Writing and Healing: Year 2

Gorillas in the Garden: An Image for Writing and Healing

Sometimes this website/blog that I write at here seems to me like a garden.  Because what happens is I plant for a while—put things in the ground—and then I go about the business of my life and then, often in a moment when I least expect it—and most need it—the garden gives back.  And then it's like that tiny thrill I get when I look out the window and see goldfinches at the feeder or, earlier this fall, a hummingbird visitor at the cardinal flower, or, last month, caterpillars in the parsley.

This month, among other things:  Gorillas.

It happened like this.  I wrote a piece earlier this month on the business of healing, expressing there some of the discouragement I sometimes feel about the state of affairs in health care practice of late—much of this arising from stories I hear from patients.  And what happened then was that Catherine, a nurse in Fargo, North Dakota, heard the discouragement in that piece and sent on a poem called “Amazing Change.”  (I looked for a link to the poem on-line and found it in this article by Robert Carroll, The Healing Power of Poetry.  The poem came out of a project that paired poets with brain cancer patients as a way to help people with cancer—and perhaps the poets as well—articulate their experience through poetic language.)

Here’s the poem:

Amazing Change

We can go through amazing changes
when we are faced with knowing
we have limited time.
After one woman got brain cancer
she decided what she wanted
was to go to Africa
to see the gorillas.
She and her husband and the guides
began the long trek through the jungle
up the mountains, but the woman was
having trouble.  The guides tried
to convince her to go back, but
she wouldn’t.
She struggled and struggled.
Eventually she won the guides over
and everyone was rooting for her
but there came a point when
she couldn’t go on, so
she laid down on the grass
and when she did, the gorillas
came out of the jungle
to her.

She struggled and struggled.  And then the gorillas came.

The first time I read this poem I was reading quickly, and my eye skipped over the detail in the seventh line—the fact that what the woman wanted from the journey was to see the gorillas.  I missed that.  I was reading that she was on a journey, she was having trouble, the guides trying to convince her to go back, all of that—and then the point when she couldn’t go on—the lying down-----and then the gorillas coming to her. 

There was for me something about those gorillas coming—entirely unexpected—such a sense of mystery in that—the good kind of mystery. 

Then I reread the poem, more slowly, and I saw the first mention of the gorillas—oh, that was where she was trying to get to all along—and the poem fell into place more.  But still now it seems to me----such mystery there.  The possibility of lying down to rest----and then the gorillas coming—that sense of wonder and mystery.

(and perhaps no small part of the mystery lying somewhere in that moment of recognition, again, that all of us, like the woman in the poem, have a limited amount of time.)

Thanks, Catherine

Net of Jewels: An Image of Healing for Which I’m Thankful

This image comes via Sogyal Rinpoche in his book, The Tibetan Book of Living and Dying.  He writes:

The Buddha compared the universe to a vast net woven of a variety of countless jewels, each with a countless number of facets.  Each jewel reflects in itself every other jewel in the net and is, in fact, one with every jewel.

I love that.  And I love the way he uses yet another metaphor to illuminate the net: a tree.
He writes:

When you contemplate [the tree], you will find that it dissolves into an extremely subtle net of relationships that stretch across the universe.  The rain that falls on its leaves, the wind that sways it, the soil that nourishes and sustains it, all the seasons and the weather, moonlight and starlight and sunlight—all form part of this tree.  As you begin to think about the tree more and more, you will discover that everything in the universe helps to make the tree what it is; that it cannot at any moment be isolated from anything else; and that at every moment its nature is subtly changing.

May you have a blessed Thanksgiving and know that you are part of this net of jewels---part of this tree that stretches across the universe.

Kathrine’s Passion for Healing Women with Cancer

When I think about the kind of knowledge that people who are healing are developing—and have to offer to the growing wisdom of healing—one of the people who comes to mind is Kathrine McKnight, a woman in my community here in Winston-Salem who I know primarily through her work with the GYN cancer support group at Cancer Services.  Kathrine’s passion for healing has been directed primarily with and for women with cancer and she has done so with warmth and welcoming and with a great sense of humor—a wonderful laugh. 

Not long ago, Kathrine sent me a piece she’d written about her passion for healing.  I’m going to include a link to download the document (it’s a page and a half) below but first I want to offer an excerpt. 

My passion is to empower women to be responsible for, advocate for, and participate in the care and nurture of their bodies as it relates to breast and gynecologic cancers.

For me passion is like an explosion that bursts from the internal combustion of my core like solar flares.  My passion is an important part of my healing.  It is a way to move my experience with cancer forward to hopefully benefit some other woman.  It is important to me to believe that at least one woman’s life will be different, easier, clearer, better because I walked this path.

