The Art of Medicine in Metaphors December 20, 2012

Fellow “healing writer” blogger, James Borton, has just come out with a new book , The Art of Medicine in Metaphors: A Collection of Poems and Narratives.

I met James at the 2011 Examined Life Conference hosted by the University of Iowa Writing Program and the Carver College of Medicine and was riveted by his story.  Like many of us who have experienced a life-changing health crisis, he returned to the world with a mission.  He began the blog, allheartmatters.com, where he generously writes about Medical Humanities and solicits healing narratives.  His anthology is a welcome addition to the growing literature on writing and healing.   He describes his book below:

Poetry and stories about illness address more than just the symptoms of disease. Narratives and poems are the pathways for people to make sense of and discover meaning in life’s difficult events. Three years ago, I learned a painful lesson about how a pa­tient bleeds a story. Following a triple bypass, I emerged after nine dark days from a coma after losing all of my blood from a ruptured coronary artery. It is no wonder that my call to others to learn about their broken health stories met with remarkable responses.

Every patient’s story, whether it be through the admission report, the clinical medical chart, or the arc of an entire life history, translates into a valued healing narrative. The poems and stories presented in this anthology are all written from the heart. They are about losses and they are also about gains. What patients and doctors continue to understand is the power of telling and listening to personal stories.

This anthology includes thematic re­flections on death, diagnoses, fears, humor, joy and transforma­tion—both physical and spiritual. These writers all succeed in telling their story, sharing their brokenness, discovering healing metaphors, and—at unexpected moments—offering grace and renewal.

James Borton teaches in the English Department at Coastal Carolina University and is a faculty associate at the Center for Bioethics and Medical Humanities at the University of South Carolina. He is also a past National Endowment Fellow at Yale University.

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The Alchemy of Illness July 27, 2011

Miserable and, (though common to all) inhuman posture, where I must practise my lying in the grave, by lying still, and not practise my Resurrection, by rising any more.

 

–John Donne, Meditation lll Devotions upon Emergent Occasions,

 

Felled again by illness, I am advised to rest, the one thing I do not do well.

 

I was fine nine days ago, having managed a road trip and a two week family vacation fairly well.  I just had time to congratulate myself on that feat when the too-familiar tingling sensation that precedes a fever crept up on me.  I chose to ignore it, and the following day, I was struck by a more severe headache and chills.  By that night I was in full-blown distress—fever, chills, body racked by joint, muscle and skin pain.  My life dissolved into misery—I seeped in a nasty brew of worthlessness and self-laceration, the good of my life leeched away by pain and weakness. I felt alone, isolated by my pain, which, like a jealous lover, kept me all to Itself. It felt as if I were being punished for some grievous yet unknown sin.  It didn’t matter knowing my bodily integrity had been invaded an infectious agent. In the thick of illness, it felt as if I’ve been cast into a dark pit by some Malevolence.  It felt personal, and only the language of the Psalms seemed equal to expressing it.

 

Two days later, still ill, but upright, I was able to consider less feverishly that my illness was a course correction, that I was “off the mark,” which is how Buddhists think of sin.  Buddhists, it seems, look at illness as an opportunity for enlightenment, that the illness itself is he cure, not the affliction.  Even John Donne believed that in the symptoms of illness were the seeds of healing, if we could attend to them.  I am still working on this process of dialoging with my symptoms, but what interests me now is how I (and we) so often think of illness as a failure.  What if we didn’t, what if we simply accepted our illnesses as perhaps necessary time outs?

 

I’m reading Nabokov’s Speak, Memory, and he recalls his childhood illnesses almost fondly, and how they seemed to enhance both perception and imagination.  In his novel, The Gift, based on his early memories, he writes “Mother unhurriedly shakes the thermometer and slips it back into its case, looking at me as if not quite recognizing me, while my father rides his horse at a walk across a vernal plain all blue with irises.” (G, 33).  For Nabokov, we might imagine, illness gave his sensitive self time to process all the sensory information which, as a synesthete, bombarded him.  It gave him time to investigate his imagination.  Instead of diffusing his sense of self, it seemed to solidify it.

