Locked-In Man 
 
 Invisibilia's Lulu Miller tells the story of Martin Pistorius, whose body began to slowly shut down when he was 12 years old. For years, he was locked in his own body with nothing but his thoughts. 
 
 LULU MILLER, HOST: 
 
 So from NPR News, this is INVISIBILIA. I am Lulu Miller. 
 
 ALIX SPIEGEL, HOST: 
 
 And I am Alix Spiegel. 
 
 MILLER: And today, we are discussing thoughts. 
 
 SPIEGEL: How to think about your thoughts. What we should think about our thoughts that we think. 
 
 MILLER: What do you think about your thoughts these days? 
 
 SPIEGEL: I think that the new way of thinking about thoughts is deeply helpful to how I think about thoughts. 
 
 MILLER: The new way being that you can just let them all go? 
 
 SPIEGEL: The idea that I don't have to take my thoughts seriously, I find deeply liberating and slightly disturbing when I think about all of the many, many hours that I and millions of people all over the country have spent trying to understand our thoughts and where they came from. 
 
 MILLER: Like all that's just time wasted? 
 
 SPIEGEL: Yeah. How do you feel about it? 
 
 MILLER: Well, I'm not sure if it's always time wasted. Like, I wonder if you can get a deeper peace if you really... 
 
 SPIEGEL: Dig in? 
 
 MILLER: Dig in. 
 
 SPIEGEL: Yeah. 
 
 MILLER: And to show you a pretty profound example of this... 
 
 SPIEGEL: Mhm. 
 
 MILLER: ...I want to tell you the story of Martin. 
 
 SPIEGEL: OK. 
 
 MILLER: So Martin Pistorius, in the late '70s, was a little boy growing up in South Africa. To tell his story, we're going to have to leave the question of thoughts for two or three minutes. But it will circle right on back. OK. 
 
 SPIEGEL: OK. 
 
 MILLER: But it all begins when he was 3 years old. And he marches into his parents' bedroom and tells them that when he grows up, he wants to be what he calls an electric man. 
 
 JOAN PISTORIUS: He used to insist that we buy him all sorts of electronic equipment. 
 
 RODNEY PISTORIUS: Resistors and transistors and you name it. 
 
 MILLER: These are his parents - Joan and Rodney Pistorius. 
 
 JOAN PISTORIUS: And he would build us things. 
 
 MILLER: Things like a flashing star for their Christmas tree, an alarm system to keep his little brother out of his Legos. 
 
 JOAN PISTORIUS: We had a broken plug. I thought nothing of it. I just said, Martin, please just fix the plug for me. And, I mean, here's live electricity in the house. And I'm asking a child younger than 11 to fix it. And he did. 
 
 MILLER: Where do you think he picked this up? 
 
 JOAN PISTORIUS: I have no idea. He was always going to be an electric man as he told me when he grew up. And then... 
 
 MILLER: Martin's life took an unexpected turn. 
 
 RODNEY PISTORIUS: He had just turned 12. 
 
 MILLER: He came home one day, saying he was feeling very sick. 
 
 JOAN PISTORIUS: And said, ma, I think I'm getting flu. 
 
 MILLER: But this wasn't a normal sickness. Martin began to sleep and sleep and sleep. 
 
 JOAN PISTORIUS: Like a baby, nearly all day. 
 
 MILLER: And when he woke up, he'd refuse food. 
 
 JOAN PISTORIUS: Rod used to sit there and force his mouth open. And I used to put the food in. 
 
 MILLER: He began getting nosebleeds. 
 
 JOAN PISTORIUS: So they tested him for everything under the sun from TB, Parkinson's disease, Wilson's disease, deficiency in copper, measles, and everything was negative. 
 
 MILLER: Still he got worse and worse. As the months wore on, everything about him slowly closed down. His ability to move by himself, his ability to make eye contact and finally, his ability to speak. 
 
 JOAN PISTORIUS: And the last thing he ever said because he was still in hospital was, when home. And all he wanted to know was when is he coming home? And - sorry... 
 
 RODNEY PISTORIUS: Hi, Lulu. 
 
 MILLER: Hi. 
 
 RODNEY PISTORIUS: He progressively got worse, probably in the second year of his illness. He was sleeping whenever we didn't wake him up. He was permanently lying down in the fetal position. 
 
 MILLER: And a test finally came back positive. 
 
 RODNEY PISTORIUS: Cryptococcal meningitis. 
 
 MILLER: The doctors told Joan and Rodney that Martin was beyond hope. 
 
 RODNEY PISTORIUS: As good as not, they - you know, he's a vegetable. He has zero intelligence. 
 
 MILLER: They were told to take him home. 
 
 RODNEY PISTORIUS: Try and keep him comfortable until he died. 
 
 MILLER: But one year passed, and two years passed. 
 
 JOAN PISTORIUS: Martin just kept going, just kept going. 
 
 MILLER: So Joan, Rodney and their two kids did their best to care for Martin's body. 
 
 RODNEY PISTORIUS: I'd get up at 5 o'clock in the morning, get him dressed, load him in the car, take him to the Special Care Center where I'd leave him. Eight hours later, I'd pick him up, bathe him, feed him, put him in bed, set my alarm for two hours so that I'd wake up to turn him so that he didn't get bedsores. 
 
 MILLER: All throughout the night? 
 
 RODNEY PISTORIUS: Yeah. Every two hours, I'd get up and turn him over and then get a little bit of sleep. And at 5 o'clock the next morning, I'd start the same cycle. 
 
 MILLER: That was their lives. 
 
 RODNEY PISTORIUS: Load him in the car, drop him off, pick him up. 
 
 MILLER: Three years turn to four. 
 
 RODNEY PISTORIUS: Bathe him, feed him, put him in bed. 
 
 MILLER: Four years turn to five. 
 
 RODNEY PISTORIUS: Five o'clock the next morning, I'd start the same cycle. 
 
 MILLER: Six years. Seven years. 
 
 RODNEY PISTORIUS: Load him in the car, drop him off, pick him up. 
 
 MILLER: Eight. 
 
 RODNEY PISTORIUS: Load him in the car, drop him off, pick him up. 
 
 MILLER: Nine. Ten. 
 
