Beware of Strangers

To love means to open ourselves to the negative as well as the positive-- to grief, sorrow, and disappointment as well as to joy, fulfillment, and thus an intensity of consciousness that before we did not know was possible.

Rollo May

Throughout human history, there has been a tendency to fear the unknown. On a macro level, this fear has fueled oppression such as religious intolerance where, for example, during the Dark Ages, countless women were drowned or burned at the state as "witches." Fear of the unknown has incited wars between tribes, hatred between countries, and violence between groups. 

But fear is not merely a societal sarcoma that may manifest in subjugation and massacre; rather, evolutionarily speaking, it is a the most primal and visceral- and necessary- of human emotions. Fear keeps us safe from predators and protects us from endangering our lives. 

If there is a knock on the door, I ask, "Who is it?" in an attempt to familiarize myself so that I feel secure, to ameliorate my fears and keep myself safe from potential harm. The focus of some neophobias is on people, while others fear new experiences, places, or even driving a different path to work. But fear can also hinder social creatures like humans. Fearing people can incite stereotyping and prejudice. The fear of traveling to new places can stunt ethnological appreciation and wisdom. Even driving the same path to the workplace everyday can be inhibitive: What more interesting landmarks might you notice by taking a different path? So, what do we miss by our fears and subsequent evasions of the unfamililar?  

Grief was, at one time, an unfamiliar stranger. My primal response to him was terror and crippling fear. He controlled my thoughts, and I saw the world through his eyes, not my own. Panicked, I could not look this intruder in the eyes. I was paralyzed. I was certain that if my gaze met his, the abyss would, as Nietzsche said, stare back at me and overtake me. Like an ominous stranger at my door, I did not want to invite grief inside my home. I wanted to leave him out in the cold darkness of night where he belonged. 

What I didn't realize then was that this stranger was a part of me now, inexplicably linked by experience. By leaving him outside in the darkness, he became the monster in my dark closet that would haunt me when my mind was still. And unwittingly, I made a decision in 1995 to surrender to that which I most feared. Part of that psychological relinquishment required that I accept grief out of the darkness and into my home.  We sat down together and sipped tea. We walked together. We sat on the back swing and watched the sunset.  I came to know and understand this part of me that felt so foreign, and I began to slowly see the value in the unfamiliar that he brought into my life.  He became more predictable and I feared him less. His roar softened and he did not need to yell for my attention any longer. We gazed into one another's eyes and I survived the facing. 

I can honestly say that now grief, mostly, is my friend and an accepted, not feared, part of me. Now, I trust him to lead me into those places where, as May said, I can truly experience the pain, believing that beauty will soon follow, and knowing that I will experience the intensity of consciousness that far transcends the merely ordinary.

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."

Sagan: Chaos and Order

You must have chaos within you 

in order to give birth 

to a dancing star.

Frederich Nietzsche

The universe, filled with nebulae, black holes, and the mysteries of time and space, was begotten from atomic chaos. Billions of years ago, all space, matter, and energy in our known universe was contained in a "volume less than one-trillionth the size of a needle point" or about the size of a single atom (deGrasse Tyson, 2004). This preplanetary pandemonium would impregnate our mother in this massive cosmos - Earth's solar system. Out of this frenetic and violent chaos, would come life, order, and beauty. These are key principles of physics and astrophysics: supernovas that outshine entire galaxies are born from massive stellar explosions, their remnants capable of forming ominous black holes or neutron stars and pulsars that are up to eight times larger than our sun; and the untempered chaos of a seemingly libertine universe gives rise to the magnificence of the cosmos.

On July 27, 1994, my own universe imploded when my baby died. I've found myself present with sadness and absent words this July, as I have been during the past 14 voyages of the Earth about its star between June and August. My grief feels like the fledgling cosmos. Chaotic, disordered, confused, violently out of control. Still, I take comfort in reflecting on the genesis of our macrocosm. 

Grief, like our universe, is often indescribable; it is elusive, creviced, and wordless. There exist within it many great mysteries, places unexplored and unknowable given the ephemerality of time. One pithy moment of grief gives rise to a new precipice, like a pulsar in my own universe of loss. I'm sitting quietly with this idea, and I'm reminded of Nietzsche's notion that order will come of the chaos, meaning of the confusion, and that I can, indeed, have my dancing star amidst it all.  Caret initio et fine.