 

Another contemporary writer, the splendid Anthony Doerr, in his incredible short story, “Afterworld,” (The Memory Wall, Scribner) describes an elderly Jewish woman, Esther, who had, as a fifteen-year-old epileptic and an orphan, escaped the Holocaust.  In the story, she is saved from the ovens by a doctor who saw value in her.  Despite the accusations hurled at her that she should be “put away,” that her illness rendered her worthless, in-valid, it was this very illness that gave her a unique sensitivity which the doctor recognized and valued. Now, in her eighties, the epilepsy and hallucinations that both plagued her and gave her great imaginative riches, are no longer controlled by medicine.  In the present time, she is being taken care of by her grandson, Robert. “In Ohio seizures flow through Esther….The seizures no longer seem to impair her consciousness so much as amplify it….Maybe, she tells Robert, during her clearest moments, a person can experience an illness as a kind of health.  Maybe not every disease is a deficit, a taking away.  Maybe what’s happening to her is an opening, a window, a migration….”

 

Kat Duff, in her classic The Alchemy of Illness, also speaks about illness as an alchemical transformation that offers the sufferer an opportunity to engage deeply in spiritual processes. She quotes Paracelsus, a renowned physician and alchemist of the sixteenth century:  “Decay is the beginning of all birth…the midwife of very great things!”

 

No one chooses to be ill.  And I certainly hope to regain some degree of health.  Yet here it is, and I do have a choice in how to address this illness, how to imagine it, how to engage with it.

 

 

 

 

 

 

Has My Ship Come In? March 31, 2011

Below is a piece a participant in my writing workshop wrote.  It has a lot to say about the difficulties of working in healthcare, and about how a good metaphor can be a bridge to opening up understanding.

I always remember hearing the phrase,  “Has your ship come in?” or  “Maybe your ship will come in”  all meaning some time when your good fortune arrives.

I was sitting in a place at my work, a spot that I go to whenever I can because it has a huge window facing the western sky.  In a large multi-storied hospital, a window like that , where I can sit and work for a bit is at a premium.  So, one day I was sitting there working and looking out at the sky.  People were in and out then a nurse sat down beside me.  She is one who is usually a bit gruff, straight-faced and a no-nonsense woman, friendly but not especially warm.  You just know she means business, all business.  And really, nurses these days have to be all business.  There’s just not much time for anything else.  Complete the task and move on to the next one.  Have a discussion about your patient being homeless  or unable to buy their medicines as you go down the hall to the next task or standing at the medicine cabinet or over lunch.  You know, that half hour quiet time you’re supposed to have in a 12 hour day.  No time for teasing or joking or even breathing.

So, this nurse, the no-nonsense one, sat down beside me and I commented on liking to sit there because of the view.  I went on to say how beautiful the clouds were and how some even looked silver-lined.   She immediately said “I want that cloud, the silver–lined one.”   I quipped back, “Is that your cloud coming in?”  making metaphorical reference to the ship of good fortune coming into her port,  tying up to her dock, anchored, all her’s.   She laughed out loud and said , yes, she thought it was her cloud coming in.  It was unexpected, her laughter, and I felt the shift in our exchange.   I felt her heart open.   When I came around to face her , I found a blazing smile and her head cocked to one side as if in question of what had just happened.  I smiled back and held her gaze to let her know I’d  felt it too.

Each time, now,  that I see her, her openness remains.   I sometimes feel a little hesitation but then she opens again,  gives me a smile and looks into my eyes.  I felt then and now with each encounter as if my ship or silver-lined cloud has come in , also.   I am also reminded in difficult encounters with others how little it can take to shift the feeling, make the connection and travel on that ocean liner to a different place.  Cruise ship, skiff, river canoe, pontoon boat, any boat will do.  It’s the water, it’s the flow, it’s the clouds floating by.                                                                                                                                                                           Sandra Scott  RN

Making it Human March 16, 2011

 

One of the participants in my workshop wrote this moving and authentic piece about her fears as she faced new health problems and a new doctor.  She also talks about issues of ageing and the unexpected relationships age can bring.  But most importantly, she describes how a doctor’s ability to listen, really listen, can have a healing effect.

 

Fears

by

 

Eileen O. Fancher

 

 

 

 

I have a new doctor.  I am  dismayed as I watch him walk  into the room  for he is young enough to be my son.  I want a seasoned doctor.  One who has been in the business of medicine  long enough to have seen everything  that I might ask him to  look at and diagnose.