 JOAN PISTORIUS: This was so horrific. 
 
 MILLER: Joan remembers vividly going up to him one time and saying... 
 
 JOAN POSTORIUS: I hope you die. I know that's a horrible thing to say. I just wanted some sort of relief. 
 
 MILLER: Eleven years, 12. 
 
 RODNEY PISTORIUS: Load him in the car, drop him off, pick him up. 
 
 MILLER: Was there any life inside? 
 
 RODNEY PISTORIUS: I was not certain. 
 
 MILLER: It was impossible to know. 
 
 JOAN PISTORIUS: In my mind, I'd decided he'd died. 
 
 MARTIN PISTORIUS: Yes, I was there, not from the very beginning, but about two years into my vegetative state, I began to wake up. 
 
 MILLER: This is Martin. 
 
 MARTIN PISTORIUS: Yes, using the grid to speak. 
 
 MILLER: The grid is just a computer keyboard that allows him to quickly choose words and then have the computer read them out loud. 
 
 MARTIN PISTORIUS: Yeah. 
 
 MILLER: Now, I will get to how he regained consciousness and developed the ability to operate a keyboard and the wheelchair that he uses to get around. But what you need to know is that for about eight years, while all the world thought that Martin was gone, he was wide awake. 
 
 MARTIN PISTORIUS: I was aware of everything, just like any normal person. 
 
 MILLER: He thinks he woke up about four years after he first fell ill, so when he was about 16 years old. 
 
 MARTIN PISTORIUS: I suppose a good way to describe it is like an out-of-focus image. At first you have no idea what it is, but slowly it comes into focus until you can see it in crystal clarity. 
 
 MILLER: And somewhere in this reawakening to the world, Martin realized, to his horror, that he couldn't move his body. He couldn't even speak. 
 
 MARTIN PISTORIUS: I stared at my arm, willing it to move. Every bit of me condenses into this moment. 
 
 MILLER: Martin would later write a book about this called "Ghost Boy: My Escape From A Life Locked Inside My Own Body." And this is him reading a passage about one night when he tried as hard as he could to get his father's attention. 
 
 MARTIN PISTORIUS: (Reading) I am sitting in my bed. My heart is beating as my father undresses me. I want him to know, to understand that I've returned to him. 
 
 MILLER: But nothing in his body would obey. 
 
 MARTIN PISTORIUS: My father doesn't recognize me. 
 
 MILLER: It went like this again and again - attempt... 
 
 MARTIN PISTORIUS: Dad, can't you see? 
 
 MILLER: ...And failure, attempt and failure. 
 
 MARTIN PISTORIUS: Everyone was so used to me not being there that they didn't notice when I began to be present again. 
 
 MILLER: Though he could see and understand everything, it didn't matter. 
 
 MARTIN PISTORIUS: The stark reality hit me that I was going to spend the rest of my life like that - totally alone. 
 
 MILLER: And when he finally accepts this, that he truly is trapped, he said it was like something broke open in his mind. And it unleashed a fury of thoughts. 
 
 MARTIN PISTORIUS: I am totally alone. You are pathetic. You are powerless. You will be alone forever - alone forever - alone forever. 
 
 MILLER: He said the thoughts literally battered him... 
 
 MARTIN PISTORIUS: You are doomed. 
 
 MILLER: ...Humiliated him. 
 
 MARTIN PISTORIUS: Your family doesn't see you anymore. You will never get out. 
 
 MILLER: So here is another man overrun by thoughts. 
 
 MARTIN PISTORIUS: You will never get out. You are pathetic, powerless, totally alone. 
 
 MILLER: But unlike the rest of us, he can't call a friend to talk about it. He can't go on a run to clear his head. He can't even move his position in his chair. He is trapped in his head. And so what does he do? Well, one day he just intuitively invents the very therapeutic technique that so helped the man in our last story, S. Martin just starts detaching from his thoughts. 
 
 MARTIN PISTORIUS: No one will ever show me kindness. You can never get out. 
 
 MILLER: He refuses to engage them and lets them all just float by. And he says he got really good at it. 
 
 MARTIN PISTORIUS: You don't really think about anything. You simply exist. 
 
 MILLER: Can you describe what that feels like? I wonder, is it peaceful, or... 
 
 MARTIN PISTORIUS: No, I wouldn't say it is peaceful. It's a very dark place to find yourself because, in a sense, you are allowing yourself to vanish. Days, if not weeks, can go by as I close myself down and become entirely black within - a nothingness that is washed and fed, lifted from wheelchair to bed. 
 
 MILLER: Sometimes the nurses were careless with him. They'd pour scalding hot tea down his throat or leave him in cold baths sitting all alone. One of the nurses even began to intentionally abuse him. 
 
 MARTIN PISTORIUS: You are powerless. 
 
 MILLER: But instead of allowing himself to feel the sting of these thoughts... 
 
 MARTIN PISTORIUS: I sit for hours each day staring blankly into space. 
 
 MILLER: Though there was one thought he'd allow himself to engage and savor. 
 
 MARTIN PISTORIUS: I prayed and wished with all my might to die. 
 
 MILLER: So that, my friend, was his experience of letting thoughts go. 
 
 (SOUNDBITE OF CLOCK TICKING) 
 
 MILLER: Though, occasionally there were these things... 
 
 (SOUNDBITE OF TV SHOW, "BARNEY AND FRIENDS") 
 
 UNIDENTIFIED ACTOR: (As Barney) You can always count on having a fun day when you spend it with the people you love. 
 
 MILLER: ...These things that provided a kind of motivation, like "Barney." 
 
 (SOUNDBITE OF TV SHOW, "BARNEY AND FRIENDS") 
 
 UNIDENTIFIED ACTOR: (As Barney, singing) I love you. You love me. 
 
 MARTIN PISTORIUS: I cannot even express to you how much I hated Barney. 
 
 (SOUNDBITE OF TV SHOW, "BARNEY AND FRIENDS") 
 
 UNIDENTIFIED ACTOR: (As Barney, singing) We're a happy family. 
 
 MILLER: See, since all the world thought that Martin was basically a vegetable, they would leave him propped up in front of the TV watching "Barney" reruns hour after hour, episode after episode, day after day. 
 
