Sex, Death, Cooking (and Writing) December 6, 2009

My son came home from school sick the other day.  While eating pea soup at the kitchen table, he told me what fun his health teacher is and how funny it was to rifle through her big box of condoms, birth control pills, diaphragms.  I felt a little sick myself, about as green as the soup we were eating.  Adam is newly thirteen, and while coming into his own, still–so young.  I believe in sex ed in theory; in practice, I’m more ambivalent.  Couldn’t he just not know for a while, let his head be filled with BB guns and video games and The Godfather and Wimpy Kid books, which he still reads?  “I, uh, guess it’s kinda weird to, uh, learn about all that stuff when you’re not going to need it for a while…..” I trailed off limply.  “Of course not, Mom, you don’t have to say, that, sheesh,” he said, in disgust.  How uncool.  But I wondered if part of being home sick was being confronted head on with “all that stuff,” with having to find some way to assimilate it and find a stance towards it.  I remember my milder, less graphic, introduction when I asked my mother about the word ‘rape’ in sixth grade, and my shock and disgust when she described the terms of sex to me.  I wanted mainly to forget about it, to go back to not knowing.  I imagine that today’s kids aren’t that much different.  It’s a big mystery to lean into, grow into, and it means leaving innocence behind. Sex ed is life-long; the technical information is the least of it.

In the last month, I have attended two funerals and a woman I have worked with at the Cancer center for eight years is dying.  She is not my first participant to die–there have been three others.  It has been a privilege to work with each person, and to be with them even as they part from us.  As a young woman, I dreamed of all the trips I would take, the places I would visit, and death was not on that list.  Death was like a faint rumor, one easy to refute.  Now, it is clear I will probably not visit many of the places I’ve imagined, but I will take that final trip.  So, I’ve suddenly become interested in home funerals, in the particulars of hospice.  Like a child smuggling porn to try to figure out the adult world, I read about these things.  Still, like that child, nothing will prepare me for the real thing. It has to be lived.

The day Adam came home from school, he made a sponge cake. He is mastering a repertoire of cakes.  I lean towards stews, curries. The other night I made braised lamb shanks with red wine and basil with polenta.  I seasoned it with the salt of my tears. I imagine that, overwhelmed with our various mysteries, we both find comfort in cooking, in the way of taking raw and inedible ingredients and transforming them into something sustaining and pleasurable.  The cooking brings us into the moment, into our bodies, into the stream of life.  Cooking helps us digest the indigestible.  It is a gift we share, a pleasure beyond nourishment.  Writing is like this, too.  We take the raw ingredients of our lives, we cook them, offer our strange and particular melange in the hope of nourishing ourselves and others. Just as in the Jewish Seder, we taste our tears, the sweetness of our lives.

A New Heart November 28, 2009

Two weeks ago, a young woman who had been my daughter’s friend since early grade school, leapt to her death off her apartment building.  She was part of a  group of friends who  had stayed together through high school, experiencing an almost idyllic stability unusual in today’s world.  They were mostly children of academics, highly talented, bright, beautiful, funny.  They went to prestigious universities, garnering accolades, and all seemed well, until a year and a half ago when one of “the friends,” class president at UNC, was dragged from her apartment and brutally murdered one night.  Her death had become the defining moment of their lives, which are now divided between Before Eve and After Eve.

This new death has only reopened the not-yet-healed wound.  Whether the new death was a result of a manic high, of hidden despair or stress, we will never know.  All that is know is that is vibrant, loving, funny and gorgeous young woman who had been a part of all our lives, is no longer with us. Why, the young women keep asking each other and us, their mothers, why?

