Word Medicine

Writing and Healing: exploring the art of healing and the healing of art

Feeling at Home at Christmas December 9, 2016

bonehouse

I have passed out of mind like one who is dead

I have become like a broken vessel.

Psalm 31, verse 14

The challenges of living with a disability or chronic, invisible illness are heightened this time of year. For me, at least, and I suspect, for many. Because there are more calls on my limited energy, because I can’t entirely eradicate the specter of a Martha Stewart Christmas, because I want so desperately for it to be a magical season, I am more exhausted and frustrated than ever. Even for a “well woman,” Christmas is like pulling off a major Broadway production single-handedly. I now understand why my mother, when she cursed, said, “Christmas!” She had six children, an artist husband and not a lot of cash. She worked tirelessly to make it fun and beautiful and it was, but it cost her.

The dilemma of how to participate in life while also respecting one’s limitations is heightened  this time of year. This year, I’ve been thinking not only how to accomplish what needs to be accomplished, but also the kind of experience I want to have—as well as the kind of experience I want others to have. As Gertrude Mueller Nelson says in her profound book, To Dance with God, “This year we want our Christmas to be different. We want to be touched by the season—moved at a level that lies deep in us and is hungry and dark and groaning with primal need.”  The days grow shorter, and a primitive anxiety underlies our preparations, not only about the return of the sun, but also about whether our needs for belonging, contentment, and joy will be fulfilled. We want to feel really, truly, at home.

But when you are disabled or chronically ill, it is difficult to feel at home in your body, any time of the year. There is the daily management of energy, pain, protocols, pills. There is the sense of being left behind, of having “passed out of mind” from our communities. There is the internal management of our stance towards our illness, the battle between acceptance and resistance, the struggle between resentment and gratitude.

“The body itself is a dwelling place, as the Anglo-Saxons knew in naming it banhus (bone house)……” wrote Nancy Mairs, who was afflicted with MS. Many years ago, I picked up her book, Remembering the Bone House. The book is a memoir of how, despite depression and multiple sclerosis, she reclaimed her body and her life: “Through writing her body, woman may reclaim the deed to her dwelling.” She insisted on pushing against her limitations to participate fully in life, while never denying the impact of her illness. Yesterday, I read she died at the age of 73 last Saturday. The NYT obituary notes her aversion to such euphemisms as ‘differently abled.’ “I refuse to participate in the degeneration of the language to the extent that I deny that I have lost anything in the course of this calamitous disease….”  In her many essays about living with illness, she insisted on both facing the reality of her condition while also finding the good in her life.

“To view your life as blessed does not require you to deny your pain,” she wrote in the     introduction to Carnal Acts.” It simply demands a more complicated vision, one in which a  condition or event is not either good or bad but is, rather, both good and bad, not sequentially but simultaneously. In my experience, the more such ambivalences you can hold in your head, the better off you are, intellectually and emotionally.” *

In another essay, “A Necessary End,”  from A Troubled Guest: Life and Death Stories (2001), she discussed “the role of affliction in perfecting human experience….(it is) simply an element in the human condition, to be neither courted nor combated. To refuse to suffer is to refuse fully to live.” *

Perhaps this Christmas, I can let go of perfectionism, and only do what I can. Maybe this year, I can accept my illness as simply an element in the human condition. Maybe I can dwell more easily in my bonehouse, not berating myself for my shortcoming, but comforting myself.  And maybe, just maybe, I can then be present to whatever grace comes my way.

*New York Times, December 8, 2016

 

 

 

 

Facing It November 5, 2015

Filed under: aging parents,Chronic Illness,Grief,loss — saratbaker @ 9:58 pm
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Autumn LeavesIt is dark November–gray, wet, the yellow and red leaves slowly drifting to the ground. I have always liked the melancholy of fall, its rich colors and long nights, but this year the season is not just a metaphor, but also a lived experience. I am in the fall of my life, and what I seem to be shedding  are my illusions—that death is not real, that summer lasts forever. Friends are dying, and children have grown and left. Many of my friends have been thrown up on the rocks of middle-age unexpectedly single, or having been laid off of jobs they thought secure, or, like me, are dealing with chronic illness. There is a general zeitgeist of shock. How did this happen? How did it happen to me?