 (SOUNDBITE OF TV SHOW, "BARNEY AND FRIENDS") 
 
 UNIDENTIFIED CHILDREN: (Singing) John Jacob Jingleheimer Schmidt. 
 
 MILLER: And one day, he decided he'd had enough. He needed to know what time it was because if he could know what time it was, he could know when it would end and, specifically, how much closer he was to his favorite moment in the day. 
 
 MARTIN PISTORIUS: Simply to make it to when I was taken out of my wheelchair and that for a brief moment, the aches and pains in my body could subside. 
 
 MILLER: Now, the problem was that Martin was rarely seated near a clock. So he calls upon these old allies - these thoughts - to help him carefully study the lengths of the shadows. 
 
 MARTIN PISTORIUS: I would watch how the sun moved across the room or how a shadow moved throughout the day. 
 
 MILLER: And he begins to match what he sees with little bits of information he's able to collect - what he hears on the television, a radio report, a nurse mentioning the time. It was a puzzle to solve, and he did it. Within a few months, he could read the shadows like a clock. 
 
 MARTIN PISTORIUS: Yes, I can still tell the time of day by the shadows. 
 
 MILLER: It was his first semblance of control. Simply knowing where he was in the day gave him the sense of being able to climb through it. 
 
 MARTIN PISTORIUS: Yes. 
 
 MILLER: And this experience ultimately led him to start thinking about his thoughts differently. 
 
 MARTIN PISTORIUS: I think your thoughts are integrated - connected and part of you. 
 
 MILLER: He realized that they could help him, and so he starts listening to them again. 
 
 MARTIN PISTORIUS: I'd have conversations with myself and other people in my head. 
 
 MILLER: And if a particularly dark thought came up... 
 
 MARTIN PISTORIUS: You are pathetic, powerless. 
 
 MILLER: ...He'd try to contend with it. Like one time, shortly after having the drool wiped from his chin by a nurse... 
 
 MARTIN PISTORIUS: You are pathetic. 
 
 MILLER: He happened to notice a song playing on the radio. 
 
 MARTIN PISTORIUS: Whitney Houston was singing the "Greatest Love Of All." In the song, she says, no matter what they take from me, they can't take away my dignity. 
 
 (SOUNDBITE OF SONG, "GREATEST LOVE OF ALL") 
 
 WHITNEY HOUSTON: (Singing) They can't take away my dignity. 
 
 MARTIN PISTORIUS: I sat there and thought, you want to bet? 
 
 MILLER: (Laughter). 
 
 (SOUNDBITE OF SONG, "GREATEST LOVE OF ALL") 
 
 HOUSTON: (Singing) Because the greatest... 
 
 MILLER: The point is reengaging with his thoughts transformed his world. Life began to have purpose. 
 
 MARTIN PISTORIUS: Oh, absolutely. I would literally live in my imagination, sometimes to such an extent that I became oblivious to my surroundings. 
 
 MILLER: Which you know... 
 
 RODNEY PISTORIUS: Load him in the car, drop him off, pick him up. 
 
 MILLER: ...Could be rough. 
 
 JOAN PISTORIUS: I hope you die. 
 
 MILLER: He was conscious when his mom told him that. 
 
 JOAN PISTORIUS: Oh, that's horrific when I think about it now. 
 
 MILLER: He was staring right back at her. 
 
 MARTIN PISTORIUS: The rest of the world felt so far away when she said those words. 
 
 MILLER: But this time, when the dark thought came up... 
 
 MARTIN PISTORIUS: No one will ever show me tenderness. 
 
 MILLER: ...He leaned into it and began to wrestle with it. Why would a mother say that? Why would my mother say that? 
 
 MARTIN PISTORIUS: As time passed, I gradually learned to understand my mother's desperation. 
 
 MILLER: He realized that it came from profound love for him. 
 
 MARTIN PISTORIUS: Every time she looked at me, she could see only a cruel parody of the once-healthy child she had loved so much. 
 
 MILLER: Which actually made him feel closer to her. And so onward he went, trying now to understand his dark thoughts instead of just ignoring them all, which brings me to the last act of his story - the way in which Martin is able to climb out. This is a long story involving inexplicable neurological developments, a painstaking battle to prove his existence in the face of doubt and... 
 
 MARTIN PISTORIUS: Anyway, the short version... 
 
 MILLER: The short version is that over time, Martin slowly regained some control of his body. By the time he was in his mid-20s, he could squeeze your hand on occasion. And he was getting better and better at holding himself upright in his chair. Now, the doctors told his parents that he still had the intelligence level of a 3-month-old baby. But one nurse, one nurse named Verna, was convinced that there was something there. And so she eventually convinced his parents to get Martin reassessed at another medical center, where he was given a test where he had to identify different objects by pointing at them with his eyes. And he passed, not with flying colors, but he passed. 
 
 JOAN PISTORIUS: I then gave up my job. 
 
 MILLER: That's his mom again, Joan, who came home to care for Martin, help him with his physical therapy and most important, purchase this kind of joystick for the computer. 
 
 JOAN PISTORIUS: A proximity switch, which is just something that you knocked. 
 
 MILLER: And though it took him about a year to get the hang of it... 
 
 JOAN PISTORIUS: We had like school - if you want to call it - four hours in the morning every single day. 
 
 MILLER: Once he did, everything changed because suddenly he had a way to select the words he wanted to say. 
 
 MARTIN PISTORIUS: I am cold. I am hungry. I want toast. 
 
 MILLER: And as words came back, gradually, so did other things. 
 
 RODNEY PISTORIUS: He started moving his eyes and moving his head and almost nodding, asking for coffee by stirring his hands around and things like that. 
 
 MILLER: They couldn't really explain it, but... 
 
 JOAN PISTORIUS: When he gets the tools to communicate, he forges ahead. 
 
 MILLER: OK. So wherever you are standing in your life, prepare to be lapped. Within two years of passing that assessment test, Martin gets a job filing papers at a local government office. 
 
 MARTIN PISTORIUS: I wanted to prove that I could do more than just speak words via a laptop. 
 
