms and legs weren't mine to control, and my voice was mute. I couldn't make a sign or a sound to let anyone know I'd become aware again. I was invisible. The ghost boy.

Lynne Malcolm: From Ghost Boy, the autobiography of Martin Pistorius, who at the age of 12 developed a mysterious neurological illness which left him mute and unable to move, locked inside his body. The doctors assumed that he was in a vegetative state and would not have long to live. Yet a couple of years after this, he began to wake up, but still could not communicate, so no-one knew it had happened.

Martin Pistorius is now 30, and we spoke via Skype, using a computer with speech software. He recalls emerging from his coma, only to realise he was locked in.

Martin Pistorius: My awareness was something that happened gradually, so it wasn't like one moment I was asleep and the next moment I was awake. It is quite difficult to describe, but I often say that it is sort of like looking at a grainy, completely out of focus image, and then gradually the colours start to flow back and the image becomes clearer and clearer, until it is crystal clear and in vibrant colour.

One of my earliest memories was of a skating board. I remember looking at it and feeling very confused and puzzled. I didn't know what it was. It really bothered me because I couldn't work out what it was, but at the same time it sort of felt like I should know. As my awareness returned, it took me a while to fully comprehend that I was trapped inside my body. Of course as the reality dawned on me that not only was I trapped in my body but that I was probably going to spend the rest of my life in this state was something I really struggled with.

Lynne Malcolm: So what was the worst part about being trapped in your own body without being able to communicate anything at all?

Martin Pistorius: I'd say the feeling of complete and utter powerlessness is probably the worst feeling I have ever experienced, and if I can help it I never want to experience again. It is like you don't exist and 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.

Lynne Malcolm: It's difficult to comprehend just how frightening this experience must have been, and to think that Martin Pistorius lived trapped in this lonely world for almost 10 years without anyone knowing what he was going through. Though the initial illness he had is still a mystery, it's become clear that he has what's known as 'locked-in syndrome'.

Dr Michele Veldsman is a post-doctoral research fellow at the Florey Institute of Neuroscience and Mental Health in Melbourne. Her work is mainly in stroke research.

Michele Veldsman: Locked-in syndrome refers to this condition where patients are awake and aware, but they've lost all voluntary control of movement, so they have essentially quadriplegia, they are unable to move, and it mimics a vegetative state but in fact the patients are completely aware and conscious. So a persistent vegetative state is of course a state of being awake but unaware, whereas locked-in is having the awareness there, and so it's quite a devastating affliction. It is actually quite rare, and in fact it's so rare that we don't really have good figures yet for how many people really experience this.

Lynne Malcolm: So what's actually happening in the brain?

Michele Veldsman: It typically occurs after damage to an area called the ventral pons, usually from ischaemic stroke, where there is a blockage in a blood vessel and blood can't get to this region of the brain and therefore the brain cells die. Or haemorrhagic stroke where there is a burst blood vessel and there is kind of bleeding on the brain. Occasionally from tumours, from traumatic brain injury. This area in the brainstem is incredibly important because it's a kind of relay station for motor and sensory networks in the brain, transmitting signals between the brain and the muscles and the rest of the body.

Lynne Malcolm: Michele Veldsman from the Florey Institute in Melbourne, and she says that Martin Pistorius's case is highly unusual in that no cause for his locked-in condition has been found.

During the years before people realised that Martin had full awareness, he could hear and observe things that perhaps he shouldn't have been privy to. They were sometimes funny, and sometimes very disturbing.

Martin Pistorius: Obviously there were a lot of conversations and even arguments about me. I heard people talk about illnesses they or a member of their family had. For example, one woman spoke about her husband having Alzheimer's, another talked about problems with her kidneys, and another about how a tumour almost left her childless. I remember someone talking about the night they discovered a poisonous snake in their house and how they ran around in terror trying to kill it. I was also an invisible observer and people can do the funniest things when they think nobody is watching, they will pick their nose or fart really loudly. Some will sing or talk to themselves in front of the mirror. I remember one lady prancing around imagining she was a model.

