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Wednesday, January 28, 2015 – 9:50am
Photo by Chris Ford
BY PARKER J. PALMER (@PARKERJPALMER), WEEKLY COLUMNIST

A while back, I saw that my 21 year-old granddaughter had posted a quote from one of my books on her Facebook page. I was honored, of course.

Because my granddaughter is a lot smarter than I am about a lot of things, I thought I ought to take a look at what I wrote in that book.  Maybe there was something to it!

So here’s a story about what I was struggling with in my late thirties, when I lived and worked at Pendle Hill, the Quaker living-learning community near Philadelphia.

I was trying and failing to find a new direction for my life, and feeling very discouraged about it, when I got some life-changing counsel from an older woman named Ruth.

I’m older now than Ruth was then, but her counsel continues to guide me. If someone else finds it helpful, I’ll be glad I passed her wisdom along…

“If I were to discover a new direction, I though, it would be at Pendle Hill, a community rooted in prayer, study, and a vision of human possibility. But when I arrived and started sharing my vocational quandary, people responded with a traditional Quaker counsel that, despite all the good intentions, left me even more discouraged. ‘Have faith,’ they said, ‘and way will open.’

‘I have faith,’ I thought to myself. ‘What I don’t have is time to wait for “way” to open. I’m approaching middle age at warp speed, and I have yet to find a vocational path that feels right. The only way that’s opened so far is the wrong way.’

After a few months of deepening frustration, I took my troubles to an older Quaker woman well-known for her thoughtfulness and candor. ‘Ruth,’ I said, ‘people keep telling me that “way will open.” Well, I sit in the silence, I pray, I listen for my calling, but way is not opening. I’ve been trying to find my vocation for a long time, and I still don’t have the foggiest idea of what I’m meant to do. Way may open for other people, but it’s sure not opening for me.’

Ruth’s reply was a model of Quaker plain-speaking: ‘I’m a birthright Friend,’ she said somberly, ‘and in sixty-plus year of living, way has never opened in front of me.’ She paused, and I started sinking into despair. Was this wise woman telling me that the Quaker concept of guidance was a hoax? Then she spoke again, this time with a grin: ‘But a lot of way has closed behind me, and that’s had the same guiding effect.’

I laughed with her, laughed loud and long, the kind of laughter that comes when a simple truth exposes your heart for the needlessly neurotic mess it has become. Ruth’s honesty gave me a new way to look at my vocational journey, and my experience has long-since confirmed the lesson she taught me that day: there is as much guidance in what does not and cannot happen in my life as there is in what can and does — maybe more.”

The World’s End

When I was 8 years old, I read in LIFE magazine that in so many millions of years, the sun would burn out and life on earth would cease. This worried me, so I asked my parents, “If the world is going to end, how come we say “world without end” when we pray?” And they told me what the Bible says, that heaven and earth may pass away, but God remains. That relieved some of my anxiety, but I still wasn’t sure I liked the idea of the world ending, even if God was in charge.

Of course the world ends all the time. When I moved from California to Puget Sound in the 1990’s, my first Northwest winter felt like today’s gospel: the sun was darkened and the moon gave no light.

Who among us has not seen their world end? Adolescents exiled from childhood. Black teenagers robbed of their future. Elders deprived of their health. Unemployment …retirement …divorce … the death of a parent, a spouse, a child — in every one of these, a world comes to an end.

For anyone who has known serious loss, this is more than metaphor. The experience of grief can be so total and unrelenting that you can’t see anything beyond it. You can’t imagine the future. It feels like the end of the world.

The stars are not wanted now: put out every one;
Pack up the moon and dismantle the sun;
Pour away the ocean and sweep up the wood;
For nothing now can ever come to any good. [i]

W.H. Auden was invoking apocalyptic metaphors to express personal loss, but shared, public worlds also come to an end. As in 1789, or 1914. The Holocaust. Hiroshima. 9/11.My Lord, what a morning, when the stars begin to fall.