Life has not turned out as expected.

Why are we surprised? We’d heard rumors, but chose to disbelieve them, children of a golden age that we were. But now, our feints and slights of hand no longer work.

it comes home, the flea-ridden bitch of desolation,

a thin dog with its ribs exposed like a lesson

in mathematics, in subtraction; it comes home, to find its bowl

empty—then the numberless

things for which to be grateful dissolve

like the steam from a fire just doused with water

on a day of overcast grays, lined

by a cold slanting rain—

(from “Facing It,” by Eleanor Wilner)

 

Yet, being alive, we still want to live—although how to live is the question. Jason Shinder in his poem, “Middle Age,” addresses the dilemma:

 

Many of my friends are alone

and know too much to be happy

though they still want to dive

to the bottom of the green ocean

and bring back a gold coin

in their hand. A woman I know wakes

in the late evening and talks

to her late husband,

the windows blank photographs….

 

Do we know too much to be happy?

Perhaps not happy in the way of our protracted youth.  We can’t unknow what we know, what we’ve experienced. There are losses and they are real. I think we are supposed to feel them, not minimize them. They are a part of our story, but not our whole story.

A friend thrown over by her husband ten years for a girl his daughter’s age has found a new, surprising love.

A friend laid off in the recession has been rehired and is now a senior and respected teacher.

Children have children; our street is full of the next generation.

Fall is a season, but not the only season.

 

 

 

 

 

 

Inside the Circle February 5, 2014

Mary Gelpi in her January 27th post, Unwell, Unafraid (http://25pillsaday.wordpress.com/2014/01/27/unwell-unafraid/), on her blog, Fibromy-Awesome, writes a cogent description of what living with Chronic Fatigue/Fibromyalgia is like:  “A crash day followed by a crash day followed by a crash day. Somehow it’s worse when you’ve been feeling well.  All the years I’ve been sick, all the crash days and months, and I still can’t remember how bad it feels. It always pulls the rug out from under me–more so if I’ve had good health. Over and over, I forget. How incapacitating it is. How depressing it can get. When you’re moving and doing and performing tasks, you don’t think about these things. You don’t have to. You’re fitting in and alongside the rest of the functioning, productive world and that’s how you like it.”

 

This is one of the best descriptions of living with CFIDS/Fibro that I’ve read.  But I winced when I read it, because Mary is my daughter’s age, and I hate the thought of her having to deal with the compromises this illness brings at her age. Yet I admire her for her honesty and spunk.  At twice her age, I still haven’t been able to figure out how to manage the push/crash cycle of living within the boundaries of this illness.  As she says, it is worse when you’ve had a period of time feeling well.  My vet once said animals heal more quickly from things like strokes because they don’t know they’ve had a stroke—they just want to chase the ball.  In a sense, our animal bodies just want to get up and go when we are feeling well.  We may know intellectually that we have to be careful, but it is so delicious to feel that small burst of energy, that we just go with it.

 

I think for me another difficulty is how I perceive myself.  Reacting to the role of invalid, which makes one feel in-valid, I sometimes push myself to go and do in order to experience myself  having both social roles and mastery in some areas of my life.  This isn’t always bad—on the contrary, I’ve been surprised at how often things turn out well.  But I have created a life in which there is a lot of down time.  From the outside, it would seem, perhaps, that the circumference of my life is small, but there is often great richness within that small circle.

 

I think perhaps the biggest problem is not just figuring out how to participate in life as a person with chronic illness, but also what attitude to take towards our own difficulties.  Ironically, for me when I was at my sickest, it was when I was able to accept my illness and release my expectations, that I began to heal.  I read Kat Duff’s beautiful book, The Alchemy of Illness, which I can’t recommend highly enough.  I learned radical acceptance from her, and found in that dark night of the soul that there is something in us that is not dependent on our abilities or accomplishments, and is our truest nature.

