Feeling at Home at Christmas December 9, 2016

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

 

 

 

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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.