“Maybe all that can be spoken by me at this time is not about happiness or unhappiness, or optimism or competition, but just that we are still here.  To be still here is all there is.”
— Marion Coutts, Iceberg

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Camellia bouquet and watercolor painting

I don’t mean to dwell on themes of death and dying and loss and grief, but I do feel compelled to recommend yet another book whose impact seems important and true.  Marion Coutts’s The Iceberg describes the too-short period in her marriage between her husband’s diagnosis of brain cancer and his death at age 53.  As I read it, I felt less like a voyeur and more like a witness to love and suffering when the worst thing that can happen is, in fact, actually happening

Like Diane Ackerman’s memoir about her husband’s stroke and the recovery of his language in A Hundred Names for Love, Coutts meditates on the meaning of loss of words and speech.  Both women’s husbands were professional writers, so the losses are especially poignant.  But for Coutts, unlike Ackerman’s situation, there was “no question of re-learning.”  She flatly states,  “This is not a rehabilitation story.”

As the brain cancer progressed, and words and names began slipping from her husband’s mind, Coutts reflected on other ways of communicating.  “What is there apart from language?  Let me list:   music, touch, the great inter-cosmos of the eyes, running and jumping, sex, cooking, friendship, eating. . . . We will devise another language and in it we will talk.”  And then later in the story she notes, “The tools we have are steadily depreciating.  We must use these poor, truncated tools or create new ones from scratch.  Silence holds more pressure.  It is simply more difficult to form and find words.”

Courts says, “The world experienced is the world described.”  So what is life in the absence of description?  “There is seeing and there is telling and what is one without the other?  In a marriage of near ten years and a friendship of longer, all visual experience is for two.  To see something is to store it up even as it is happening, as potential news, not even news, sub-news, to be retold, embellished, filtered or censored and described to another.  The other. . . . Soon, sometime soon I will have no one to tell this to.  What will experience be then?”

And there is real sorrow and anguish when, not unexpectedly, her husband starts forgetting her name.  “My name is a word like any other and though it means all of me to him, just like any other it may be lost.  This is the trajectory of disease and if we think about it, it is a natural progression.  But we do not think about it because disease is a wave and we are always, always in its wake.  Like survivors floating behind we are knocked stupid.  We must scavenge, pick things up and construct anew out of flotsam. . . . There is no getting ahead of the wave and imagining our lives enough in advance to prepare, and maybe if we could, then we could not live as we do held tight and fast.  We would simply drown, each alone and separate.  Yet somehow, somehow, we still expect our sacred and familiar selves to be spared from oblivion until that endpoint when there is no more time left for us anyway.  Marvelous.  Miraculous.”

At times, Coutts finds comfort in togetherness in silence.  “Yet wordlessness can be exquisite.  There are times when Tom can speak and when we have nothing more to say.”

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The Iceberg attests to serious illness as a series of grievous losses.  “We howl along, all three of us [Coutts, her husband, and very young son] together, with knocks and shocks and sudden up-speeding round curves skewed tight enough to spill us right out, and our bones and skin are broken and torn but there is always more bones and skin to be mangled.  Like a miraculous Catholic bloody endurance sport, there is always more.  In the space of three weeks, between us we have had hospital stays, fits, diarrhoea, speech loss, tonsillitis, swollen feet, mobility loss, demoralization, ambulances, glue ear and holidays …”

“You must know that illness is insatiable in its demands.”  Coutts says, “We note the demarcation lines of illness and wellness, their borders on alert, glowing green, soft and elastic, looping and curling to draw new phenomena ever within their reach and scope.  This too!  Ah yes of course!  This too!  You didn’t think you’d be spared this?  Everything has a side effect somewhere else.  Drugs layer new problems over like fresh scabs.”

When her husband becomes incontinent, she says, “Everything happens for the first time and then you know and the knowledge after that is never surprising again.”