But why bring up such dreary stuff on this first day of the new Christian year? Shouldn’t we be breaking out the party hats, blowing horns and shouting “Happy New Year?” The wisdom of the Advent season is that it never begins with “A Holy Trinity Production,” or “The Creator of the World Presents.” No, it always opens with “The End.” Advent knows that every beginning involves some kind of ending. In this season’s Scripture, preaching and prayers, the present arrangements of collective and personal life are judged and found wanting. God’s imagination is far too rich and fertile to settle for our barren and diminished versions of human possibility.

Selfishness, greed, consumerism? Fear, racism and violence? Poverty, militarism, war, environmental degradation? That’s the best we can do? Really? God must be saying, “Come on, people. I made you a little lower than the angels, and this is what you came up with?”

George Eliot said “it is never too late to become what you might have been.” But to get to that “might have been” requires an Exodus into the wilderness beyond the way things are; an Exodus beyond even the best we can imagine for ourselves, into a place of unknowing, where only God possesses the language to speak our future into being.

So much of what we hear and pray and sing in Advent is profoundly disruptive. Bob Franke’s great Advent song, “Stir up your power,” gets right to it in the first line: This world may no longer stand. We are meant to be unsettled, to be driven beyond our narrow boundaries, our constricted realities, toward a beckoning horizon. The Christian life is a perpetual series of departures for a better place.

The world as it is – the world of racial hatred and toxic violence and economic injustice and perpetual war and addictive consumerism and pollution for profit and all the other evils which poison our common life – this world has no future in the emergent Kingdom of God.This world may no longer stand.

But the story doesn’t stop there. In my end is my beginning.[ii] Even when we have gone far astray, even when our story seems over, God remains deeply present in the processes of creation, tenderly leading and luring us into newness of life, making a way where there is no way, opening doors that none can shut.

Advent people do not just wring their hands or shake their heads over the latest news from Ferguson or the Middle East. We work and pray for something better. What we can do on our own is limited, but when we offer our priorities and energies to the larger purposes of God, Love will have its way with us.

As the Christian mystic Hadewijch put it in the thirteenth century:

Since I gave myself to Love’s service,
Whether I lose or win,
I am resolved:
I will always give her thanks,
Whether I lose or win;
I will stand in her power. [iii]

It is not always easy to stand in Love’s power and keep the faith. In some situations it is almost unimaginable. Forty years ago the African-American author James Baldwin wrote:

To be an Afro-American, or an American black, is to be in the situation, intolerably exaggerated, of all those who have ever found themselves part of a civilization which they could in no wise honorably defend – which they were compelled, indeed, endlessly to attack and condemn – and who yet spoke out of the most passionate love, hoping to make the kingdom new, to make it honorable and worthy of life. [iv]

This passionate mixture of protest and love sounds a lot like the Old Testament prophets who permeate our Advent lectionary. The very first reading of the season begins with a prophetic plea for history to be broken open by divine justice:

O that you would tear open the heavens and come down …
to make your name known to those who resist you,
so that the nations might tremble at your presence! [v]

Advent is not just a season of quiet waiting. It is also a time of protest and vision. Advent announces an insurgency against the way things are, a revolution to scatter the proud, cast down the mighty, raise the lowly, gather the lost, free the captive, and bind up the brokenhearted. Advent re-imagines the world as paradise restored, a new heaven and new earth suffused with the peace of God.

this is the day of broken sky
this is the space of conflagration-breath
speaking border-trespass
this is the feathered swoop of heaven
on the wing of now …
forking lightning into language …
breaking god into prison …
breaking the truth from jail! …

This is the fire-tongued fork of holy-ghost howl
making love on the tongue …
spitting flames of reconciliation
in the sky of war
making messiah-praise out of the air itself!

this is pentecost in your head
like becoming what you never dared
for the first time and forever

This ecstatic prophecy is from a poem by Jim Perkinson. [vi] He was talking about Pentecost, but his theme fits Advent as well:

“the day of broken sky”
the earth in conflagration
God breaking into the prisons
the truth being set loose at last
and “the fire-tongued fork of holy-ghost howl
making love on the tongue …
making messiah-praise out of the air itself!”

And each of us, all of us, becoming what we never dared.

When Jesus tells us to stay awake, he is warning us not to sleep through the day of God’s coming. Stay alert. Pay attention. Don’t miss it! Become what you never dared. Shake off the sleep of complacency, the sleep of complicity, the sleep of despair. Awake and greet the new dawn.

