Time Machines

if i believe

in death be sure

of this

it is

because you have loved me,

moon and sunset

stars and flowers

gold creshendo and silver muting

of seatides

i trusted not,

one night

when in my fingers

drooped your shining body

when my heart

sang between your perfect

breasts

darkness and beauty of stars

was on my mouth petals danced

against my eyes

and down

the singing reaches of

my soul

spoke

the green--

greeting pale

departing irrevocable

sea

i knew thee death.

and when

i have offered up each fragrant

night,when all my days

shall have before a certain

face become

white

perfume

only,

from the ashes

then

thou wilt rise and thou

wilt come to her and brush

the mischief from her eyes and fold

her

mouth the new

flower with

thy unimaginable

wings,where dwells the breath

of all persisting stars

e.e. cummings

The Industrial Revolution and Information Ages have aided in extending and enhancing our lives in many ways. In fact, the mortality rate in London for children younger than age five decreased from 75% in 1730 - 1749 to 32% in 1810 - 1829.

Yet, during the time when early deaths were more prevalent, death-related rituals were often less austere and forbidding. Western institutionalization has gradually swallowed death into it's economy with ritualization evolving into part of the orchestrated establishment of the funerary (and other) industry and where mourning practices are often strictly proscribed. In addition, today's funeral, on average, costs around $7000.00.

In many places, including the Cook Islands and Samoa, the dead are cared for in the homes by family members and then they are buried in the front yards of the family homeland. The homeland is never sold; rather, it is passed down from one generation to the next. Many of the tombs are above ground and family death is integrated into life in a way very different from Western culture.

Interestingly, the home funeral movement is emerging in the United States; a sort of grassroots time machine to the distant past.  Death doulas are being trained to assist those seeking home funerals for their loved ones- including babies and children who die.  Beth Knox knew intuitively that it was what she wanted when her seven-year-old, beautiful daughter, Alison Sanders, died in 1995.

Knox speaks of her experience and says,

"We're required by law to care for our children," she said. "But at the last hour, we're told that their body doesn't belong to us anymore. That makes no sense."

Knox found a funeral director willing to bring Alison's body home, where family members, friends and neighbors joined in a three-day vigil. By the time the funeral director returned to take Alison's body to her funeral and then to the crematory, Knox was, she said, ready to let her go.

Having imagined, as most parents do, that she could never endure the catastrophe of a child's death, Knox found that "when it actually happened, my senses were so highly attuned to the sense of love, I had a very precise presence of mind, very clear sense of direction." There is, she said, "a lot of comfort in being able to perform acts of love in these unbearable situations."

In most states, 45 to be precise, it is legal to care for one's own dead in the home. Oddly, many do not think to ask if they are permitted by the State to take their beloved one home; rather, it is assumed that the funeral home will whisk away the dead. So the men in gray suits are summoned and the 'body' is cleanly lifted off, out of sight, to a sterile room of foreign mortar and unfamiliar melodies harkening back three decades. And then the 'body', now recently unfamiliar to us, is taken to a cemetery two or twenty miles from home. It just feels so detached from the reality of death- and natural loving instinct. So many still do not understand their own rights with regard to their dead - the very dead to whom they still belong.

I wish I would have thought to ask 'permission' for a home funeral when Chey died. I wish I had my own piece of family land where I could bury her sacred remains. I believe I'd have chosen this if I had supportive others - like death midwives- guiding me.  It is certainly not something that all would choose; but still the choice should be offered for this uniquely antediluvian ritualization of the dead.  

If only time machines really did exist...

From Helplessness to Hope

MISS Foundation Families Speak Out About Their Very Personal Losses

The Unjust Politicking of Stillbirth by Feminist Groups: 

A Response to Unreasonability

Remembering the Dead: Thoughts from Kierkegaard

"In relationship to one dead you have criterion whereby you can test yourself... it is one's duty to love [those] we do not see...we cannot be set aside because death separates them from us, for duty is eternal."

Søren Kierkegaard

I spent today reading Kierkegaard's "Works of Love". Specifically, a piece called 'the work of love in remembering one dead' whereby he asserts that actively remembering our dead is an act of duty that epitomizes the most unselfish, freest, and most faithful love. Perhaps, it brought me so easily to tears because it is that time of year when my heart, like brittle blown glass, is more fragile than robust. Or, perhaps, it resonated because his words offered marrow to my own philosophy and dutiful practice.

Kierkegaard asserts that the work of love in remembering one who is dead is a work of the most unselfish love. It is unrequited, for the dead can never reciprocate:

"O, if one were accustomed to truly love unselfishly, one would certainly remember the dead differently from the way one usually does after the first period, frequently rather than brief, in which one loves the dead inordinately enough with cries and clamour."

And the work of love in remembering the dead is a work of the freest love. There is no coercion nor compulsion to continue loving the dead. It is an act of authenticity and freewill, not an act of demand or obligation. To remember one dead is intentional and quite different than simply not forgetting soon after the death. It withstands the test of time:

"With respect to one dead... nothing is coercive at all. On the other hand, the loving memory of one dead has to protect itself against...new impressions to expel the memory, and it has to protect itself against time...Time has a dangerous power; in time is is so easy to make a beginning again and thereby to forget...In the meantime, the multiplicity of life's demands beckons to one, the living beckon to one and say: come to us, we will take care of you. One who is dead, however, cannot beckon."