We are driving to the cemetery.  I am sitting in the front with one of the other mothers, and two of the daughters in the back seat, although not my daughter, who is in another car full of her friends.  We are trying to untangle the events that led up to the unimaginable, as if by parsing it out, we could lessen the hurt.  My friend begins to weep, recalling her own mother’s death when she was twelve.  Every new, tragic death, it seems, resurrects the old ones, makes them fresh, raw.  Then one of the girls brings up how she had been very depressed and how a river near her house had saved her.  “No joke,” she said, “I know that sounds weird but I swear that the river saved me.  I would just go and sit by it all the time and finally the depression just went away.”  The other young woman recounts how depressed she was in high school, and how one day she threw all her belongings in the hall and slept with nothing in her room, like a self-flagellating monk.  I told them the story of being their age, twenty-three, and flying home, angry and depressed. A middle-aged man next to me offered some kind words to me, and I rebuffed him coldly.  How could he offer such easy kindness?  He was obviously unenlightened, some soft bourgeoisie.  I was an intellectual girl, all right, I could deconstruct a text and situation with the best of them, little noticing that once you shred everything down to its finest units, you are left with very little.  I had an uneducated heart.

What can we offer our children in their moment of great need?  We can’t get to the bottom of these deaths–tragedies and mysteries beyond our comprehension, suffering almost too hard to physically bear.  Brought down myself by illness in the face of this latest loss, I happened to pick up the wonderful book by Kat Duff, The Alchemy of Illness.  I turned randomly to a page, and this is what I read:  “The Nahuatl peoples believed that we are born with a physical heart, but have to create a deified heart by finding a firm and enduring center within ourselves from which to lead our lives, so that our hearts will shine through our faces, and our features will become reliable reflections of ourselves.Otherwise, they explained, we wander aimlessly through our lives….”  She goes on to suggest that the sufferings we endure, physically and emotionally, by being consciously borne, can open us up and soften us. By offering our suffering as a sacrifice, we can “heal by resuscitating our hearts.”  “In our hearts, which many native peoples consider to be the seat of true intelligence, we discover the simple capacity to feel our losses, sorrow, and shame, and have compassion.”

We educate our children’s minds, but we often abandon the education of their hearts and souls.  There is nothing we can do to bring these wonderful young women back to us, and we can never answer the question “why?”  But we can offer the suggestion that their deaths are not in vain, if from our deep sorrow, we can grow new hearts. In the car that day, winding through the cemetery, we made a start.

Ruined October 5, 2009

The small yellow vase was a marvel. I spied it years ago at a local arts fair. It could fit into the palm of your hand, its body a fat perfect sphere, its neck slender, impossibly delicate, giving way to disk-like porcelain collar around an opening for just one tiny stem and bud. The glaze over the body was a delicious pale yellow mottled with white–buttery, happy, the wings of a butterfly.

Over the years, the vase has brought me joy in its tiny self-contained perfection. I treasure it. It, I suppose, became something more for me than an object d’art. Through all the years of illness, it stood in my bedroom as a reminder of something–of beauty, fragility, completeness. It was graceful the way a dancer’s line is –effervescent, hardly there, hardly anything, except sometimes, everything.

The other night, I happened to glance at it and see that something was wrong. To my horror ,the collar now had two jagged triangular gaps. By and large, I”m not too attached to things. Pottery and glasses get broken all the time at our house and I usually take them in stride. All the porcelain lamps have been glued and reglued. But somehow, the damage to the little pot got to me. I felt my heart race and I snatched it up and stomped into the TV room where my innocent husband was sprawled in front of Jay Leno. “Did you know about this!?” I hissed. He looked sheepish. He’d been fixing the blind in the bedroom and knocked it off the shelf. “it had been damaged before,” he said, “I couldn’t find the pieces this time.” I was filled with a seething rage; I felt like throwing the vase on the hearth tiles, smashing it into little pieces. I hated it! What good was it if it was broken? The whole beauty of it had been its perfection. It was ruined. Ruined! I couldn’t be put back together and it would never be the same.

I wept myself to sleep in my hospital bed.

