Confusing Times September 7, 2017

“By yielding, we may obtain victory.” –Ovid

Do you know the term “at sixes and sevens?” That sort of off-center feeling of not quite knowing what to do next, a subtle disorientation? That is how I’ve been feeling lately. My mother is experiencing memory loss, and has been for some time. This was brought home to me in a dramatic way recently, when I saw how confused she was in a large store. I realized that we had turned a corner–we are in deeper waters than I had let myself realize. Things are changing quickly. My role is changing, and this woman who has always been so fiercely independent, is suddenly reliant on me in a way I never expected. It is bittersweet—sweet because she now allows me a kind of intimacy we’ve not had before, and bitter because I don’t want to lose her. As a friend of mine says, “life is a series of not-totally unexpected blows.”  Nothing about this is unexpected, but facing into the lived reality feels vertiginous.

Not long after our trip, I went to Earth Fare. I did a few errands and sat down to gather myself together and write a to-do list. It was pleasant to be in the neighborhood store, and I felt less alone with my own thoughts. I realized that I was holding my breath. So I tried to just breathe. There was nothing I could do about my sense of confusion, so I tried to relax into it. (The operative word here is tried.)

 As I flipped through my tiny note book, I came across this line in a poem by Pamela Wilson: “Not knowing, even confusion, when met, reveals itself as wisdom in its potentiality, pure intelligence.” The poem was from a workshop by Johanna Royo on Heart-Centered Living during a one-day conference, Healing the World through Art, at the Georgia Museum of Art. Johanna described an experience of deep depression and loneliness in her life which led her to her practice of Heart-Centered Living. She said that at the very worst moment, she sat on the floor of her kitchen and it seemed that a huge black hole opened up. And then, instead of resisting it, she fell into it. And came out laughing. She realized that was the resistance and fear that were keeping her stuck.

Sitting there in Earth Fare, I saw an old friend I hadn’t seen in a while.  We chatted, talking about family, when she asked about my mother. She had known and loved my parents for a long time. Not only that, her husband had dementia for twenty years, a fact I had forgotten.  As I described my grief and fears, she nodded with understanding. It was a relief to talk about it with someone who didn’t shy away from the reality I was facing. She gave me good practical advice, and she also described the unexpected gifts that came from his illness. She said that over the course of his illness, he became much more affectionate. They shared an intimacy that in some ways was because of the illness. She described their last anniversary, which was celebrated in the hospital. Because the illness had made him blind, she had to describe the pureed food she was feeding him. They laughed about how when they married they never could have imagined celebrating their anniversary in such a way. She also described how, at the very end, when they thought nothing could reach him, a nurse singing a German folk song caused him to “wake up” and sing along with her in German. It was an unexpected gift of having him back, however briefly.

In a way I could never have orchestrated, I talked with the very person I needed to talk with that day. I left the store feeling lighter, clearer, and less afraid.

Note to readers: I have not posted since January. It was in January that my life felt upended—we had just inaugurated a man I feel is unfit to be president, my mother’s memory issues intensified, and I was under tremendous pressure to sell my book—which meant acquiring a whole new set of skills. My body protested. I am feeling on a more even keel now, and plan to post more frequently.

 

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Christmas Preparations: What Are We Preparing For? December 7, 2015

I’m sitting in a waiting room listening to a woman telling another woman all about her Christmas preparations. She has “only” gotten her kitchen and bathroom decorated; she is going to be working up till December 24. She has fifteen people coming, kids and grandkids; she is going to have a honey-baked ham. She could buy them all gift cards, she says, but that seems too easy. So she is shopping for them. The other woman will be making a separate vegetarian meal for her son, and she will get him a gift card. “He never likes anything I get him, so I might as well.”

I like to tease that at Christmas, women do all the work, and a man (Santa) gets all the credit. Why do we do it? I suppose we do it for all sorts of reasons–tradition, habit, others’ expectations. But I think we also do it with the hope of creating a protected space and time where we can come together with our loved ones and celebrate the gifts of life and of each other. We all long for those magic moments.

Every year, despite the failures of years past, we hope anew. Christmas, with its symbolism of abundance, brings us perilously close to our naked need for affirmation, connection, approval. We all have need and we all have abundance, and the holidays make us aware of both. The wish for the perfect gift, the one that shows that we are understood and cherished, lurks even in the most jaded of us. The fear of being let down is equally present. The wish to give, to make sure we have satisfied a love one, exists with the dread that we can’t. Managing our own and others’ expectations can make us stressed, exhausted and unhappy–the opposite of what we really desire.

