Word Medicine

Writing and Healing

Medicine IS Humanism June 14, 2014

Filed under: Writing and Healing — Sara Baker @ 3:11 pm

saratbaker:

Phillip Mitchell of Narrative Care brought this lovely blog post by Joy Jacobson to my attention.

Originally posted on HealthCetera - CHMP's Blog:

Diane Kaufman

Diane Kaufman, MD; photo by Scott Friedman

This guest post is by Dr. Diane Kaufman, a child psychiatrist, poet, and passionate advocate for arts in healing. Her poem “In Memory of the Future,” in honor of the Newtown, Connecticut, shooting victims, is powerfully performed by Newark Arts High School students. Click here to watch the video of their performance.

The practice of medicine revolves around people. A person in need is at the center of the health-caring circle, and all around are other people who are trying to be of help. Blood tests, respiratory devices, infusions, MRIs, and other forms of advanced technology at their very best diagnose and treat, and that is so very important and essential, but they alone can not care. They are not alive, and they know nothing about love, joy, kindness, sorrow, loss, dying, death, and the cry of a newborn child. Only human beings…

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Ancient Medicine and the Modern Physician: “A Harvest of Sorrows” March 31, 2014

He who learns must suffer

In our sleep, pain which cannot forget

falls drop by drop upon the heart

until, in our own despair, against our will,

comes wisdom through the awful grace of God.

—Aeschylus (525–456 BCE)

from Agamemnon 1, 179–1832

This past week, I had the pleasure of attending a seminar on ancient medicine and the modern physician on the UGA and Medical Science campuses.  With an opening presentation by Rich Panico, who spoke of the need for both “hard” or scientific competencies and “soft” or empathic, humanistic competenhippocratescies, the mini-conference addressed the ancient physician’s use of performance, humor, case studies, and finally, errors, all of which were written about in what are now called Hippocratic writings, dating from the fifth century BC to the fifth century AD. It was interesting to glimpse across the centuries the roots of modern Western medicine.  It was particularly interesting to learn of the importance of rhetoric in ancient medicine, as well as humor.

 “And I will tell you a striking proof of this: many and many a time have I gone with my brother or other doctors to visit one of their patients and found him unwilling either to take medicine or submit to the surgeon’s knife or cautery; and when the doctor failed to persuade him, I succeeded, by no other art than that of rhetoric.” Plato’s Gorgias 456b-c2

 Much of the conversation revolved around issues of modern physician burnout (interestingly, ancient physicians were expected to be healthy and fit as advertisement of their skill) and physician vulnerability.  How do doctors protect themselves? was a question. Can physicians be compassionate without becoming mired in the suffering they witness?

This was a week when suffering and modern medicine were much on my mind.  My childhood friend’s mother died after a long downward spiral. She was at home, receiving hospice care, but her death was protracted and painful. Here is what my friend wrote me about it:

  My Mother is dying. She has not had anything to eat or drink for one week. The MSA completely eradicates the ability to speak OR swallow. Hospice should make allowances for these instances. My beautiful fragile mother now looks like a victim of Dachau or Bergen Belsen. It is not “natural.” It is cruel and sadistic. She is reduced to nothing, begging for relief with her eyes and with the clasp of her hand. Dying pets are treated with more dignity. Her poor, tortured, emaciated body cries out to be put to rest, to be left in peace. Christ on the Cross survived one day. My mother has surpassed him by six.

Another friend writes about her brother’s long illness, resulting from medical error:

 My brother had been sick for many years, actually, beginning with a routine root canal in 1986, which wasn’t treated correctly and became infected.  The infection had encased his heart by the time he went to the doctor.  That simple little thing led to two years of hospitalization and rehab, most of which he doesn’t even remember. The medicine that finally saved his life also made him almost deaf.  He eventually recovered from the infection, of course, but his health seemed permanently compromised thereafter. In the last 10 years or so, he was diagnosed with diabetes, rheumatoid arthritis and even at one point was being tested for TB.  All the medication he was on had a lot of side effects as well. How much any of these other issues stemmed from  problems originating with the root canal I can’t possibly say.  He was just never the same after that.

 Here are two impassioned reports of suffering.  My intention is not to point fingers at medical carelessness or error.  Yes, the first heart-wrenching account sounds a clarion call for better pain management for the dying.  The second is a tragic story of carelessness that cascaded into a litany of woes. Each case could be attributable to a variety of causes—insufficient monitoring, negligence, judgment errors, red-tape, lack of communication between physicians and patients or families.  I bring them to your attention because of the suffering described—suffering for the patient, the families, and one can imagine, the physician themselves. Pain and suffering are an inevitable part of doctoring.  Not all patients get well, not all patients survive.

