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Locked-In Man

Locked-In Man

Locked-In Man
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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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