 MILLER: Around this time, his nurse savior Verna mentioned she's having trouble with her computer. And Martin, who has not tinkered with electronics since he was 12 years old fixes it. 
 
 MARTIN PISTORIUS: Repairing a computer is a bit like going into a maze. You might go down dead ends. But eventually, you find your way through. 
 
 JOAN PISTORIUS: It was absolutely flabbergasting. I couldn't understand it. 
 
 MILLER: Wow. 
 
 After that he scraps the government job... 
 
 RODNEY PISTORIUS: Yeah. 
 
 MILLER: ...Starts a web design company... 
 
 JOAN PISTORIUS: Yeah. 
 
 MILLER: ...Gets into college. 
 
 JOAN PISTORIUS: In computer science. 
 
 MILLER: He writes a book. 
 
 JOAN PISTORIUS: He's learning to drive. He always wanted to drive. 
 
 MILLER: He's learning to drive? 
 
 JOAN PISTORIUS: He is. 
 
 MILLER: Wow. 
 
 JOAN PISTORIUS: Martin achieves everything he wants to do. 
 
 MILLER: So how is it that Martin has been able to achieve all this? Now, I don't want it oversimplify it because it was many things - Martin's naturally strong will, flukes of electricity in the brain, a really dedicated family. But I do think that his decision to lean back into those thoughts way back when, instead of just spending his life detaching, in some way helped him, in part because it probably kept his mind occupied and allowed him to emerge this kind of well-oiled machine of mental ability, but also because I think his leaning into those dark thoughts in particular gave him a kind of self-understanding and humor about the human condition that allowed him to snag the very best thing in his life. 
 
 MARTIN PISTORIUS: My wife. 
 
 MILLER: This is Martin's wife. 
 
 MARTIN PISTORIUS: Joanna. 
 
 JOANNA PISTORIUS: When Martin talks about me or types about me, he always starts smiling. 
 
 MILLER: Joanna was a friend of Martin's sister. And the two of them first met over Skype. 
 
 JOANNA PISTORIUS: I was a manager for the social work team for a hospital social work team. 
 
 MILLER: Joanna says the thing that drew her to Martin... 
 
 JOANNA PISTORIUS: I turned around, and it was just this guy with this big smile. And it's such a warm personality. 
 
 MILLER: ...Was the way he began to interact with her. 
 
 JOANNA PISTORIUS: Unfortunately, I'm one of those people, I say something and then I, more often, need to say sorry I said it. 
 
 MILLER: But not with Martin. When she asked him how things work in the bathroom or what people do around you when they think you are not there... 
 
 JOANNA PISTORIUS: If I ask him anything, he'll give me an honest answer. 
 
 MILLER: And that perked her ears. 
 
 JOANNA PISTORIUS: There's no pretend. 
 
 MILLER: That first night, they talked for hours. 
 
 MARTIN PISTORIUS: She would speak, and I would type my response. 
 
 MILLER: The sister and the other friends drifted away, and Joanna just stayed there in front of the screen. 
 
 JOANNA PISTORIUS: I just really liked him. 
 
 MILLER: After that, she just kept wanting to Skype with him. 
 
 JOANNA PISTORIUS: Yeah. OK, well, he's in a wheelchair, and he doesn't speak. But I love this guy. He's amazing. It just so quickly turned into love. 
 
 MILLER: As for Martin - after over a decade convinced that he would be alone forever, he was pretty happy. 
 
 MARTIN PISTORIUS: My face would hurt from smiling so much. 
 
 JOANNA PISTORIUS: (Laughter). 
 
 MILLER: They were married in 2009. Martin was 33 years old. 
 
 SPIEGEL: So, Lulu... 
 
 MILLER: Yeah. 
 
 SPIEGEL: One story about this poor man trapped in his own body for 13 years, another about someone who is bombarded by horribly violent images - do you think maybe our first show is a little bit heavy? 
 
 MILLER: This was a heavy show. (Laughter). 
 
 SPIEGEL: Yeah. Let's hit the dance music. 
 
 (SOUNDBITE OF SONG, "SAN FRANCISCO") 
 
 THE MOWGLI'S: (Singing) Well, I've been in love with love... 
 
 SPIEGEL: This is INVISIBILA. It's a party, everybody. 
 
 (SOUNDBITE OF THE MOWGLI'S SONG, "SAN FRANCISCO") 
 
 THE MOWGLI'S: (Singing) Something binding us together, you know that love is strong enough. And I've seen time-told tales about that... 
 
 SPIEGEL: INVISIBILIA from NPR News is me, Alix Spiegel. 
 
 MILLER: And me, Lulu Miller. 
 
 SPIEGEL: The show is edited by Anne Gudenkauf, the best editor in the world, with help from Eric Nuzum, Matt Martinez (ph) Porschia Robertson-Meegas (ph) and Natalie Kaseka (ph). Production help today from Brendan Baker (ph) and Brent Balmon (ph). 
 
 MILLER: And now for our moment of nonsense. 
 
 I'm not reading it. I was totally not reading it. 
 
 SPIEGEL: You were. 
 
 MILLER: No. 
 
 SPIEGEL: OK. But I want to take it away. 
 
 MILLER: (Laughter) To take it away. 
 
 SPIEGEL: No. Just try it. 
 
 MILLER: I can't do it without you. I wasn't even looking at it. 
 
 SPIEGEL: Join us next week for more INVISIBILIA. 
 
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 This feature is not available right now. Please try again later. ||||| By Martin Pistorius 
 
 Martin Pistorius was a happy, healthy boy – until at the age of 12 a mystery illness left him in a virtual coma. Doctors never found the cause of his condition – even his mother gave up hope. 
 
 Yet in 1992, when Martin was 16, a miracle happened: he started to regain consciousness. But he was still trapped in his broken body, unable to communicate. 
 
 Slowly, however, he regained some control of his head and arms, and began to use a computer to write messages and operate a synthetic voice. Here, Martin tells the story of his remarkable recovery – and how he came to find love, a home and a job in England... 
 
 Soul mates: Martin Pistorius today with his wife Joanna 
 
 My mother looked at me, her eyes filled with tears. I wished that I could reassure her, stand up from my wheelchair and leave behind this shell of a body that had caused so much pain. 
 