 

I am fairly new at seeing doctors and now I have acquired five in a short span of time.   This new doctor is movie star handsome.  His good looks make me think perhaps he will be egotistic and not have very much time for a patient old enough to be his mother.

 

On our first visit he helps me up on the high examining table and lets me sit there, feet swinging and anxious while  I start  my long list of woes. I have come to see him because so many issues  have piled up that they are about to overwhelm me.  I have made a list and I want every problem solved.  I can no longer live with so much  uncertainty and worry about what is happening to my body.

 

He sprawls back in a chair and he listens and listens and listens.  He lets me describe every  complaint that I can’t seem to heal or cure.  He listens as I tell him a complicated  tale of my concern about  my fears of the what ifs and the maybes and he nods silently without comment.

 

Even though I sound as if I think that I am the doctor and I would like this done and that attended to, he never reveals any emotion except a continued deep and patient interest in every word I am saying.  Then he starts his quiet interrogation of just when it was that I noticed that symptom or how  I reacted to that medication.  He takes so much time with me that  after awhile I begin to feel edgy and anxious.  Surely he’s getting ready to make an exit. .   I am not used to this attention.  I’ve grown accustomed to a doctor breezing into the room with a clipboard, checking off items on a list and scurrying off.

 

Finally, when I have exhausted my anxious litany, he stares into space  for awhile  and then  announces quietly what we are going to do.

 

He makes no move to leave and so our conversation moves on to other subjects.  He is well informed and interesting. As I grow older, younger people often become involved in long conversations with me that go from one subject to another. This is a surprisingly pleasant benefit of aging….playing the role of attentive parent.

 

Finally, he rises to leave then stops in the doorway and looks back at me.  “I won’t have the good health that  you have when I am your age,” he says quietly. He starts forward and then turns back again, “In fact, I don’t think I  will live that long.”  This startles me and I   have no answer.   I pick up my purse and coat and join him to  walk down the long  hall.   I wait while he takes the time to find information and  fill out some  lengthy forms.  Then he presents me with the careful, hand- written report that I am to carry with me.

 

As I drive away in the sunshine with music playing on my car radio, I realize that I feel extremely happy.  No just slightly happy but joyously, exuberantly happy…happier than I’ve felt in a long time.

 

It’s then that I  realize how deeply I had been fearing what lay ahead. I had lived with those  fears for a long time, not putting them  into words for  my friends and family  because my fears were shapeless and  unproven,  perhaps even baseless and without substance.  Being able to  voice  everything that was on my mind today had given me a wonderful feeling of release.

 

 

The  intense joy I feel  as I drive home surrounds me  like a warm blanket.  My anxieties have melted.   Thinking  back, I realize that never once did my new doctor reassure me in words that everything was going to be alright.  Instead, he quietly listed the steps  we would follow to find out the answers.

 

Doctors who listen and take the time to explore a patient’s fears have enormous influence on the patient’s health.  I wonder if they know just how much.   There is more healing in quietly  listening  than in all the prescriptions ever written.

 

Then I think about my new doctor’s strange comments about not living a long life;  about his need  to share  his own fears.  I feel bad that I could think of nothing to say that might have been of some comfort to  him and, as I turn out onto the main highway,  I  hope that he has someone who will sit back and listen to him,  for he too seems beset with worries about his future and the unknown.

 

 

 

Fish Gotta Swim, Birds Got to Fly April 26, 2010

My soon to be nine-year old neighbor, Olivia, brought over her big find of the spring: a tent caterpillar .  She had found an old glass fish tank and lined it with dirt and leaves, put her new friend in and then “asked Google” about the critter.  She and Google must have had quite a conversation, because Olivia was there to tell us that he was an old caterpillar, and look, there he is beginning to spin his web.  “Where does it come from?” she said, looking at the creature.  Her mother and I squinted.  “It seems to be coming out of its mouth,” her mom said.  I told her spiders spun their silk out of their tummies (probably the limit of my great repository of knowledge about the physical world.)  We sat and watched the tent caterpillar do its thing.  “Google said it turn into a moth and only lives three days,” Olivia said gravely.  We all wondered at this.  My husband added that tent caterpillars are despised in this part of the world, their large webby cocoons festooning trees obliterated by the animal’s hunger.