Jan Richardson describes this dawning reality in her beautiful poem, “Drawing Near.” [vii]

It is difficult to see it from here,
I know,
but trust me when I say
this blessing is inscribed
on the horizon.
Is written on
that far point
you can hardly see…

Richardson accurately expresses the sense of distant horizon that prevents the dominant reality of the moment from closing in on us and locking us in. That reality wants to be believed as fixed and final, permanent and stable. But the horizon calls every finality into question, disrupting its stability with the boundlessness of divine possibility. The horizon draws our attention from what is given to what may yet be. Keeping our eye on the horizon, feeling its pull, is the spiritual practice of Advent. Richardson’s poem expresses the deep longing produced by the distance between the already and the not-yet.

And then the poet discovers what every pilgrim knows: the goal of our long journey is something that has already been inscribed deep within us even before our journey began. Even before the day we were born, we were marked as God’s own forever.

And that is where Advent ultimately leaves us – finding that the thing we have been seeking so long has been with us all the time – within us, and all around us. While we have been walking our Camino to the Promised land, our feet have already been on holy ground, every step of the way. And the God of the far horizon turns out to be the path as well, keeping us company as we stride deeper and deeper into the world.

So when Advent people talk about the end of the world, we are speaking about end in the sense of purpose rather than termination. The word “apocalypse” means “unveiling,” and the apocalypse in our future will not be an annihilation, but a revealing of the world’s ultimate purpose and destiny.

Yes, all the inadequate, incomplete versions of world will come to an end (some of them kicking and screaming!), but creation as it was intended will be restored, not discarded. Like a poet who creates a new language out of old words, Love will remake the ruins and recover the lost. And the Holy One who is the mystery of the world will be its light and its life forever.

This Advent faith is expressed memorably in a short story by British writer Carol Lake, “The Day of Judgment.” On the Last Day of the world, God sails into England aboard a new Ark. But instead of bringing history to a close and pronouncing judgment on everyone, God leaves the Ark to enter the city of Derby. Heading for the run-down inner city neighborhood of Rosehill, he joins the crowd at a local pub, a multi-ethnic mix of the working poor and the unemployed. And there God gets so caught up in being with these people that he loses track of time, and the Ark sails away without him, heading off for the horizon of eternity. As the story describes it:

The Ark is on the edge of the horizon now, its destination the heartlessness of perfection. Most of the inmates already know what they are going to find – endless fruit, endless harmony, endless entropy, endless endless compassion, black and white in endless inane tableaux of equality. It sails off to a perfect world; the sky has turned into rich primary colors and in the distance the Ark bobs about on a bright blue sea.” [viii]

Meanwhile, God is still in that Rosehill pub, in the very heart of imperfection. If you had walked in there, you would have had a hard time picking him out. He blended right in. But if you were paying attention, you might notice that there was now something different about Rosehill. The old non-descript streets and dilapidated buildings had taken on a strange beauty. Maybe it was the warm slant of afternoon light, but people were beginning to see their neighborhood in a new way. And their own faces, too, seemed to glow with an inner radiance, as if they were carrying a wonderful secret, tacitly shared with everyone around them, as if they suddenly knew there was more to life than meets the eye.

They were still poor, the world was still a mess, but something new was in the air, a spirit of change was awakening. And from that day on, the people of Rosehill found themselves becoming what they’d never dared, for the first time and forever.

[i] W.H. Auden, “Twelve Songs (ix)”, Collected Poems, ed. Edward Mendelson (NY: Random House, 1976), 120

[ii] T.S. Eliot, “East Coker,” Collected Poems 1909-1962 (London: Faber and Faber Ltd, 1974), 191

[iii] Hadewijch: The Complete Works, trans. Mother Columba Hart, Classics of Western Spirituality (Mahwah, NJ: Paulist Press, 1980), 213

[iv] James Baldwin, No Name in the Street (NY: Dell, 1972), 194

[v] Isaiah 64:1-2

[vi] Jim Perkinson, “tongues-talk,” q. in Catherine Keller, On the Mystery: Discerning God in Process (Minneapolis: Fortress Press, 2008), 157-8

[vii] Jan Richardson, “Drawing Near” (http://adventdoor.com/2012/11/25/advent-1-drawing-near)

[viii] Carol Lake, Rosehill: Portraits from a Midlands City (London: Bloomsbury, 1989), 119

Einstein’s God: Krista Tippett and Theoretical Cosmologist Janna Levin on Free Will, Science, and the Human Spirit

by

“How we ask our questions affects the answers we arrive at… Science and religion… ask different kinds of questions altogether, probing and illuminating in ways neither could alone.”