RIP Carl...

November 9, 1934   to   December 20, 1996

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.

Synchronicity

“So when you are listening to somebody, completely, attentively, then you are listening not only to the words, but also to the feeling of what is being conveyed, 

to the whole of it,  not part of it.”

Jiddu Krishnamurti

I met a fascinating man today who approached me, interested in my work with the bereaved. It's amazing how, when you meet a kindred soul, you can listen and exchange for hours upon hours and never tire of the conversation because it is intentional, meaningful, and consequential. 

We spoke about life and loss, trauma and tribulation, reality and relationships, loving and listening.

Listen. Listen. Listen.  

Repeat the word, twenty times. Softer. Listen, listen, listen.

Listening to the other can have powerfully therapeutic effects. Holding a space for the other through silence.  Being fully present, all senses focused on the other, their moment of disclosure- be it filled with suffering, sorrow, despair, or joy- being that which Pine (1985) calls a prepared explorer into another person's life.  Gadamer says that the important thing is to "be aware of one's own bias so that the text may present itself in all its newness and assert its own truth."

Reik (1954) discussed listening with the "third ear."  This is psychoanalytic listening intent on intuition. It requires that full experience of presence with the other.  He says, "...in order to comprehend the unconscious of another, we must, at least for a moment, change ourselves into and become that person.  We only comprehend the spirit whom we resemble."  I might call this true, empathic connectedness.  Freud calls it "listening with evenly suspended attention."  The results can be astonishing- acknowledgement and validation of a person and their place in the world. Thank you, David.

What greater gift can you offer to another than intentionality, consequentiality, and meaning?

And I submit this: Offer this gift, also, to yourself. Listen to the thoughts and the emotions and the memories and the pain and the struggles and the fears and the sounds and the beauty of you.  

Do what you must do to become who you must become.

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.

Getting Through the Human Experience

To be alone is one of the greatest evils.

William James

Psychopharmaceuticals are plentiful here in the United States as a way to help individuals cope with  psychic angst.  Pharmaceuticals are marketed as a means to help anyone who is bereft with depression, PTSD, personality disorders, anxiety, PMS, menopause, postpartum-related depression, mood disorders, dysthymic conditions, and even grief.  

A high number of bereaved parents, in my experience mostly mothers, are also prescribed anti-depressants. For some, these pharmaceutical remedies can bring equilibrium to a person who is fraught with debilitating mental illnesses.  Yet, are we pathologizing normal, albeit painful, human experiences of suffering?

Indeed for others, according to Dr. Elio Frattaroli and psychiatrists critical of the overuse of prescriptions, SSRIs are being used as a shortcut to healing, the McDonald's treatment plan of the 21st Century- the comfortable numbing of a society.  We are afraid to feel suffering.  We are uncertain of our own strengths to cope with loss. We do not know how much we can- and should- rely on one another to help us through the human experience.

Interestingly, while SSRIs can help some selective patients with legitimate mental disorders, there are also long-lasting effects of SSRI use. Researchers at the University of Ottawa have discovered a correlation between stillbirth and other negative birth outcomes and SSRIs.   While other studies have demonstrated inefficacy of some SSRIs, even in the case of the severely depressed wherein SSRIs were no more efficacious than a placebo. In some cases, it's worse than we realize. SSRIs were identified to increase violent thoughts toward self or others, including suicidal thoughts. The FDA has warned of these dangers at least twice; yet so many people remain enslaved in a cycle of medication and remedication.

I am not an expert in the use of psychopharmaceuticals for the severely depressed.  

I do, however, know that there are voluminous studies on the benefits of human connectedness, social support, and compassionate others.  Being connected with and supported by others helps women have healthier babies with higher Apgar scores. It helps women cope with the stress and angst of breast cancer. It reduces the effects of postpartum depression.  It helps the homeless and mentally ill.  It even helps accelerate recovery from a myocardial infarction (heart attack).