Today I was talking with a friend, a painter, who is going to teach painting at a seminary, where all the seminarians are required to take classes in all the arts.  What an idea!  I told her about my interest in medical humanities, and we compared notes on teaching seminarians and med students, often young people who have had only limited exposure to the arts.  “I’m not trying to make artists out of them,” she said, “but bring them into the flow of the process, let them get lost in the process.”  I told her of often having people in my classes who had had little or no previous training, and how, once they got past fear and inhibition, they often produced powerful work.  “Creativity is part of us,” she said.  We talked about how creativity grounds us, heals us, quite contrary to the popular idea of it being the purview of a select, esoteric few.  It is, indeed, our birthright.  What teaching art to these students does is simply give them some tools to explore themselves, their life situations, their feelings.  It comes out of us naturally, just like the tent caterpillar’s cocoon.

I’ve always felt a great love for the “writing spider”, the large black and yellow spider that, if you are lucky, graces a summer garden.  Just as the spider must weave her web, so to I must write, others must dance, make art, sing their songs, knit, design bridges, solve equations.  I met a wonderful artist at the Hambidge arts colony once who said the how wasn’t the question, it was the why.  She could figure out how, but she didn’t know why.  She just knew it was what she had to do to be whole.

Olivia’s caterpillar is making great strides on his cocoon.

An Abundance of Need January 21, 2010

In The Wounded Storyteller, Arthur Frank quotes Nancy Mairs, poet and essayist, as saying that “all persons have abundances and all have lacks….your abundance may fill someone’s lack, which you are moved to fill….”  I remembered this the other night after my first meeting with my winter class at the cancer center.  I had not taught for almost 6 months.  In those months, my life revolved around therapy for my broken back, and it has been less than a month since I shed my body brace and have been able to drive. In the months of rehabilitation I lived a twilight life of sleep and physical therapy. Slowly the more normal rhythm of life claimed me: church on Sundays, lunch with friends, short forays of shopping, longer walks with my dog.  But I still feel fragile and tired. So when I drove to work Tuesday afternoon, I was more aware of that fragility than my competence.

This class was a mixture of women who had taken the class before and several newbies.  That is always a challenge because I need to bring in new material instead of relying on the tried and true, and perhaps more importantly, I need to make sure that the newbies were made  to feel part of a group that has already forged its own dynamics.

So, the first thing I asked of the group was to tell their stories.  They didn’t need to be coaxed.  A new, lovely, quiet lady opened up with a harrowing tale of  family members felled by breast cancer, gene testing, prophylactic mastectomies, and then finding that she had a rare form of cancer in her abdominal lining.  Another woman told  how she rejected implants and instead had flowers tatooed on her flat chest. Each story was like that, trauma upon trauma, terrifying diagnosis and painful treatments, including stories of loneliness and heartbreak.  By the time they were done, I realized I was the only woman at the table with breasts.  The storytelling, though, had brought the women into a deeper connection with each other, an almost palpable feeling of sisterhood.

Yet fragile myself, I felt in danger of being swamped by the sheer concentration of pain.  I was tired and in pain myself, and stressed by my wish to hide those facts. How could I offer anything to counter the pain of these brave women?

One of the first activities we always do is collaging our journals.  It is a relaxing, fun exercise, allowing for easy exchanges in the group.  More importantly, the images we are drawn to often are potent symbols for healing.  While we were collaging, one of the participants turned to me and said, “I noticed you were moving as if you were in pain. May I do some Reiki on you?”  I told her yes, I was in pain, and I would appreciate her help. Her hands on my back radiated warmth and I could feel my muscles relax.  And that was when I looked around the table and realized that I was not the helper, but that we all helped each other. We all had something to offer, even if it was an abundance of need.

One of the things I love about this work is that I can’t be anything else but what I am at that moment.  Perhaps the main competency is simply that: authenticity.  Driving home that evening, I turned off the radio, and allowed myself to savor the pink clouds in the west, the faces of the people walking in the warm evening air, the new ease of my body.  My own fragility no longer seemed like an obstacle to be overcome, but the very thing which I offered to others.