Seven decades after a little girl asked Einsteinwhether scientists pray, Peabody Award-winning journalist Krista Tippett began interviewing some of the world’s most remarkable scientists, philosophers, and theologians about the relationship between science and spirituality in her superb public radio program On Being — the same trove of wisdom that gave us Sherwin Nuland on what everybody needs and Joanna Macy on how Rilke can help us live more fully. Tippett, who was awarded the National Humanities Medal for her ennobling work, collected the best of these dialogues in Einstein’s God: Conversations About Science and the Human Spirit (public library) — an immeasurably rewarding compendium featuring such contemporary luminaries as Parker Palmer, Freeman Dyson, Andrew Solomon, and Sherwin Nuland.

Lamenting that we have “lost a robust vocabulary for spiritual ethics and theological thinking” in the “polite, erudite, public-radio-loving circles” of public life, Tippett writes in the introduction:

The science-religion “debate” is unwinnable, and it has led us astray. To insist that science and religion speak the same language, or draw the same conclusions, is to miss the point of both of these pursuits of cohesive knowledge and underlying truth. To create a competition between them, in terms of relevance or rightness, is self-defeating. Both science and religion are set to animate the twenty-first century with new vigor. This will happen whether their practitioners are in dialogue or not. But the dialogue that is possible — and that has developed organically, below the journalistic and political radar — is mutually illuminating and lush with promise.

Illustration from Thomas Wright’s visionary 1750 treatise ‘An Original Theory,’ found in Michael Benson’s book ‘Cosmigraphics’—a visual history of understanding the universe. Click image for more.

Tippett invokes her grandfather, a “preacher of hellfire and brimstone” with a “large, unexcavated mind that frightened him” and “sharp wit, a searching attentiveness, a mysterious ability to perform mathematical feats in his head”:

People like him became the object of erudite parody, straw men easily blown down by prophets of reason. His kind of religiosity was small-minded at best, delusional at worst, and, most damnably, the enemy of science.

The mundane truth is this: my grandfather did not know enough about science to be against it. I summon his memory by way of tracing, for myself, why I’ve found my conversations with scientists to be so profoundly sustaining. It is not just that they are intellectually and spiritually evocative beyond compare. Cumulatively they dispel the myth of the clash of civilizations between science and religion, indeed between spirit and reason, that we’ve accepted as the backdrop for so many tensions of the modern West.

[…]

How we ask our questions affects the answers we arrive at. Light appears as a wave if you ask it “a wavelike question” and it appears as a particle if you ask it “a particle-like question.” This is a template for understanding how contradictory explanations of reality can simultaneously be true.

And it’s not so much true, as our cultural debates presume, that science and religion reach contradictory answers to the same particular questions of human life. Far more often, they simply ask different kinds of questions altogether, probing and illuminating in ways neither could alone.

Hardly anything illustrates this notion more crisply than a line from the bewitching novel A Madman Dreams of Turing Machines“To see some truths you must stand outside and look in.” — by astrophysicist and theoretical cosmologist Janna Levin, one of Tippett’s interviewees, who studies the shape and finitude of the universe. In her conversation with Tippett, Levin reflects on the relationship between mathematics and truth, central to both her novel — which explores the parallels between the extraordinary minds of computing pioneer Alan Turing and mathematician Kurt Gödel — and her life:

I would absolutely say I am also besotted with mathematics. I don’t worry about what’s real and not real in the way that maybe Gödel did. I think what Turing did, which was so beautiful, was to have a very practical approach. He believed that life was, in a way, simple. You could relate to mathematics in a concrete and practical way. It wasn’t about surreal, abstract theories. And that’s why Turing is the one who invents the computer, because he thinks so practically. He can imagine a machine that adds and subtracts, a machine that performs the mathematical operations that the mind performs. The modern computers that we have now are these very practical machines that are built on those ideas. So I would say that like Turing, I am absolutely struck with the power of mathematics, and that’s why I’m a theoretical physicist… I love that we can all share the mathematical answers. It’s not about me trying to convince you of what I believe or of my perspective or of my assumptions. We can all agree that one plus one is two, and we can all make calculations that come out to be the same, whether you’re from India or Pakistan or Oklahoma, we all have that in common. There’s something about that that’s deeply moving to me and that makes mathematics pure and special. And yet I’m able to have a more practical attitude about it, which is that, well, we can build machines this way. There is a physical reality that we can relate to using mathematics.

A 1573 painting by Portuguese artist, historian, and philosopher Francisco de Holanda, a student of Michelangelo’s, from Michael Benson’s book ‘Cosmigraphics’—a visual history of understanding the universe. Click image for more.

When Tippett stretches this into the difficult question of whether “the fact that one plus one equals two [has] anything to do with God,” Levin — a self-described atheist — echoes Tolstoy’s quest for meaning and answers with remarkable poetry and poise:

If I were to ever lean towards spiritual thinking or religious thinking, it would be in that way. It would be, why is it that there is this abstract mathematics that guides the universe? The universe is remarkable because we can understand it. That’s what’s remarkable. All the other things are remarkable, too. It’s really, really astounding that these little creatures on this little planet that seem totally insignificant in the middle of nowhere can look back over the fourteen-billion-year history of the universe and understand so much and in such a short time.

So that is where I would get a sense, again, of meaning and of purpose and of beauty and of being integrated with the universe so that it doesn’t feel hopeless and meaningless. Now, I don’t personally invoke a God to do that, but I can’t say that mathematics would disprove the existence of God either. It’s just one of those things where over and over again, you come to that point where some people will make that leap and say, “I believe that God initiated this and then stepped away, and the rest was this beautiful mathematical unfolding.” And others will say, “Well, as far back as it goes, there seem to be these mathematical structures. And I don’t feel the need to conjure up any other entity.” And I fall into that camp, and without feeling despair or dissatisfaction.

The emboldening poetics of Levin’s orientation to the universe and its meaning — at the heart of which is the same inquiry Alan Watts tussled with in probing what reality is— comes alive in this passage from her novel:

In the park, over the low wall, there are two girls playing in the grass. Giants looming over their toys, monstrously out of proportion. They’re holding hands and spinning, leaning farther and farther back until their fingers rope together, chubby flesh and bone enmeshed. What do I see? Angular momentum around their center. A principle of physics in their motion. A girlish memory of grass-stained knees.

I keep walking and recede from the girls’ easy confidence in the world’s mechanisms. I believe they exist, even if my knowledge of them can only be imperfect, a crude sketch of their billions of vibrating atoms. I believe this to be true… I am on an orbit through the universe that crosses the paths of some girls, a teenager, a dog, an old woman…

I could have written this book entirely differently, but then again, maybe this book is the only way it could be, and these are the only choices I could have made. This is me, an unreal composite, maybe part liar, maybe not free.

Another 16th-century painting by Francisco de Holanda from ‘Cosmigraphics.’Click image for more.

Therein lies the obvious question — a question raised memorably and somewhat controversially by C.S. Lewis — of free will in a universe of fixed laws. Levin tells Tippett:

I think it’s a difficult question to understand what it means to have free will if we are completely determined by the laws of physics, and even if we’re not. Because there are things—for instance, in quantum mechanics, which is the theory of physics on the highest energy scales—which imply that there is some kind of quantum randomness so that we’re not completely determined. But randomness doesn’t really help me either.

[…]

There is no clear way of making sense of an idea of free will in a pinball game of strict determinism or in a game with elements of random chance thrown in. It doesn’t mean that there isn’t a free will. I’ve often said maybe someday we’ll just discover something. I mean, quantum mechanics was a surprise. General relativity was a surprise. The idea of curved space-time. All of these great discoveries were great surprises, and we shouldn’t decide ahead of time what is or isn’t true. So it might be that this convincing feeling I have, that I am executing free will, is actually because I’m observing something that is there. I just can’t understand how it’s there. Or it’s a total illusion. It’s a very, very convincing illusion, but it’s an illusion all the same.

