A Communion of Sorts June 24, 2011

A Communion of Sorts by edited by Sara Baker with Sandra Scott | Make Your Own Book

Ten years ago, I welcomed my first students to the Healing Writing Class at the Loran Smith Center for Cancer Support in Athens, Georgia.  Little did they know how nervous I was.  I was no “expert.”  Yes, I had a life-long passion for the written word resulting in a respectable number of publications, and  fifteen years of teaching college English.  But my main impetus had been an intuition and desire born of my own mid-life journey.

I was thirty-nine and my writing career seemed to be on track.  My novel had been a finalist in a national contest, I had a scholarship to the Squaw Valley Community of Writers, and I had been publishing regularly in small magazines.  Then, suddenly, everything changed: my father died, I suffered severe complications in childbirth, I was diagnosed with a mysterious and intractable illness, my husband had emergency heart surgery, my mother collapsed with a brain aneurysm and I became her caretaker.  Did I mention I had a thirteen year old daughter?

Just three years after placing my novel in the contest and acquiring an agent, I collapsed.  Bedridden, unable to track a line of print to read or write, I was told by the experts that there was nothing that could be done, that this would be my life.

Intuition is an interesting thing.  Despite all the evidence confirming the experts’ assessment of my condition, I didn’t believe my fate was to ride out my life in bed.  Yes, I could and would make the necessary adjustments to accommodate my new status as an ill individual.   I accepted that I was ill.  But I didn’t accept that it was the end of the story.  I felt there was something more.  And so slowly, very slowly, this tractable Catholic girl defied the experts, and handhold by precarious handhold, I pulled myself up and out of the pit.  I had told myself that if I was able to work again, I wanted to work with people who had also been in that pit or who were in it, people like me who were bedraggled and raw and dirtied, but also avid for life.

I saw myself as a facilitator, not an expert.  I was a fellow traveler, offering to others what had always been a great source of strength and healing to me–poetry, stories, the written word, that intimate and potent communication of one soul to another. What I had not fully grasped was how blessed I would be by my new work.  Each participant brought her own unique mix of pain and despair, hope and joy, understanding and bafflement.  As we struggled together, witnessing and supporting each others’ emerging integration, we were enriched in subtle and untellable ways.  What I had only sensed, like a mole feeling her way underground, that this was the work I was meant to do, was confirmed when I left each class spent, joyful, and profoundly grateful.

Our book, A Communion of Sorts, is an anthology of work that has come out of the workshop.  Of course, the real work is what happened within and between the participants as they wrote and shared their writings.  The stories, poems and memoirs in the anthology point to that more ephemeral work.  In our book, you can witness the chaos and pain of cancer and its treatment, but you can also share in the solace of  memory, and in the often unexpected joy that surprises, even in the darkest hour.  I hope you will join in our Communion of Sorts.

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The Body’s Story April 15, 2011

I’ve written before about my involvement with the Karen refugees that my church is helping to settle here.  I backed into this responsibility reluctantly.  I really only got on board because my son, Adam, 14, just loves these kids.  He has a knack with kids and with people from other cultures, maybe because he is such a good communicator and such a warm person.  At any rate,  our family responsibilities include me taking the mother, whom I’ll call Sunny, to the health department every few months to get her Depo shot.  She is thirty and has four boys, 3-11.  She also had a baby girl who died, either in Burma or in the refugee camp in  Thailand–that part of the story isn’t clear.

Sunny’s English is getting better, but is still very minimal.  Working with her I realize how much of language is body language, facial expressions, and idioms.  I often feel that she has much more to say, but is frustrated.  It is frustrating for us both.  But recently, it has gotten better, which I think has to do with simply with the fact that we have spent more time together.  The reason being, Sunny seems to be having heart problems.