For the sake of argument, I am assuming that these patients’ doctors were the of the same ilk as most of those I’ve encountered in my labyrinthine journey through the medical system: ethical, skilled and for the most part, caring. Most physicians I know are as fed up with the system as their patients.  For the physician, there is the added burden that sick people and their families invest him/her with almost shamanic powers, expecting the physician to perform the impossible.  As Heinrich von Staden so eloquently relayed last Monday in his talk about physician error recorded in Hippocratic writings, physicians reap a “harvest of sorrows,” by what they must witness.  How then do doctors withstand this inevitability?   How are young doctors trained to handle suffering?

Is the answer for the physician that he becomes invulnerable (if that is even a possibility) in order to protect himself from the suffering of others?  Is the answer to deny his own suffering as well?  The position of the physician is both privileged and fraught —she is privy to the most intimate struggles of her patients, and yet she must delimit her involvement in order to maintain her own authority and inner balance.

Perhaps the question of protection needs to be framed differently.  Rachel Naomi Remens, a physician who also lives with chronic illness, frames the question this way:

In recent years the question how can I help? has become meaningful to many people. But perhaps there is a deeper question we might consider. Perhaps the real question is not how can I help? but how can I serve?

Serving is different from helping. Helping is based on inequality; it is not a relationship between equals. When you help you use your own strength to help those of lesser strength. If I’m attentive to what’s going on inside of me when I’m helping, I find that I’m always helping someone who’s not as strong as I am, who is needier than I am. People feel this inequality. When we help we may inadvertently take away from people more than we could ever give them; we may diminish their self-esteem, their sense of worth, integrity and wholeness. When I help I am very aware of my own strength. But we don’t serve with our strength, we serve with ourselves. We draw from all of our experiences. Our limitations serve, our wounds serve, even our darkness can serve. The wholeness in us serves the wholeness in others and the wholeness in life. The wholeness in you is the same as the wholeness in me. Service is a relationship between equals.

What Dr. Remens expresses here gets at the most fundamental question for any healthcare provider.  We serve with our skill, but we serve first as humans who also suffer.  The more whole we are, the more in touch with our own limitations and our own suffering, the more able we will be to be present to those whom we serve.  I can tell you that as someone who has a little understood illness and chronic pain, it is not only the physician’s skill I need from him, but also his ability to stand with me in my situation, to acknowledge my pain.  This under-standing is an act of imagination, as is the ability to be present.  Listening to a patient, standing with her in her predicament, these are acts of healing not to be underestimated.

But you say, isn’t that the sure path to physician burnout?  Actually, I think it may be the antidote.  The physician can lay down the burden of fixing, of being super-human, when serving.  Wouldn’t the physician who can acknowledge that she is not the source of healing, but the midwife to the process of healing, have less stress than the physician who feels the entire outcome rests solely on her?

In the end, the world isn’t divided into the sick and the well, the healer and the healed.  We are all sick and well, all healer and in need of healing.  If we can stand in our common humanity serving each other, how much pain might be mitigated?

 

 

 

 

 

 

 

 

 

 

Inside the Circle February 5, 2014

Mary Gelpi in her January 27th post, Unwell, Unafraid (http://25pillsaday.wordpress.com/2014/01/27/unwell-unafraid/), on her blog, Fibromy-Awesome, writes a cogent description of what living with Chronic Fatigue/Fibromyalgia is like:  “A crash day followed by a crash day followed by a crash day. Somehow it’s worse when you’ve been feeling well.  All the years I’ve been sick, all the crash days and months, and I still can’t remember how bad it feels. It always pulls the rug out from under me–more so if I’ve had good health. Over and over, I forget. How incapacitating it is. How depressing it can get. When you’re moving and doing and performing tasks, you don’t think about these things. You don’t have to. You’re fitting in and alongside the rest of the functioning, productive world and that’s how you like it.”