Finally, the work of love in remembering the dead is a work of the most faithful love. It requires unwavering and enduring devotion, for neither affection, nor love, nor strength, nor kindness can be returned from one who is dead. Our dead do nothing to hold on to us; still, in remembering our dead, we love disinterestedly, freely, and faithfully. We hold a place in our lives for their psychological presence. This work of love in remembering the dead is faithful because our dead cannot compel steadfastness of our covenant to remember- the one we made at the moment of death when we vow emphatically, "I will never forget.". Rather, our dead remain passive and unchanged, unable to hold us accountable for fulfilling our promise to remember:

"Little by little, as the dead crumbles away, the memory crumbles away between the fingers and one does not know what becomes of it...if love still abides, it is most faithful."

As I finished reading this piece, tears filled my eyes. I felt vindicated in some small way, as if the world who had so long misunderstood my seemingly strange, unceasing allegiance to my dead child was woefully misguided in its assumptions. The love I hold for her in my heart and the space I allow for her in my life is an act of unselfishness, freewill, and faithfulness. This sounds much more palatable than psychopathologizing the bereaved who choose to remember their dead. And in so doing, I have been better able to learn, grow, endure, and mostly to love all those around me:

"If you love one dead, then remember him lovingly, and learn from him, precisely as one who is dead; learn the kindness of thought, the definiteness in expression, the strength in unchangeableness, the pride in life which you would not be able to learn as well from any human being, even the most highly gifted...Remember one dead and learn in just this way to love the living disinterestedly, freely, faithfully... Remember one who is dead, and in addition to the blessing which is inseparable from this work of love, you will also have the best guidance to understanding life; that it is one's duty to love the men we do not see, but also those we do see."

A Cry Unheard

Seeking to forget makes exile all the longer; the secret of redemption lies in remembrance.

Richard von Weizsaecker

I picked up a new book last week on the recommendation of a colleague: A Cry Unheard: The Medical Consequences of Loneliness by James J. Lynch. I only wish I'd had this book in hand when I conducted my own research on the effects of social support on women after the death of a baby.  This seminal book is filled with clinical research on the dangers of social isolation, including the effects on the body and health.  Lynch captured data demonstrating the devastating health consequences of shame, anxiety, anger, and fear that was unrecognized, undetected, and most importantly, unheard.  I think this fact, for me, was the most important. It wasn't that the emotions themselves were "bad" or "negative" as contemporary theorists might imply. It was that the person experiencing them, and others too, did not acknowledge the emotions that created the problematic outcomes.  They were abandoned- both by others, and also by themselves.

In sum, he found that such social disenfranchisement can lead to fluctuations in blood pressure and respiration, depressed immune functioning, heart disease, hypertension, and a host of other physiological maladies. He notes that: "Those lacking social support, those who live alone, those who struggle with chronic loneliness, those who lose a loved one, all exhibit sharply increased risks of dying prematurely."

I've posted a great deal about narcissism, grief, and finding gratitude- and how, when the time is right, there is an imperative to move beyond our own suffering and see the suffering of the other.  There are some bereaved who may never move to that space where they are willing, thus able, to do that. Lynch calls this the "black hole". He says:  "Like black holes in space, such individuals absorb all light and all objects around them while emitting nothing back. Nothing escapes their...emptiness."

Conversely, he recommends looking "out into the world beyond the confines of your own skin...listening to a bird sing can lower blood pressure...gazing at the stars" too. "Listening to one's fellow (hu)man in dialogue can lower blood pressure."  Basically, moving beyond the necessary narcissism of early grief.

Lynch believes that "dialogue is the elixir of life and chronic loneliness its lethal poison". But what about the dialogue often aimed at bereaved parents? You know- those promptings to "move on", "God has a plan for you", "at least it wasn't one of the older ones", "you can have more", "everything happen for a reason", "time heals all wounds", and "aren't you done grieving yet"s?  Lynch said that dialogue can also be used to create distance, that it can be used to manipulate. He asserts that "empty language suppresses hope...and is spoken from outside our own hearts...(where) human dialogue is ruptured, destroyed, or reduced to a living hell" when abused in this way.  He termed it toxic talk, and far too many bereaved parents have experienced a litany of such dialogue.

I deeply appreciated Lynch's honest explorations as a medical doctor, professor, and human being.  It confirmed that the bereaved should be sensitive to their own needs; and then, when ready, actively engage in moving beyond the self.  The (temporarily) non-bereaved should engage in dialogue that is comforting and from the heart. They should not seek to cure or heal or absolve. Rather, they should seek only to be with the suffering. They should use words with great care and intention, for it is easy to destroy a fragile other with a few, seemingly benign, syllables. 

Allow them to remember, and invite them warmly back from exile.

The First Smile

The world breaks us all, 

and afterward some are stronger in those broken places.

Ernest Hemingway

I remember the day with piquant detail. The first smile after she died, cracking my cheeks, splitting my skull in two. I felt as if I'd committed an act of desecration, voyeurs witnessing my fait accompli. My dead child in her pink satin casket lay there lifeless. And I smiled. 

I do not recall who caused this act of irreverence- or what they said or did to prompt it. I only remember standing outside of myself in shame. Smiling is an act of the living. I was not alive; I certainly felt dead.  But the dead do not smile.  

I knew in that moment I was not one of the dead. No matter how much I beckoned, I knew Death would come on its own will.  I also knew that I was not amongst the real living. I existed in some liminal place between breath and stillness, extinction and existence, nether and numinous, and life and death.  I was broken, irreparably shattered.