We are a society of aloneness, a society afraid of really experiencing our own emotions and the feelings of others. Many are emotionally bankrupt, while others are depleted of the most basic of human empathy. We are rushed, hurried, and harried. We do not have time for pause, or reflection, or grief- we have not scheduled suffering into our calendars. Our lives are consumed and constricted by things that are not real- Hollywood gossip, Blackberries and Palm Pilots, parties, Prada shoes, and consumerism. We are so diverted from what really matters that we hardly recognize that which is real- even real relationships. So few of us really have time for authentic relationships- the types of friendships in which we can entrust our pain and suffering. And it takes a tremendous amount of psychic energy to maintain the fraudulence of empty lives.  Is it any wonder so many in Western society face the types of existential crises that cry out for meaning and purpose and connection?

There is no substitute for human relationships. In the absence of meaningful connections to others, we will not survive as a species nor as individuals. We need one another to help us through suffering. We need guidance through the human experience. The answers do not lie in a bottle or in a pill or in distractions or in diversions. Our salvation from suffering, what will save us from the darkness, is the hope, love, empathy, and compassion we offer and receive from one another. It is the only way through the human experience.

Have you come to that Red Sea place in your life 

where there is no way out but through?

Merritt Malloy

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

Kaethe Kollwitz: Peace is what she awaited

My favorite artist is Kaethe Kollwitz. I will never forget the first moment I saw her work. I felt something inside me stir. It was a connection to the abyss, to the darkness of grief- I knew she had seen something that I had also seen.

Born in East Prussia, she married a Berlinese physician and went on to have children, one of whom would die in WWI. It's apparent that grief also colored her world. Kollwitz birthed art of the soul, from the depths of places so frightening that few dare allow themselves to really experience it.  She used Freud's idea of sublimated grief. And not surprisingly because of its evocative nature, her art was banned by Hitler for its pacifistic theme; no doubt remnants of a bereaved mother on a mission for some peace.

Look at her work. I mean, really look at it. Silence your mind and see, feel, hear. Use all your senses. It's the most powerful, painful, and poignant art I've ever experienced.

She clearly knew the secret too.

She wrote:

[I] made a drawing: the mother letting her dead son
slide into her arms.
I might make a hundred such drawings
and yet I do not get any closer to him. I am seeking him.
As if I had to find him in my work.
And yet everything I do is so childishly foolish and inadequate...
I am shattered, weakened, drained by tears.
I am like the writer in Thomas Mann:
he can only write, but has not sufficient strength to live what he has written...
Yet new flowers have grown up which would not have grown
without the tears shed this year.
There is in this a little of what Goethe says in Tasso:

Men do not know the souls of one another.
Only the galley slaves know one another,
who side by side are chained, and gasp for breath.

Her writing, like her art, seared through my consciousness. Kollwitz saw suffering everywhere around her. She captured it in her art. She expressed it with her words. She was, perhaps, one of the most powerful women of her time. Truly, she was enslaved by her grief; yet, she shared her soul in such a profound way that it has reached through time and generations, touching those living in a very different world, that really has changed very little in that love and loss are timeless and unconstrainable. And in that way, death still taunts us, and I suppose it always will.

Kollwitz died on April 22, 1945. Those around her said she'd been dreaming of death during her last days; she welcomed it. Peace, rest at last, is "what she longed for and awaited".

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.

The Firing

Caught between night and day

sun and moon

oceans and sky

caught between check in and departure

letters and language

conviction and contrition

In the liminal space of nothingness

is where grief lives

Until I give it language

welcome it into my space of somethingness

Form it, like soft, pallid clay,

between my fingers

and then fire it in a kiln

hot enough to turn flesh into ashes

and oxides strong enough

to shatter it when dropped

I hold it tightly

mix powdered paints with my tears

and I give it color

I do it in my time
And in my way
You do it in your time
And in your way

This is grief

~J. Cacciatore



A powerful piece of art...

Life before death is a sombre series of portraits taken of people before and after they had died is a challenging and poignant study.

The work by German photographer Walter Schels and his partner Beate Lakotta, who recorded interviews with the subjects in their final days, reveals much about dying - and living.

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.

(Wo)Man's Search for Meaning: The Existential Crisis

"Science may have found a cure for most evils; 

but it has found no remedy 

for the worst of them all - 

the apathy of human beings."