 

Yet as we heal, we are also asked to revisit the question of how to live our lives, with what attitude. It seems we have to resolve the issue over and over again, that it is never settled once and for all.  I recently came across this in Helen Luke’s book, The Way of Women, in an essay on suffering:  “A question to be asked in moods of weakness or depression is, ‘Am I grading myself or am I recognizing the golden opportunity to suffer and so deny to some small degree the ego’s demand for prestige?” She writes that deadly guilt is often inverted pride, and we have to be on the lookout for false values, as in “I ought to be like God himself, free of all weaknesses.”  However, and this is such an important distinction for me, she doesn’t equate acceptance with resignation.  “Hope for release is another thing, both natural and right, as are also the efforts to come out of a mood or sickness…..real acceptance will lead us to seek appropriate help.”

 

I want to be a productive, functioning social being, just like my dog will always want to chase the ball.  Living with this illness is never knowing on any given day who I will be, what I can do.  I can’t pretend that I like crashing.  I just hope I can get better at acceptance.

happy-dog-chasing-a-ball

 

The White Rabbit July 31, 2013

timeArtists, and the old, and the sick and the unemployed, often experience time in a way that non-artists, the young, and the well-employed do not.

 

This is not all bad, and can be good.  Nora Gallagher in her recent book, Moonlight Sonata at the Mayo Clinic, speaks of her sense of time changing when she learns that she has a rare and serious illness.  She said she looked at the people on the other side of the “glass,”  the non-sick, the “bizzy,”  who had all been like her, and she realized they didn’t see her, didn’t want to see her. Part of her wants to go back to being “bizzy,” because before she was behind glass, she had a clear sense of herself, her importance, her power, and her place in the scheme of things.  She learns, slowly, to acclimate to her enforced slowness and disability, and gradually comes to readjust her inner sense of time.  Instead of planning and executing, she begins to live in the present.  She says,

 

“If you stayed in the present, if you paid attention thoroughly to the now, what it had in it might come to you.  And if you did not pay attention to the present, you might miss essential information that might be exactly what you need.”

 

I had an experience the other day of transitioning from one sense of time to the other.  At the drugstore/post office in our neighborhood, I bumped into BJ, an artist friend of my father’s.  I have always felt warmly to him—he is gregarious, funny, and kind. I was also surprised to see him out and about, because he has cancer, and has had it for some time.  Truth be told, I wasn’t sure he was still with us until I saw him.  He was jaundiced and seemed to have shrunk a bit, but his eyes were full of mischief.

 

I was just leaving and had in my hand a list of errands to do.  My engine was revved and I didn’t want to linger.  But linger I did, because once we got family news out of the way,  he started regaling me with stories of his adventures with my dad, who has been gone eighteen years.  I was happy to hear about Dad having a good time—I think BJ might have egged him on to some shenanigans.  Then somehow we got on to writing letters, and I told him how delighted I was to get an actual hand-written note from my friend, who refuses to be “social media-d.”

 

We were off and running.  I glanced down at my to-do list with the sinking feeling I wasn’t going to get anything done.  BJ pulled out his pen, a Mont Blanc and told me how he writes with it on Crane stationary.  Then we talked about paper, about the satisfaction of writing on a good thick rag paper, and I felt suddenly nostalgic for stationary and fountain pens.  He says he spends a lot of time writing letters to old friends, all of them decorated with sketches.  One elderly woman had her maid read all her letters because of macular degeneration, and when she died, the maid wrote him and asked him to write her—she missed his letters!  He used to write another friend and when he died he wrote his wife, who shared them with her sister and when the wife died he wrote her sister, who shared them all with her cronies in a home in Florida.

 

Having thoroughly relinquished my future plans for the day, I stood there is awe of him.  Here he was, sick, but keeping all these people entertained and engaged while the rest of the world rushed headlong—no time, no time, said the white rabbit—to what?  Really, what was so important?  What is important, a wise woman said to me a few days ago, is Presence.  And that was what he was sharing with me, and so many others.