For months, I wandered through the valley of the shadows as I vacillated between the world of the living and the world of the dead. I struggled to accept life's mediocrity, longed for my now fugitive naïveté, and wished for ailments of trivia instead of trauma.  

What glue could hold those broken places? What stitch would ensure proper healing? What concoction would purge me of the pain? Which God could heal my suffering and despair?

It would be many months before smiles would come again. But they came. Slowly and painfully. I did not want others to assure me that it was okay to smile and that I should move on and be happy in my life. This, I knew, would one day be my truth. But I was not ready yet. I needed pause. Her life and death were worthy of this interruption in my previously assumed entitlement to an untainted, joyous sojourn. Instead, I wanted others to accept my shame without judgment, to hold a place for my broken, sometimes irrational, state of mind. Often, they could not. Like a leper, raw grief frightened them. 

Nevertheless, I would not accept their platitudes or poisons. I rejected their attempts to tug me toward the future faster than I was ready. I refused to abandon my brokenness in exchange for cheap glue or careless stitching. I indulged in time and tears and tribulation. I became a seeker of healing that would endure, not healing that was shoddily constructed with plastic words, or pills, or even a magic wand, susceptible to rebreaking under the slightest pressure.

What I've realized over the past 14 years is that it was the very grief that frightened them- that raw grief which seeped from my broken places like blood spilling from a wound- that truly healed me. I have become stronger in my broken places.  And I am smiling again.

From the Gallows of Grief to Gratitude

There is nothing so whole as a broken heart.

Mendel of Kotzk

This quote reminds me of what I've learned during my grief journey. 

I've learned that in brokenness, there can be wholeness. In the darkness, there can be light. In egoism, there can be selflessness. In despair, there can be hope. In ungratefulness, there must, eventually, be gratitude. 

This isn't just psychobabble; for many, it is their survivalist reality. It is the only way that so many bereaved have moved beyond mere suspension.  Those who allow themselves to experience gratitude are often able to transcend their former place in the world. They not only become whole again, but they have reached a threshold of completeness they would never have known would it have not been for their confinement to the gallows.

These are individuals who, despite incapacitating trauma and turmoil, manage to find gratitude for the goodness in their lives. This is not a magical moment of epiphany for many of them. Rather, it evolves over time and with intense cognitive effort.  I believe that finding gratitude- even crumbs or morsels at first- requires emotional maturation, practice, and mindfulness. 

It requires us  to first focus on the self- to take personal responsibility for our own suffering. To acknowledge it. To tell and retell our story. To know ourselves well. It requires us to acknowledge that there is healing in our suffering. It requires that we silence our minds, respect our body's response to the grief, and be gentle with ourselves. It commands patience, intentionality, and commitment to the insufferable pain that radiates from the tips of our hair to the tips of our toes...the agony that causes every cell in our bodies to ache. It requires that we reach out for help from others, sometimes strangers, and that we accept the outreached hand with grace.

Then, when we are ready, we must move beyond the self. We must see the suffering of others. We must acknowledge the other's pain sans the fear of losing or diminishing our own suffering. We must be able to sit compassionately with another, abandoning for a moment our own grief's narcissistic exigence. We must  widen our circle of compassion for all beings suffering. We must see the world through others' eyes.  

We must recognize the acts of kindness, courage, and sacrifice that others have offered along our journey, and extend that droplet of hope to another. It requires that we honor even ill-fated attempts to comfort, and that we reconsider exchanging alienation, anger, and resentment for tolerance, empathy, and acceptance. We must seek gratitude daily, even for the 'small' things in life, like a dandelion dancing on the warm breeze, shadows playing in the park, or a fiery sun setting against a mountainous silhouette- or perhaps, a simple kind word of support from a friend...

Like threads in a garment, grief runs in and out of our daily lives from the instant of Death, one moment often indistinguishable from the next for many days and months. There is a time for this. There is a time to wallow in the mud, a time to pause for the entangling. The garment is unravelling and grief has patterned your life, against your will, in an unfamiliar mosaic.  Yet, gratitude can truly help us to heal from our suffering when the time is right to reconvene our lives. 

And when that time comes, consider your complaints and revisit your expectations. Take the time to fill your heart with gratitude. You can be grateful for what you have without taking away from that which you have lost. 

So, tell someone who has helped you how grateful you are for their presence in your life. Hug someone you love and tell them three things you admire about them. Write a letter or send a card to someone who is making a difference in your community. Leave an anonymous gift for a teacher, doctor, or other "carer". Reach out to another person in mourning.  Let gratitude hang in the shadows, parallel to your grief. It is not magic, but it is transformative. 

When we allow the experience of gratitude, the heart may still be broken but the heart is also most full, most whole, and most complete. Mendel of Kotzk also said, "Where is God to be found? In the place where He is given entry".  Where is gratitude to be found? It can be found in the very place where you have also given it entry. Grief and gratitude can coexist.

I dedicate this posting to our wonderful MISS Foundation moderators, volunteers, and facilitators.  For your commitment to helping others, I am so incredibly grateful.

Death Talk: Docs dodge honest conversations

Elisabeth Kubler-Ross began this fight in the 1960's; before her death, she told me how it frustrated her that some physicians- even psychiatrists- had not yet "gotten it"-that the dreaded "D" word was still relatively unspoken in the medical community.

