1. ON HOPE

    Sherwin Nuland held a post as a surgeon and lecturer at the Yale School of Medicine for over three decades.  In 1994, he published the groundbreaking book How We Die: Reflections on Life’s Final Chapter.  His stated goal with the book was to demystify the process of dying. 

    From How We Die:

    A young doctor learns no more important lesson than the admonition that he must never allow his patients to lose hope, even when they are obviously dying.

    Scanning my Webster’s Unabridged, I find five separate interpretations of the meaning of the noun hope, and that doesn’t include the synonyms.  The meanings listed range from ‘the highest degree of well-founded expectations’ to expectation that is ‘at least slight.’  In a separate entry is to be found an example of usage for hope as an intransitive verb, and herein may lie the crux of the matter for many patients suffering with terminal cancer: ‘to hope against hope,’ which the lexicographers describe as ‘having hope thought it seems to be baseless.’  A physician has no greater obligation than to be sure that no hope is baseless if he has given his patient reason to believe in it.

    Too often, physicians misunderstand the ingredients of hope, thinking it refers only to cure or remission.  They feel it necessary to transmit to a cancer-ridden patient, by inference if not by actual statement, the erroneous message that it is still possible to attain months or years of symptom-free life.  When an otherwise totally honest and beneficent physician is asked why he does this, his answer is likely to be some variation of, ‘Because I didn’t want to take away his only hope.’  This is done with the best of intentions, but the hell whose access road is paved with those good intentions becomes too often the hell of suffering through which a misled person must pass before he succumbs to inevitable death.

    A physician must offer treatments to keep the patient alive.  As well a physician must prevent further harm to the patient, which can be caused by futile treatments.  There seems to be a whole lot of grey area between these two responsibilities and, quite often nowadays, there seems to be a whole lot of silence. 

     

  2. A NEW PAIN

    Roland Barthes, post-structuralist philosopher and literary theorist, kept a journal after his mother died.  His jottings were compiled and published in 2009 as Mourning Diary.

    From four weeks after she died: 

    November 30, 1977

    At each ‘moment’ of suffering, I believe it to be the very one in which for the first time I realize my mourning. 

    In other words: totality of intensity.

    From about five weeks after:

    December 7, 1977

    Now, from time to time, there unexpectedly rises within me, like a bursting bubble: the realization that she no longer exists, she no longer exists, totally and forever.  This is a flat condition, utterly unadjectival—dizzying because meaningless (without any possible interpretation). 

    A new pain.

     

     

  3. ON COURAGE

    Roland Barthes, post-structuralist philosopher and literary theorist, kept a journal after his mother died.  His jottings were compiled and published in 2009 as Mourning Diary

    From about two and half weeks after she died:

    November 10, 1977

    People tell you to keep your ‘courage’ up.  But the time for courage is when she was sick, when I took care of her and saw her suffering, her sadness, and when I had to conceal my tears.  Constantly one had to make a decision, put on a mask, and that was courage.

        —Now, courage means the will to live and there’s all too much of that.”

     

  4. IS CANCER A WAR?

    One morning in the summer of 2010 the famously atheistic journalist Christopher Hitchens awoke, as he says, “feeling as if I were actually shackled to my own corpse.”

    Hitchens and his wife, Carol, were known for hosting spirited dinner parties for British and American intelligentsia, from both the right and the left.  At these parties, Hitchens would display an insatiable appetite for scotch, cigars, and debates that lasted until dawn.  “I have more than once in my time woken up feeling like death,” writes Hitchens. 

    But this morning in 2010 was different.  This time it turned out he had Stage Four esophageal cancer.  “The thing about Stage Four is that there is no such thing as Stage Five.”  He died eighteen months later, on December 15, 2011. 

    His essays narrating his encounter with cancer were first published in his regular column in Vanity Fair and are now collected in the book Mortality.  Not one to succumb to easy sentimentality or fall for schmaltzy cancer metaphors, he’s left us with a refreshingly sharp and wry document on the experience of being ill and the experience of approaching one’s own death. 