Lynne Malcolm: And of course it was very upsetting for your family, your parents, and you were observing how they were coping with that, and you overheard something very upsetting from your mother. Can you tell me about that?

Martin Pistorius: Yes, one night after yet another lengthy argument, my mother turned to me and told me I must die. Obviously in that moment that was a really difficult thing to hear, particularly coming from my mum. I was upset by it of course, but I've never really felt any hard feelings towards my mother for saying that. And it wasn't like I hadn't already thought about it. I feel sad, and thinking back I remember all the feelings and upset that everyone was feeling. I am not angry or resentful or anything like that. In fact I feel enormous compassion for my mum because it was a really hard time for her.

Lynne Malcolm: Things got really tough in Martin's family. His mother became heartbroken, and also fearful that Martin's condition was having a detrimental effect on his siblings. Her mental health suffered and she became suicidal. With his parents exhausted, Martin was then put into a care home. During these years he says he felt like he'd been stereotyped as an 'imbecile'.

Martin Pistorius: It was really tough. At first because I had so much to cope and deal with simply trying to survive, it wasn't something I thought much about. But later I remember often thinking and feeling that I didn't belong in the care homes I was in because I was far more intelligent than people thought and believed. Even when I could communicate there were still people who underestimated me, which I found frustrating, but at the same time also quite motivating because I want to prove them wrong.

Lynne Malcolm: Were you always treated well, or were there times when you really weren't treated the way you would like to be treated?

Martin Pistorius: I found being in a care centre extremely difficult, to put it very mildly. They are not nice places to be in. There are a lot of reasons for this but some of the main ones were extreme boredom. I don't know if someone can really appreciate what it is like to, for example, sit or lie for silence in the same position for hours and hours. It can be soul destroying. There was also a lot of mistreatment and abuse, especially in the residential care homes. I am not saying all staff that work in such places are bad, there were some really nice carers over the years, but equally some terrible ones. I had no real insight into the fact that there were other places. But certainly as the years went by, the feeling of 'I don't belong here' group. There were times that as much as I hated care homes, that I wished I'd be sent to ones that weren't for such profoundly intellectually disabled people. Lastly, I wanted to be at home and around my family.

Lynne Malcolm: And what were your worst fears during this time?

Martin Pistorius: I thought and really worried a lot about what would happen to me when my parents were no longer there. In a way it's a little ironic because even though there were people around me I was utterly alone, and yet probably my greatest fear was dying all alone in some care home. I never really thought or worried about nobody realising that was I was an intelligent person, I just didn't want to die alone.

Lynne Malcolm: And what strategies did you use in your mind to cope with your darkest thoughts?

Martin Pistorius: Mostly through escaping into my mind. I would literally lose myself in my imagination. I'd imagine all sorts of things, like 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, or playing cricket. Especially in the later years I spent a lot of time fantasising about cricket.

I would sometimes watch things move, whether it be how sunlight moved throughout the day, or watching 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. Perhaps there would be something I heard on the radio or television and I would have conversations about that. 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 then need to make a conscious effort to actually tell her what I wanted to say when we are together.

Lynne Malcolm: And at that time, how did you create your own purpose in life and create hope for yourself?

Martin Pistorius: To be honest, I don't know. It is partly something that comes from inside of me. I am a fighter, very determined, and generally quite an optimistic person. Even when I experience dark moments I tend not to stay down for very long. I also learned over the years because of what I have been through that how you think about things and what you focus on can make a huge difference. For example, not to get bogged down by a tragedy or something difficult you are going through. Allow yourself time to feel what you are feeling, reflect on it but then move on. Decide what are you going to do about it. How can you change things for the better? I was also lucky enough to meet someone who taught me about the importance of dreaming and having dreams for your life.