I love this piece.  First because it describes her passion in image-laden language.  And then I love what she describes doing with this passion.  She found out that Tim Gunn, of Project Runway fame, was going to be appearing at a local department store.  Then, and in the midst of chemo treatment no less, she developed a proposal naming three key needs of women dealing with cancer. 

•    Clothing design modifications for women with special needs
•    A proposal for a series of national education seminars concerning breast and gyn cancers
•    Funding to develop a kit for newly diagnosed gyn cancer patients modeled after the ‘Pink Broomstick’ kits for breast cancer patients.

And she went out to the department store and she stood in line and she presented the proposal to Tim Gunn, with the hope, as I understand it, that he might consider one of these projects.  I love this.  And I love love what she writes about this moment. “Passion is contagious.  I shared it with everyone like a fine box of chocolates!”

Download A_Passion_for_Healing.doc

A Call for Humility in the Practice of Medicine

Sometimes searching the internet really works—it leads to something one didn’t know was out there—a gem—a gift.  My own discovery this week is an article in the Mayo Clinic Proceedings by James Li, a physician at Mayo in the Department of Allergy and Infectious Disease. 

For this past week I’ve been thinking on and off about what my next question is—after writing last week about my own discouragement around the business of health care.  I began to think that my central question, or one of my central questions, has become this:  What do I long to see happen in the practice of medicine?  What kind of reform and renewal do I hope for?

Well, one of the things I hope for is national health insurance in this country.  I hope for a kind of safety net that might allow people in this country to not have to have illness, not to mention the illness of their children, compounded by financial fears.  Or to not delay seeking treatment for illness because of such fears.  (See, for instance, the recent article, “Worsening the Odds,” in the New York Times about the costs to the uninsured in cancer mortality.  And this sobering article at the American Cancer Society site.)  First, everyone needs to be able to get in the door.  Or at least have the option of knowing they can get in the door.

And once in the door?  I’ve been thinking that the other thing I hope for from the practice of medicine is a new and more balanced collaboration between health care practitioners and patients.  Patients—which is to say everyone who is/has been ill and who is/has been healing—they (we) know so much—individually and collectively—and too much of that knowledge, it seems to me, continues to get undervalued—and then lost.  My hope is that it might be increasingly valued and reclaimed.  And that it might be combined with doctor knowledge to create something more than the sum of these individual kinds of knowledge. 

It occurred to me that this kind of collaboration would require a kind of humility on the part of physicians.  (On the part of other health practitioners as well but, as a group, it's probably physicians who lack and need this quality most sorely.)  Well, that’s what led to my search:  humility + physician.  And the first item that appeared—the found treasure—was the article, "Humility and the Practice of Medicine," by James Li.

He suggests humility is necessary for physicians in three areas—knowledge, learning and caring.  I’m going to quote extensively from his essay because I think he nails it:

Knowledge:

The overconfident physician tends to be self-satisfied and self-sufficient with his knowledge base. The humble physician is all too aware of the limitations of his personal fund of knowledge but is also aware of the limitations of all sources of information. This sense of limitation leads to a search for the best available information to support a clinical decision—the so-called evidence-based approach. The humble physician, however, avoids the naively optimistic view that all or even most clinical activities can be directed by randomized trials.

Learning:

The experienced physician senses the deep mysteries of the practice of medicine, both on the biologic side and the humanistic side. One highly accomplished academic commented to me that the more he studies his subject, the more he appreciates how little he really knows. Unlike the self-satisfied physician, the humble physician is never satisfied that he knows enough medicine or that he knows everything about his patient. The humble physician is able to appreciate the mysteries of disease and the marvels of healing.

Caring:

The hubris of the overconfident physician misleads him into believing that medical science and technology are sufficient for the care of the patient. An over reliance on the technical aspects of medicine leads to the subordination of the patient-physician relationship.  In the practice of medicine, compassion is a form of self-effacement that is incompatible with an over inflated sense of self. Responding to patient concerns, understanding illness from the patient’s point of view, and offering reassurance are possible only when the physician’s sense of self is subjugated to the welfare of the patient.

My favorite line?
The experienced physician senses the deep mysteries of the practice of medicine, both on the biologic side and the humanistic side.

Yes.

The experienced patient senses these deep mysteries as well.  In fact, the experienced patient may come, in any individual case, to these deep mysteries first.  Particularly the ones on the humanistic side.  And this week—as a kind of antidote to discouragement—I’m imagining a collaboration between patients and health care practitioners such that these deep mysteries might be met with a growing wisdom.

