Prisoners April 25, 2013

My long time yard man is in jail again.  He had left given me a paper a few days ago with a list of treatment facilities and told me that his probation officer told him if he wasn’t signed up by the following Tuesday, it was back in the clinker for him.  The list made little sense, but I called around and discovered that a) there were no Level II treatment facilities in town and b) they cost more than he made a month, especially since he would not be able to work.  I tried to get back to his overworked probation officer, but it when I did, it didn’t change anything.  He was going back to jail.

One of my dearest friend’s husband threw her off after a twenty-five year marriage.  My friend is a gentle, bright woman, who trained in Europe to become an architect, and then got a landscape architecture degree while raising her child here.  Her husband didn’t want her to work, wouldn’t let her get a green card.  So here she is in her fifties, with a punitive ex-husband who is living with a woman her daughter’s age, and no career or means of support but a lousy low level tech job.  She is facing impoverishment.  No matter how she looks at it, there is no way out, only frustration and anger.  She feels the prison cell walls for give, for a possible way out, but can’t find one.

I’ve been sequestered indoors for a month due to allergies that add to my body’s already overburdened immune system.  Never healthy, the added feelings of illness and inability to get outside has been increasingly demoralizing.  My daily walks with my dog and  sitting in the garden have been curtailed.  These small things make my daily routine pleasant, and take me out of the kind of neurotic preoccupation with my own health ill people are prone to.  My sense of isolation increases, and I feel slapped up against my body’s limitations again.  It is hard to see a way out.  I forget that this illness waxes and wanes, and all I see are the walls coming closer.

The poet Ellen Bass, in her poem, “In Praise of Four Letter Words,” writes: In lockdown within our own skins/we’re banging on the bars with tin spoons/screaming in the only language strong/enough to convey the shock/of our painful need…..

I’m reading Bonhoeffer, the biography by Erix Metaxes.  ( Dietrich Bonhoeffer was the German theologian involved in the conspiracy to assassinate Hitler). I’m currently at the end, when Bonhoeffer is in the Gestapo prison in Berlin.  There is a very moving description by another inmate of how, despite the fact that they were in solitary cells, the doors of the cells remained open in the morning and evening as the prisoners returned from eating and washing.  “During that time, we were eagerly talking to one another through the slits in the hinges of the doors separating us….we seized every opportunity to inform each other of our thoughts and experiences.  Only somebody who has been in strict solitary confinement is able to understand what this chance of talking to somebody meant to us during those long months….”  He goes on to report how Bonhoeffer “always cheered and comforted me…” and how he was always full of hope.”  (pgs. 498 &499).

I find this passage very moving.  I think, to some greater and lesser degrees, we are all in the solitary confinements of our own experiences, circumstances, thoughts and feelings. We can not always change the facts of our circumstances, but we can “inform each other of our thoughts and experiences….” and in this way find relief in the telling. If we can learn to be the ear the other needs, we my also give comfort.  There is always the possibility in this kind of exchange, of hope.

I am hoping my yard man is released soon, and that my friend finds a job suitable to her abilities, and that the insurance company will finally approve the treatment my doctor has been trying to get me for a year.  But in the meantime, I’m keeping the door of my cell open.   

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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.

Climbing Above June 16, 2010

I recently received a call from one of the social workers at our cancer center.  She was concerned about a woman in my group who had scored high for depression on our intake forms.  She wondered why I hadn’t referred her for individual counseling.  “She didn’t present as depressed,” I explained.  As a matter of fact, she had been one that I least worried about.  She was engaged, lively, full of humor and right on the mark with new skills and ideas.  I knew the facts of her life; they were dire, and those facts would stand, to everyone’s grief.  But for two hours a week, she was not mired in those facts.  She was free to exercise the other parts of herself that were neither patient nor caregiver.  She was free to think, imagine, communicate, laugh. In the past, I have referred participants to our counselors, or have gently suggested that they might find what they need there instead of in the writing group.  But in this case I saw no reason.  It seemed she was doing what she needed to do to help herself.

Ted Deppe, a splendid poet and psychiatric nurse, often writes about his pediatric charges.  In a poem called “The Japanese Deer,” he describes taking the children on an outing to the Lost Village. On a walk in the countryside, he truly gets lost, then comes upon an “apparition of apple blossoms.” The children break ranks and run towards the trees, climbing the upper branches and adorning themselves with apple blossoms.  Here is a stanza from that poem:

What’s true in this story is that Marisol,

raped repeatedly by her mother’s boyfriend,

and Luis, who watched from the hall as his stepfather

stabbed his mother to death–nothing

can change those facts–climbed for a short time

above the brambled understory, outside history,

discovered a fragrant scent on their hands,

shredded more petals, rubbed the smell deep in their skin.

In the poem, the children are entranced by the apple blossoms and the idea of tiny Japanese deer.  Although they didn’t actually see the deer, the idea of them is so real, some of the children were sure they’d “seen the whole herd.”  I love this poem.  It does not deny the horror of the children’s lives, but it also does not deny them their moment of transcendence.  I love the visual pun of the brambled understory and climbing up above the facts of their histories. Our histories are a part of us, but they do not define us.  I love also how this moment is sensual, how instinctual the children are in rubbing “the fragrant smell into their skins.”  One thinks of all the Biblical stories of anointing by fragrant oil in the presence of the sacred.  This moment was sacred, and Deppe suggests this beautifully.

The social worker and I grieved together over my writer’s  plight.  Yet I have had the privilege of listening to her wonderful stories, full of beauty and drama and pathos and humor.  I think of the last line of Deppe’s poem “….impossible, all of it,/but this is the way he remembers it; this is the truth.”

“The Japanese Deer,” from Cape Clear  New and Selected Poems, by Theodore Deppe, Salmonpoetry,  www.salmonpoetry.com

 

 

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.