While getting rid of all the material aspects of Christmas might seem like the solution to this dilemma, I think more to the point is recognizing the difference between matter and spirit. As Gertrude Mueller Nelson writes in her book, To Dance with God, “we can prepare and put forth the form to catch something of the Spirit, but we cannot supply the Spirit.” There is nothing wrong with abundance, with beauty and tradition. Where we get into trouble is in confusing the symbol with reality. 

No gift will ever create love–it can only point to a love that is already there. We cannot make anyone happy, we can only invite their happiness. Our holiday celebrations will never be perfect. If we are lucky, they will be messy, with imperfect giving and receiving, but also with genuine moments of connection. And maybe a honey-baked ham.

Longing for the Light December 9, 2011

In the choir room, we practice our Christmas hymns.  “Let thy bright beams disperse the gloom of sin, Our nature all shall feel eternal day, In fellowship with thee, transforming day to souls erewhile unclean…”  The longing in the hymns for the coming of Emmanuel, for the coming of light into our darkness, never fails to move me.  More now, than in the simple faith of my childhood.  Because now I know how dark our darkness can be.

In the paper yesterday, the headlines included the death of a seven-year old Hispanic child, who had been raped, beaten and stabbed to death as she returned to her apartment from the apartment playground.  The younger two children were taken from the traumatized mother  because she was under suspicion of neglegting her child by allowing her to play in the complex playground.  I also read about the certain pain my daughter’s beloved friend endured when she was murdered at UNC, taken from her home where she was studying, and shot.  I heard about the troubled homes of the children my son goes to school with, one father so drunk he couldn’t pick up his child who was suspended from school for selling drugs and alcohol. A dear friend is still looking for work two years after being laid off.   She has to choose between food and medicine.  It is hard if not impossible to keep from giving up oneself to whole-hearted despair, or cynicism.

What can we do? How can we live?  our hearts ask us.

Christmas is for children, we think.  For the rest of us, it might be a respite or chance to “get” whatever the latest gadget might be, the one that promises to transform our life.  It might be precious time with overworked family members.  We keep our expectations modest.  And if the yearning for that elusive something rears up in us, we dismiss it as childish nonsense.  We are realists, we are adults, after all.

We can’t go back to childish ways, nor should we want to.  We know the world for what it is.  We know that wishes often don’t come true.  We know that precious children are wantonly destroyed.  It is hard-won knowledge.  And yet to dismiss our yearnings for the light, for transformation within ourselves and in our worlds, is equally as  foolish as indulging  a childlike fantasy that the world is a large Disneyland.  The high Holy Days of winter, in whatever tradition, honor both the inky darkness, and the light that often does shine in our lives, despite all.  And they ask us to live in the tension of knowledge of the dark, and the heart’s yearning for wholeness.

Please accept this offering of a poem, and the wish that light will come to you this winter solstice, and you will recognize it.

Hodie Christus Natus Est

Solstice Song in Four Parts

HODIE

Today.

Not tomorrow.

Not yesterday.

This night.

Not some perfected end time.

   Tonight.

Here on earth,

this earth,

this fire,

this hearth.

These clinking glasses

these voices ringing.

Our voices.  Not angels’.

Our voices, cracked and sweet, tired,

but singing.

CHRISTUS

The light in us

all.

We, like winter stars,

alone in the night sky,

constellations dancing together,

then apart,

circling this earth.

Our fires finite,

our fires bright.

NATUS

Born to us.

Born of dust in cattle and rank hay,

dust enlivened with breath.

Born of breaking waters,

born of blood and old enmities.

Out of this

a new thing.

A child.

Mild,

tender,

new light to walk the earth.

This earth.  Our earth.

EST

Is.

Not was

or will be.

But is.

Now.

Here.

To us,

this night.  Out of our darkness

of broken bodies, broken dreams, losses,

failures, sins,

we light candles

to

what

is.

Miracle Cure October 7, 2011

Last week, one of the participants in my class asked me if writing really did heal.  Well, that brought me up short.  If  it did, I suppose, I should be the healthiest gal on the planet, with the amount of scribbling I do.  But I’m not, I’m really quite sick, and have been going through a “bad” patch for quite a few months now, so that the bad patch is looking like the bottom line.

“Well,” I answered her, ” it is not a magic bullet, clearly, and you need to get physical things checked out, but finding your voice really is empowering…”  I went on to quote research, etc. She looked at me a bit dubiously.  I drove home rather dispritedly.  Was I fooling myself?