In a sentiment that calls to mind Nobel-winning psychologist Daniel Kahneman’s revelatory work on intuition, exposing the lack of correlation between our confidence in our beliefs and the validity of the evidence behind them — something that often manifests as “the backfire effect” — Levin considers the nature of these convincing illusions to which human nature so easily succumbs:

Our convincing feeling is that time is absolute. Our convincing feeling is that there should be no limit to how fast you can travel. Our convincing feelings are based on our experiences because of the size that we are, literally, the speed at which we move, the fact that we evolved on a planet under a particular star. So our eyes, for instance, are at peak in their perception of yellow, which is the wave band the sun peaks at. It’s not an accident that our perceptions and our physical environment are connected. We’re limited, also, by that. That makes our intuitions excellent for ordinary things, for ordinary life. That’s how our brains evolved and our perceptions evolved, to respond to things like the Sun and the Earth and these scales. And if we were quantum particles, we would think quantum mechanics were totally intuitive. Things fluctuating in and out of existence, or not being certain of whether they’re particles or waves — these kinds of strange things that come out of quantum theory — would seem absolutely natural…

Our intuitions are based on our minds, our minds are based on our neural structures, our neural structures evolved on a planet, under a sun, with very specific conditions. We reflect the physical world that we evolved from. It’s not a miracle.

And yet, crucially, the lack of evidence for free will is by no means a license to abdicate personal responsibility in how we move through the world:

If I conclude that there is no free will, it doesn’t mean that I should go run amok in the streets. I’m no more free to make that choice than I am to make any other choice. There’s a practical notion of responsibility or civic free will that we uphold when we prosecute somebody, when we hold juries or when we pursue justice that I completely think is a practical notion that we should continue to pursue. It’s not like I can choose to be irresponsible or responsible because I’m confused about free will.

Six decades earlier, and long before the dawn of modern astrophysics, Anaïs Nin madea humanistic case for the same.

Einstein’s God is a spectacular read in its entirety, as is Levin’s novel. For more perspectives on the relationship between science and spirituality, step into the cultural time machine with Carl Sagan on science and religion, Flannery O’Connor on dogma, belief, and the difference between religion and faith, Alan Lightman on science and spirituality, Ada Lovelace on the interconnectedness of everything, Jane Goodall onscience and spirit, and Sam Harris on spirituality without religion.

 

Krista Tippett is always the best.  Thank You!

Trapped In His Body For 12 Years, A Man Breaks Free

martin

JANUARY 09, 2015 3:18 PM ET

Copyright ©2015 NPR. For personal, noncommercial use only. See Terms of Use. For other uses, prior permission required.

ROBERT SIEGEL, HOST:

In this part of the program we bring you the story of parents who thought their son was lost, and a son who couldn’t tell them that he wasn’t. It comes to us from NPR’s newest program on human behavior. It’s called Invisibilia. The show’s co-host, Lulu Miller, tells us about a man in a coma whose mind eventually began to function again, but not his body, and because of that, for years the only relationship he could have was with his own thoughts.

LULU MILLER, BYLINE: When Martin Pistorius was a little boy growing up in South Africa, he was mostly thinking about electronics.

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: 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.

R. PISTORIUS: He had just turned 12.

MILLER: He came down with a strange illness. The doctors weren’t sure what it was, but their best guess…

R. PISTORIUS: Cryptococcal meningitis.

MILLER: No.

R. 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: Eventually he lost 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, ’cause he was still in hospital, was when home. And all he wanted to know was when is he coming home? And – sorry…

MILLER: Martin would eventually fail every test for mental awareness the doctors could think of, and Rodney and Joan were told that he was…

R. PISTORIUS: As good as not there. You know, he’s a vegetable. He has zero intelligence.

MILLER: They were told to take him home.

R. 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 and Rodney and their two kids did their best to care for Martin’s body.

R. 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: That was their lives.

R. PISTORIUS: Load him in the car, drop him off, pick him up.

MILLER: Three years turned to four.