Lynne Malcolm: Martin Pistorius. And we'll hear shortly from that special someone who is now his wife, Joanna.

You're with All in the Mind on RN, Radio Australia, and your ABC radio app. I'm Lynne Malcolm, today entering the terrifying world of a young man with locked-in syndrome. We're hearing the computer-generated voice of Martin Pistorius in my conversation with him on Skype. Shortly he tells of the caring nurse who sensed that he may be aware.

First Dr Michele Veldsman explains the nature of locked-in syndrome, and how neuroscientists investigate it.

Michele Veldsman: Really the best ways that we have at the moment are to put patients in a brain scanner and see if their brain activity is similar to people who are healthy and aware and to see if they are able to modify their brain activity to be able to answer questions. So Adrian Owen, who is in Canada at the moment, he developed a paradigm to be able to test the kind of level of awareness that patients have in persistent vegetative state. But what he's found is that a number of patients have a level of awareness that suggests that they are actually locked-in. In a couple of studies the figure was around 20% of patients thought to be in a vegetative state were in fact locked-in, or at least were minimally conscious, so they were kind of slipping in and out of awareness, but there was definitely consciousness there.

Lynne Malcolm: So you can conclude that perhaps it's more often the case that people who appear to be in a vegetative state actually have more awareness.

Michele Veldsman: Yes, absolutely, and in fact with locked-in syndrome some large studies have found that it takes sometimes up to 2 ½ months for clinicians to realise that a patient is not in fact in a vegetative state, that they are actually aware and that they are locked-in. Quite often it's family members and carers. Actually in about half of the cases it's family members who detect these really subtle eye movements that we see in locked-in. And of course if somebody is completely locked-in then they won't even be able to control their eye movements, so there can really be no way of telling that the patient is actually aware.

Lynne Malcolm: So the only way would be, in that case, with a brain scan?

Michele Veldsman: Yes, Exactly. So Adrian Owen developed this paradigm, so the idea is that they would ask people questions, personal questions, the name of their brother, how many siblings they have, things like that…well, actually specifically yes and no questions, and they would ask patients to imagine playing tennis if the answer was yes, so is your name John, if it's yes imagine playing tennis. If it's no, imagine navigating around your house. And what they would see is these really distinct patterns of brain activity that would be answers to these questions, and then of course you can easily verify whether the patient is answering those questions correctly. And that sort of gives an idea that perhaps these patients, they have a level of awareness enough to be able to understand the questions and respond to them appropriately.

Lynne Malcolm: Michele Veldsman from the Florey Institute.

Though he was fully aware, Martin Pistorius was unable to communicate with others for years, until one of his carers, Virna van der Walt, noticed that he could use very small eye movements to respond to things she said.

Martin Pistorius: Virna, a quiet, soft-spoken, shy person who started working at the day care centre I was in the time. At first I didn't think anything of her, she was just another carer. 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 and spoke to me differently. Virna would talk to me as if I understood, almost expecting a response. 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 having another person validate your existence is incredibly important. In a sense it makes you feel like you matter. In July 2001 I was taken for an assessment where I could demonstrate that I had the potential to communicate.

Lynne Malcolm: Virna's faith in Martin opened out a whole new world of computer-assisted communication for him.

Dr Michele Veldsman explains the communication systems which can assist people with locked-in syndrome.

Michele Veldsman: The main technology would be brain–computer interfaces. So traditionally with locked-in the classical syndrome is that patients still maintain vertical eye movements. So a lot of the communication is done by moving the eyes, which can be very tiring. For some patients who have total locked-in syndrome, they don't retain vertical eye movements, so they have no movement whatsoever to be able to communicate. So in this case, brain–computer interfaces really are vital. At the moment these are done with electroencephalography, so EEG, putting the electrodes on the scalp. And the kind of paradigm is to have the patient think of the letter that they want to spell out the word that they are trying to spell out, and then they are shown a series of letters, and there will be a signal that shows familiarity, because every other letter will be a surprise, and when the letter is shown that they are thinking of, this will register a kind of signal of familiarity. And this is used then in sophisticated computer algorithms similar to predictive text messaging to be able to communicate and build out words and sentences.