I went home to find an email from a long lost friend from the back of beyond, from what my son might call my “hippie” days.  She has started a restaurant in Baja California, and sent pictures, and it looked so beautiful that I immediately wanted to hop a plane and just disappear into that lush oasis by the Pacific.  Maybe there I could be healthy.  My friend, who is deeply spiritual and deeply a free spirit, emailed me when she heard I was struggling with my health, with a “Miracle Cure.”  I absolutely had to try it, she said, and I was back to our free wheeling days as waitresses, where she often wanted me to try substances.  I knew she sent it out of love, and for a nano second, I was tempted.  But I’ve been around the block too many times, I know the chemistry of my body and what is and isn’t working, and I know there is no miracle cure.  Just a long slow process of doing the best I can with the best docs I can find, keeping up with the research and accepting the reality of my life.

The confluence of these two events together got me to thinking.  I’ve been reading Radical Acceptance, by Tara Brach.  She is a psychologist and a practicing Buddhist, and her work speaks to the same issues of healing underlying issues of self-judgement, shame, anger and fear that often surface in our classes.  No matter what the reason people come to the classes–grief, pain, suffering, these emotions are the ones that often surface.  How does writing help heal the ways in which people deal with these often overwhelming emotions?  One way can be to create an open inquiry into our feelings–both as sensations and emotions.

Emotions are a combination of physical sensations and the stories we tell ourselves….they can cause suffering until we experience them where they live in our bodies.  If we can mentally note unfolding experience, the sensations and feelings, layers of historic hurt, fear and anger may begin to play themselves out in the light of awareness.  (Adapted from Tara Brach, Radical Acceptance)

This is not an easy process, nor a one time process, but a process of learning to sit with feelings.  How can writing help?  We can begin by naming sensations and feeling them in our bodies.  Here is one way to go about doing this:

Do a body scan.  Where is the tension?  Is it in your stomach?  In your journal, can you describe the sensation?  Can you make an image of it?  Now, what emotion do you associate with that sensation?  Does it signal danger, fear or anxiety?   Now, what story do you habitually put with such a feeling?  Notice that there are three parts to this process.  After you write about the sensation/feeling/story, take a deep breath and check yourself again?  Has it intensified?  Passed?  Could you withstand it?  Are you able to perhaps address it?  Treat it as an old enemy or friend?  Ask it what it wants to tell you?

This practice of noticing, describing, befriending, can begin to slowly to quiet us.  We can gradually begin to inquire lovingly into ourselves, into our felt experience of being in the world.  We can begin to notice stories which have had a hold on us which may not be true.  We may begin to notice areas of our lives which we habitually neglect.  Our journals can be the safe arms within which we can pour out our feelings, even the emotions we are most ashamed of.  This process can free the energy we use to resist our feelings to instead move through them, and thus have more energy to meet life.

Is it a “Miracle Cure?”  No.  But it is a way, one way, to help us heal.

 

 

 

Put To the Test March 28, 2011

I was thrilled last week to find that I am a commended poet in the 2011 Hippocrates Prize for Poetry and Medicine.  All poems will be included in an anthology which can be pre-ordered on this site: http://go.warwick.ac.uk/cpt/poetry/symp/ . The awards for commended poets and other awards are due to be made by the judges Broadcaster Mark Lawson, former Welsh National Poet Gwyneth Lewis, and leading GP Professor Steve Field on the afternoon of the International Symposium on Poetry and Medicine on Saturday, 7th May at the University of Warwick campus.

I wrote “Lumbar Puncture” after a frightening episode with a visual migraine that lasted over six weeks.  When the tests showed a slight shadow on my brain, the doctor wanted to check for MS.  I wanted to express the physical vulnerability of the test and radical spiritual destabilization that I experienced while I waited for the results.  If I lost these functions, who would I be?  Luckily, the test was negative, and I wasn’t put to the test.

Lumbar Puncture

 

I laugh while they do the puncture,

keeping up a steady stream of one-liners:

“Whiskey is my preferred pain killer” and

“don’t worry, if it hurts, you’ll know–

The whole place will know.”

I’m good at entertaining.

 

Relax, the doctor says.

Chris, the nurse, has her hands on me.  They are warm.

I think of my dog at the vet’s, her eyes darting, frantic.

I am all animal, knees to chest.

The doctor counts my vertebrae.

I think of spare ribs, I think

of making a joke.

 

Chris shows me the four vials of spinal fluid.

Clear, like water,

but full of meaning some bio-magician will decipher,

predicting my future:

a gradual loss of muscle control,

wheelchairs, and being fed

like a child, or not—

just some anomaly in the brain,

this shadow, this lesion.

 

My husband reads an article, “The End of Physics?”

I glance at it, eyes glazing.

The world is full of mysteries

I do not understand.

I understand his passion,

but I don’t care

where the atoms are in the box.