The emotional and physical toll on Coutts is totally depleting and exhausting.  “I hold my body in extreme watchfulness and note how I never actually rest.”  Any activity or outing takes planning and vigilance.  Coutts says, “spontaneity is the privilege of the able-bodied.”  And even the best laid plans can easily go awry.  “I don’t tell Ev [her three-year-old son] what we are doing until we get there because I am unsure that we can achieve anything we set out to do …”

Coutts  seems very honest about the challenges of parenting a pre-school-aged child whose father is dying.  She dwells very little, however, on the impact of her husband’s terminal illness on her work.  She is an artist and a teacher.  Professional goals were set aside to cope with more pressing life issues.  “Loss of ambition means loss of focus, but the big one is loss of desire. … At one stroke my ambition has gone private and it has a singe goal: to keep us as a family alive so that our formation can continue. … I cannot achieve my ambition by my own or any other ends.  By hard work I cannot make it happen, by being good I cannot make it happen, by self-sacrifice I cannot make it happen, by being clever I cannot make it happen, by being more creative I cannot make it happen.  My previous ambitions, reliant on skill and will, are rendered mute, inert, and of no interest.”

Surrendering to the inevitability of death is the lesson here.  “Not to choose is incredible.  It makes the end of me so beautifully slight.  I have an imperative.  I may resist the imperative or I can love the imperative, it makes no difference.  By no effort of will can I change the terms.  All I can do is change my approach.”

Later she says, “There is never any choice.  I cannot win.  I know it.  Death trumps; trumps me, the child, all our desires combined.”

Coutts  ends her memoir with the death of her husband while he is in hospice care.  He sleeps and does not awake.  She is at his side.  “Death is mighty. … There is nothing in the world like it.  But there is nothing in it that is not like the world.”  She says, “I had thought that death was a separate foreign state.  It is, but it follows the contours of our own terrain.  And because we knew this terrain so intimately we were able to continue on through it as allies.  What we need to know here is what we already know.”

 

 

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“People with serious illness have priorities besides simply prolonging their lives.”
— Atul Gawande, Being Mortal:  Medicine and What Matters in the End

November morning, Green Lake

November morning, Green Lake

I am adding my voice to the acclaim surrounding Dr. Atul Gawande’s Being Mortal, his newest book about the failures of medical professionals and our culture to treat the terminally sick and aged in their final months and days.  It has been about one year since my father’s involuntary move to a nursing  home following a treatable medical crisis.  And while he recovered from the emergency that brought him to the hospital and then the nursing home for rehabilitation, his other mental and physical frailties — at age 94 — prevented him from returning home to live out his last days  on the farm he loved.

So Gawande’s writing resonated deeply with me.  Our family suffered from the agonizing decisions that were made without the consensus of all nine siblings (an impossible task given the time frames we were working with and how seemingly irreconcilable our differences of opinion were). Some of the rifts are still not healed.   And while the enormous commitments from a couple of siblings kept Dad living alone in his home for many years, in the end, it felt something like a failure that he did not die at home as he wished.

We were not alone in the challenges we faced in Dad’s  last year.  We no doubt could have done better.  None of us were especially good at holding the hard conversations with Dad about the realities of his limitations.  From my perspective, it seemed that he was unwilling to make decisions and face facts.  We struggled with the idea of allowing poor choices if that is what he wanted.

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Gawande says, “At least two kinds of courage are required in aging and sickness.  The first is the courage to confront the reality of mortality — the courage to seek out the truth of what is to be feared and what is to be hoped.  Such courage is difficult enough.  We have many reasons to shrink from it.  But even more daunting is the second kind of courage — the courage to act on the truth we find.  The problem is that the wise course is so frequently unclear.  For a long while, I thought this was simply because of uncertainty.  When it is hard to know what will happen, it is hard to know what to do.  But the challenge, I’ve come to see, it more fundamental than that.  One has to decide whether one’s fears or one’s hopes are what should matter most.”