    He writes:

    In January 1971, Senators Kennedy and Javits sponsored the ‘Conquest of Cancer Act,’ and by December of that year Richard Nixon had signed something like it into law, along with huge federal appropriations.  The talk was all of a ‘War on Cancer.’

    Four decades later, those other glorious ‘wars,’ on poverty and drugs and terror, combine to mock such rhetoric, and, as often as I am encouraged to ‘battle’ my own tumor, I can’t shake the feeling that it is the cancer that is making war on me.  The dread with which it is discussed—‘the big C’—is still almost superstitious.  So is the ever whispered hope of a new treatment or cure.

    Hitchens’ wit outlives him.

     

  5. IS DEATH A BATTLE?

    Sherwin Nuland died earlier this year at the age of 83.   He was raised in a cramped apartment in the Bronx, shared by six family members from three generations.  In his own words, as soon as he became conscious of life, he “began the long process of watching someone die.” 

    This someone was his grandma Bubbeh, one of his primary caretakers, as his mother had died when he was 11.  From when Nuland was a young boy to when he was a teenager, he witnessed the drawn out weakening of Bubbeh’s heart, her eyesight, her bladder, her teeth, her cognition—until she finally died at the age of 93.  Says Nuland, “I have not often seen much dignity in the process by which we die.” 

    Nuland went on to hold a post as a surgeon and lecturer at the Yale School of Medicine for over three decades.  In 1994, he published the groundbreaking book How We Die: Reflections on Life’s Final Chapter.  His stated goal with the book was to demystify the process of dying. 

    From How We Die:

    Death is regarded as the final and perhaps the ultimate challenge of any person’s life—a pitched battle that must be won.  In that view, death is a grim adversary to be overcome, whether with the dramatic armaments of high-tech biomedicine or by a conscious acquiescence to its power, an acquiescence that evokes the serene style for which present usage has invented a term: ‘Death with dignity’ is our society’s expression of the universal yearning to achieve a graceful triumph over the stark and often repugnant finality of life’s last sputterings.

    But the fact is, death is not a confrontation.  It is simply an event in the sequence of nature’s ongoing rhythms.  Every triumph over some major pathology, no matter how ringing the victory, is only a reprieve from the inevitable end.

    The book is not for the faint of heart, nor for those who are made squeamish by explicit medical details.  That said, it’s the kind of book that once you read it, you will forever perceive the world in clearer and richer terms.  

     

     

  6. WHATEVER IS

    It is hard to have patience with people who say, ‘There is no death’ or ‘Death doesn’t matter.’  There is death.  And whatever is matters.  You might as well say that birth doesn’t matter. She died.  She is dead.  Is the word so difficult to learn?

    — C.S. Lewis, A Grief Observed

     

  7. HER ABSENCE IS LIKE THE SKY

    I briefly considered calling my film by the above title.  For various reasons, I didn’t.  Yet for me this phrase clearly conveys the confusion I felt after Aimee died.  I couldn’t understand why everything should feel so different—why not only the things directly and specifically related to her? 

    C.S. Lewis, in A Grief Observed, writes:

    At first I was afraid of going to places where H. and I had been happy—our favourite pub, our favourite wood.  But I decided to do it at once—like sending a pilot up again as soon as possible after he’s had a crash.  Unexpectedly it makes no difference. Her absence is like the sky, spread over everything.

    The first thing I realized when I went home to Indiana and started shooting my film, sixteen years after my older sister Aimee’s death, was that everything in my parents’ house reminded me of Aimee.  From the bare lightbulb in the laundry room to the maroon couch in my dad’s office to the Cream of Wheat in the kitchen cabinet.  Once I admitted this, I was on my way towards feeling differently.

     

  8. I AM SO MUCH MORE THAN FIVE STAGES

    As noted last week, Elisabeth Kübler-Ross, the author of On Death and Dying, was distressed by the misrepresentation of her five stages of grief in pop culture. 