Do you feel the energy?  my PT says, and

I do.  I feel the colors of my chakras;

sunlight makes sense to me,

dogs wrestling in it.

 

The part of my brain with the shadow on it

houses memory, language, emotions,

each function a Tarot card waiting to be turned.

Will I learn to understand physics without them?

 

St. Augustine had a dream.  In it a small boy

tried to empty the ocean into his bucket.

The dream, the saint said, was a metaphor

for trying to grasp God with our minds.

 

The world is full

of mysteries.

 

The world is full.

 

4/2010

 

 

 

 

 

 

Prisoners March 8, 2011

It has been a rough winter, no doubt about it.   I’ve had flu, strep, and what now looks like pleurisy.  Every time I got up, another wave knocked me down.  I finally acknowledged that I had to resume my old habit of resting and pacing myself.  It was hard to have to acknowledge that.

I wrote in my journal that having this illness is like being in prison: you are confined, the world passes by without you.  Also, you never know when you will be violated, not by another person, but by some passing virus or bacteria.

Perhaps because that image of prison was on my mind, I found myself reading about Lori Berenson, the American political activist held in Peru for the past fifteen years on trumped of charges of terrorism in the Sunday New York Times Magazine (http://www.nytimes.com/2011/03/06/magazine/06berenson-t.html ).  One of the curious things she talked about was how carefree she was when she thought that her sentence wouldn’t be commuted . At the beginning, many terrorist prisoners, like Berenson, had life sentences. “It was somewhat carefree because you didn’t have any concrete sense of the future,” she told me. In a similar way, when I was sickest with CFIDS,  I also had no future.  There was only the present moment, and it was, in a sense, freeing.  As I got better, one of the hardest things was learning how to cope with a sense of a future, with participating in life.  How to apportion time and energy?  What goals were worth working for?  How to re-enter the stream of life, not as I was before, but in a new way that respected my limits, but also tested them?  These were and are difficult issues.

Another prisoner, Aung San Suu Kyi, recently freed from house arrest, talks almost wistfully about her house arrest.  Now she is exhausted by the demands of political life; then she got up and did her yoga and meditation, and worked in her office.  Then she had a sense of being in control of herself, even if she was not able to be a player in her country’s future.

I am happy to be in the world, even if to do so requires nun-like bouts of rest and saying “no” more often than “yes” to social activities.  I want to forget that I have this illness, but it doesn’t forget me.

Another way having this illness is like a prison sentence is that it feels like punishment.  Like Job, I search and search for the sins that have brought me to this place.  Like Lori Berenson, I feel falsely accused.  Like sufferers of lupus, Multiple Sclerosis, and TB before us, patients with CFIDS are often held responsible for it. I want to protest my innocence and be acquitted.  But as the DoDo bird said in Alice in Wonderland, “There is no judge, there is no jury.”  There is only the absurd world of this disease.  Made even more absurd and unbearable by the lack of understanding around it.  Today’s Science Times had a very good article about the difficulty of defining Chronic Fatigue Immune Dysfunction Syndrome (http://www.nytimes.com/2011/03/08/health/research/08fatigue.html?ref=science).  After last month’s article in Lancet which maintained that graded exercise and CBT could improve the lives of patients with CFIDS, many people have come up to me to tell me the good news.  Only the fact is, they have no idea of the complex immune, endocrine, and circulatory issues that I have to contend with, no idea of the level of exhaustion even mildly overdoing exercise can cause, no idea of the sensory overload that can catapult me into a relapse.  They have no idea of idea that sitting at the computer in the time it takes to write this post means I’ll  have to rest for an hour.

They have no idea.  Because they have never been to prison.

 

Take Off The Wheel December 6, 2010

I was in Walmart yesterday, a place I visit  infrequently.  I was on the way home from my CFIDS doctor in Atlanta, and thought I’d pop in and get a new pair of jeans. The advertisement in the  Oprah magazine had worked its magic and I was sure that with this pair of jeans I would look slimmer for the holidays.  I walked in through the garden section, hoping to pick up some pansies while I was there. Alas, there was nothing alive in the garden section but Christmas trees. Inside, instead of fertilizers and garden tools, were shelf after shelf of artificial trees and decorations– everything red, green and blue tinsel, or gold sparkles.  Next to the seasonal decorations was the toy section, the shelves stacked high to the ceiling with bright boxes.  Christmas music blared, relentlessly upbeat.