The second time we went for the Depo shot,  she complained again–in a soft voice that dropped the consonants–that she had pain in her chest, tiredness, heavy arms and legs, sweating.  I had to urge her on to tell the nurse, and luckily we got a nurse who listened.  We also got a phone translator who eased communications.  The nurse concluded that Sunny couldn’t have her shot until she had seen the GP and been given the OK.

The  doctor was way out in the country.  “Teacher,” Sunny said, her hand on her chest, “Sometime I feel heavy, full.  Sometimes I feel empty.”  There were tears in her eyes.  “My husband say, maybe I’m sad.”  Although Sunny is warm and loving, in her thirty years she has lost a mother at three, lost a father, lost a husband, buried a child, lost a homeland, and a  language.  I believe perhaps her father and or husband may have fought for the Karen  cause.  She tells me, “I never forget them.  I never forget.”  Her siblings are scattered around Burma, Thailand and one in St. Louis.

She tells me that she loves America, that she will never go back.  She tells me that in her village, a quiet village away from  the police, the children all played freely, the mothers doing their chores. One day the police came. “Rattatat, rattatat,” she goes, and then motions with her arms a sweeping motion.   “Mother’s look for babies,” she pantomimes, “go into trees, police get closer, babies cry.”  I stare at her, wondering if she was a child or a mother, wondering if maybe that little daughter didn’t die of natural causes.  “No, she shakes her head,”  I never go back.  “Rice, I carry, walk all day,”  and she pats the top of her head.  “No Piggly Wiggly!”  she makes a joke and we giggle and then she says it again, “Piggly Wiggly.”  I’ve taken her to Piggly Wiggly, and seen the amazed look on her face at all the food, which she buys in bulk to feed those five men of hers.  She shakes her head again, “No Burma. No chicken plant. No DVDs!”  Her second husband, twenty-five, works sometimes seven days a week at the chicken plant, a job you wouldn’t wish on your worst enemy, but for them  it is the key to the kingdom.

We get to the clinic, and there is an hour filling out forms, getting approved for the sliding fee scale.  At first they don’t want to treat her without a translator–they don’t have the phone translator service.  They are about to turn us away, but I convince them that we can communicate “enough.”  It is urgent–she is frightened as it is.  “All right, but you’ll have to see the nurse practitioner.”  Fine, I say.  We wait and wait.  Then we are called in.  The nurse who takes her vitals is lovely and gentle.  She has to wire her for an EKG, and I try to explain to Sunny what is going on.  Sunny is holding her breath in fear.  Her eyes are panicked.  The nurse says, “Tell her it won’t hurt.”  And I do, stroking her forehead.  And it doesn’t hurt, but it is invasive to have your body touched and taped and to be in a prone position, to be totally vulnerable.  It is for me.  It is for anyone, no matter how hard we rationalize it.

We  await and wait again to be seen.  Then a knock and a woman comes in the door.  She has a disapproving frown on her face and a very loud, brusque manner.  “Her EKG is abnormal.  She is not cleared for Depo.  She needs to see a cardiologist.  Any questions?”  We both just stare at her.  That’s it?  I take the records and thank her.  We silently leave.   We get in the car and I tell her she is going to have to see another doctor.  She nods, frowning.  I know that getting her to see a cardiologist will be an uphill battle.  I know that many doctors will just see a small brown asian woman who is a nuisance, a free-loader.  I wonder who will take the time to see or hear her, who will take the time to hear the story her body is telling.

Incantations October 30, 2010

In our workshop this week, we ended up talking a lot about the sounds of a piece, and how each writer has her own signature sound.  This was most apparent in rhythm.  We noted that one writer’s prose has a “stately” feel to it–understated, elegant, with gentle lifts and falls.  Another writer’s work surges forward in an urgent, emotional tide that builds to a climax, then dissipates, just as a wave does, and ends in a peaceful resolution.  Still another writer’s work could be distinguished by her rhythmic repetitions.  All her work has an incantatory quality, the kind of repetitions you find in witches’ spells, or in prayers.  That is how the work comes to her, she says, she doesn’t choose to write like that.  She just does.

