The groundbreaking book The Empty Room: Understanding Sibling Loss was published in 2004.  It’s a thoroughly engaging, journalistically complex, psychologically deep exploration of the impact of a sister’s or brother’s death on the remaining sibling—the first of it’s kind. 

    Author Elizabeth DeVita-Raeburn is the younger sister of the boy in the plastic bubble.  Her older brother Ted died at age seventeen after spending eight years living with a rare autoimmune disease in a sealed off hospital room.

    DeVita-Raeburn’s account of the burial:

    A few days later, I find myself standing at the edge of his grave, trying to picture him, my best friend, the ringmaster of my life, lying in a gunmetal casket suspended by straps over a hole in the earth.  I feel numb, incredulous.  Will he be lonely?  Scared?  The fact that it will rain and snow on him makes me crazy. 

    I make a plan.  I will crawl in with him.  If I can’t get the casket open, I will throw myself in the hole after him.  I don’t care about the dirt, the bugs, breathing.  I don’t want him to be alone.  I don’t want to be left alone.  I don’t want to go on, brotherless.  I don’t know how.  I might as well go on headless.  He is my geography, my map.  I need him.

    A woman, mercifully faceless now, separates herself from the lingering crowd, takes me by the arm, and leans in close enough to that I can smell her perfume, see the lipstick on her teeth.  ‘You’ll have to be very good now,’ she whispers intently, sadly. ‘Your parents are going through a lot.’  Her hand is a pincer around my elbow.  Her words are a jab from a sharp knife.  They make me feel selfish, ashamed.

    It turns out most bereaved siblings, even those who become so in adulthood, live out this scene or something similar.  I don’t remember a specific moment in this vein, but I did carry precisely that feeling she describes with me into adulthood.    

    Before reading The Empty Room I couldn’t articulate how any of my current life related to the loss of my sister. DeVita-Raeburn opened the door for me as I’m sure she has for many others.  She started a public conversation that I hope to continue with Peanut Gallery



    C.S. Lewis (Clive Staples “Jack” Lewis) is best known for The Chronicles of Narnia.   After his wife, Helen Joy Davidmann, died in 1960, he kept a mourning diary.  It was published the following year as A Grief Observed, under the pseudonym N.W. Clerk.  It’s a singularly cogent and deep account of grief. 

    Early on, assumably in the days and weeks following the wake, he writes: 

    There is a sort of invisible blanket between the world and me.  I find it hard to take in what anyone says.  Or perhaps, hard to want to take it in.  It is so uninteresting.  Yet I want the others to be about me.  I dread the moments when the house is empty.  If only they would talk to one another and not to me.

     For more on C.S. Lewis’ marriage and work, see the April 7th post. 



    For the answer, check out an article I wrote for the organization Open to Hope: http://www.opentohope.com/my-sister-died-and-i-waited-16-years-to-deal-with-it/


  4. 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. 



    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.




    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.”



    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.



    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.  




    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



    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.