I am very fortunate that because of my illness, I don’t have to do much big-box shopping, and so I forget what it is like.  Even before my illness, I felt overwhelmed by large stores. Now, they seem like a peculiar form of torture.  What struck me perhaps more than anything this time were the stressed faces of the shoppers and workers.  If I had landed here from another planet I might think the inhabitants of this one were all suffering from a peculiar disease that destroyed peace of mind, that gnawed at them constantly from the inside.  Exhaustion seemed to permeate the place– the pressure of the holidays,and  the economic uncertainty people are living with.  Is it worth it, though, all these choices, all this stuff, is it worth it?  I couldn’t wait to get out of there.

Sometimes I think we’ve all gone mad, the pace of life becoming more and more frenetic.  Especially this time of year.  I find that I am out of step with my world –while everyone else is partying, going to concerts, or shopping, I am holding on for dear life to an attempt to observe Advent.  My understanding of Advent–of expectant waiting– has deepened over the years, from the time of gathering straws for the Baby Jesus in my childhood, to an inner prompting to engage with my doubts, losses and fear, but also with my longings, my hopes.  But to do that I need time, I need solitude.  I need to clear the muck out of my head so I can hear that still, small voice.  So, as much as I love partying and concerts and shopping, I find myself saying no a lot.

Gertrud Mueller Nelson, in her wonderful book about family ritual, “To Dance with God,” describes where our tradition of the Advent wreath comes from.  “Pre-Christian peoples who lived far north and who suffered the archetypal loss of life and light with the disappearance of the sun had a way of wooing back life and hope….As the days grew shorter and colder and the sun threatened to abandon the earth, these ancient people suffered the sort of guilt and separation anxiety which we also know.  Their solution was to bring all ordinary action and daily routine to a halt.  They gave in to the nature of winter, came away from their fields and put away their tools.  They removed the wheels from their carts and wagons, festooned them with greens and lights and brought them indoors to hang in their halls.They brought the wheels indoors as a sign of a different time, a time to stop and turn inward.”

None of us would like to return to ancient times, but Ms. Nelson challenges us  to imagine how our lives might be changed if were were to literally remove just one wheel from our cars: “Indeed, things would stop.  Our daily routines would come to a halt and we would have the leisure to incubate….Having to stay put, we would lose the opportunity to escape or deny our feelings or becomings because our cars could not bring us away to the circus in town.”

Even with an illness that offers time out from many of the demands of life, I wrestle with honoring both the inner life and the outer life.  There are a 1001 distractions available; the circus in town is now available on your iPod. Everything is instant–instant photos, instant emails, constant access. But the problem with all of this instant connection is that we don’t have the slow pacing, the space between, to actually contemplate a photo, or to carefully select our words in a message.  There is a frenetic urgency to our lives that is hard to resist.

I haven’t taken the wheel off my car yet.  I still have to do that shopping.  But I’m seeking out the space between.

What’s Wrong with this Picture??? October 15, 2010

I usually have one, two or more nurses-usually retired, working nurses don’t have time for writing–in my classes.  I’ve heard for years about the crying closet–usually a supply closet a nurse can go into to grieve privately when she/he loses a patient.  I’ve heard the story of a child dying in a young nurse’s arms, and how, as a mature woman, the nurse is still carrying the grief of the death with her.  I’ve known a student nurse who had severe stress after working on an oncology floor, but who had no way to process that stress.  We talk about caring for the caregiver, but when are we going to do something about it?

Yesterday, a working nurse told of how she cared for both her dying parents while a myriad of other disasters  befell her.  She had always, she reported, been known for her skills.  But when she asked her superior to give her some leniency, as she was grieving, she was told that she didn’t have the “luxury” to grieve, and to get back to being the high-functioning performer she had been.

Another retired psychiatric nurse, told of being put in an ICU unit.  Overwhelmed by being in a position she wasn’t trained for, she was later scolded for not–I repeat, not–letting a patient (who was an addict) bleed out.

Both nurses were taken to task for spending too much time with patients.

Hospitals today are under tremendous financial stress which translates into worker stress.  The question is–can overburdened caregivers give quality care to patients?

Arts experiences are one way hospitals can address the stress of caregiving.  Art at the bedside–writing, art, music, even dance, relieves the burden of care for nurses.  And weekly arts sessions held for nurses provide a way for them to help heal themselves, bring themselves into balance, and create more compassion for themselves, their patients, and each other.

One of the best sites to read about arts in healthcare is Marti Hand’s site:http://creativityinhealthcare.com.  A nurse and painter herself, she has done extensive research on how creativity heals.  In her latest post, she quotes David Bohm, “Creativity is fundamental to human experience. ”  We need to bring more humanity back into the healthcare environment, and arts interventions can be an important part of that effort.

Someday, there may not be a need for a crying closet.