Martin Pistorius: Getting a communications system in place and learning how to use it took time, effort and a lot of hard work. I remember one day when finally I had all the kit and software to communicate, looking at a communication grid, and thinking how on earth am I ever going to learn this. There were moments when I thought there is no way I will be able to do this. But I was determined to give it my all. I sometimes was amazed because a few months down the line those things I looked at thinking 'I am not sure if I can do this', I was now using.

From there, things just took off. I couldn't believe it. It was exciting, but also really daunting and even scary for me at times too because suddenly I was essentially flung back into the world, a world that I didn't really know or know how to live in. But nowadays communicating the way I do is so much a part of me I don't really think about it. It is also something that is constantly evolving. It is not without challenges. It's slower than normal speech. You can't really convey emotion, but you learn and improve things as you go along.

Lynne Malcolm: In 2008, Martin Pistorius met his soon to be wife, Joanna.

Joanna Pistorius: Yes, I was visiting a friend of mine, and Martin's sister used to live with her, and on New Year's Day in 2008 she decided to introduce us to her family. And we were talking to her parents and then suddenly she said, 'Oh yes, and I need to introduce you to my brother,' and Martin appeared on the screen, and I can remember he had such a lovely smile, and I actually thought, 'Oh wow, is this her brother, she never mentioned this before.' And we just started talking to him, at first myself and another friend, and then later on they all drifted away and I kept on talking to Martin.

Martin Pistorius: We seemed to instantly have a connection and I think we both knew there was something special between us. It was amazing.

Lynne Malcolm: What attracted you to her?

Martin Pistorius: I think what attracted me to Joanna was firstly she is drop-dead gorgeous, but then as we got talking, her amazing personality, intelligence, outlook on life and sense of humour really captivated me. I think deep down I just knew she was the one.

Lynne Malcolm: At that time, what sort of hope did you have that you could possibly establish a relationship with Joanna?

Martin Pistorius: At that time I didn't think there was much hope because she lived in the UK and I was in South Africa. I also assumed, given that she is such a catch, she is probably already married. But thankfully she wasn't. We started mailing and talking every night over Skype, and things just snowballed, and with every passing day we fell more in love.

Lynne Malcolm: So what did you talk about?

Joanna Pistorius: Well, I think we initially spoke about films we'd seen, just generally about our work, that kind of…you know, I really can't remember.

Lynne Malcolm: You must have also been fascinated about the experience that he had gone through. Did you talk much about that?

Joanna Pistorius: He did mention it to me, but you know what, I was so much in love I wasn't really interested in what happened. To me the past is the past. It's only later on that I really started to appreciate what he went through, but initially that wasn't our focus.

Lynne Malcolm: Give me a sense of how you communicate with each other now. You obviously use the computerised system that we've been using. But perhaps just describe how communication is different with Martin than it might be with somebody who doesn't have this condition.

Joanna Pistorius: We actually don't…Martin doesn't use the voice at home at all. He's got a device that basically looks like a keyboard with a little screen, so he types on there, but most of our communication, daily routine communication, is with signs or with gestures, facial expressions. So we can easily get through our whole morning, getting ready for work or doing normal daily routines, without saying a word.

Lynne Malcolm: And you must have had people wonder about your relationship with Martin and wonder about whether it was going to be a successful one. How have you coped with that and responded to people's reactions?

Joanna Pistorius: That was initially quite a challenge for me because I was so excited, being in love, and I could just see this bright future. Not all my friends shared those thoughts. They were quite sceptical actually and saying, you know, are you realistic, do you know what this means? To me, I couldn't understand why they focused so much on the things Martin couldn't do. To me it was more about what he can do, and they just couldn't see that. So I think because of my attitude of just 'no, we are going to do this', they stopped being negative and became happy with us. But it was a challenge. Not everybody thought it's the best thing.