Indeed, it is difficult for me to imagine that this battle still continues, that it is even a controversy at all. It illuminates three things for me- 1) the ever present paternalism still alive and well in medicine, 2) the reluctance to build the types of relationships wherein honest discussions about death can take place, and 3) our ongoing circumvention of death at all- as if not speaking of it will help extend life... An important article posted today from the AP:

CHICAGO, Illinois (AP) -- One look at Eileen Mulligan lying soberly on the exam table and Dr. John Marshall knew the time for the Big Talk had arrived. Eileen Mulligan's doctor told her upfront that there are no good treatment options left to try for her cancer. He began gently. The chemotherapy is not helping. The cancer is advanced. There are no good options left to try. It would be good to look into hospice care.

"At first I was really shocked. But after, I thought it was a really good way of handling a situation like that," said Mulligan, who now is making a "bucket list" -- things to do before she dies. Top priority: getting her busy sons to come for a weekend at her Washington, D.C., home. Many people do not get such straight talk from doctors, who often think they are doing patients a favor by keeping hope alive.

New research shows they are wrong.

Only one-third of terminally ill cancer patients in a new, federally funded study said their doctors had discussed end-of-life care.

Surprisingly, patients who had these talks were no more likely to become depressed than those who did not, the study found. They were less likely to spend their final days in hospitals, tethered to machines. They avoided costly, futile care. And their loved ones were more at peace after they died.

Convinced of such benefits and that patients have a right to know, the California Assembly just passed a bill to require that health care providers give complete answers to dying patients who ask about their options. The bill now goes to the state Senate. Some doctors' groups are fighting the bill, saying it interferes with medical practice. But at an American Society of Clinical Oncology conference in Chicago earlier this month, where the federally funded study was presented, the society's president said she was upset at its finding that most doctors were not having honest talks. "That is distressing if it's true. It says we have a lot of homework to do," said Dr. Nancy Davidson, a cancer specialist at Johns Hopkins University in Baltimore.

Doctors mistakenly fear that frank conversations will harm patients, said Barbara Coombs Lee, president of the advocacy group Compassionate Choices. "Boiled down, it's 'Talking about dying will kill you,' " she said. In reality, "people crave these conversations, because without a full and candid discussion of what they're up against and what their options are, they feel abandoned and forlorn, as though they have to face this alone. No one is willing to talk about it."

The new study is the first to look at what happens to patients if they are or are not asked what kind of care they'd like to receive if they were dying, said lead researcher Dr. Alexi Wright of the Dana-Farber Cancer Institute in Boston. It involved 603 people in Massachusetts, New Hampshire, Connecticut and Texas. All had failed chemotherapy for advanced cancer and had life expectancies of less than a year. They were interviewed at the start of the study and are being followed until their deaths. Records were used to document their care.

Of the 323 who have died so far, those who had end-of-life talks were three times less likely to spend their final week in intensive care, four times less likely to be on breathing machines, and six times less likely to be resuscitated. About 7 percent of all patients in the study developed depression. Feeling nervous or worried was no more common among those who had end-of-life talks than those who did not.

That rings true, said Marshall, who is Mulligan's doctor at Georgetown University's Lombardi Comprehensive Cancer Center. Patients often are relieved, and can plan for a "good death" and make decisions, such as do-not-resuscitate orders. "It's sad, and it's not good news, but you can see the tension begin to fall" as soon as the patient and the family come to grips with a situation they may have suspected but were afraid to bring up, he said.

From an ethics point of view, "it's easy -- patients ought to know," said Dr. Anthony Lee Back of the Fred Hutchinson Cancer Center in Seattle. "Talking about prognosis is where the rubber meets the road. It's a make-or-break moment -- you earn that trust or you blow it," he told doctors at a training session at the cancer conference on how to break bad news. People react differently, though, said Dr. James Vredenburgh, a brain tumor specialist at Duke University.

"There are patients who want to talk about death and dying when I first meet them, before I ever treat them. There's other people who never will talk about it," he said. "Most patients know in their heart" that the situation is grim, "but people have an amazing capacity to deny or just keep fighting. For a majority of patients it's a relief to know and to just be able to talk about it," he said.

Sometimes it's doctors who have trouble accepting that the end is near, or think they've failed the patient unless they keep trying to beat the disease, said Dr. Otis Brawley, chief medical officer at the American Cancer Society. "I had seven patients die in one week once," Brawley said. "I actually had some personal regrets in some patients where I did not stop treatment and in retrospect, I think I should have." James Rogers, 67 of Durham, North Carolina, wants no such regrets. Diagnosed with advanced lung cancer last October, he had only one question for the doctor who recommended treatment. "I said 'Can you get rid of it?' She said 'no,' " and he decided to simply enjoy his final days with the help of the hospice staff at Duke. "I like being told what my health condition is. I don't like beating around the bush," he said. "We all have to die. I've had a very good life. Death is not something that was fearful to me."

Iterations of Freud

No one who, like me, conjures up the most evil of those half-tamed demons that inhabit the human breast, and seeks to wrestle with them, can expect to come through the struggle unscathed.  -- Sigmund Freud, Dora: An Analysis of a Case of Hysteria

Words have a magical power. They can bring either the greatest happiness or deepest despair; they can transfer knowledge from teacher to student; words enable the orator to sway his audience and dictate its decisions. Words are capable of arousing the strongest emotions and prompting all men's actions.   --Sigmund Freud, The Educator's Book 

Freud was an esoteric man, publicly vilified and maligned, and woefully misunderstood by his historic peers and subsequently in many circles of psychilluminati.   Born in Czechoslovakia in 1856,  he moved to Vienna when he was three years old.  His lived his entire life there and would have died there; but the beginning of WWII prompted his escape. He took refuge from the Nazis in 1938 in England and died the following year there.  Several years later, his sister died in a German concentration camp.