The next morning, walking in the neighborhood, my neighbor Patty stopped and asked how I was. I found myself telling her it that it was a long, slow, hard recovery, and then I heard myself say, “I’ll never be the same; my spine will never be straight.” And I felt my eyes fill, my heart pound. Usually, I emphasize the positive–I’m alive, I’m not paralyzed. I’m not especially close to Patty, but for some reason, it came out. She said, “You know, you have to mourn it, there’s no way around it. You’ll go through all those stages of grief. You can’t hurry it up.”

Her words were a gift.

Well, I’m pretty good at fooling myself, but I guess I’ve worn out denial. I’ve tried bargaining–if I do my exercises, work, be exemplary, if I endure the pain, maybe I can preserve the illusion that I’ll be good as new someday, maybe I won’t have to mourn my losses: my strong back that I always relied on, my waistline, just the wonder of a body that despite CFIDS, despite asthma, would ride a bike, swim, garden,do yoga. All without too much consideration. I will heal, but I’ll never be the same, and I will probably never be pain free.

Geovanna, the woman who helps me with the house and with whom over the years, I’ve shared all the woes and joys of a woman’s heart in a motley but thoroughly lucid Spanglish, came up to me a few days ago holding the vase and two small pieces of white porcelain. “I know you love this,” she said, “maybe Mr. Todd can fix it for you.” She handed them to me, giving me a quick hug. Mr. Todd fixed it and put it on the shelf. You have to look for the cracks. I am very glad I didn’t smash it into pieces.

A Simple Bowl September 17, 2009

I’ve been trying to use what little energy I have recently to send out query letters to agents. It is a strange process, so divorced from the impetus and act of creating a piece of fiction. When writing fiction or poetry, I feel centered, for the most part, and alive and excited. I don’t feel any of those things when querying agents. Instead, I feel weighed down by the effort of selling myself, by a feeling that the whole process is somehow inauthentic, by the overwhelming odds against any writer, but especially one who has taken a long hiatus due to illness.

Yesterday, sitting in my physical therapist’s waiting room, I was fuming to my husband about a book I’d just finished reading that I found mediocre, despite sensational reviews. A thin, frail man walked in who looked vaguely familiar. It took me a moment, but then I recognized M.S., a wonderful potter who has been battling leukemia for many years now. Just that morning, I had put my strawberries in his lovely white and black bowl. The bowl has an asian flavor, with a pediment and steep conical sides. It has always given me a lot of pleasure, both the shape and the glaze: it is a perfect small bowl. It is a bowl I can imagine a Buddhist monk using.

M.S. looked up when my husband called his name. He came over and we exchanged greetings–my ever present body brace always providing a subject for conversation. Close up, I could see the sores on his skin, his sparse hair, his face puffy, no doubt from steroids. No matter how many years I’ve worked with cancer patients, the ravishing of the disease and the treatments is always a fresh shock. We asked after his wife, a painter, and he caught us up with her. There was a pause, and then he said, “and I guess I’m just a medical patient now.”

Such a simple statement, but such a painful one. For anyone, the loss of work is painful. For an artist, especially as finally tuned as M.S., it must be a cruel loss. One thinks of Beethoven descending into deafness, stubbornly composing in that silence, of Picasso, the old man, confronting the canvas until his last day. “Who can tell the dancer from the dance?” Making art transforms the maker, just as it transforms the material. It can be a solace, one I wished he still had.

I felt my eyes fill and I didn’t want him to see. Thankfully, I was called for my therapy session. Lying on the table, I felt keenly my own brokenness as well his, and I was washed over with the brevity of life. What I want, I thought, is to make stories as beautiful and functional as his bowls, stories to hold whatever fruit or emptiness the reader’s life needs contained. That is what I’d like to put in my query letter.

Movement is Life August 31, 2009

From my journal, a day before the accident, written while I sat at the beach:  “A tern lifts and lowers in the stiff off-shore breeze, popping up like a Jack-in-the-box.  A movement in the sand catches my eye, something shiny, and I see a sand crab slip into its hole.  Movement is life.”