Lynne Malcolm: And what do you think it is about Martin that is so strong and so resilient, to have gone through what he's gone through?

Joanna Pistorius: That's true, I've got a lot of respect for Martin. I just think he's such an amazing person. He's so determined. But also I think he's such an honest and just sincere person, that whatever he faces he's just honest about it and sees what is the best he can do about it.

Lynne Malcolm: I was wondering about Martin's book, Ghost Boy. What was that process like, and how is the book going?

Joanna Pistorius: Writing the book was a real challenge, I would say, because in our relationship, for example, we had to suddenly focus a lot on the past, and I could see while Martin was writing the book how upset he got about certain parts of the book. But it was also a way for us to reflect on it. Also it was a lot of hard work, and Martin, when he is writing, he uses a voice that reads for him, so I was hearing the book over and over for months on end. But no, it was a good process overall. Like we were saying, in the beginning of our relationship we never focused on the past, and the book he started writing I think three years after we met.

Lynne Malcolm: Did it bring up issues that were really hard for Martin to deal with?

Joanna Pistorius: Yes, definitely, definitely, that's true, and he was quite upset at times, reliving those experiences, which he has never done before since we met. And I felt a bit helpless as well because I'm trying to support him and be there for him, at the same time it's just such a hard thing that he had to go through and work through and reflect on.

Lynne Malcolm: So from your perspective, what seemed like the most difficult thing for Martin?

Joanna Pistorius: I would say reliving all the abuse and the different kinds of abuse, and focusing on those years and thinking about those years when he was in the institutions, that was definitely the hardest bit. And also that's where people were just not acknowledging that he existed.

Lynne Malcolm: So he was actually physically abused in the care…?

Joanna Pistorius: Yes, he was sexually abused as well.

Lynne Malcolm: So that would have been really difficult for him to go back and remember.

Joanna Pistorius: Yes, and I think when you write you don't only write, you have to think about it and write in detail what happened.

Lynne Malcolm: So what insights have you gained from your experience which may inform the way society views those who have brain injuries or conditions that leave them locked in to their bodies?

Joanna Pistorius: Anything is possible. And not to focus so much on the barriers, focus on what somebody can do and build on those, and keep on dreaming, never give up, even if it's small things, dream about it and start focusing on how you can achieve those things, because one dream leads to another.

Martin Pistorius: I think that there is always hope, no matter how small. Treat people how you would want to be treated, 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.

Lynne Malcolm: So what are your hopes for your future now, Martin?

Martin Pistorius: Essentially to have a good life, be successful in my work and to enjoy every moment. Joanna and I love travelling, seeing the world and exploring new places, so we really hope to do more of that. However, our big dream at the moment is to buy a house of our own, a house that suits our needs and of course, God willing, to start a family.

Joanna Pistorius: Oh, we have a lovely future, and I think Martin would be a great dad.

Lynne Malcolm: Thank you so much Martin and Joanna, all the best to both of you.

Joanna Pistorius: Thank you very much, it's such an honour.

Martin Pistorius: Yes, it has been lovely talking to you too.

Lynne Malcolm: Joanna and Martin Pistorius. Martin says that one of the proudest days of his life was when he graduated from a computer science degree in 2013. He now runs a web design business from his home in Essex in the UK. Martin Pistorius's book Ghost Boy: My escape from a life locked inside my own body is published by Simon & Schuster.

For more information about today's show and pictures of Martin and Joanna, go to the All in the Mind website, abc.net.au/rn, and choose All in the Mind in the list. From there you can leave comments and also sign up for the All in the Mind podcast.

Thanks to the team, Diane Dean and Andre Shabanov.

I'm Lynne Malcolm, thanks for your company. Do join me again next week at the same time. Bye for now.


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