Freud was one of the intellectual elite who, by the time he finished middle school, spoke fluent Greek, Latin, German, Hebrew, French, English- and a little Italian and Spanish too. At age eight, Freud's favorite authors were Shakespeare and Goethe.  (Sidenote: It's nearly incomprehensible for me as a mother of three boys living in Westernized American culture...). In other words, from his earliest days, he was somewhat of a sociocognitive anachronism.  He was obsessive, meticulous, controlled, parsimonious, obstinate, rigid, and compulsive (SE, IX. 169). He existed in a vicissitudinous state of both credulity and skepticism. He was, indeed and in every way, extraordinary.

I have always been fascinated with Freud and other radical eccentrics and misanthropists. Like his early defectors, Jung, Adler, and Stekel, I also recognize Freud's cardinal flaw- overgeneralization and absolute determination to be unquestioningly right. I could not disagree more with his theory of mourning; that is, his idea of cathexis and decathexis- the necessity for mourners to sever bonds with their deceased in order to reinvest in living.  And, I won't recapitulate Freudian theory that has been scoured and devoured by 20th Century psychologists.  The Oedipus and Electra complexes and his idea of the death drive, and the ensuing mass hysteria around those postulations, are well-known- and still ridiculed- throughout the general public.   

Still, I believe him to be one of the greatest thinkers of the 20th Century. Freud contributed so much to what we know about the human psyche.  He taught us about neuroses and childhood development. He taught us the importance of maternal attachment and praise; and in fact, John Bowlby built much of his theoretical postulations on Freud's work.   He opened dialogue on dreams and symbology, and the unleashable power of the unconscious mind. He taught us about narcissism, melancholia, and identified what we now know today as posttraumatic stress disorder in combat soldiers during WWI (back then termed 'shell shock').  He gave us the Freudian slip and glimpses beneath the iceberg of consciousness: Freud left the world a powerful framework with which to understand ourselves- our true selves- psychoanalysis.  

One of my favorite, dark Freud books is Civilization and its Discontents. This manuscript is not for the faint-hearted. It is Freud at his most misanthropic, pessimistic-self.  The historical context of societal and personal events during the writing of the book is essential to consider: His daughter, Sophie, died in 1920. He was diagnosed, not surprisingly, with cancer in 1923, and later that year, his beloved grandson died. Then, the second world war began soon after and Jews were being slaughtered, and he began working on the epic book Civilization and its Discontents. Within two decades, he'd lived through two world wars, one in which his religious group was facing extermination; now faced his own mortality; and he lost his daughter and then his grandson to Death. Given the historical context, is it any wonder, then, this book is a literary augur of calamity?  

I believe every person should read at least two of Freud's books, if not for clinical purposes then for gain of political philosophy.  He is, after all, one of the great makers of our previous century.  And even in the darkest, dampest corners of his mind, Freud left room for the human spirit to succeed.  It's not an exaggerated or naive optimism. Rather, it requires maturation and responsibility: he calls upon people to become acquainted with themselves, to understand themselves. 

He says that knowing yourself will help both individuals and society remain open to the vast possibilities of human expression, those beyond the impulsive drives- the negatives- those beyond the failures. We need not be limited by our past; rather, we can live authentic lives when we know ourselves- when we are honest- and transform pain and aggression into beauty and peace.  

Id's a wonderful world, after all.

 

The Risk of Love

The most secure prisons are those we construct for ourselves.

Gordon Livingston, M.D.

How does one live in a world where children die? 

Living in 21st Century, relatively affluent American society we are unaccustomed to the idea that children die. Yet, there was a time, not long ago- and still true in many parts of the world, when many, many children died. Two dead children in a family of four was not the exception just 100 years ago, or more commonly five dead children in a family of ten.  But our worldview- our very expectations upon which we construct our futures- patently rejects the idea that our families can be swiftly shredded at Death's whim. Due to medical advances, sanitation improvements, and other accoutrements of modern life, most have become wholly unfamiliar with early death, both during infancy and childhood as well as early adulthood, in Western society.

In fact, many believe they can beat Death at His game. Many nonprofit organizations exist to eradicate Death. They are single-cause focused. They want to cure, prevent, heal, and prolong. All worthy causes, indeed. But Death is a formidable enemy who will not secede. We may cure cancer one day, or heal brain injuries, or prevent suicide or car crashes or stillbirth or SIDS...but Death will, for us all, come one day. We can only hope that He comes for the parents first, and then that He comes for parents at the end of their lives, and not prematurely.  We can only hope that for the rest of the world's children, too. Sadly, in a world of inequity and suffering, this is unlikely.  

That is why the MISS Foundation exists. Because since the beginning of man's time on this planet, children have died. And until man takes his final step on this earth, children will continue to die.   We can be imprisoned and paralyzed by fear, anxiety, grief, despair, and sadness. Our children's lives are certainly worthy of such psychological woes.  I think of the purgatorial state of the mother in the film "What Dreams May Come."  Her prison- one of her choosing- was painful for me to watch... it represented a familiar place to which I'd once condemned myself.  In a sense, perhaps, punishment to an austere life is the only justice a mother can give her dead child.