Last week,  a friend brought lunch.  I’m still in my brace and can’t drive, so company was welcome.  She came in wearing very pretty sandals.  I asked her where she’d found them.  “The Potter’s House,” she said. The Potter’s House is our local thrift store.  “Let’s go,” I said, and so we did.  Even though my back hurt and I was tired, it was fun to get out, to poke around for unsuspected treasures.  There was a group of young college men looking for jackets, two middle-aged white women perusing piles of baskets, and an older black woman slowly and methodically working her way through a rack of dresses.  I sat on a plaid couch, waiting for my friend, eavesdropping on the students as they discussed the merits of various jackets. I felt part of the flow of life again.  Like a crab, I’d crept out of my hole, propelled not by necessity, but by simple shoe lust.

When my old dog had a stroke several years back,  she was on her feet in no time, eager to go on her customary walk, despite her off-kilter gait and cocked head.  My vet said dogs heal from strokes faster than people because they don’t realize they’ve had a stroke, they just want to go out and chase balls.

A friend reports that another friend spent the summer in Spain at a tango festival.  This woman is an avid dancer.  A year and a half ago, her most lovely and gifted daughter was brutally murdered.  She might have stayed in her hole, and no one would’ve blamed her.  I imagine her dancing the tango, that most sensual and life-affirming dance, imagine strains of violin and accordion music on a hot Spanish night.  And I imagine her daughter in the candle-lit crowd,  applauding her mother, as I do now, applauding her insistence on living passionately, even in the midst of unspeakable pain.

These two friends are thinking of going to Argentina to dance next year.  I’m thinking of going with them.

Chaos Narrative/Gone to Seed August 20, 2009

Arthur Frank, in his wonderful book, The Wounded Storyteller, describes three “narratives” that ill people use to navigate their illnesses. There is the restitution narrative, which is the story that one will be restored to the previous state of health; there is the chaos narrative, which can not be written, only lived, as it is so traumatic can not be formulated into words; and finally,there is the quest narrative, which seeks to find meaning in the experience of illness.

Frank says that people cannot and should not be rushed out of their chaos narrative. As health care workers, we often seek to formulate people’s experience for them, because we are uncomfortable with the formlessness of chaos, the incoherency of it. I’m thinking of this because I’m only now beginning to emerge from a small taste of dissolution, from my own chaos narrative.

I was recovering pretty well from my fractured thoracic spine, walking, beginning to take showers and getting into the pool for 20 minutes of hydrotherapy. I was still in pain and exhausted, but feeling as if I was getting a grip on the situation. Then my son brought home a summer cold, which quickly passed to me and morphed into a severe bronchitis. I was shaken from fits of coughing, each spasm seemed to threaten break a rib or shatter my already broken spine. The bone pain returned. I had been slated to start on a strong antibiotic therapy to fight my C.pneumonia Igg titers, so I went ahead and took that. Then the trouble really started. The vertigo was so bad I couldn’t even move my head lying down without the room spinning; I was queasy and my skin itched. All the side effects of a hangover without the fun of a party. Still, I thought these would pass and stuck with it for three days out of fear of having pneumonia again (I had walking pneumonia for four months this spring). Finally, I got to my doctor and he changed the antibiotic and upped my breathing treatments.

For almost two weeks I couldn’t think. I couldn’t find a metaphor, naw, not me. There was no pulling me out of the experience, no distancing. I lay in bed watching the pecans ripening on the tree, watching the graceful dance of the trees and the distant white clouds in the blue Renaissance sky. The lace curtains billowed, the breeze was mercifully cool, and there was no I, only the sensations of distress or the abatement of distress. Out on the edges of consciousness I knew there were things I needed to attend to, but I had to let them go, let them drift off and trust that when I finally came ashore there would be a coherent self to deal with them.