Helen Keller 

I presented on traumatic loss at a community forum today.   We began to discuss the ways that the MISS Foundation helps families cope after the death of a child.  As I inevitably do, I reflected on the work of Viktor Frankl.  

It's difficult to discuss resiliency and meaning making in absentia Frankl.  His book Man's Search for Meaning has been a constant companion throughout my own grief experience, and I have both a home copy and office copy.  The pages are weary from too much handling, and the edges are tinged with age; still, this worn out book continues to teach me so much about transcending loss and seeing others' pain.

Frankl says that there exists three principal ways in which mankind can find meaning in life: by what we give to the world in terms of our creations;  by what we take from the world in terms of meaningful encounters with others; and finally from suffering. That is, the ways in which we confront a fate that we cannot change. 

Frankl's experiences during the Nazi regime helped provide the foundation for an innovative intervention in psychotherapy called logotherapy.  Logotherapy, like Adlerian psychology, asks the patient to, when ready, view their life in different ways, requiring personal responsibility for understanding and making meaning of loss. Frankl encourages sufferers to become seekers- seekers toward the will for meaning.

According to Frankl, existential distress is inevitable as part of the human condition. It is not neurosis or mental illness; rather it is an indication of our humanity and our desire to seek meaning. He believed that we each have free will to decide: What will I do? Will I suffer in isolation or will I invite connection to and compassion from others? Will I remain silent or will I use my voice to change the world? Will I be a seeker of truth or will I accept what is told to me? Will I use my grief to discover meaning or will I acquiesce to apathy? Will I succumb to the pain or will I decide seek the purposeful life?  Will this tragedy destroy me or will it help me to transcend my place in the world?

Those are, indeed, existential questions that warrant our seeking...

People Green

The current political current has turned green: Attention has turned toward Mother Earth, taking care of the planet- it's what I've always thought of as walking gently on our planet.

I've been a gentle walker since I can remember. When I was in the 6th grade, I went house-to-house garnering signatures for a Save the Whales campaign. I wrote letters to the-then-President Jimmy Carter about the need to recycle waste.  I refused to eat animals or kill bugs (see the below ladybug blog).  Back then, it wasn't vogue, and they didn't call it being green. They had other, less prepossessing, names for people who held those values.  

Today, many more people and institutions have gone green. We're realizing the impact that human beings have on our environment, from factory farming to the massively unethical corporatization of food to the decimation of the rain forests. Even churches have jumped on board the green wagon.  This is such an important time in history for people-- time to connect with our Mother Earth-- time to take care of this beautiful planet our children's children will inherit from us. Time to walk gently on this planet. It's long overdue.

In a society of consumerism and selfish indulgences, I was thinking how, as our Green IQ rises in society, we can translate that over to being people green. Being earth-friendly is necessary: But how do we walk gently with others? How do we see ourselves in the world in relationship with others.  Our People IQ suffers a lot in the West. 

I see this particularly with the bereaved. One mother who lost her son to suicide began telling people he died in a car crash. Why? Because others flooded her with painful remarks, assigning guilt to her as a mother and excusing his death because it was perceived as self-inflicted. I see this when a young baby dies and someone responds recklessly with, "At least you're young. You can have another", as if children are interchangeable and replaceable. I even see it in day-to-day relationships when one person's feelings or opinions are rejected by another, rather than respected.

What brought our society around to an increased sensitivity to the environment is an awareness about the earth and it's vulnerability.  Awareness triggers mindfulness. When we are mindful we are in the moment. Really in the moment. Aware of ourselves, our surroundings, our actions and inactions, and mostly our effects on our surroundings. Other human beings are a part of those surroundings. Are human beings not also worthy of this mindfulness? Should we not also be mindful how what we say and do- how we treat others- affects them?

Mindful living with one another may help improve our relationships, even those transitory in nature. Even the way we interact with the grocery clerk or a fellow driver can have a lasting effect- it's Physics 101- every action has an effect. Will the effect I have on both the earth and those with whom I share it be one worthy of pride or of shame?  Imagine if, in every interaction we considered this...what would the world look like?