Perhaps not. 

Perhaps, instead, our penalty for outliving our children is the task of seeking connection in the midst of an imperfect world, reinventing ourselves in the midst of our child's ghost, rebirthing in the midst of suffering, or finding a way to love despite the pain. Love, Livingstone says, is the ultimate risk. When we cannot change the parts we wish were different, the unfairness and cruelty of life, we've only one  choice.  To live or die.  Yet, to surrender our existence would be to abandon all that is beautiful about our children who died. Indeed, he says, living after a traumatic death is both an act of will and an act of surrender. He speaks from very personal experience.

Livingstone is a bereaved parent twice. His eldest son completed at suicide, and his youngest, only 13, died of leukemia. How does one exist in a world where children die? I think, perhaps, through that for which we are willing to risk everything- love.

Primum non nocere, prosum beneficum

When my daughter died in 1994, I heard nothing from the hospital staff after our discharge. Instead, I returned to my home where grief had taken residence, and I was left alone.  No social worker or nurse attended to my needs. No pastor or clergy offered aid. No physician called to check on our family. No cards were sent from the medical staff. Nothing. Just the silence of apathy and death, now camped next to my bedstand.

In 1999, five years later, our dog, Bandit, died.  The veterinarian and his staff were gentle, kind, and empathic. They called that same day to check on us and express their sympathy.  And four days later, we received this card in the mail:

To Bandit's Family

Our thoughts are with you, 

when sometimes the hurt is too big for words. 

We are so sorry for the loss of Bandit. 

I know you loved him and that he will be missed. 

Roger William DMV and staff

I was, frankly, both awed and angered.  How is it that years earlier, I had not received this type of care and compassion upon the death of my child?  What gives?

The ethos of primum non nocere, first do no harm, has been a guiding principle of medicine since the mid-nineteenth century.   This axiom quickly becomes familiar to med school students as they endeavor toward epistemic gain and become introduced to the micro-culture of medicine.

But is a postmodern detached, passive interpretation of this canon enough? Do we stop at first, or is there an imperative to do more?And should physicians strive for better than merely doing no harm? Why not strive toward beneficence?

A recent article published in the journal Academic Medicine (Newton, Barber, Clardy, Cleveland, & O'Sullivan, 2008) titled "Is There Hardening of the Heart During Medical School? Physician-Patient Relationship"  explored vicarious empathy during medical education. 

They found that "empathy significantly decreased during medical education (P < .001), especially after the first and third years". The authors concluded that diminished vicarious or emotionally driven empathy occurs after the first year and after the third, clinical years of medical education when students “were seeing patients they had, presumably, looked forward to helping.”

Interestingly, another study conducted by Jean Decety, Professor in Psychology and Yawei Cheng of the Institute of Neuroscience found that physicians unconsciously learn to turn-off the center of the brain that initiates empathic responses. In their 2008 article,  “Expertise Modulates the Perception of Pain in Others,” published in Current Biology, they note that physicians "have learned through their training and practice to keep a detached perspective; without such a mechanism, performing their practice could be overwhelming or distressing, and as a consequence impair their ability to be of assistance to their patients”.

Based on their current and previous research, Decety and Chang affirmed that these physicians are unique: their neural circuitry, which normally registers pain when one person sees another person in pain, experiences no activity during such an exercise. The response in this circuit, which includes the anterior insula, periaqueducal gray, and anterior cingulate cortex, is automatic and likely represents evolutionary panic responses in order to respond to danger. Unlike the control group, the sample group of physicians did experience an increase in the frontal areas of the brain- the medial and superior prefrontal cortices and right tempororparietal junction, where emotions are regulated and cognitive control occurs.  This unconscious training of the brain can incite emotional detachment, which some argue helps physicians avoid their own high levels of personal distress that may incite a host of psychological problems.

But is there a middle ground wherein a physician- or a nurse, social worker, therapist or other helper- can engage in empathy while maintaing important, self-preserving boundaries?  This is an important area for further social and neuro scientific research. For example, we should explore whether or not empathic traits actually do expedite vicarious trauma or perhaps burn out.  In other words, does compassionate and empathic care, in fact, "impair [physicians'] ability to be of assistance to their patients"? We should explore the positive, insulating benefits of relational mutuality for patients, their families, and the physicians as well.  These types of studies may provide more answers to many unaddressed questions about the nature of human relationships during distress.

As a clinician who has helped bereaved parents for thirteen years, many of whom have experienced trauma beyond any normal range of experiences, I would assert that, indeed, we can engage in this way. In fact, I'd go as far as to assert that there is no other way in which to experience authentic, meaningful, and healing human interaction.  It moves beyond the acquiescence of first, do no harm and prompts an imperative to then do good.  How to reach this place is complicated and I cannot teach it in a few words electronically scribbled on these pages.  It takes willingness to learn, and requires an abandonment of academic arrogance and the assumption of humility. They are lessons hard learned. But it is what I teach because it is that in which I believe. It is what I know to be true.  

And I think it is because I do go there with people, because I have trained my brain to remain responsive to and not allow flight during those fearful times, that I have been able to listen to thousands upon thousands of stories of trauma and loss, to watch hundreds of children die in the arms of their parents. 