 

This is one of the best descriptions of living with CFIDS/Fibro that I’ve read.  But I winced when I read it, because Mary is my daughter’s age, and I hate the thought of her having to deal with the compromises this illness brings at her age. Yet I admire her for her honesty and spunk.  At twice her age, I still haven’t been able to figure out how to manage the push/crash cycle of living within the boundaries of this illness.  As she says, it is worse when you’ve had a period of time feeling well.  My vet once said animals heal more quickly from things like strokes because they don’t know they’ve had a stroke—they just want to chase the ball.  In a sense, our animal bodies just want to get up and go when we are feeling well.  We may know intellectually that we have to be careful, but it is so delicious to feel that small burst of energy, that we just go with it.

 

I think for me another difficulty is how I perceive myself.  Reacting to the role of invalid, which makes one feel in-valid, I sometimes push myself to go and do in order to experience myself  having both social roles and mastery in some areas of my life.  This isn’t always bad—on the contrary, I’ve been surprised at how often things turn out well.  But I have created a life in which there is a lot of down time.  From the outside, it would seem, perhaps, that the circumference of my life is small, but there is often great richness within that small circle.

 

I think perhaps the biggest problem is not just figuring out how to participate in life as a person with chronic illness, but also what attitude to take towards our own difficulties.  Ironically, for me when I was at my sickest, it was when I was able to accept my illness and release my expectations, that I began to heal.  I read Kat Duff’s beautiful book, The Alchemy of Illness, which I can’t recommend highly enough.  I learned radical acceptance from her, and found in that dark night of the soul that there is something in us that is not dependent on our abilities or accomplishments, and is our truest nature.

 

Yet as we heal, we are also asked to revisit the question of how to live our lives, with what attitude. It seems we have to resolve the issue over and over again, that it is never settled once and for all.  I recently came across this in Helen Luke’s book, The Way of Women, in an essay on suffering:  “A question to be asked in moods of weakness or depression is, ‘Am I grading myself or am I recognizing the golden opportunity to suffer and so deny to some small degree the ego’s demand for prestige?” She writes that deadly guilt is often inverted pride, and we have to be on the lookout for false values, as in “I ought to be like God himself, free of all weaknesses.”  However, and this is such an important distinction for me, she doesn’t equate acceptance with resignation.  “Hope for release is another thing, both natural and right, as are also the efforts to come out of a mood or sickness…..real acceptance will lead us to seek appropriate help.”

 

I want to be a productive, functioning social being, just like my dog will always want to chase the ball.  Living with this illness is never knowing on any given day who I will be, what I can do.  I can’t pretend that I like crashing.  I just hope I can get better at acceptance.

happy-dog-chasing-a-ball

 

What is the Meaning of Light if Darkness is Denied? December 11, 2013

Filed under: Grief,Spirituality — Sara Baker @ 8:41 pm
Tags: , , , , , ,

I fell into a blue funk this past Sunday afternoon.  Whether it was the cold, dark rainy day,  the aches and pains brought on by the weather, the fact that a friend is struggling in ICU after having been suddenly struck down by an aneurysm or a combination of all of them, I am not sure.

It isn’t that my friend is my best friend, but that she is an important part of our community.  She and her husband own a lovely shop with carefully selected toys and home goods that reflect her artistic bent.  She is a warm and spiritual woman, who recently went through training to be a dream leader.  And maybe my favorite fact about her, is that she has chickens, and each hen is named and loved.  Her illness has shaken the community, and reminded us that despite our best efforts, things—willy-nilly–can go terribly wrong.

So the seriousness of her condition was on my mind after church on Sunday when I experienced a feeling of such vulnerability and panic that I could hardly move.  I usually don’t mind solitude, but what this felt like was loneliness, abandonment.  I cast around for what to do, how to flee this constricting feeling.  Then I remembered to breathe.  I thought about being a witness, and not fleeing or repressing  or denying the feeling, but tried to invite it in, as Rumi advises us to do in “The Guest House”:

 

The Guest House

This being human is a guest house.
Every morning a new arrival.

A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.

Welcome and entertain them all!
Even if they’re a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.

I can’t honestly say the feeling got much better, but it became less terrible.  Luckily,

I was going to a chorale concert with my mother and busied myself getting ready for that.We drove through the pouring rain.  When we got inside the new atrium where the concert was being held, the contrast between the gray outside and the brightly lit interior could not have been greater.  Immediately, I felt better.  As I listened to the voices  singing Bach’s Magnificat in D, I traveled through the emotions expressed in the music—wonder, heartbreak, tentative hope and triumphant joy.  I looked at the emotions playing across the faces of the singers as their voices swelled or diminished.  I realized then in a visceral way how necessary the light, whether music or candle, is to see us through these short winter days that whisper the truth of death.