When I was well enough, I dragged my poor ruin of a body out to the back porch. I sat and looked at my garden–the cone flowers and bee balm prematurely dead from drought and neglect. Was everything in and around me blighted? Just then, there was a flash of brilliant yellow in herb garden. I squinted. There it was, a goldfinch alighted on the dried bee balm. I had tried for years to attract goldfinches, and yet, without even trying, here it was. I held my breath. It was as if God had sent down this most beautiful emissary to tell me–”I am bigger than your dissolution,than your pain.” And that was the beginning. The beginning of the end of my chaos narrative. Yes, I have gone to seed. But look, there are worse things.

I sent Todd out to buy what he considered a ridiculously expensive goldfinch feeder. The goldfinch pair stick around. I’m feeling better.

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?

The Kindness of Strangers July 12, 2009

Everything can change in an instant.  On July 4th, the last day of our beach vacation in Duck, N.C., I went for a late afternoon swim.  All week the water had been calm, and I had been swimming, often by myself early in the morning.  I love the ocean, and often feel more at home in water than on land.  I noticed that evening that there were more surfboarders out, that the ocean was choppier, but these were tangential thoughts–my real thoughts were on the Elizabeth Bowen novel Iwas reading.  For me it was the thirties in London, tulips arranged in a glass vase and Lady Charlotte snooping into everyone’s business.  I waded into the water and had my swim, tiring quickly.  As I tried to get out, the waves that had earlier shoved us out gently crashed around me, and I couldn’t get my footing.  So I decided to body surf out.

I didn’t catch the wave just right, and it felt as if a giant hand had slammed me head first onto the shore.  My body followed, and as I tumbled forward I heard a distinct snap and felt my neck and back give way.  I was spun head over heels several times, then landed, half reclining on the beach.  The surf surged around me and I was overjoyed as I felt and moved my arms and legs, but as I tried to push myself off the sand to stand, I was struck by the most  intense pain of my life.  It felt as if there was a stone on my ribcage.  Terrorized, unable to move, I waved to the people on the shore, but no one seemed to see me.  I tried to cry out “help” but I could barely breathe.  I realized that if no one saw me, the sea would drag me back in, and I would be helpless to stay afloat.

Finally, a woman about my age caught my eye.  At first she started to wave back, as if I might be someone she knew, but then she must have seen the look of panic on my face.  She and her mother came running into the water, and she held me up as I screamed in pain.  She shouted for the lifeguard and she and her mother held onto me until the lifeguard and firefighters could stabilize me on a board.  The whole time I looked into her eyes, whimpering, ‘don’t leave me.’  It was exactly like my experience of childbirth, where the one nurse, a stranger until that moment, becomes the most important person in your life.  “Don’t leave me,” I cried through the pain, gripping onto her arms, and she said, soothingly, “I won’t leave you.”  And she didn’t; when they put me in the ambulance she was there, crying.

In the ambulance, I couldn’t stop crying.  I had never felt so alone, so out-of-control, so vulnerable.  I said to the EMT, “I’m afraid I’ll be paralyzed.”  I had trouble breathing, and every wave of panic made it worse.  The EMT, her name was Amanda, kept reassuring me that my grip was good, my vitals good, the prognosis good.  She also said she knew how painful it was; she was recovering from back surgery. She did not make me feel ashamed for my tears, for my moans of pain. I hung on her every word; she was my lifeline, my oxygen.  She held my hand and looked into my eyes.  When I was finally delivered to the emergency room, she came to say good bye and wish me luck and there were tears in her eyes.

I was taken by ambulance to a trauma center in Norfolk, Va.  I woke up alone in the emergency room.  I felt the panic rise and I couldn’t breathe.  I heard someone emptying trash and called out, but no one answered.  It sounded like a party was going on somewhere.  I cried out again, and passed out. When I woke up, there was a young woman.  “We are waiting to put you in a room,” she said.  I said, “But you left me alone.”  “We’ll get you there soon,” she said, and took my hand.

