Word Medicine

Writing and Healing

Body and Voice: Finding Self-Trust in the Midst of Illness October 24, 2014

Filed under: Writing and Healing — saratbaker @ 4:42 pm
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Nothing can throw me off-center faster than a bout of fibromyalgia.  Recently, I had an experience of intense pain that sent me into panic mode. I almost crawled to my doctor for medicine—I was way beyond the yoga/swimming/meditation panacea.  Worried that this might be something else, that my body was really betraying me big-time now, I fretted over Google, surfing for any information I could find. I had finally done it, I thought, finally ignored my body long enough, pushing through pain and discomfort, and now my body was roaring back. After much searching, I found a relevant article about trigger points that seemed consistent with my symptoms.

Having a cognitive framework relieved my anxiety, and luckily, the meds worked. Or time worked. Something worked. I changed some posture habits, began some exercises. But what interested me was those days before I got some kind of handle on what was going on.  I experienced fear–a profound sense of  ego disintegration, of losing my sense of power, of my confidence in navigating the world. I found myself casting about for answers, as if someone else could tell me what was going on. It was only when I was rested, in less pain, and able to amass information, that I finally was able to regain my poise.  I remember the moment when I thought—I can make an assessment, I can make decisions that will help this. I can trust myself. Energetically, it felt as if I was consolidated, rather than fragmented.

The fragmentation I experienced briefly was akin to what Arthur Frank in his seminal book, The Wounded Storyteller: Body, Illness and Ethics, describes as the chaos initiated by a major illness or event like a heart attack.  Frank himself, a sociologist, experienced both cancer and heart disease. Through his own experience, he was able to describe the stages of  our psychological response to illness, the first being chaos. He cautions those who love and work with people experiencing chaos, to simply witness it, not rush to tidy it or minimize it. He describes the burden placed on the ill person to be cheerful, positive for others. He posits that it  is only by experiencing the chaos that we can find our way through to a new narrative, whether one of accepting an illness and finding meaning through the quest, or indeed restitution. “Seriously ill people,” he writes, “are wounded not just in body but in voice.”  Without body integrity, we lose voice. Without voice, we also are fragmented.

I’m glad that this whole experience happened over a matter of weeks, not months or years.  But I was reminded again of how real the journey is from chaos to narrative. I’ll end with the quote prefacing Frank’s book:

“I had grasped well that there are situations in life where our body is our entire self and our fate. I was in my body and nothing else…my body…was my calamity. My body…was my physical and metaphysical dignity.”-Jean Améry

-Wounded Storyteller

 

Restoring Balance September 19, 2014

Filed under: Healing — saratbaker @ 4:56 pm
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Recently, my daily routine has been thrown off by the usual exigencies of life:  illness, weddings, fleas.

Instead of getting an early start, walking the dog and meditating in the cool of the morning, I seem to be rushing out of the house, leaving things undone—laundry, bills, insurance claims—myriad small things that add up to a crushing sense of playing catch up all the time.  I make lists:  get labs done, make vet appointment, pack Adam’s clothes, Jiffy Lube.  On the car radio, I hear of war and rumors of war, of conflicts whose intricacies I cannot hope to understand, and I have the sinking feeling of a widening disaster to which I’m somehow unwittingly a party. So much information to take in, to process.  My email is an overflowing disaster, as are the notices falling to the floor from my desk.  I seem to work unceasingly, yet have little to show for it.

I want more than anything to create order, simplicity and meaning.  I long to lose myself in the garden, where I can drop down into a river of being, my arms, hands, eyes working without thinking, my skin caressed by breezes, my ears filled with the soft rustle of the bamboo, the mourning dove’s call.  Yet I let everything else come first, and so I end up frazzled and depleted.  I haven’t solved the world’s problems or even my own.

Recently, I came across an article by Jerome S.  Bernstein which looked at Native American, in particular, Navajo, understandings of healing.  For the Navajo, illness is a symptom of lack of balance or harmony in an individual or in a community.  The Navajo believe that it is up to humans “to restore harmony when energies are out of balance.”  According to Bernstein, a medicine man he worked with put it this way, “Balancing the individual balances the world.”

The poet Adam Zagajewski in his wonderful poem, “Try to Praise the Mutilated World,” speaks to the tension of acknowledging the world’s brokenness and ruin, while also offering a way to restore a sense of harmony by remembering beauty:

 Try to praise the mutilated world.

Remember June’s long days,

and wild strawberries, drops of rosé wine.

The nettles that methodically overgrow

the abandoned homesteads of exiles.

You must praise the mutilated world.

 Further into the poem, he suggests

 Return in thought to the concert where music flared.

 I suppose that we rarely manage to find perfect balance in our lives, but the poet suggests that by both experiencing nature, beauty, and love and then by remembering those experiences, we can balance the ugliness of much of life.  What I really love about this poem is that Mr. Zagajewski doesn’t ask us to pretend that life is other than it is.  His is the mind that can tolerate paradox and live between the tension of the two.