Despite our artificial lights, our gadgets that give us almost God-like powers, the perkiness of relentless Christmas songs, and the frantic rushing and shopping, are we so different from those who came before us? Are we so different from the ancient Romans, who celebrated the Saturnalia to dispel the gloom of winter, or the medieval Swedes, who celebrated dark St. Lucy’s day with a crown of candles?

And if we manage to really elude our inner winters, then what meaning does the light hold for us?  What is the meaning of light, if the darkness is denied?

candle

 

Hitting the Target September 16, 2013

I keep returning to Anna Kamienska’s  notebooks.  They are so companionable.  Even though she was a mid-century Polish poet,  there is nothing dated or unfamiliar about her observations. Recently, I stumbled upon this:

In Pedro Arrupe’s book on Japan I find useful comments on shooting with a bow. A Japanese man instructs a missionary:

Holy Father, you must not think about the target, the target has no meaning here. And you must not worry about hitting it. Above all you must strive to become one with the target, and only then do you calmly release the arrow. The arrow will fly straight to the target. But if you tighten your nerves instead of the string, you may be sure that it will never reach the goal.

Doesn’t this sum up the whole struggle of the creative process?  We want so much to make a bulls-eye, and yet so much of our effort misses the target entirely, arrows shot wildly in the general direction because of tightened nerves.  Or at least that is my experience.  What does it mean to become one with the target, for example, for a writer?  How do I maintain calm?

Nadine Gordimer once said that writing a novel is like walking on a tight-rope over an abyss.  Do not look down, she says, or you will lose your footing.  I know that sometimes I’ve looked down only to be gripped by icy terror.  That’s just asking for your worst internal critic to paralyze you on the spot.  Work has flowed, for me, when I can be self-forgetful.  It is when I am not asking myself, “how am I doing?,” but rather contemplating my subject so deeply that I am living it.  That is one of the secret joys of writing fiction, especially long fiction.  The excitement comes in unexpected discoveries,  in witnessing beauty that doesn’t come from you but through you.

I think we can recognize a work of art in which the artist has become one with his subject.  This weekend I went to Greenville, SC to see the unveiling of a sculpture honoring Peg Leg Bates, the amazing one-legged tap dancer from Greenville.  Never heard of him?  Neither had I until this weekend. From Wikipedia:

Clayton “Peg Leg” Bates (October 11 1907 – December 8, 1998) was an Afro-American entertainer from Fountain Inn, South Carolina. Bates lost a leg at the age of 12 in a cotton gin accident. He subsequently taught himself to tap dance with a wooden peg leg. His uncle, Wit, made his crude first “peg leg” after returning home from World War I and finding his nephew handicapped. Bates was a well-known dancer in his day. He performed on The Ed Sullivan Show approximately 58 times, and had two command performances before the King & Queen of England in 1936 and then again in 1938] He retired from the dancing business in 1996.

At the unveiling ceremony, much was made of the fact that Peg Leg never let his disability stop him.  Watching the You Tube videos would inspire even the most cynical.  Peg Leg danced like a dream, incorporating his wooden leg into his routine in heart-stopping displays of balance and grace.  I loved that he didn’t have a leg-like prosthesis, but a humble wooden peg.  He wasn’t hiding, he was what he was, but he wasn’t defined by it either. He was totally in the flow of his dance, and so is the viewer.

The sculpture here, by Joe Thompson, is an example of a work of art created by being one with the target.  Crafted from nuts and bolts, this abstract metal sculpture nevertheless powerfully conveys a sense of arrested motion and the graceful form of the spirited living human body .  Ron Barnett in GreenvilleOnline, quotes a Bates relative at the unveiling:

Bates relative, Veldon Bates, said he thought the statue captured the essence of Bates’ perseverance and determination in turning his handicap into a blessing. “I guess you could say the hardness of the nuts and bolts is basically the way he came up — hard in life,” he said. “I think it’s nice.”

Sculptor Joe Thompson said he tried to convey Peg Leg’s indomitable spirit with each piece of metal he welded together. “Reflecting on this remarkable man, I realized that he organized his life around a very straightforward and clear idea: He decided that he wanted to dance no matter what,” Thompson said. “In every photograph of him, he is smiling. If you watch his clips from the Ed Sullivan show, you see a man filled with happiness, determination and vitality,” he said. “And so it was through this very simple idea of doing what he loved that he transformed himself and transformed the world around him. Dance is what he did, and dance is what I hope to convey in this work of art.”