I think we all can agree that merely providing safety and prolonging life are not the priorities that matter most in life.  Other concerns, such as avoiding suffering, strengthening relationships with family and friends, being mentally aware, not being a burden to others, and having autonomy, are perhaps more important.  And the only way to understand what matters most is to have conversations, to ask.  Gawande provides some helpful ways to frame these conversations.  He says to ask, “If time becomes short, what is most important to you?”  And here are some other questions to raise:

  • What do you understand your prognosis to be?
  • What are your concerns about what lies ahead?
  • What kinds of trade-offs are you willing to make?
  • How do you want to spend your time if your health worsens?
  • Who do you want to make decisions if you can’t?

What matters changes with our knowledge of life’s fragility and finitude.  With shorter horizons, our priorities narrow and our desires change.  How can one honor a desire to live independently and autonomously when limitations and debilities become more pronounced?  Gawandwe says, “This is what it means to have autonomy  — you may not control life’s circumstances, but getting to be the author of your life means getting to control what you do with them.”  We want to continue to shape our lives in ways that are consistent with our characters and values.

I am still not clear about how to respect the wishes of an increasingly frail person if they refuse to change at all.  Dad, for example, may  have wanted to die at home, but he absolutely refused to accept outside help.  He needed 24-hour care, but would not consider visiting nurses or a paid companion.

It seems to me that at some point, one does have to let go and accept the losses that old ages brings.  It would be wonderful  if this could be navigated gracefully.  Alas, we fall short. But the end of life can be transformative and meaningful.  Gawande’s book is an important conversation about these possibilities.

 

 

Beloved Dad, In Memory

March 10, 2014

Dad, you will always be with us in our hearts.

Dad, you will always be with us in our hearts.

“To live in this world
you must be able
to do three things:
to love what is mortal,
to hold it
against your bones knowing
your own life depends on it,
and, when the time comes, to let it go,
to let it go.”
— Mary Oliver

My Dad died last week.  His was a peaceful death.  One day, you could tell things just were not quite right.  Dad was more confused and unbalanced on his feet, but he was still as hospitable as ever, offering his visitors in the nursing home a beer (he kept a stash at the nursing station so that he could offer his drop-in guests a beer, a ritual of hospitality he maintained all his life).  Two days later he died peacefully in his sleep.

Dad had just celebrated his 95th birthday, so his was a long, full life.  He experienced the joys and sorrows of a life well lived.  He suffered the losses of his parents, ten of his siblings, and countless friends.  But he found comfort in and was sustained by his family — nine children, 18 grandchildren, and 11 great-grandchildren — his faith, and his farm and community.  Here are some words from his eulogy that reminded us of what such a long life entails:

“Dad would have been 8 years old in 1927 when Charles Lindbergh made the first nonstop flight across the Atlantic.  Could that 8-year old have even imagined that someday his children and grandchildren would have passport stamps from Israel, Peru and Ecuador, Thailand, Botswana and Morocco, and dozens of other countries?

Dad left school after 8th grade because, back then, there was no system in place to bus farm kids to the high school in town.  So at age 14, he finished school and stepped into the working world.  Think about Dad as that young adult.  Could he have imagined that he would send nine children to the University of Minnesota, and have several children and grandchildren with advanced degrees?

Dad would have been in his mid-teens when the New Deal’s Rural Electrification Program brought electricity to Minnesota farms.  Could he have imagined then that 80 years later we would be checking e-mail and taking photos with Smart phones smaller than a deck of cards?”

Dad was a loving parent and an exemplary role model.  When I was growing up, he worked a day job and then farmed full time on evenings and Saturdays. (Sunday was always a day of rest.)  So we are grateful that he had three decades of “retirement” with more time to fish, hunt, bowl, and play cards.  He played on the community’s over-35 baseball team well into his 60s!  Even when the tillable fields were eventually rented, Dad always cut and baled the meadow hay.  He planted a small patch of corn for the wild deer.  He mowed our expansive lawn and kept it tidily groomed. He bought huge bags of birdseed at Fleet Farm and suet from a local butcher so that he could feed the birds every day.  He was a good steward of the land.