R. PISTORIUS: Bathe him, feed him, put him in bed.

MILLER: Six, seven, eight years.

JOAN PISTORIUS: This was so horrific.

MILLER: Joan remembers vividly looking at Martin in bed 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: It was a thought she never would’ve shared out loud, but it had been 10 years and she didn’t think her son was there to hear it.

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.

M. 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.

M. PISTORIUS: Yeah.

MILLER: Though he never regained his speech, he did regain enough body strength to operate a wheelchair by himself. Today, he almost looks like a former athlete. His upper body is really strong, he’s got salt and pepper hair, bright blue eyes and a big smile. And Martin thinks he first woke up when he was about 14 or 15 years old, so about two years after he first fell ill.

M. PISTORIUS: I was aware of everything, just like any normal person.

MILLER: But he couldn’t move his body.

M. 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, he couldn’t find a way to let anybody know.

M. PISTORIUS: The stark reality hit me that I was going to spend the rest of my life like that – totally alone.

MILLER: He was trapped with only his thoughts for company.

M. PISTORIUS: I would never be rescued.

MILLER: And they weren’t particularly nice thoughts.

M. PISTORIUS: No one will ever show me tenderness.

MILLER: He said they battered him, berated him.

M. PISTORIUS: No one will ever love me.

MILLER: And, of course, there was no way to escape.

M. PISTORIUS: You are doomed.

MILLER: Like, take a walk or talk to a friend.

M. PISTORIUS: You will never get out.

MILLER: And so he figured his only option…

M. PISTORIUS: You are powerless.

MILLER: Was to leave his thoughts behind.

M. PISTORIUS: You will be alone forever.

MILLER: Simply let them all just float by.

M. PISTORIUS: Forever, forever.

MILLER: That was his first strategy, disengaging his thoughts, and he said he got really good at it.

M. PISTORIUS: You don’t really think about anything. You simply exist.

MILLER: Can you describe what it – that feels like? I wonder, is it peaceful, or…

M. 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.

MILLER: Though, occasionally, there were certain things…

(SOUNDBITE OF TV SHOW, “BARNEY AND FRIENDS)

UNIDENTIFIED ACTOR: (As Barney) You can always count of having a fun day when you spend it with the people you love.

MILLER: That elicitated thoughts he could not ignore, like “Barney.”

(SOUNDBITE OF TV SHOW, “BARNEY AND FRIENDS”)

UNIDENTIFIED ACTOR: (As Barney) (Singing) I love you. You love me.

M. 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, at the special care center where he spent his days he was often left in front of a TV watching “Barney” reruns, hour after hour.

(SOUNDBITE OF TV SHOW, “BARNEY AND FRIENDS”)

UNIDENTIFIED ACTOR: (As Barney) (Singing) I love you.

MILLER: Day after day.

(SOUNDBITE OF TV SHOW, “BARNEY & FRIENDS”)

UNIDENTIFIED CHILDREN: (Singing) John Jacob Jingleheimer Schmidt.

MILLER: And one day, he decided he had 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, but he was rarely seated near a clock, so…

M. PISTORIUS: I would watch how the sun moved across the room or how a shadow moved throughout the day.

MILLER: He begins to match what he sees with little bits of information he’s able to collect – what he hears on the television, a nurse mentioning the time. And within a few months he could read the shadows like a clock.

M. 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.

M. PISTORIUS: Yes.

MILLER: So now when a dark thought came up, instead of letting it just float by he would take it on, try to find some new relationship to it. Like, one time, shortly after having the drool wiped from his chin by a nurse.

M. PISTORIUS: You are pathetic.

MILLER: He happened to notice that a song was playing on the radio – Whitney Houston’s “The Greatest Love Of All.”

M. PISTORIUS: In the song she says no matter what they take from me…

(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 eventually Martin found a way to reframe, reinterpret even the ugliest thoughts that haunted him.

JOAN PISTORIUS: I hope you die.

MILLER: He was conscious when his mom told him that.

M. PISTORIUS: The rest of the world felt so far away when she said those words.

MILLER: But he began to wrestle with it. Why would a mother say that?