 ‘You must die,’ she said slowly. ‘You have to die.’ 
 
 The rest of the world felt so far away when she said those words. She got up and left me in the silent room. I wanted to do as she bid me that day. I longed to leave my life. 
 
 As time passed, however, I gradually learned to understand my mother’s desperation and to forgive her. 
 
 Little by little I learned why it was so hard for my mother to live with such a cruel parody of the once healthy child she had loved so much. 
 
 Every time she looked at me she could see only the ghost boy he’d left behind. 
 
 Until the age of 12, I was a normal, healthy boy growing up in South Africa. But in January 1988 I came home with a sore throat and never returned to school. 
 
 In the months that followed, I stopped eating, started sleeping for hours each day and complained of how painful it was to walk. 
 
 My body weakened as I stopped using it and so did my mind: first I forgot facts, then familiar things like watering my bonsai tree, and finally even faces. 
 
 My muscles wasted, my limbs became spastic, my hands and feet curled in on themselves like claws. 
 
 I was completely unresponsive. I was in a virtual coma but the doctors couldn’t diagnose what had caused it. 
 
 I was treated for tuberculosis and cryptococcal meningitis, but no conclusive diagnosis was made. Medication after medication was tried – to no effect. I’d travelled beyond what medicine understood. I was lost in the land 
 
 where dragons lie and no one could rescue me. 
 
 It took about a year for the doctors to confess they had run out of options. All they could say was I had a degenerative neurological disorder, and that my parents Joan and Rodney should put me into an institution and let my illness run its course. 
 
 Politely but firmly the medical profession washed its hands of me. We were in effect told to wait until my death released us all. 
 
 At the age of 14 it was decided I should spend my days in a care centre, but I’d be taken home each night. Years passed with me lost in my dark, unseeing world. 
 
 I lay like an empty shell, unaware of anything around me. Then, one day, I started coming back to life. 
 
 Even as I became aware, I didn’t fully understand what had happened to me. I didn’t think of what I could or couldn’t do. 
 
 Thoughts rushed into my mind that I never considered voicing. I didn’t realise the body I saw jerking or still was mine. 
 
 My body moved, but only independently of my mind. My limbs felt distant, as if encased in concrete, and I couldn’t control them. 
 
 Just as a photographer adjusts a lens until the picture is clear, so it took time for my mind to focus. 
 
 Though my body and I were locked in an endless fight, my mind was getting stronger. Pieces of my consciousness knitted together. 
 
 I gradually became aware of each day and each hour in it. Most were forgettable but there were times I saw history unfold. Mandela becoming president in 1994 is a hazy memory but Diana’s death in 1997 is clear. 
 
 Martin, front, with his family in the last picture before the illness struck 
 
 My mind began to awaken at about the age of 16. By 19 it was fully intact: I knew who I was and where I was, and understood I’d been robbed of a real life. 
 
 I was completely entombed. At first I wanted to fight my fate by leaving some tiny sign to guide people back to me, like the crumbs Hansel and Gretel left to help find their way out of the woods. 
 
 But my efforts were never enough. 
 
 Have you ever seen one of those movies in which someone wakes up as a ghost but they don’t know that they’ve died? That’s how it was, as I realised people were looking through and around me. 
 
 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. 
 
 My father’s faith in me was stretched almost to breaking point – I don’t think it ever disappeared completely. Each day Dad, a mechanical engineer, washed and fed me, dressed and lifted me. A bear of a man with a huge beard like Father Christmas, his hands were always gentle. 
 
 I would try to get him to under-stand I had returned, willing my arm to work. ‘Dad! I’m here! Can’t you see?’ But he didn’t notice me. 
 
 He continued to undress me and my gaze slid to my arm. It was not moving: its only outward manifestation was a muscular twitch close to my elbow. The movement was so tiny I knew my father would never notice it. 
 
 Rage filled me. I felt sure I’d burst. I gasped for breath. ‘Are you OK, boy?’ Dad asked as he heard my ragged breathing and looked up. 
 
 I could only stare, praying my silent desperation would somehow communicate itself. 
 
 ‘Let’s get you into bed, shall we?’ 
 
 Loving family: Martin and his father Rodney as the illness began to take hold 
 
 While my father looked after nearly all my daily needs, my mother hardly came near me. Anger and resentment at what had happened poured out of her whenever she did. She wanted to put me into fulltime residential care; my father did not. 
 
 She believed my condition was permanent and that, because I needed so much care, having me at home would harm my brother David and sister Kim. 
 
 My father hoped I might get better. Mum was tortured by guilt that she hadn’t been able to save me. She was sure she had failed her child. 
 
 My mother’s unhappiness spiralled so far out of control that she tried to commit suicide about two years after I fell ill. 
 
 After taking handfuls of pills, she lay down to die. But even in her despair she wanted to tell Dad one last time how much she loved us all: this saved her. 
 
 When Dad saw what she’d done, he put her in the car and drove us to hospital. The doctors pumped Mum’s stomach. 
 
 Mum softened and became more involved in my care. She looked after me almost as much as Dad, made me the spaghetti and mince with peach chutney I liked and sometimes laid my head on her lap if I was on the sofa. 
 
 Slowly I regained enough control of my neck to jerk my head down and to the right, lifting it occasionally or smiling in reply to simple questions. 
 
 But people didn’t realise what my new movements meant: they thought it showed only the most basic improvement. No one considered my improved responses might mean my intelligence was intact. 
 
 To most people, I resembled a pot plant, to be given water and left in a corner. Though most carers looking after children like me were good, some were utterly callous. I was called ‘the obstacle’, ‘donkey’ and ‘rubbish’. 
 
 It was Virna van der Walt alone who offered me safe passage from my silent self. 
 
 Virna, a relief carer at the day centre, used to give me aromatherapy massages. She believed in me. She understood my language – the smiles, gazes and nods. 
 
 ‘Is your family well?’ Virna would ask as she massaged me. My eyes followed her as I lay on my back. I kept my face still to let her know someone was sick. 
 
 ‘Is your father ill?’ she said. I didn’t respond. ‘Your mother?’ Again nothing. 
 
 ‘Is it David?’ I gave Virna a halfsmile to show she was right. 
 