Why are You Crying? July 24, 2009

It was 1 am the third night of my stay in the Trauma Clinic. I’d been weaned off the morphine that had kept the worst pain of my shattered torso at bay, and I had been told that I would leave the clinic the next day or the following day, as soon as the body brace had been made and I could walk in it. My brother, who had stayed with me the first three days, had had to leave. My husband and son were Arizona, trying to drive back East and find a way to get me home. All evening there had been calls back and forth trying to figure out how to get me home. I was still reeling from the accident, from the pain,and now from the stress of trying to figure out the next step. I lay in the sand I’d brought in with me, sweaty and filthy, and I wept. Not sobbing or groaning, just weeping.

A light knock on the door and a young resident came in, a pleasant looking young man with blond hair and a sprinkling of freckles, he came up to my bed and stood over me. “Why are you crying?” he asked, and there was an edge of irritation in his voice. I looked up at him. “I hurt. I’m being thrown out of the hospital. I don’t know how to get home.” He began with the same spiel the social worker had unleashed on me earlier: “Do you know how lucky you are? Do you know that same night another man died and another came in, paralyzed?” I put up my hand to stop him, but did not stop weeping. “I have thanked God with every breath in my body since I was dragged from that ocean,” I told him, “but I am in pain.” I did not stop weeping, and I looked him straight in the eye. There was a long pause as he seemed to cast around for the right response. Then, suddenly, his whole body seemed to soften, and he leaned towards me, “Oh, I understand,” he said, “you’ve got a broken back, you are in pain, and now you have to deal with the logistics to get home.” I nodded. “Thank you, Doctor. That’s all I needed from you,” I said, noticing that my weeping was abating. What I needed, more desperately than anything else, was someone to simply listen and accept me, in all my pain, at that moment, and by doing so relieve the frightening isolation that attends being so broken, especially in a strange place.

The weeping had begun earlier, and curiously I had not felt ashamed of it. It had seemed true, real, not gratuitous or manipulative, but simply what my body was doing in response to what I had been through. I found real relief in it. The social worker had come earlier and also questioned my weeping, suggesting that I might need anti-depressants. “Are you kidding? ” I said to her, “I don’t need to be drugged. I’ve just been through and am still experiencing a trauma. I’m in a trauma clinic.” She chewed on this a while, “Well, I guess if you were happy that would mean you were in denial,” she agreed. I looked at her, incredulous. What happened to the sense you were born with? I wanted to ask her.

When the doctors had come to tell me I would be leaving the next or following day, I was again incredulous. As unaccommodating as the experience of being in the hospital had been–I had not been bathed or turned, the sheets had not been changed, the nurses all seemed to be running marathons and to ask for a bed pan seemed to put them out–I was overwhelmed at the thought of getting into a body brace and flying 500 miles alone. Oliver Sacks writes of a similar reaction to the news of his release from the hospital after a traumatic injury to his leg. He said he was “dead scared of leaving.” The hospital had been a protected space where he had not only been tended to medically but faced his dissolution. To leave its circumscribed borders was to him to reenter a world that could not understand his dissolution. I too felt the fear of going out into the world in such a fragile state.

Yet the attitude and tone of the staff was to hew to the heroic model. When I took my first faltering steps in the brace, they were there to cheer me on. To smile through your tears, that was being a good patient. To cry or question, however, was frowned upon. Only Emily, my beloved nurse, dared to question the party line, flying into a fury when she heard that they were going to discharge me so early. “You are not ready, this is crazy,” she said, and I could see a few tears of her own. When I confronted the PA, a lovely young woman, about the fact that I had not had any PT or OT, that I was still in tremendous pain, she read me the criteria for “no medical necessity”: pain under control and you walked 120 steps. We both knew this was the formula dictated by the insurance company. “That,” I told her, “is magical thinking.” It was an uncomfortable moment, but not for me. There was almost nothing about this situation I could control, but I could refuse the script of the good patient. I could stay centered in my experience, and not tailor it to make others more comfortable.

Discharge me they did. (Probably with great relief!) I was wheeled up in my wheelchair to the Air Tran desk sporting my new body brace, where the agent, an Indian woman of about sixty stared at me incredulously. “You don’t look in any shape to travel,” she said. “I’m not,” I said, “but that is the system.” “A cold system,” she said. On the plane, I was the object of an almost overwhelming amount of sympathy; here there was no adherence to the heroic model.