I was only in the hospital essentially a little over four days.  The nurses were on two day twelve hour shifts.  The nurse I will never forget was Emily.  A black woman in her fifties, she had an incandescent smile.  She made me feel cared for; she went beyond doling out pills.  She straightened my bed, listened to my lungs, and wasn’t afraid to lay a hand on my head, look me in the eyes.  When she heard they were going to discharge me, she was furious.  “You are in no shape to be discharged!” she said.  When she was leaving the last night of her shift, my brother Jon, who had driven from Raleigh, and who is always so kind, made a point of telling her how much we appreciated her care.  I added that it was hard, I knew, to be a nurse these days.  Her eyes filled, “It is hard to nurse the way I want to,” she said.

I will write in another blog about my experience as a patient, about the best and worst of modern medicine as I experienced it this past week.  But what I want to convey is that all of these people went beyond what many would consider their responsibilities to not only come to my aid physically, but to meet me in my terror and vulnerability, to not shame me for it, and to companion me through the darkness.  They entered into what Martin Buber called a relationship of “I and Thou.”  Arthur Frank in The Wounded Storyteller, says “Living for others is not an act of exemplary goodness.  Persons live for others because their own lives as humans require living that way.  The self is understood as coming to be human in relation to others, and the self can only continue to be human by living for the Other.”

The woman in the black blouse walking on a beach in Duck,  Amanda, Emily and countless others I encountered this week lived this truth and because of them, I didn’t drown, or descend into panic.  Because of them I was given the courage I needed to take the next step.

Our Storied World June 17, 2009

Here is a wonderful and true story: A friend of mine, a visual artist, until recently worked at a charitable organization that was slowly dying due to the recession. My friend, let us call her Z., worked mostly with the Hispanic p0pulation, trying to help them navigate various social agencies, food banks, legal aid agencies. I’d often dropped by to visit her, and find her with a child on her lap, speaking to the mother in fluent Spanish, or helping a troubled teenage boy calm down by doing collages with him. Even as the agency’s funds dried up, my friend, who has no margin for error in her own slim finances, would often open her own wallet and give what little she had. She didn’t do it every time, but if she felt the person’s plight was truly awful, she explained that she did it to live with herself.

One day a young man wandered in. He’d had to drop out of school, he had no money, hadn’t eaten in a while, and couldn’t find a job, although he’d been looking. My friend gave what information she could, but she noticed a certain dullness in his eyes and recognized it for what it was–the dying of hope. She opened her wallet and gave him a twenty and he thanked her and left.

Not long afterwards, Z. was laid off from the organization. She went into a funk, hibernated and licked her wounds, then turned to the thing she knew would help her find her way. She got her paintings down from the attic, began to look at them again, began doing some new work. In the spaciousness of the her new days, she found herself making art. She’d applied for jobs, but none came through. Still, it wasn’t as if she had nothing….she began to slowly envision her self as a working artist. It was as if the Universe had conspired to get her back to her true work.

Still, one has to eat. She was downtown one afternoon and poked her head into a little Italian restaurant. It was close to the end of lunch service, and she was the only one in the restaurant. A young man came over to take her order. They looked at each other and she recognized the young man she’d given a twenty to. He said, “I know you,” and she smiled and acknowledged it, not wanting to embarrass him by reminding him of how they had met. Far from it, the boy was eager to chat. The day she had given him the twenty, he had been at a low ebb. But he had gotten something to eat, then applied for this job at the restaurant and gotten it. She was delighted to know how the story had turned out; so many of the people she had helped simply disappeared.

She visits the young man often now, and the irony of their switched places isn’t lost on her. She’s become friends with the owner, who wants her to hang her paintings in the restaurant. “Was it random chance or something else that led me there?” she asks. At any rate, it was a fortunate and happy accident.

“The moment I heard my first story/I started looking for you…” Rumi writes. We are our stories. We not only understand our world through story, but we make our worlds through stories. We tell, we receive, we stand in amazement and awe at the gift of story. Our hearts wither for lack of good stories.

Dear reader, I wish you a storied world.

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.