I’m also thinking how this kind of collaboration takes time---how it may not have an opportunity to blossom well within an infrastructure of ten-minute appointments—that it may need new forums—new forms—in which to occur.  And perhaps writing and reading—reading and responding---back and forth between healers and healees (and with the roles sometimes shifting and reversing)—maybe writing can play a part in this new form---become a part of this collaboration-------------

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The full article, "Humility and the Practice of Medicine," by James Li is available online.

The Business of Healing

I sometimes get discouraged.  I worry that the practice of medicine has lost its center.  I don’t worry about this all of the time--sometimes I feel more hopeful and inspired--but this week I’m worrying about it. 

I hear stories.  And it’s hard because many stories I want to share—the nitty gritty of how medicine seems sometimes to be losing its center—many of these stories I hear from patients and I can’t share them because I need to protect privacy.  At the same time, I feel like I'm hearing these worrisome stories more than I used to.  Truncated visits.  A kind of tone-deafness to the body’s pain.  A suspicion that money—the bottom line—is steadily encroaching on the nuts and bolts of how medicine gets practiced. 

Not with all health care practitioners by any means.  There are exceptions, many of them remarkable.  And those practitioners who are truncating visits seem, often, more like pawns in this new world of healthcare than chess-masters.  But it seems to me that there’s a different flavor in many of the stories that I hear about practitioner-patient relationships than there used to be.  A worrisome erosion, in many instances, of trust.   

I worry that the central purpose of medical care—that is, offering the best medical care possible when people are ill or in trouble, and then guiding them through the healing process—I worry that this central purpose is too often becoming misplaced—even lost.  And I suspect that this has something to do with a business model of medicine that is steadily encroaching.

I seem to get an awful lot of thin throwaway magazines in the mail that instruct me on how to invest my money and how to protect it.  I see an awful lot of articles published instructing me in how I might, if I so desired, make my practice more profitable.  (I wish I had one of these articles available to me right now for a more concrete example.  But, alas, I’ve thrown them all away.)

When I was a first-year medical student a debate erupted spontaneously one morning, in the midst of a lecture, over whether health care should be an essential human right—whether we thought it should be an essential human right in this country—and I remember a young man standing up and saying health care is a business and there’s absolutely no reason it should ever be anything but a business.  Health care is a commodity like any other commodity to be produced and sold and bought and to be competed for in the marketplace.

The young man who made this argument, and quite passionately, was named Leroy.  The class was called Social and Behavioral Medicine.  Our teacher was British.  The class included instruction in health care systems in other countries, most notably those of England and Canada.  Leroy and a few of his comrades let us all know how absurd they found this instruction.  And one morning—perhaps just after the debate—or maybe the same day as the debate—Leroy came to class dressed in green fatigues and a green cap.  He was dressing as Castro, this as I understood it, to protest what he thought to be the ludicrous notion of socialized medicine. 

I was mystified.  It was all a bit surreal.  The debate.  The costume.  I was a first year medical student and the thought of medicine as a product to be bought and sold—it didn’t make any sense to me.  Medicine as commodity.  I still can’t get my head around the notion in any way that makes it work.  The way I see it, a central flaw in any argument for medicine as a commodity is the raw fact that people who seek medical care are most often sick.  Or they’re in trouble—vulnerable in some way.  Illness makes for a terrible time in which to try and become a savvy consumer.  Difficult enough to become a savvy health consumer under the best of circumstances, now that health and medical care has become—and continues to become—increasingly complex.

I think of the lines from a poem one of the members in the writing group at Cancer Services wrote:
        So much information
        Overwhelmed with information
        Three bulging grocery bags
        (And you’re sick.  When can you read?)

And then there’s the issue of trust.  The way that healing, as I understand it, requires that a person who is vulnerable come to place their trust in someone—or at least in something.  But preferably a someone and a something.  And what happens to this trust when health care is seen primarily as a commodity to be sold and purchased?  Could that ever work in a million years?
[to be continued-----]

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Well, clearly, I have more questions this morning than answers.  The trick is to bump up against these kinds of questions and then not see them as so huge and overwhelming that one gives up.  Well, at least that’s the trick for me.  Not to give up and turn my head away because the problem seems like it could become large and thorny.  So I’m doing what I try to do in writing when things seem thorny and large.  Just ask the next question.  Figure out what my next question is about the business of medicine and healing and just ask that one.  And then try to write the next paragraph that comes in response.  (And with a hunch this morning that the answers, or at least the next good questions, are somewhere to be found in the stories of those who are healing.)