And now his work is done.

The family came together to mourn his death and say goodbye.  All nine children gathered from Israel, Oregon, Washington, Wisconsin and Minnesota.  His son, who is on the parish cemetery board, helped prepare the burial site.  His granddaughters did the readings for the funeral mass.  His grandsons were pallbearers.  The church choir, of which Dad was a member well into his 90s, sang at the mass.  The town’s miliary honor guard added color and touching solemnity to the ceremony and honored Dad’s army service in WWII.  Countless people contributed salads and side dishes for the luncheon after the funeral — lots of Minnesota hot dishes.

We are all so grateful that we had Dad with us for so long.  He will always be with us in our hearts.

Let Evening Come
by Jane Kenyon

Let the light of late afternoon
shine through chinks in the barn, moving
up the bales as the sun moves down.

Let the cricket take up chafing
as a woman takes up her needles
and her yarn.  Let evening come.

Let dew collect on the hoe abandoned
in long grass.  Let the stars appear
and the moon disclose her silver horn.

Let the fox go back to its sandy den.
Let the wind die down.  Let the shed
go black inside.  Let evening come.

To the bottle in the ditch, to the scoop
in the oats, to air in the lung
let evening come.

Let it come, as it will, and don’t
be afraid.  God does not leave us
comfortless, so let evening come.

The funeral procession took Dad past his farm one last time on the way to the church.

The funeral procession took Dad past his farm one last time on the way to the church.

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Approaching Age 60

November 13, 2013

Sometimes a book arrives at just the right time in life.  I felt this way about Nothing to Be Frightened Of by Julian Barnes, written as he was turning 60.

Julian Barnes book, Nothing to Be Frightened Of

Barnes says, “Sometimes my coevals say, in a puzzled fashion, ‘The funny thing is, I don’t feel any older.’  I certainly do.”

I’m with Barnes.  Some of my friends insist that 60 is the new 40, or that “You’re not old at 60.”  But I beg to differ.  At 60, I will be entering old age.  And I am interested in how navigating this last part of my life will differ (or stay the same) from my earlier selves.  I am the fifth of my siblings to pass into our sixth decade, but none of them remarked that it was a significant passage for them.  It seems important to me, though.

In this book, Barnes, an agnostic, writes about how writers, philosophers, friends and relatives came to terms with death, that ultimate extinction.  He writes about fear of death, fear of dying, and of seeing death as nothing to be frightened of.  I can’t say that I learned anything new to take with me on my personal journey to the end.  None of us know how death will come for us, or whether what we believe will help us die gracefully or painfully.

But I still found myself drawn to Barnes’ musings, perhaps because I think about death often, too.

“Death can’t be talked down, or parlayed into anything; it simply declines to come to the negotiating table. . . . death never lets you down, remains on call seven days a week, and is happy to work three consecutive eight-hour shifts.”  There is no escaping it.

I’ve read one other book by Barnes, Levels of Life, which touches on his recent widowhood.

The book Levels of Life, by Julian Barnes

In that book he says, “Every love story is a potential grief story.  If not at first, then later.  If not for one, then for the other.  Sometimes for both.”  And he goes on to say, “Pain shows that you have not forgotten; pain enhances the flavour of memory; pain is a proof of love.”

These words resonate with me, too.