 

Funnily enough, I got all my errands done.

 

 

 

 

 

 

 

Shame/Grace June 19, 2013

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Two nights ago, our children from Bethesda were visiting, and we had a party with a few friends.  I had just come back from visiting my sister, who was appalled that I didn’t have an iPhone, and didn’t text.  We were talking about the pros and cons of iPhones, when one of our guests, a man of bottomless curiosity, asked what the name Bethesda meant.  “It’s in the Bible,” he said, looking meaningfully at me as if that meant I should know the name.  “Well,”  I said,  “I have read that book any number of times, but I can’t remember everything.”  So he whipped out his iPhone and looked it up.

 

This is what he found on Wikipedia under Pool of Bethesda:  “The name of the pool is said to be derived from the Hebrew language and/or Aramaic languagebeth hesda (בית חסד/חסדא), meaning either house of mercy[3] or house of grace. In both Hebrew and Aramaic the word could also mean ‘shame, disgrace’. This dual meaning may have been thought appropriate since the location was seen as a place of disgrace due to the presence of invalids, and a place of grace, due to the granting of healing.”

 

I hadn’t really cared about the name, but this grabbed my attention.  It brought home to me how ancient the twinning of shame and illness is.  And even though we are modern people who believe that we no longer “blame the victim,” both for those who are sick and for  others around them, I think shame still plays a potent role in our experience of illness.

 

In my own experience of illness, I often find that along with the pain and fatigue comes the vinegary presence of a lingering guilt.  I may tell myself it isn’t my fault that I am sick, but I feel as if it is.  I wonder how much of that conditioning goes back for hundreds of generations, when sin and sickness were seen as one and the same?  Or is it the American belief that we can do anything if we try hard enough, which makes failing at wellness such a trial?  No one wants to be a burden to others, no one wants to fall behind.  When you are sick, though, it becomes hard to feel you are contributing or participating in the life around you.  To be an invalid is all too often to be in-valid.

 

As for how others respond to sickness, I think as a society we find chronic illness in particular, unacceptable.  We don’t have mechanisms to cope with it.  Fear probably plays into this, as it did for the leprosy patients at Carville, Louisiana who were taken from their homes and deprived of family and name, so that the remaining families would not be burned in their homes or run out of town.  Leprosy, in America even in the twentieth century, was seen as the fault of  ill.  Today, we use fighting metaphors for cancer, and yet what about the person who doesn’t “win” against cancer?  Is it because they didn’t fight hard enough?  We tend to turn our backs on people who aren’t winners. It is too painful for us.

 

Here is the first stanza of a poem I wrote recently.

 

 

What do the healthy

have to do with the ill?

Why would they want

to hear the news–

that the body is fragile

and we live at its will?

 

But what about grace? What about healing?  What about the image of healing waters?

 

John O’Donohue has written that when we are in our deepest suffering, that we should offer ourselves the oil of compassion, because we are experiencing the most essential aspect of being human.  It is suffering, he says, which allows us to truly connect to others. Yet, how hard this is to do!  How much easier to blame ourselves, and to struggle against our circumstances.  How hard to sit with what is, and look for the blessings there.

 

Kat Duff, in her wonderful book, The Alchemy of Illness, which I read at the worst stage of my illness, doesn’t see illness as the enemy to be struggled against, but as part of the human experience which offers opportunities for spiritual growth.  I have found that in my own life, while I wouldn’t wish this illness on anyone, it has brought me many gifts as well.  Healing, it seems, is not just for the body, but for the soul as well.  I have seen in the cancer patients that I’ve worked with great healing as they jettison a lot of unneeded baggage, and find their true voices.

 

I love the image of healing waters, of being suspended in them, of washing away all that burdens you, both physically and spiritually.  Water is receptive and holding, cleansing and renewing.  Here is a photo of the pool of Bethesda.