 ‘David is poorly then,’ she said. ‘What is it? Does he have a cold?’ I jerked my head down. ‘Tonsilitis?’ 
 
 I gave enough of a twitch of my feeble neck for her to understand; she moved down through ear, nose and throat until she reached the chest. I gave another half-smile. 
 
 ‘He’s got a chest infection?’ I knitted my eyebrows to let her know she was almost right. 'Not pneumonia?’ she asked. 
 
 I pushed air through my nose. ‘Bronchitis?’ Virna said at last. 
 
 Happiness surged through me. I was Muhammad Ali, John McEnroe, Fred Trueman. Crowds roared their approval as I took a lap of honour. 
 
 Virna smiled back at me. She understood. I would replay this moment again and again until we next met. It punctured the shroud of invisibility around me. 
 
 It was the beginning. In July 2001, when I was 25, I was taken, on Virna’s urging, to the Centre For Augmentative And Alternative Communication at the University Of Pretoria. 
 
 I was shown a large sheet of Perspex on a stand. Red lines divided the screen into boxes in which were such images as a ball, a running tap and a dog. 
 
 ‘I want you to look at the picture of the ball, Martin,’ said Shakila, the woman assessing me. I let my eyes search the screen. My eyes were the only part of my body I was master of. 
 
 They slid back and forth across the pictures until I found the ball. I fixed my eyes on it. 
 
 ‘Good, Martin, that’s very good,’ Shakila said. I felt afraid suddenly. Was I looking at the right picture? 
 
 ‘Now I want you to look at the dog,’ Shakila said. My eyes moved slowly, not wanting to make a mistake. I searched slowly till I found the dog. 
 
 ‘I’m sure you understand us,’ Shakila said later. ‘I can see from the way your eyes travel you can identify the symbols we ask you to and are trying to use your hand to do the same. 
 
 I feel sure we’ll be able to find a way to help you communicate. 
 
 ‘Wouldn’t you like to be able to tell someone that you are tired or thirsty? That you want to go to sleep?’ 
 
 Life partners: Martin and Joanna shortly after their engagement 
 
 I wasn’t sure. I’d never told anyone what I wanted before. Most people made thousands of decisions every day. I wasn’t sure I could make one. It was like asking a child who grew up in a desert to jump into the sea. 
 
 My parents bought me a computer loaded with communication software. 
 
 Just as you choose the words you speak naturally, I had to choose what I wanted my new computer ‘voice’ to say by picking words from grids – or pages – of vocabulary. 
 
 The words were represented by symbols which I selected with a switch. The speed with which I learnt surprised Mum, who had given up her job as a radiographer to help me. I seemed to understand instructions better than she did. 
 
 I sometimes wondered if her desire to find the words I wanted was even more powerful than mine. Did she see my rehabilitation as a penance? 
 
 In her urgency and dedication to me, I wonder if she was fending off memories of the dark years after I first fell ill, when her desperation and confusion got the better of her. 
 
 Slowly, I built up a vocabulary. One day we added the colours of the rainbow to my words. Frustration could grow if I didn’t make myself clear, but there were ways to show a word I wanted. 
 
 I would click on a symbol of an ear, then one of a sink. 
 
 ‘Sounds like sink? You want pink?’ Mum asked. I smiled: the word was added to my grid. Soon I got a new device. 
 
 It was a band that went round my head and had at its centre a small black dot which could shine an infrared beam on the computer screen with a slight turn of my head. 
 
 I could use the beam like a mouse. My feeble hands pressing one of my switches enabled me to choose a word I wanted. Then I would click on one last symbol – ‘speak’ – and my electronic voice would have its say. 
 
 After being asked to make a short speech at the health centre that shared a building with my care home, I started to experiment with my computer voice. 
 
 First, I put full stops into the middle of sentences so my computer voice would sound as if it was pausing for breath. 
 
 Next, I modified my American ‘voice’ to say ‘tomARto’ instead of ‘tomAYto’ to try and sound more as I would if I could speak. 
 
 I also had to choose from a dozen voices in my software which one to use. 
 
 I selected ‘Perfect Paul’, socalled because he was a good fit for me: not too high, not too gruff. 
 
 My ease with computers made my father suggest I might be able to help at the health centre. I started in 2003, working with Virna. 
 
 As I found I was able to fix problems on computers, I felt a new emotion: it puffed me out and made me feel vital. 
 
 Then I realised what it was: pride. My body was getting stronger as I used it more. On days when I was not working, I was at home practising on the computer. 
 
 I was a little sturdier when I sat upright. My neck muscles were strong enough for me to use my headmouse most of the time. I was starting to use the touchpad on my laptop a little because my right hand in particular was more reliable. 
 
 It seemed, like a new species, I was of interest to experts. People like me, who lose speech in the middle of life rather than at the start or end through illness or accident, are rare. 
 
 But the real novelty was that I’d learned so much so quickly about computer communication and I was teaching myself to read and write. 
 
 That led to me getting a paid position at the Centre For Augmentative And Alternative Communication for one day a week. Suddenly, life and I were colliding. 
 
 At every turn my eyes opened in wonder as I crashed into new experience: seeing a man with brightly coloured hair like parrot feathers running down the centre of his head; tasting a cloud of melting sugar called candyfloss; feeling the warm pleasure that comes with going shopping for the first time to buy Christmas presents for my family; or the sharp surprise of seeing women in short skirts. 
 
 I was starving for information: there was so much to know. I was learning to build websites and was accepted on to a university course, becoming one of the first two South Africans with non-functioning speech to graduate. 
 
 But one thing was missing. I don’t know if my longing for love was always a part of me or if its seeds were sown on a day I remember vividly. 
 
 It was late afternoon as a group of nursing students visited my care home. I was lying on a mattress when I felt someone kneel down beside me. 
 
 I looked up to see a young woman. Long brown hair framed her face: I was filled with a longing so strong it almost made me gasp. I wished I could stretch that tiny moment into forever. The girl who smelled of flowers and sunshine became the world to me. 
 
 Ever since I started to communicate, my hope was drawn towards women like a moth to a flame, only for me to be burned by their indifference. 
 