Finding a Place for Emily's Story

Emily is a young woman with an eating disorder who I saw as a patient and who I’ve written about before, a couple of short pieces that I placed on One Year of Writing and Healing.  Several months ago now, Sara Yates began putting together the Love Your Body Exhibit and she put out a call for art and written pieces on making peace with the body.  I thought of Emily again and I decided to shape Emily’s story in a more formal way—give it a stronger sense of form.  What emerged were seven short pieces plus an epilogue.  I submitted the piece to Sara.  And, in an experience that I know I share with many (and perhaps all) of the artists and writers who submitted pieces to this exhibit, Sara received the piece with a generosity of spirit—a sparkle—a light—that made you want to be part of this thing she was bringing together.

A flurry of emails with Sara ensued.  The possibility of me reading the piece at a performance in connection with the Love Your Body Exhibit.  The possibility of complementing the piece with projected images.  The possibility of choreographing the piece with dancers.  Well, eventually we dropped the idea of the dancers, but on this past Friday evening I had the privilege of reading Emily’s Story, complemented with projections from Emily's journal, at a performance at Salem College here entitled In Celebration of the Body.

The evening’s performance began with three pieces by a dance troupe from the Enrichment Center, a center here in Winston-Salem that has, for some years now, been developing and fostering the artistic talents of adults with disabilities.  The dancers were dressed in black.  One woman came to the stage with a walker and was helped into a chair at the center of the stage surrounded by the other dancers.  They danced to Bridge Over Troubled Water and You Raise Me Up (the Josh Grobin song) and a third song, a love song danced by two of the dancers.  The shapes of the bodies—the lovely and unique variation in their moves—none of this is what we’re ordinarily accustomed to seeing from adult dancers.  It was beautiful.  And I don’t know if I can say when before I’ve seen such joy on dancers’ faces.  Maybe sometimes at children’s performances—that joy.

A Tribal Fusion dance came next—Beverly Whitt dancing in a hypnotic form akin to belly dancing but which includes elements from Egyptian, American Tribal and hip hop dance styles.  A dance which celebrated the belly.  The story that I read—Emily’s Story—a story about reclaiming a belief in the beauty of her own body—this was sandwiched between this Tribal Fusion dance and a lovely performance of connected yoga moves by Lisa Sarasohn, author of The Woman’s Belly Book.  The show concluded finally with, well, a troupe of belly dancers.  The Graces Dance Troupe.  And their beautiful and celebratory dance.

When I first submitted Emily’s story—a story about a young woman coming to find a safe place to make peace with her own stomach—her own belly—and in turn her own body, I could never have imagined that her story would be set amidst belly dancers, would be followed by a performance from a woman who has written a book about loving one’s belly.  A woman who writes in the program notes to the show: “What happens to the center happens to the whole.  Love your body’s center—yes, your belly!—and you’re on the fast track to loving your whole body, our whole self.”

And one of the things I am thinking about now on Monday morning, in the wake of this juxtaposition, is how, in a way I never thought so much about before, it might matter where a piece is published and what it’s next to—and how one’s piece might be juxtaposed with another person’s piece and another—and if there is a skillful director, which in this case there was—Sara—a kind of flow can be created—a collage—such that the pieces resonate with each other and become in conversation one with other—and become something larger.  I suspect this is something performance artists—dancers and musicians and such—think much more about than writers.  And now, this morning, I find myself thinking about it—the way the pieces can come together—the way they did come together on Friday night.

How wonderful after the performance to wander through the corridor gallery where the Love Your Body art was up and to hear people responding to and resonating with the joy in the faces of the dance troupe from the Enrichment Center and with Emily's Story and with the belly dancing—well, with all of it.  And the way all of this was at the same time resonating with the art in the corridor itself—the way this was adding up to something larger than any individual piece or even the sum of the pieces.  Something entirely new being created. 

In my own program note I wrote:

From the spring of 2002 into that summer, I saw as a patient a young woman who I am here calling Emily.  She was struggling with and suffering from severe anorexia.  She died in July of 2002.  I have long felt that her story did not end with her death—and should not end with her death.  That her story was a healing story that deserved to be told.  That though the outcome was not what I would have hoped for her, it is still important that she found , eventually, a healing place—and experienced significant healing.  Before she died she left me with her journal and her two self-portraits and I am delighted now that the right forum has appeared in which to honor her story.

It was the right forum for Emily’s Story.  The right place.  And I am exceedingly grateful to have been able to find it.
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You can download and read Emily’s Story here with the projections from the show:

Download Emily_Projections.doc