Sculptors, dancers, musicians and writers who stay with us, whose works powerfully affect us, affect us precisely because they are able to convey something beyond themselves.  They may or may not practice archery, but they know how to hit a target.

Sculpture Peg Leg Bates 1255172_290453047762733_1388485100_n

 

 

New Book Available for Review: “What Doctors Feel: How Emotions Affect the Practice of Medicine” by Danielle Ofri August 8, 2013

Filed under: Writing and Healing — Sara Baker @ 2:57 pm

saratbaker:

I’m looking forward to reading this!

Originally posted on Centre for Medical Humanities Blog:

“Danielle Ofri’s newest book, What Doctors Feel, is a look at the emotional side of medicine—the shame, fear, anger, anxiety, empathy, and even love that impact patient care.Contemporary media portrayals of doctors focus on the decision-making and medical techniques, reinforcing an image of rational, unflinching doctors. But the quality of medical care is influenced by what doctors feel, an aspect of medicine that is usually left out of discussions of health care today.

Drawing on scientific studies as well as real-life stories from her own medical practice and other physicians, Dr. Danielle Ofri investigates the impact of emotions on medical care.With her renowned eye for dramatic detail, Dr. Ofri takes us into the swirling heart of patient care. She faces the humiliation of an error that nearly killed her patient and the forever fear of making another. She mourns when a long-time patient is denied a heart transplant. She tells…

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The White Rabbit July 31, 2013

timeArtists, and the old, and the sick and the unemployed, often experience time in a way that non-artists, the young, and the well-employed do not.

 

This is not all bad, and can be good.  Nora Gallagher in her recent book, Moonlight Sonata at the Mayo Clinic, speaks of her sense of time changing when she learns that she has a rare and serious illness.  She said she looked at the people on the other side of the “glass,”  the non-sick, the “bizzy,”  who had all been like her, and she realized they didn’t see her, didn’t want to see her. Part of her wants to go back to being “bizzy,” because before she was behind glass, she had a clear sense of herself, her importance, her power, and her place in the scheme of things.  She learns, slowly, to acclimate to her enforced slowness and disability, and gradually comes to readjust her inner sense of time.  Instead of planning and executing, she begins to live in the present.  She says,

 

“If you stayed in the present, if you paid attention thoroughly to the now, what it had in it might come to you.  And if you did not pay attention to the present, you might miss essential information that might be exactly what you need.”

 

I had an experience the other day of transitioning from one sense of time to the other.  At the drugstore/post office in our neighborhood, I bumped into BJ, an artist friend of my father’s.  I have always felt warmly to him—he is gregarious, funny, and kind. I was also surprised to see him out and about, because he has cancer, and has had it for some time.  Truth be told, I wasn’t sure he was still with us until I saw him.  He was jaundiced and seemed to have shrunk a bit, but his eyes were full of mischief.

 

I was just leaving and had in my hand a list of errands to do.  My engine was revved and I didn’t want to linger.  But linger I did, because once we got family news out of the way,  he started regaling me with stories of his adventures with my dad, who has been gone eighteen years.  I was happy to hear about Dad having a good time—I think BJ might have egged him on to some shenanigans.  Then somehow we got on to writing letters, and I told him how delighted I was to get an actual hand-written note from my friend, who refuses to be “social media-d.”

 

We were off and running.  I glanced down at my to-do list with the sinking feeling I wasn’t going to get anything done.  BJ pulled out his pen, a Mont Blanc and told me how he writes with it on Crane stationary.  Then we talked about paper, about the satisfaction of writing on a good thick rag paper, and I felt suddenly nostalgic for stationary and fountain pens.  He says he spends a lot of time writing letters to old friends, all of them decorated with sketches.  One elderly woman had her maid read all her letters because of macular degeneration, and when she died, the maid wrote him and asked him to write her—she missed his letters!  He used to write another friend and when he died he wrote his wife, who shared them with her sister and when the wife died he wrote her sister, who shared them all with her cronies in a home in Florida.

 

Having thoroughly relinquished my future plans for the day, I stood there is awe of him.  Here he was, sick, but keeping all these people entertained and engaged while the rest of the world rushed headlong—no time, no time, said the white rabbit—to what?  Really, what was so important?  What is important, a wise woman said to me a few days ago, is Presence.  And that was what he was sharing with me, and so many others.

 

Funnily enough, I got all my errands done.

 

 

 

 

 

 

 

 
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