I have allowed the germination of those meaningful relationships, and I have tried to nurture interconnectedness, even through the vicarious pain and angst.  I am nearly certain that if I'd tried to protect myself, sequestering my heart from these experiences, and not invited those empathic relational interactions, I would have suffered from caregiver burnout long ago.  And, oh what I'd have lost would be far greater than that which I've gained.  

Ref: Academic Medicine. 83(3):244-249, March 2008.
Newton, Bruce W. PhD; Barber, Laurie MD; Clardy, James MD; Cleveland, Elton MD; O'Sullivan, Patricia EdD

Secrets and the Place for Exceptional Memories

Grief colors my world. It is the lens through which I view most everything. I was cleaning out my drawer this morning and came across a note written by a then-seven-year-old boy in love with his mother. The note read:

This is to you mom.

I love you more than life itself.

You are the best mom ever

and when I say ever
I mean ever
!!!!!!!!!!!!!!!!!!!!!!!!

Josh had written me this note, folded in into a tiny pocket that contained a photograph of us together that he'd found in an old album. Most every mother I know would save such a tender memento. Many would have a special place in their homes for such exceptional things for their children's children, so that in two decades they can narrate each treasure, reconstruct and reminisce a childhood past.

Most mothers do not know what I know. They do not know the secret.

So, I took the sweet note and put it into a large storage box, my place for exceptional memories, that holds my children's cherished nuggets. And while exploring amongst the many things in my place of memories, I realized that I saved more than the average mother. I even saved the word "love" scrawled on a tiny corner of a paper napkin, with a red, quasi-heart shape drawn by Josh at age three with a backward "L" and an "E" that resembled his age at the time. I saved every tooth. Every photograph. Every expression of love and every piece of art. I stockpile and hoard memories like a bereaved mother.

I do not save only for their future. I save also for the what ifs; that one in twenty-thousandth chance that I will lose one of my other children to death. It seems unfair to live in constant awareness of life's fragility. I wish I did not know the secret. I wish I'd never been shown. Yet, I do know. I am aware, and I cannot feign ignorance.

I know that you do not forgive yourself easily when a child dies.

I know that no alcohol, no pill, no distractions, and no book can cure the pain.

I know that children can and do die, and that Death is a cruel and unforgiving victor.

I know that there are no guarantees, and that control is an illusion.

I know that good, competent mothers sometimes lose their children, while unloving, neglectful "mothers" sometimes get to keep theirs.

I know that one day, one year, ten years, twenty years, and fifty years is never enough time with your child.

I know that there is no accepted trade, nothing you can barter, to renegotiate your child back to life, not even offering yourself instead.

I know the secret that life goes on, but not really.

So day-by-day, I seek to live in the moment. I feel compelled to save, cherish, hold, adore, and express, wanting no regrets that accompany not saying that which needed saying and not having enough memories. After all, what's a grieving mother to do with such a burdening secret, such a recondite reality? That is, allow it to help me love more profoundly and surrender to the awareness that each moment, every breath, may be the last.

Losses, Life's Many Losses

Now that we are parting

rain has returned

I want to be nothing

only the fragrance of some scattered

rose and pass like smoke

now that we are parting

the music will fall and settle

in the pages of your books

and wait to be opened

now that we are parting

my eyes follow invisible

birds across the ceiling

hands become wind

and earth turns faster

than a night ago

I leave a white cloud

in your hands

now that we are parting

I will dress in rain and

watch the warmth behind

some distant window slowly

take on your name

-Lidija Šimkutė

I found an old stack of letters a few months ago from my first love. There were about 60 letters from him- the envelopes had browned, dried like flowers left in the sun. The creases were perforations now, and thinning paper is hard to fold for the hundredth time.

It was 1984. And he loved me so. I, in return, loved him beyond my wildest imagining. We were to spend our lives together. Through a series of tragic interferences and events, he returned to his homeland, across creeks, dams, rivers, and oceans, and into another time zone. He may as well have left earth's atmosphere for an unsophisticated 18 year old girl in love. Still, I waited. My heart overflowed with hurt as I replayed his promise to return, spoken hurriedly as he boarded the flight that would carry him out of my life and into the dictatorial grip of culture and tradition.

It would be more than two years before I would see him again. To say that my heart was broken would be an understatement. He was married, and the sliding door that would be mine was decided, not by me and not by him. 

This was my very first experience with loss and resultant grief. It was grief from which I would never fully recover. Though I would go on with my life, choosing new relationships along the path, no one could replace this man with whom I'd fallen hopelessly in love years- even decades- earlier. The effects of this relationship's ending would endure far beyond the weeks, months, and years to follow. The effects would shadow me throughout my adult life.

And so this is loss. It takes many forms. Sure, losing a relationship is vastly different from losing a child to death. Yet, there still is a very real grief process that accompanies all losses. People are not replaceable with another. This is why it is important to mourn the uniqueness of the person and the relationship that is changed or lost. Within me, there will always be an 18 year old girl who lost the most precious thing in the world to her. And I will always miss him, and what we could have had together.

And within me, there will always be the mother who lost her most precious child- the fourth one- the irreplaceable, unique little girl who I will always miss, and what we should have had together.  The shadows of my grief stick like paste; and though I tried to hide from them, they only changed form with the casting of light. And so this is loss.

Indeed, the window on my horizon has taken on many names of those parted. Josephine and John, Joseph, Elisabeth, Cheyenne. And I am dressed in rain.

Mother's Day Redefined

May 11th is Mother's Day. Few people spend this day contemplating the women- the mothers- who will suffer on this day. It is a day, instead, for celebration and gratitude.