“And this is what we mean by friends.  Even when they are absent, they are with us . . . even when they are weak, they are strong; and even when they are dead, they are alive.”
— Cicero

A light in the darkness -- the Macy star and Westlake tree, Seattle

A light in the darkness — the Macy’s star and Westlake tree, Seattle

“Listen to me: everything you think you know, every relationship you’ve ever taken for granted, every plan or possibility you’ve ever hatched, every conceit or endeavor you’ve ever concocted, can be stripped from you in an instant.  Sooner or later, it will happen.  So prepare yourself.  Be ready not to be ready.  Be ready to be brought to your knees and beaten to dust.  Because no stable foundation, no act of will, no force of cautious habit will save you from this fact:  nothing is indestructible.”
— Jonathan Evison, from The Revised Fundamentals of Caregiving

Today’s post is in memory of Alden, my daughter’s best friend, who died one year ago.  Sometimes it is difficult to find the strength to stay open to the joys of the season.  I am privileged to witness my daughter’s courage in this regard.  My heartfelt best wishes to everyone who is suffering the absence of beloved friends and family this holiday season.

” . . . simply living demands all the courage that we have.”
— Adam Gopnik, from Winter: Five Windows on the Season

Fallen maple leaves with raindrops

Fallen leaves at Lake Chelan State Park

“Adding a leaf’s breadth to the depth of the soil.”

“How pleasant to walk over beds of these fresh, crisp, rustling fallen leaves — young hyson, green tea, clean, crisp, and wholesome!  How beautiful they go to their graves!  how gently lay themselves down and turn to mould!  — painted of a thousand hues and fit to make the beds of us living.  So they troop to their graves, light and frisky.  They put on no weeds.  Merrily they go scampering over the earth, selecting their graves, whispering all through the woods about it.  They that waved so loftily, how contentedly they return to dust again and are laid low, resigned to lie and decay at the foot of the tree and afford nourishment to new generations of their kind, as well as to flutter on high!  How they are mixed up, all species, — oak and maple and chestnut and birch!  they are about to add a leaf’s breadth to the depth of the soil.  We are all the richer for their decay.  Nature is not cluttered with them.  She is a perfect husbandman; she stores them all.”
— Henry David Thoreau, Journals, October 20, 1853

Fallen maple leaf on pavement, already starting to decay

Autumn is that elegiac time of year, and fallen leaves are its emblem.  I recently read (in a blog I follow called “The Improvised Life“) about an intriguing art installation by Jane Hammond consisting of handmade leaves, each inscribed with the name of a U.S. soldier killed in Iraq.  This memorial sculpture is called Fallenand it seemed fitting to share it with you today, Veteran’s Day, when we honor all service men and women, living and dead.  You can follow the links to read more about this piece of art and see it installed in its last exhibition.

Leaves of a yellow buckeye tree

“This is June, the month of grass and leaves. The deciduous trees are investing the evergreens and revealing how dark they are. Already the aspens are trembling again, and a new summer is offered me. I feel a little fluttered in my thoughts, as if I might be too late. Each season is but an infinitesimal point. It no sooner comes than it is gone. It has no duration. It simply gives a tone and hue to my thought.”
— Henry David Thoreau, journal entry June 6, 1857

How fleeting the seasons are.  How fleeting life is.  I read this quote in one of the blogs I follow called Anecdotal Evidence: A Blog about the Intersection of Books and Life.  At the time Thoreau wrote this passage in his journal, he would live only long enough to see four more Junes.

I often think about death and the brevity of one’s life.  Sometimes I think about writing a “Death blog” to share my collection of quotes and poems about this final passage.  I believe that thinking about my eventual death helps me to appreciate the time I have, helps me to stay focused on living each moment more deeply.

Summer seems like an odd time to contemplate death, but as we all know, people die every day.  Every year we unwittingly pass the anniversary of our deaths — we just don’t know the date yet.  Here is a poem that reminds us of that:

For the Anniversary of My Death
by W. S. Merwin

Every year without knowing it I have passed the day
When the last fires will wave to me
And the silence will set out
Tireless traveler
Like the beam of a lightless star

Then I will no longer
Find myself in life as in a strange garment
Surprised at the earth
And the love of one woman
And the shamelessness of men
As today writing after three days of rain
Hearing the wren sing and the falling cease
And bowing not knowing to what