 When I met Joanna, I wondered if she would be different. She was a South African social worker who’d settled in Britain and become friends with my sister Kim, who was working there. 
 
 We met during a family web chat in 2008 and started emailing each other, culminating in Joanna suggesting we get together in Britain. I was curious about why she wanted to meet me. 
 
 ‘Because you’re the most honest man I’ve ever met,’ she said. ‘And because, although I’ve only known you for a few weeks, you’ve made me so happy. You make me laugh, you’re interesting and you understand what I say in a way no one else ever has before.’ 
 
 Still, I wasn’t sure. I explained that though I had made huge progress, I still needed a wheelchair and help with many daily activities. It didn’t matter, she said; we’d work it out. One night I wrote to her: ‘I can’t stop thinking about you. I love you. 
 
 I had to tell you.’ I’d known her for only a few weeks, yet I was sure I would know her for a lifetime. ‘My love,’ Joanna wrote next morning. ‘Do you know how long I’ve wanted to start a letter with those words? But until now there has never been an opportunity for me to do it. 
 
 How happy you make me. I love you so much it’s almost painful.’ My heart leapt when I read those words. 
 
 I knew, though, I was taking a gamble with Joanna because there would always be a fraction of doubt, however tiny, until we met. The greatest lesson I was learning with her, though, was that living life is about taking chances, even if they make you feel afraid. 
 
 After I arrived in Britain, we spent a few days at Joanna’s flat, before going to Scotland. We hardly saw the rolling hills outside our cottage. Instead we stayed in, sitting or lying side by side, always connected by a hand within a hand, a shoulder against a shoulder or a leg carelessly thrown across a lap. 
 
 Milestone: Martin and Joanna on their wedding day in 2009 
 
 After months of longing, we couldn’t bear to be apart even for a moment. I had never known a person who accepted me so completely and had so much peace inside. Joanna didn’t fill the spaces with mindless chatter. 
 
 Instead, we drifted on the current of simply being together. Sometimes I jumped almost in surprise as she touched me – my fingers flexing when she stroked my hand, or my jaw twitching when she kissed my eyes. It was as if my body couldn’t quite believe her gentleness. 
 
 I never had someone take pleasure in me before. It was the simplest but most perfect of feelings. 
 
 It was inevitable that I would move to Britain and settle with Joanna, in Harlow, Essex. I found work as a web designer and got used to the small flat we shared. 
 
 My electric wheelchair was too big to fit into it, so I could only move up and down one small strip of corridor in my manual chair, and I’d burn myself repeatedly trying to master the kettle and toaster. 
 
 But for me the two-metre sweep of floor that I could negotiate was my own Hollywood Boulevard, the garden I saw outside the window was the Alhambra, the tiny kitchen where I tried to cook the finest Parisian restaurant. 
 
 I became stronger in my first few months in England and I could move around easily in the small part of the flat accessible to my chair by pushing off the floorboards with my feet. 
 
 My right side was getting steadier all the time. I was not so good at opening bottles but I could get coffee into cups; I couldn’t tie my shoelaces but I was able to push the vacuum cleaner around. 
 
 So much of everyday life, though, was literally above me. I felt useless as I watched Joanna hang curtains, and I’d stare at things in cupboards soaring overhead. After deciding tocook supper one night, I tried to dislodge a bag of flour from a shelf using a broom and watched it hurtle down towards me, knowing there was nothing I could do to stop it. 
 
 Joanna found me – and the flat – covered in flour when she got home that night. 
 
 We married in June 2009 in a church in Essex. I had a ring made, a wide band of yellow gold, dotted with diamonds and filigree work of two mussel shells nestling together. 
 
 They represent our love: nothing can prise mussels apart once they fuse together. As I sat with my father waiting for Joanna’s arrival in a horse-drawn carriage, I contemplated the vows I was about to make: ‘For better, for worse, for richer, for poorer, in sickness and in health, ’til death do us part.’ 
 
 I would never say words that meant more. Each syllable, each line, would reverberate inside me. Was it possible that, one month shy of eight years since I was assessed by Shakila at the University Of Pretoria, I was sitting about to commit my life to Joanna? 
 
 It was she who has taught me to understand the true meaning of the Bible passage we were having read at the service: ‘There are three things that will endure – faith, hope and love – and the greatest of these is love.’ 
 
 My life has encompassed all three and I know the greatest of all is indeed love, in all its forms. I’d experienced it as a boy and man, as a son, brother, grandson and friend, I’d seen it between others and I know it could sustain us through the darkest of times. 
 
 Now it was lifting me closer to the sun than I ever thought I would fly. ||||| 
 
 Martin Pistorius in his wheelchair in 1992. (Courtesy of Martin Pistorius via HarperCollins) 
 
 "Lynchian," according to David Foster Wallace, "refers to a particular kind of irony where the very macabre and the very mundane combine in such a way as to reveal the former's perpetual containment within the latter." 
 
 Perhaps no other word better describes the onetime fate of Martin Pistorius, a South African man who spent more than a decade trapped inside his own body involuntarily watching "Barney" reruns day after day. 
 
 "I cannot even express to you how much I hated Barney," Martin told NPR during the first episode of a new program on human behavior, "Invisibilia." 
 
 
 
 Pistorius at a special needs center during his illness. (Courtesy of Martin Pistorius via HarperCollins) 
 
 The rest of the world thought Pistorius was a vegetable, according to NPR. Doctors had told his family as much after he'd fallen into a mysterious coma as a healthy 12-year-old before emerging several years later completely paralyzed, unable to communicate with the outside world. The nightmarish condition, which can be caused by stroke or an overdose of medication, is known as "total locked-in syndrome," and it has no cure, according to the National Institute of Neurological Disorders and Stroke. 
 
 In a first-person account for the Daily Mail, Pistorius described the period after he slipped into a coma: 
 
 I was completely unresponsive. I was in a virtual coma but the doctors couldn’t diagnose what had caused it. I was treated for tuberculosis and cryptococcal meningitis, but no conclusive diagnosis was made. Medication after medication was tried – to no effect. I’d travelled beyond what medicine understood. I was lost in the land where dragons lie and no one could rescue me. 
 