Gregory Orr in his book, Poetry as Survival, writes that incantation is the third “ordering” power of the lyric, “capable of dealing with even more extreme disorderings, catastrophes so powerful that the self is unable to shape them towards the coherence of story or the complex concentration of symbol.  With incantation, the self discovers that it can be sustained, if all else fails, through rhythmic repetition alone.  In these instances, incantation is like a woven raft of sound on which the self floats above the floodwaters of chaos.”

The writer of incantations in our group has been slowly emerging out of such floodwaters.  Her history includes her mother’s early death, life in an orphanage, a raging, mentally ill stepmother, and a traumatic marriage, not to mention cancer and other health issues.  Her writings have always had this incantatory bent.  In addition, they often have been written in third person, which has created a distance between her own traumatic experiences and the emotions and words on paper.  It has only been in the last several months that she has started to use first person.

I think that for some of the other participants her incantatory pieces were perplexing.  So many repetitions!  Where was it all leading? I didn’t always  know.  Yet, I held fast to the principle that the “self”, the healthy ember at her center, was guiding her process.  And slowly but steadily, she has emerged like a butterfly from her chrysalis–an image she often writes about.  She has lost weight.  She reports more and happier interactions with her family.  Other members of the group remark on the positive changes they see.  She now talks about herself more, about her plans, and even her past.

As facilitators, we don’t always know what participants are working through or how their writing helps them move towards wholeness.  I only recently stumbled on the Gregory Orr quote as I was reading Poetry as Survival and  had a real “ah,hah!”  moment.  This is why I think it is so important to respect each person’s process, to give them the space and the tools to find their own rhythms, rather than to too narrowly define therapeutic goals for them.  Sometimes it is only in retrospect that we are able to understand how their writing sustained them.

 

 

 

After a Long Absence October 6, 2010

Dear Readers,

I hope you are still out there.  I guess I needed a long hiatus to swim, relax, just be.  But fall is finally here and I’m half-way through my fall writing class at the cancer center, and as always, I marvel at what a privilege it is to be witness to the richness of so many lives and so much courage.  Because it takes courage to face the empty page, to face, as one of the participants said yesterday, “my demons.”

That particular writer wrote a short, spine-tingling impressionistic piece about spousal abuse, using the image of being put into a rotten, rat and snake infested well, of calling and pleading for help, only to have her husband stand at the top of the well, laughing at her.  The visceral images and strong verbs: rotting, slithering, pleading, had the group by the neck.  We felt the terror, without the word terror needing to be used.  In the reflection she wrote about the act of writing that piece,  she said that even though it was hard to go back to that experience, once she got it on paper she felt better, more at peace.

I am reading another friend’s fascinating and lengthy memoir.  On our morning walks she has described how she had to write this tome, to put the chaos of her young experience into some kind of order.  She has for years gone home after work and written, often times feeling guilt at not being more accessible to her children.  Yet, she maintains, she had to write this to be a whole person, and she feels that she is a more authentic parent for it.

The poet Karl Shapiro has this to say about writing and pathology: “The prevalence of the tragic and the pathological in great works of literature has misled many theorists ino the belief that art is symptomatic of psychic disorder, whereas it is the opposite.  Art is a way of reaching for wholeness by way of the assimilation of the pathic into the joyousness of the unified being….”  (Foreward, Life on the Line: selections on words and healing).

Another writer of breathtaking courage I have the honor of having in our class, wrote a long piece about years of being stuck, of facing the feeling of not making a difference, and yet also of affirming that it has only been

through her suffering that she has become “real.”   She ends her lament about “time  (that) cannot be regained,” though, with the observation that it is “time to change how I see…..time to love.”

For those of us attending to these works, we borrow courage to look at our own demons, to know that we can face them and know that we too can survive.  For the writers sharing their work with us, those demons b

ecome less potent because the writers are no longer alone with them.  It is this sharing which I think brings the process of healing to another level.  We are meant not only to create art, but to share it, for our own good and the good of all.