The story has a good ending: I arrived home, was welcomed by a loving family and community, and will evenutally mend. But I recount it here for several reasons. It is my story, and by telling it, I am able to find my voice and my humanity in a system that pressures a patient to give up her voice. I share it also as an example of how modern medicine limits its concept of responsibility, and in doing so, abandons, sometimes, its commonsense . Arthur Frank formulates it thus: “According to modernist universalism, the greatest responsibility to all patients is achieved when the professional places adherence to the profession before the particular demands of any individual patient.” He cites William James “I am convinced that the desire to formulate truths is a virulent disease….as if formulas about the Universe could ruffle its majesty and as if the commonsense world and its duties were not eternally the really real.” The formulas, in this case, revolve around the guiding principles set down by insurance companies and hospitals regarding the ideal patient. The commonsense world and its duties–the comprehensive needs of an individual patient, in this case–are sacrificed to those principles.

Why are you crying? Why are you asking?

Reading the Patient, Reading the Text June 5, 2009

I broke my own rule, the last day of our workshop. Instead of keeping my focus on one of the participant’s texts, I focused on her, on what the startling absence of feelings and information about her mother’s illness and her subsequent fostering out at age eleven, meant. The piece was stunning, really, constructed in two parts: in the first, she describes with a child’s heightened sensitivity to sense, her mother cooking and cleaning, and yet also suggests an adult’s point-of-view when she writes: I wonder what dreams my mother had other than marrying her sweetheart and leaving her natural art ability wash away into the old style washing machine? There are wonderful descriptions of the freedom and fun the family of eight children had, the chicken dumplings her mother cooked–I watch my mother in our small kitchen standing and patiently waiting as she stirs another pot of chicken and dumplings–and then the information that her mother became ill and all the children were sent to other homes. There is nothing here about how that little girl felt. In the second part, she goes on to describe how she was burdened by chores in her new home, and how she longed to take ballet lessons, but couldn’t. In the piece there are themes of oppression and freedom, of dreams of artistry dashed, and a seeming identification with the absent mother.

In the discussion of the text, I mentioned the “presence” of an absence in the piece. This woman, a breast cancer survivor, as well as the survivor of her childhood family diaspora and a young unhappy marriage and subsequent single-motherhood, said, “Well, you know, sometimes it is like Pandora’s box. You are just afraid of what might come out.” We talked a bit more about how some things were very hard to look at. It was generally agreed on that we must look, but that it was sometimes overwhelming to do so.

James Pennebaker has done research that strongly suggests that people who have experienced undisclosed traumatic events before the age of 17 are much more likely to be chronically ill, have cancer or heart conditions. It seems that many if not most of the cancer patients I work with have had traumatic backgrounds, and this patient certainly seemed to. But the tricky part of working with people who, for their survival’s sake, have “encrypted” trauma, is that everything in them does not want to open that Pandora’s box, even if they intellectually understand that it could lead towards healing.

I thought of her piece as a whole–the fluidity of compelling childhood memories, then the less compelling reportage of feeling both needed and overwhelmed in her new life, and the ending, which seemed to not be organic to the piece at all: I have learned how to better understand who I am and to accept what I need to do to build onto the next level of who and why I am. Notice the stilted language.

I think we would have been better served to stick to reading the text, and let the patient make her own conclusions, to help her see not only “the presence of an absence” but to non-judgementally  observe the artistry: the two parts, the echoing themes of longing for freedom, of dashed hopes, the changes in language–the way it became less lived, more reportage. In this way, we reflect back to the patient, not what we think about her psychological state of mind, but what the text she has created conveys to us about her experience. This may seem like a fine distinction, but I think it has merit. She can then judge what she has written against what she wishes to convey, and from that stance perhaps move deeper into her own experience.

With many patients who have been traumatized, there is often a resistance to go back into their histories. In these cases, I have often found that writing fiction and not using the first person can help them get to the emotional truths of their experience in ways that going directly to their memories does not. In either case, though, it is important to read the text, not the patient.

Craft and Catharsis May 7, 2009

How important is it to focus on craft when we conduct a healing writing workshop?