 

Our children left today to go back to Bethesda, which I hope will be a place of grace for them.  Richard left with his iPhone.  I’m taking my iPhoneless self for a swim.

 

 

 

 

 

 

 

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.   1296078708DvVAx0

 

Trapped in the Ice January 22, 2013

I once found an old book at the flea market called “Be Glad You’re Neurotic”.  Just the book for me!  Written in 1936,  it has chapter headings like “You Hate Yourself. No Wonder!” and “Are You Getting the Most out of Your Insomnia and Dreams?”  I did not make this up.  I prop this old book on my shelf, title out, reminding myself to be glad.

Having a chronic illness is a sure way to intensify a neurosis.  I’ve been sick since Christmas, sequestered in the house for the most part, too exhausted to go out.  All plans for the future are on hold.  I’m waiting for the verdict from the insurance company as to whether, this time, they will approve my treatment.  Instead of being able to let go, to read and relax and wait to get better, I go into overdrive, fending off the feeling of impending doom.  Will I be able to keep up my walking routine?  To sing in the choir?  To write steadily?  My mind goes into ever more solipsistic rounds, and I become more tense, contracted– unable to heal.  I feel guilty for having a lousy immune system.  I read a book review about primitive tribes and identify with the sick woman left to die because she is no longer of use. I see her struggling to keep up with the tribe, only to die alone on the road. That’s me, I think, falling farther and farther behind. My mind turns in ever smaller circles, like the little swan trapped in the ice in “The Ugly Duckling.”  I can not stay in the present, or take deep breaths.  My mind is turning too frantically, even as my body is inert.  Intellectually, I know better, but I’m in the grip of something I can’t think away.the-ugly-duckling-english-school

This impasse is only broken when a friend calls unexpectedly.  Like me, Mari has a chronic illness and has lived with all the difficulties of people not understanding, of insurance companies that are unresponsive, of dreams that have to be let go.  I find myself articulating to her half-understood frustrations and fears.  All the thoughts and feelings that had festered in the sealed room of my mind come pouring out.  Yet, once they are not mine alone, they seem less formidable.  I feel myself taking deeper breaths, feel my body loosen.  Mari shares practical advice, and more importantly, she exudes a confidence I no longer have that thing will turn out.  Holding onto her confidence for me, I can let go of the death grip I have on the outcome of my illness.  I feel supported, and humbled.  I do not have to be God.  I can relax.  I am reminded again that I am not alone, and I am invited to experience a feeling of being held and nurtured.

To heal, it seems, we need each other.  I can do my yoga practice at home, but doing it in a group seems to be a fuller experience.  I have had profound experiences of healing from healing touch, from massage, from the caring physical therapists who have put me back together, from chats with friends, from therapists, from writing groups, from the liturgy.  And each time, I feel humbled and grateful, called back to Reality as sacred, freed from my ego’s need to control.

Before Mari’s call, my story about my illness was one of loss and desperation.  Yet, as she offered her generous insights, I was able to reframe my story.  My feeling of helplessness diminished and my sense of agency grew, even as I was able to let go of controlling the outcome. My story of isolation became a story of hope.  In the book, Narrative Medicine: the Use of History and Story in the Healing Process, Lewis Mehl-Madrona, MD,  talks about the importance of community in helping someone re-author their story.  “We need the group to re-author our stories.  Rarely can re-authoring be done in isolation.”

We need others to help us heal, although not everyone can help you re-author your story, as Naomi Shihab Nye says in this poem:

You Have to Be Careful

You have to be careful telling things.
Some ears are tunnels.
Your words will go in and get lost in the dark.
Some ears are flat pans like the miners used
looking for gold.

What you say will be washed out with the stones.
You look for a long time till you find the right ears.
Till then, there are birds and lamps to be spoken to,
a patient cloth rubbing shine in circles,
and the slow, gradually growing possibility
that when you find such ears
they already know.

Thank you, Mari Braveheart-Dancer, for being those ears.

 

 
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