So here we all are, imperfect, striving for wholeness, facing our demons, becoming, slowly, more “real.”  It is time.

The Kindness of Strangers, Part ll April 21, 2010

Dear Readers,

A young friend, Rebecca Corey, describes how her world was upended in an accident while she was studying in Tanzania this winter.  At her young age, she has clear insights into the issues of pain and suffering, as well as the interdependence of us all.  Please read her riveting post at :  http://networkedblogs.com/34bIb.

Best,

Sara

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?

Tell It Slant January 29, 2009

I’m about to start a new class, and as always, I have some trepidation. I often work with very ill people, and my intention is to create a safe, nurturing environment. But I am aware that the trauma of cancer creates disorder and destabilizes a sense of self, often triggering memories of earlier traumas. And this is not always a bad thing. In the past, I have seen participants, through the ordering process of language and the stability of a community of witnesses, express emotions that have been locked up inside them for years. For most of them, this has been cathartic. For a few of them, it has been frightening, and they have had to back off from writing from their own experiences. I encourage the use of the third person and fiction or essay writing for these people, respecting that too close an inquiry into their own history can be re-traumatizing to them.

I think that while the lyric poem or memoir can be the most direct route towards healing writing for some people, for others such direct routes can overwhelm them with emotions. Patients are in various stages of treatment, with various prognoses, so that their ability to withstand anything they feel is threatening is variable. They also come with differing personalities: one study shows that for high avoidance women, disclosure actually is more traumatizing , while for low avoidance women disclosure is cathartic.

It was a patient of mine who taught me all this. She had been doing so well, writing poetry and responding to the fairy tales that we worked with. But when we came to memoir, she balked. She couldn’t do it. So I suggested that she write what was “too hard” as a story, which she did. As long as it was in third person, with enough fictional elements, the story she needed to tell could be told. I think the important thing here is that she accessed the emotional truths of her past, without having to go into the particulars of her own history.Jayne Anne Phillips said much the same thing in a recent interview. When asked if her book Motherkind was based on her own life, here is what she answered:

The book seems to be the blow-by-blow account of a real life, and it was my hope that it would seem that way. In truth I didn’t really remember what happened during the time that I was caring for my mother. It’s like the drug they give you during surgery: the drug numbs you and also blocks short-term memory. It keeps you from remembering what happened and that you were scared or confused. We have a kind of psychological counterpart. The book is based on the idea of a woman with her first baby who loses someone who is part of her identity, a parent, slowly and painfully, and being caretaker to that person. And that did happen to me. But I blocked it out. I didn’t write the book until ten years after the experience.

I reentered the experience and made up those details. There were certain things, like the paper she uses to line the baby’s drawers, that were real and certain key moments that I did remember and put into the book. But most of it was reentered and reenvisioned and seen by the character Kate, who is just as much an invention as Lark or Termite. What is it that Wordsworth said, something like, “Poetry is the spontaneous overflow of powerful feelings . . . recollected in tranquility.” Writing is that. Living requires our full attention, as does writing. I, for one, can’t do both. An element of the writer is always held apart. You sit in a chair inside the space of the material, and you’re able to enter experience in a way that is not open to you otherwise.

The goal in healing writing is to access emotions and express them, build a coherent story, impose some order on disorder, and to create something that can be shared, so that the burden of suffering can be lifted. How this is done, through the practice of which genre, matters less than that it is done. As practitioners, I think it is important to be aware of the variable levels of comfort patients have about disclosure, and to offer as many different kinds of writing opportunities as possible.

“Any sorrow can be borne if it can be made into a story, or if a story can be told about it,” wrote Isak Dinesen. In the end, we are simply helping our participants find their story.

Read the full interview with Jayne Anne Phillips about her new book, Lark and Termite, on Narrative, https://narrativemagazine.com/issues/winter-2009/jayne-anne-phillips