As artists in healthcare, I think many of us get to this to question. We, ourselves, are constantly striving to refine our own work, but the aim of facilitating a healing writing workshop is not to create artists, but to create an opportunity for healing. So what is the role of crafting, of refining style and mastering elements of good writing, in the healing writing workshop?

Belleruth Naparstek, in her book, Invisible Heroes:Survivors of Trauma and how they Heal, states “those who wind up finding something useful to do in the midst of a traumatic event, who can take charge and effect some measure of improved outcome, usually wind up without symptoms of trauma or with feewer or lighter symptoms, than those who are frozen in hopelessness.” She goes on to say that through this doing, traumatized persons experience “the joyous self-love that comes from accomplishment.”

Writing something as small as a fable, or a short poem may seem insignificant compared to the overwhelming task of fighting cancer, but that small text represents an act of self-agency, a defiant rejection of hopelessness. To create out of the self, when the sense of self and its symbolic order has been fragmented, is often an opportunity not to be restored to a former wholeness, but to find a different wholeness, one which acknowledges loss, but is not devastated by it.

So, what does all this have to do with craft? According to Mark Robinson, a British researcher and teacher, a lot. Crafting that text, that artifact, seems to be an inherently important part of the process of healing. He states: “To sum up, there were strong indications that writers of all kinds felt thy gained psychological benefits from their writing practice. Only in a few cases was this separate from the normal literary writing and redrafting process necessary for good writing of any genre, form or school. An interest in quality, in producing a text which was more than instant or an outpouring but in some way crafted, was clearly integral to the process of writing enhancing  well-being.”

Many professional writers became writers first driven by a need to find healing, or stumbled upon writing as a way to experience the “joyous self-love that comes from accomplishment.” Through that experience, we took up the discipline of the craft, seeking to increase mastery as well as joy. I think it is not so very different for patient-writers. Although they may have various degrees of committment to their writing, for most of them, learning to craft their texts with as much skill as possible is an important aspect of their healing.

Vibrations of the Spiderweb April 18, 2009

In the novel, Kristin Lavransdatter, set in Medieval Norway, the middle-aged protagonist reflects on her brother’s troubles, which, while they don’t affect her directly, affect her nonetheless, because, she reflects, they are part of each other. She likened it to feeling the vibrations along a spider’s web, how a disturbances in one part affect the whole. This image has stayed with me over many years, not only as an image of how families are connected, but also of how sensitive communities of any sort are to the well-being of their members. Whether we are aware of it or not, we are all a part of a a social matrix which affects our health. I just read a blurb–was it in Oprah?–that if your friend’s friend is happy, that increases your likelihood of being happy, even if you don’t know this person.

We Americans like to think of ourselves as rugged individualists, self-made, self-determined. That belief can provide a lot of pride when the wheel of fortune rises to the top, but it can also crush one when the wheel of fortune rolls to the bottom. Self-reliance is a good trait, up to a point. Past a certain point it creates a lonely society.

I am thinking in particular of the various feelings of failure and guilt that often accompany a chronic or acute illness. Instead of seeing our situation as part of the common lot of humanity, we often focus on our individual failures–if only I had eaten better, gotten more exercise, not gotten divorced…..fill in the blank. And these feelings of guilt and shame only further isolate the sick person, creating more stress, and inhibiting healing.

The healthy don’t want to hear the stories of the sick, and the sick know it, just as the married don’t want to hear stories of the divorced. The mere acknowledgement of the experience of illness, some seem to believe, gives it too much power. And so we isolate the ill and refuse to hear their stories and think thereby we are preserving our own health. We are as superstitious as any Amazonian tribe, and perhaps not as wise.

But the vibrations are still felt on the web. By not giving the ill a chance to express their experience in all its chaos and pain, the chaos and pain remains, affecting the community nevertheless. It inhibits the healing of the individual, but it also inhibits the healing of the community. By not finding ways to express the lived experience of illness, all of us are diminished in our humanity. Ellen Dissanayake, author, professor of music and lecturer on the nature of art, asks, what is art for? in her many articles and books. Her answers have great implications for our understanding of how the arts strengthen community and individual healing. (http://ellendissanayake.com/). The arts can provide that bridge between the country of the ill and the country of the well, increasing all of our capacities for understanding, and also for compassion and joy.