Really, it begins with paying attention. How are you in this world? Once you recognize yourself in this world, see yourself for who you are, actions can then follow. It's the power of presence, and it benefits both nature and humanity. While for me, it can be a challenge to really live this mantra each day, I try to stay in the moment and value every interaction, both with nature and with human beings. It's something for which I try to remain mindful, each and every day. 

Turn your attention toward Mother Earth and walk gently on her. She is worthy. 

And also, turn your attention toward your fellow humans and walk gently with them. They, too, are worthy.

Be gentle and not cruel.

Embrace humility more than arrogance.

Thank others more than you accept thanks.

Feel compassion more than apathy.

See what others ignore.

Hold others close more than you push them aside.

Learn more than you teach.

Be present more than absent.

Give more than you take.

-Joanne Cacciatore

So, mindfulness will not conflict with any beliefs or traditions — religious or for that matter scientific — nor is it trying to sell you anything, especially not a new belief system or ideology. It is simply a practical way to be more in touch with the fullness of your being through a systematic process of self-observation, self-inquiry, and mindful action. There is nothing cold, analytical, or unfeeling about it. The overall tenor of mindfulness is gentle, appreciative, and nurturing. Another way to think of it would be “heartfulness.”

— Wherever You Go, There You Are

Seeking the sesame seed

Grief must certainly be the most narcissistic of all human emotions.  In the midst of such intense suffering, no one else could possibly feel the same degree of pain for how would they survive it? Sadly, even within the bereavement community, there exists this tendency-- the grief olympics-- as if one child's death is worthy of a gold medal of grieving while another merely a bronze. Ah, grief is, indeed, subjectively experienced.

Tibetans practice tonglen- tonglen is the act of exchanging the self with the other. This practice is intended to help people abandon narcissism and focus on the struggles and sufferings of others.

There is a famous Tibetan myth about a woman who encounters Buddha after the death of her only son. Carrying his dead body around unable to relinquish him, she approaches the Buddha seeking a miracle: restore his life so she can truly live again. Buddha agrees. But first, she must bring him  a sesame seed from the home of a family who had not been touched by the death of a child. Relieved, she sought the seed, knocking frantically from house-to-house. Not a single door upon which she knocked was free of the same suffering she was enduring. In her search to bring life to her own son and ameliorate her angst, she witnessed the pain of others, suffering amidst her own suffering. And she finally saw and smelled and heard and felt and tasted and touched the grief of others.

Our own grief can suffocate our senses, the very senses that would grant us deep compassion for others.  Empathy requires us to stand outside our own grief and recognize pain in the lives of others. When we are able to truly do that- to reach beyond our own boundaries of loss, our hearts become bigger, and we are able to find healing in our connection to and concern for others.  

It is my hope that in my own quest for the home free of the sesame seed, my compassion for others will continue to grow. 

(Dallas, I hold you and your mother in my heart...)

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.

The Bionic Woman of Grief

I'm often asked how long it takes before the grief subsides or recovery takes place. The inquisitors are often newly bereaved parents or those who deeply care for them, wishing things to be as they were before the child died.

This came up today on the MISS Foundation forums- our online support groups. Often, in the midst of intense suffering, it is impossible to imagine that this pain will ever end, that life can ever be normal, that the tears will run dry. Some say it is time that heals. Time allows necessary space, a retreat, from that despair of early grief. But I, as usual, see it differently.

My experience, including the most recent emotional upheaval of the past few weeks, has taught me that, for me- and remember that everyone is different, the pain has not weakened. My grief has not been assuaged. I am still grieving deeply, like I was nearly 14 years ago, for my beloved little girl.  

But, I believe that I have become stronger. 

That is Chey's gift to me. She has strengthened me as a woman, mother, friend, and human being. Slowly at first, but over time, my grief muscles, started to build. Like a new work out routine, my muscles hurt at first, burned with pain, objecting to the new weight I had to carry. But over time, I became stronger and stronger, eventually withstanding weight (obstacles, challenges, and other grief) in my life that she helped prepare me to carry. I prefer that way. I become stronger rather than to merely have the grief become weaker. In this algorithm, there is actually gain, not loss. 

I would, of course, give back all my superhuman strength to have her back. But I am more whole and more happy today than I would have been without her in my life.

No, it does not always hurt like this. 

It is not how much time has passed, though, that counts. It's what you do with that time.

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.