In order to remember beauty, we have to partake of it.  So I’m going to try to make time for my garden, and for music, even if my to do list grows longer.  Maybe if I can restore my own balance, I can add to the harmony of the world.  It’s a nice thought.

 

 

 

 

 

 

Boon August 22, 2014

My daughter called last week, weeping into the phone about Robin Williams death.  “It is as if a part of my childhood is gone,” she sniffled, “he was so great.  I just loved him.”

 I was happy that my daughter at 28 could feel things so deeply.  On hearing the news, I was shocked and saddened, but it didn’t come at me with the force it did her.  We become drier, I suppose, with the shocks of living, if we survive to middle age.  When I heard that Mr. Williams had Parkinson’s as well as the black dog depression,  I shook my head ruefully.  It just keeps coming, it never ends—“it” being life, La Vida, as my housekeeper says.  Life is full of troubles, if you haven’t heard. 

 A friend of mine says, “Until three years ago, I didn’t know what people were talking about when they said life is hard.  Life isn’t hard, I’d thought, it’s a blast.  Now I know what they are talking about. Boy, do I.”  My friend is fifty; three years ago her husband left her for another woman.  Another friend’s dying mother has come to live with her.  My friend is up at 2, 4 and 6 am, taking care of her mother, lifting her heavy, numb legs off the bed, supporting her the few steps to the potty.  Her sleep is fragmented. She feels trapped, stressed, alone.

My childhood friend’s mother went through a protracted and painful death this spring.  The day she died, my friend wasn’t with her, because she was seeing a surgeon about her recently discovered colon cancer.  The memorial service had to be put off because my friend had to recover from her own surgery. She hasn’t had a chance to mourn her mother, or herself because her father has Alzheimer’s and she is busy making arrangements for him while getting her parents’ home of forty years ready to sell.

 We have gone through our own harrowing.  One of our beloved children has fallen down the rabbit hole of drugs and alcohol.  It feels as if we’ve been in an earthquake: the ground is Jell-O, and none of the walls seem solid.  How is this our life?  My husband and I are stunned, numbed, shaken.  Everything has shifted, become unrecognizable. 

 And yet. And yet, even acknowledging La Vida as I do, even acknowledging my age, illness and limitations, I still dream of dancing on tabletops, of drinking wine on the coast of Croatia as the sun sets on the Adriatic.  As Jason Shinder writes in his poem, “Middle Age”:

 Many of my friends are alone

and know too much to be happy

though they still want to dive

to the bottom of the green ocean

and bring back a gold coin

in their hand ….

Foolish, maybe.  But how do we survive La Vida without the consolation, the idea of the gold coin?  Without the belief there is a boon to be had, do we just put our heads down and plod through? 

 Robert Pinsky suggests, in his poem, “Samurai Song,”  a boon, but one of subtraction, not addition. 

When I had no roof I made

Audacity my roof. When I had

No supper my eyes dined.

 

When I had no eyes I listened.

When I had no ears I thought.

When I had no thought I waited….

 

When I have no means fortune

Is my means. When I have

Nothing, death will be my fortune.

 

Need is my tactic, detachment

Is my strategy. When I had

No lover I courted my sleep.

I find this poem strangely affirming, especially the line “When I had no thought I waited”.  The speaker is confident, centered, and in command of himself.  He is not thrown by external circumstances.  He does not define himself by his poverty, but by his abundance.  He is able to do this because “detachment is my strategy.”  He, it seems to me, has won this poise not through a life of ease, but a life of adversity.  No one and nothing can take this boon of “self” from him. We may know too much to be happy, but we still can be joyful.

I still want to drink wine in Croatia, to dance the tango in Argentina.  But in the meantime, I am looking for the gold coin right here, right now.PAS_2012_hand

 

 

 

 

 

 

 

 

 

 

For the Week of July 20, 2014: Writing as Prayer August 13, 2014

Filed under: Writing and Healing — saratbaker @ 7:22 pm

saratbaker:

Dear Readers, I’ve been away, but am planning on my regular blogs in the coming months. To get started, I thought I’d repost this lovely piece from Sharon Bray.

Originally posted on Writing Through Cancer:

I’m on my way to Berkeley this week, teaching “Writing as a Healing Ministry, a week-long intensive course for clergy, seminary students and anyone interested in attending.  During the week, we’ll explore the arena of therapeutic writing, witness many different approaches to leading healing writing groups, and by week’s end, each person will define how writing can be a healing ministry – for themselves and for others.  Part of the course is to also experience what it is like to write, deeply and honestly, from the heartaches and struggles of one’s life.  Invariably, we segue into the spiritual aspects of writing to heal, and for many in the workshop, writing turns to prayer.

Prayer.   It’s interesting that in this day of modern medicine, something as basic as prayer has such beneficial impact on our health and well-being. Dr. Larry Dossey’s book, Healing Words:  The Power of Prayer and the Practice of…

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Medicine IS Humanism June 14, 2014

Filed under: Writing and Healing — saratbaker @ 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

 

 
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