There are times in our lives, however, when we must redefine our understanding of previously held beliefs. For many, Mother's Day is such a time.

My mother died at a young age, suddenly and unexpectedly. The woman who gave me life and who would help me to discover both who I was and who I wasn't is gone from this world. I cannot offer her my gratitude this year by taking her out for brunch, showing off her grandchildren. This requires me to see myself as a daughter- and her as a mother- in a much different way than I did for 35 years. I will remember my mother and my daughter. 

Yet, the event that would really challenge the essential meaning of motherhood for me would be the death of my daughter. I experienced motherhood in an entirely different way; and since her death, have sought ways in which I can remain her mother. It is not the way I wanted to be her mom, yet, still it is mothering indeed.  I've had to supplant the normal ways in which I would have filled that role, mainly through service to others. I will remember my motherhood and daughterhood.

For some reason, it's easier for others to understand that on Mother's Day I will think of my own dead mother and miss her, honoring that relationship and mourning all that I've lost. Yet, on Mother's Day I also miss my own child, the MISSing piece of our family, and I mourn all that I've lost, while remaining incredibly grateful for all that I have.  

I've redefined motherhood to include the absence of their presence. 

This Mother's Day, I will think of them both and recognize, in my heart, that I am still both a daughter to my mother and a mother to my daughter. And, I choose to remember- to re-member- my precious girl. I will turn toward our love and the grief and bring them as a whole into my heart. 

Death, simply, is not bigger than that.

On My Terms

On My Terms

Every day he got up. 

Before sleep wore off, he was who he used to be. 

Then, as his consciousness woke, it was as if poison seeped in…

and he moved and he moved and he moved. 

But no amount of movement being enough to make up for it. 

The guilt on him, the hand of God pressing down on him saying, 

You were not there when your daughter needed you...

And as Flora twirled, other girls and women came through the field in all directions. Our heartache poured into one another 

like water from cup to cup. 

Each time I told my story, I lost a bit, the smallest drop of pain. 

It was that day I knew I wanted to tell the story of my family. 

Because horror on Earth is real and it is every day. 

It is like a flower or the sun; it cannot be contained.

Alice Sebold, The Lovely Bones

On a searing July day in 1994, it was my turn to become familiar with horror on Earth, and it became my every day reality. 

Death trespassed on my body. Just moments before I was to bring forth life, Death came into my body and without permission stole my most precious piece of my self. My beautiful girl, all 8 lbs. with long, piano fingers, ebony curls, and fat creased thighs and wrists, succumbed to that which cannot be contained. My body was ready for her arrival. My brain made space for her. She belonged there, right there, with my other three who'd arrived the same way in 1986, 1988, and 1991. The trauma of experiencing birth in such intimate proximity to death cannot be described in any language. 

It would be years before I would come to terms with all that I had lost- and gained- in particular, the newfound guilt- an appendage for my body's betrayal of maternal duty (I’m not sure, even today, that my whole being has accepted the terms of this unilateral contract).

Hurried and unknowing voices told me what I should and shouldn’t do; how to mourn and how not to mourn; when to remember and when to forget; what was good for my children and how I would surely cause them irreparable harm. My loss- my grief- was being managed by others, coerced into convivial proscriptions of comfortability.

And Death, like a neglectful parent both loved and hated, held the key to both my freedom and my imprisonment.

They told me it would be bad for my children to see her lifeless body. It would cause them grief beyond repair. How would I know it was the not-seeing that would cause so much greater harm? I’d wanted to bring her body home for a day, show her the room that was to hold her cradle. Let her witness all the hours I’d meticulously spent cutting brown bear borders against the cornflower blue walls, until my fingertips blistered. They said I couldn’t, I shouldn't, and I didn't. 

I’d wanted to cremate her long ago, but I was told it “wouldn’t be good” for me.

It would be nearly 14 years before I would have the chance to right many wrongs. On April 11, 2008, I had the body of my child exhumed from the red earth. I watched from a respectful distance as my brain rewound the tape that played endlessly through the years. My neurons fired with fresh but familiar pain. On this day, I would take control back of my own experience of loss. And for one week, I had the my chance to experience my own trauma and regrief on my own terms.

It’s been much more difficult than I could have imagined it would be, the innards of my grief raw and exposed again to the light. But it was my way, with no one telling me I couldn’t rock her in unison with the neighbor's Cottonwood tree that swung in the wind. No one telling me that a one-way conversation with my dead child's own lovely bones would be plain crazy. No one telling me that I should scurry my children out the door, protect them from the pains of loving, shelter them from grief.  I held power over my experiences this time. 

And so I was able to burn my sage, and follow my mind down the rabbit hole. I took my time, fell asleep with my hand on the velvet pink box, where I'd earlier tied purple bows in knots to abate the morbid inquisitions of others, and myself.  And I captured my first photograph of all five children gathered together, four of whom emerged from my womb safely and one who would never smell the lavender or rosemary in our yard. Still, there was no one shielding me from my own willing, and even unwilling, suffering.  And for this, I have much for which to be grateful. 

Life is painful. Yes, it’s also joyful at times; but grief comes with it. It is unavoidable. The love you feel for someone is commensurate with the pain you will suffer when that person has died. And my suffering is, like the love I have for my dead child, inexhaustible and sempiternal. I’ve learned that suffering is not so bad, so long as its done in my own time, on my own terms.