 When he finally did awaken in the early 1990s, around the age of 14 or 15, Pistorius emerged in a dreary fog as his mind gradually rebooted itself. 
 
 "I had a sense that something was wrong," he told "The Wright Stuff," a British TV program. "I suppose you can almost describe it like when you are trying to wake up from a dream, but can't." 
 
 At some point, between the ages of 16 and 19, Pistorius fully regained his consciousness -- only to be confronted by the jarring reality of his situation, according to NPR. He was trapped, marooned on a deserted island within himself, his only companion his despondent thoughts, which had begun to eat away at whatever hope he had left. 
 
 Pistorius told himself nobody would ever love him and that, for as long as he remained alive, he was doomed, according to NPR. 
 
 "It's like a cold, sinister frustrating and frightening feeling, which seems to throttle every cell in your body," he told "The Wright Stuff" about the feeling of being trapped. "It's was like you're a ghost witnessing life unfold in front of you and nobody knows you are there." 
 
 But Pistorius was there, so much so that he remembered with clarity the death of Princess Diana, the inauguration of Nelson Mandela and the Sept. 11 terror attacks. He watched his relatives go about their lives and listened to the things they said, though they had no idea he could hear them. 
 
 "But nobody thought I was even aware of them, let alone the fact that I not only knew about them, but was shocked or excited or saddened like everyone else," he told "The Wright Stuff." 
 
 He described the feeling in more detail for the Daily Mail: 
 
 My father’s faith in me was stretched almost to breaking point – I don’t think it ever disappeared completely. Each day Dad, a mechanical engineer, washed and fed me, dressed and lifted me. A bear of a man with a huge beard like Father Christmas, his hands were always gentle. I would try to get him to under-stand I had returned, willing my arm to work. "Dad! I’m here! Can’t you see?" But he didn’t notice me. He continued to undress me and my gaze slid to my arm. It was not moving: its only outward manifestation was a muscular twitch close to my elbow. The movement was so tiny I knew my father would never notice it. Rage filled me. I felt sure I’d burst. I gasped for breath. "Are you OK, boy?" Dad asked as he heard my ragged breathing and looked up. I could only stare, praying my silent desperation would somehow communicate itself. "Let’s get you into bed, shall we?" 
 
 Pistorius giving a presentation in Israel. (Courtesy of Martin Pistorius via HarperCollins) 
 
 His recovery began with Barney, the big purple dinosaur he was forced to watch on loop at the special care center where he spent his days, according to NPR. Pistorius decided he'd had enough and dedicated his thoughts to something that offered some modicum of control over his reality, such as telling time by tracking sunlight in a room. 
 
 "I can still tell the time of day by the shadows," he told NPR. 
 
 As his mind improved and Pistorius learned to "reframe" and "reintepret" his "ugliest thoughts," his health improved, too, according to NPR. By age, 26, he was able to use a computer to communicate, shocking his family. 
 
 "When he gets the tools to communicate, he forges ahead," his mother, Joan Pistorius, told NPR. 
 
 It wasn't long before he'd gotten a job, enrolled in college to study computer science, started a web company and, more recently, written a book, "Ghost Boy," which was published in 2011. The Sunday Times calls it "a deeply affecting and at times shocking book" that recalls "The Diving Bell and the Butterfly" -- "but with a happy ending." 
 
 Martin Pistorius and his wife, Joanna, tell their story in this 2010 video that was submitted to publishers as a supplement to the manuscript for "Ghost Boy." (Martin Pistorius) 
 
 Indeed, Pistorius also fell in love and got married. Speaking through a device that allows him to talk with the help of a computer keyboard, he can be seen on video discussing the book and his wife in the same sitting. 
 
 He's now living happily in the United Kingdom with his wife, Joanna, leading a life that is perfectly regular, which is exactly how he prefers it. 
 
 "I am happy with who I am," he told "The Wright Stuff." 
 
 "Yes, life has its challenges, but then again, whose doesn't." 
 
 The Ghost Boy: The uplifting story ofhow Martin Pistorius survived a mystery paralysis http://t.co/yxexyPr4dt @Femail pic.twitter.com/ZUfvSxPTGq — Marcel Rivera Paniza (@UtopiasArchitct) January 10, 2015 
 
 Read more from Science and Health: 
 
 A blast of cold air jump starts fat burning 
 
 Earth may be unsafe for humans in coming years 
 
 After music festival, ecstasy shows up in nearby river 
 
 She thought it was a chocolate candy bar. She was wrong 
 
 Video: Paralyzed woman can now lift objects with thoughts
– Martin Pistorius was a kid so into electronics his mom had no doubts about his ability to fix a broken plug for her when he wasn't yet 11 (which he did). But shortly after turning 12 in January 1988, things changed. He started sleeping more, barely eating, and ultimately effectively disappeared, unable to move or talk. The Daily Mail reports he was treated for cryptococcal meningitis and tuberculosis, but a final diagnosis was never determined. As NPR's new program Invisibilia reports, his parents were told "he's a vegetable." And for much of the decade-plus he spent in that state, Pistorius was treated like one. He passed his days at a care center, turned toward a television that played hours of Barney and Friends reruns. "I cannot even express to you how much I hated Barney," explains Pistorius—yes, Pistorius, who was fully aware for most of those years, even the moment when his despairing mother said to him "I hope you die." He tells his story to NPR via a keyboard that allows him to select words on a computer that communicates them. He believes he "woke up" sometime between ages 14 and 16, likening the experience to seeing a blurry image that slowly comes into focus. After realizing he couldn't communicate with the world, he was first dogged by a stream of awful thoughts ("alone forever" ... "you will never get out"), then trained himself to be detached from them, taking him to a "dark place [where] you are allowing yourself to vanish." But then those hours of Barney began driving him mad, so he began studying the sun and its shadows in the room in an effort to determine what time of day it was. As NPR host Lulu Miller puts it, "It was his first semblance of control. ... Life began to have purpose." As time passed, his faculties slightly returned: He could sit upright, for instance. At the urging of a worker at the center, he was assessed by a communication center at the University of Pretoria in July 2001. His family became aware he was aware; his mother quit her job and spent hours a day working with him. The Washington Post reports he's now 39, married, and living in Harlow, England. He published a memoir in 2011.