M. PISTORIUS: As time passed, I gradually learned to understand my mother’s desperation. Every time she looked at me, she could see only a cruel parody of the once-healthy child she had loved so much.

MILLER: And over time Martin began reengaging with his thoughts, and slowly, as his mind felt better, something else happened. His body began to get better. Now, why? This is a long story involving inexplicable neurological developments, a painstaking battle to prove his existence.

M. PISTORIUS: Anyway, the short version…

MILLER: (Laughter) OK, wherever you are standing in your life, prepare to be lapped. At age 26, Martin passed a test where he identified different objects by pointing at them with his eyes.

JOAN PISTORIUS: I then gave up my job.

MILLER: Joan then worked with Martin for two years to teach him to operate a computer.

JOAN PISTORIUS: When he gets the tools to communicate he forges ahead.

MILLER: Then he gets a job at a local government office.

M. PISTORIUS: I wanted to prove that I could do more than just speak words via a laptop.

MILLER: Eventually, he scraps that job, goes to college.

JOAN PISTORIUS: In computer science.

MILLER: Starts a web company.

JOAN PISTORIUS: It was absolutely flabbergasting. I couldn’t understand it.

MILLER: Wow.

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: And Martin thinks it may have been his decision to lean into those dark thoughts that helped him to get the very best thing in his life.

JOANNA PISTORIUS: Oh, he’s just saying – he’s just typing.

M. PISTORIUS: My wife.

MILLER: This is Martin’s wife.

M. PISTORIUS: Joanna.

JOANNA PISTORIUS: (Laughter) When Martin talks about me or types about me, he always starts smiling.

MILLER: Joanna was a friend of Martin’s sister. And the first night they met they talked for hours.

M. PISTORIUS: She would speak, and I would type my response.

MILLER: And Joanna said the thing that drew her to Martin was his humor about the human condition, his frankness.

JOANNA PISTORIUS: If I ask him anything, he’ll give me an honest answer. There was no pretend. Oh, OK, well, he’s in a wheelchair and he doesn’t speak, but I love this guy. He’s amazing. Then it just so quickly turned into love (laughter).

MILLER: And Martin, at long last, had no trouble expressing what he felt inside.

M. PISTORIUS: My face would hurt from smiling so much.

MILLER: (Laughter).

SIEGEL: Lulu Miller is the co-host of Invisibilia, along with Alix Spiegel. It’s our newest program. It explores how invisible things shape our behavior and our lives. The program debuts this weekend on many public radio stations and the podcast is available for download on npr.org and on iTunes. The book Martin Pistorius published was a memoir of what it was like to be invisible for over a decade. It’s called “Ghost Boy: My Escape From A Life Locked Inside My Own Body.”

Copyright © 2015 NPR. All rights reserved. No quotes from the materials contained herein may be used in any media without attribution to NPR. This transcript is provided for personal, noncommercial use only, pursuant to our Terms of Use. Any other use requires NPR’s prior permission. Visit our permissions page for further information.

NPR transcripts are created on a rush deadline by a contractor for NPR, and accuracy and availability may vary. This text may not be in its final form and may be updated or revised in the future. Please be aware that the authoritative record of NPR’s programming is the audio.

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Joan of Arc

I know this now. Every man gives his life for what he believes. Every woman gives her life for what she believes. Sometimes people believe in little or nothing yet they give their lives to that little or nothing. One life is all we have and we live it as we believe in living it. And then it is gone. But to sacrifice what you are and live without belief, that's more terrible than dying.--

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Beannacht

On the day when
the weight deadens
on your shoulders
and you stumble,
may the clay dance
to balance you.

And when your eyes
freeze behind
the grey window
and the ghost of loss
gets in to you,
may a flock of colours,
indigo, red, green,
and azure blue
come to awaken in you
a meadow of delight.

When the canvas frays
in the currach of thought
and a stain of ocean
blackens beneath you,
may there come across the waters
a path of yellow moonlight
to bring you safely home.

May the nourishment of the earth be yours,
may the clarity of light be yours,
may the fluency of the ocean be yours,
may the protection of the ancestors be yours.
And so may a slow
wind work these words
of love around you,
an invisible cloak
to mind your life.

John O'Donohue, Echoes of Memory

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