    Kübler-Ross was partially paralyzed and suffered constant pain for the last nine years of her life due to a series of strokes.  She was dependent on others for her basic needs.  She was none too pleased with her fate.  

    She was quoted, towards the end, as saying:

    My only regret is that for 40 years I spoke of a good God who helps people, who knows what you need and how all you have to do is ask for it. Well, that’s baloney. I want to tell the world that it’s a bunch of bull. Don’t believe a word of it.

    When asked which of the five stages she was in, she’d reply, “Anger.  I’m pissed!”  Some folks claimed these comments discredited her life’s work.  Besides leaning on the anti-feminist tact of trying to undermine her intellectual work with her personal life, this criticism entirely misses the point.  Kübler-Ross used to joke that people loved the idea of her stages, but hated to be in any one of them. 

    Kübler-Ross wrote, from her deathbed, the epilogue to the 2005 book On Grief and Grieving:

    I now know that the purpose of my life is more than these stages.  I have been married, had kids, then grandkids, written books, and traveled.  I have loved and lost, and I am so much more than five stages.  And so are you.

    It seems that Kübler-Ross was eager, even desperate, to initiate a richer way of talking about grief.  I hope someday her legacy will align less with distorted reductions of her ideas, and more with her courage and frankness in facing what is often a chaotic emotional experience. 

     

  9. WHAT ABOUT THE FIVE STAGES?

    Dr. Elisabeth Kübler-Ross captured the attention of pop psychology in the 1970s with the five stages of grief she’d noticed in dying patients facing their impending deaths.  She identified the five stages: denial, anger, bargaining, depression, acceptance.  It’s been said that her book in which she discussed these stages, On Death and Dying (1969), invented the contemporary field of thanatology

    Let me say it again.  On Death and Dying was based on two and half years of interviews with dying patients.   Somehow, quite mysteriously, through the prism of mass culture and over the course of several decades, her stages have gained household familiarity as the grieving process of the bereaved.  Pop psychology purports the stages parade by sequentially, each stage discreet, in a tidy linear progression.   This is a gross misrepresentation both of Kübler-Ross’ intentions and her claims. 

    Still today, Kübler-Ross’ stages are often misrepresented.  Through no fault of her own—and much to her frustration—Kübler-Ross’ stages have become one of the single greatest sources of misinformation about grief.  Shortly before her death, in the 2005 book On Grief and Grieving, Kübler-Ross tried to set the record straight:

    The stages… were never meant to help tuck messy emotions into neat packages.  They are responses to loss that many people have, but there is not a typical response to loss, as there is no typical loss.  Our grief is as individual as our lives.

    The five stages—denial, anger, bargaining, depression, and acceptance—are a part of the framework that makes up our learning to live with the one we lost.  They are tools to help us frame and identify what we may be feeling.  But they are not stops on some linear timeline in grief.  Not everyone goes through all of them or goes in a prescribed order.

    More next week on Kübler-Ross’ reactions to her own dying process—and the surrounding controversy. 

     

  10. TO SPEAK AND THINK

    British psychoanalyst Darian Leader, in his 2008 book The New Black: Mourning, Melancholia and Depression, talks about what he calls “the dialogue of mournings.”  He means telling one’s own story and hearing other people’s stories. 

    The dialogue of mournings… can mean the difference between the mourning process getting started and an inertial state in which life seems to have nothing to offer and nothing changes…. And this is where the arts become so essential to human societies.  Works of art, after all, share something very simple: they have been made, and made usually out of an experience of loss or catastrophe.  Our very exposure to this process can encourage us, in turn, to create, from keeping a journal to writing fiction or poetry or taking brush to canvas.  Or simply to speak and think.

    I feel compelled to make the film Peanut Gallery.  Of course not everyone has to undertake an enormous concrete grief project.  Leader is getting at something deeper here.  He’s saying that mourning itself is a creative process, a mysterious process, a personal process.