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.

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.

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

Doka's idea of disenfranchisement

"Lives unworthy of life."

Nazi slogan 

while murdering 

Romanian gypsies

Language is a powerful predictor of outcomes. The ways in which we speak of an event or a person or a group of others reflects societal feelings and beliefs.  Words dictate worthiness or unworthiness; they value and devalue.  

At a macro level, language labels have been used throughout history to isolate, marginalize, and endanger. They have been villainously used to justify the burning of countless women as witches at the stake and conduct unethical medical research on the mentally retarded. Language has been used to justify genocide, infanticide, and eldercide.   The old adage 'sticks and stones may break my bones but...' could not be more false.  Language can be used in a way that threatens the lives of millions. It can also be used to persecute just one person, sentencing her to a life of loneliness and despair.

On a micro level, society foists labels on us all.   Whether or not we are slapped with a label that will cause us to be hated or targeted by others is not always predictable in a society.   In Western culture, our use of language results in less obviously draconic outcomes for those individuals who are not of the assigned norm. Still, this social sequestration and stigmatization exists, from school playgrounds to corporate America.  It even exists within the world of the bereaved.

Ken Doka is known for his work on disenfrachised losses.  These are losses deemed by society as unworthy of grief, or those that are somehow justified by the relative actions or inactions of a person.   Suicide is one type of disenfranchised loss. Others may view the death of a 21-year-old to suicide as somehow less worthy of public sympathy because of the implications of self-infliction.  Another disenfrachised loss includes deaths of young children deemed preventable.  For example, if a two-year-old drowns under the watch of his father,  others may (cruelly) assign blame to him, offering less sympathy as passive punishment for his perceived neglect. Stillbirth, called the invisible or silent death, is yet another disenfranchised loss, as people often categorize this tragedy as unworthy of the same degree of grief responses as the death "of a real child," while mistakenly believing that a parent's love is commensurate with a child's age. The death of a developmentally challenged child will also bring disenfrachisement, as others wrongfully believe that the parents are "better off", no longer sacrificing their could-be-life of leisure to care for a handicapped child.

Mostly, these labels we assign- self-inflicted, preventable, silent, handicapped- come from a place of sheer ignorance, misinformation, and, in some cases, fear.  Unfortunately, people suffer when they are marginalized; they suffer far beyond just their loss. They suffer as a result of social outcasting, and this leper-effect has dire consequences for individuals, families, and society.

William James said that to be alone is one of the greatest evils for a human being.  Being targeted by others as unworthy- whether it is because of the color of our skin, our religious beliefs, the clothes we wear, our sexuality, or our experiences of grief-  does not only affect the person or group being targeted.  When we act against another, we act against ourselves. When we disregard another, we disregard ourselves. Compassion for all. Kindness to everyone. In it's best state, language should express love, acceptance, and tolerance, not hate and rejection.

"Man did not weave the web of life - he is merely a strand in it.

Whatever he does to the web, he does to himself."

Chief Seattle, 1854

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

Love and Despair

In the abyss 

I saw how love held bound

Into one volume all the lives whose flight

Is scattered through the universe around;

How substance, accident, and mode unite,

Fused, so to speak, together in such wise

That this I tell is one simple light.

-Dante, from the Divine Comedy

Love, or what Bowlby would call attachment, is a phenomenon unique to humans. Or is it? There is neuroscientific evidence to demonstrate that animals display some type of attachment behaviors, most often observed between mothers and their offspring, in the animal kingdom.

And where there is love, there is grief.

Many animals, from cows to dogs to baboons, exhibit fierce grief responses when separated from their mothers. They first enter a phase of protest, pacing back-and-forth, searching and yearning for the object of their affection.  Some mothers, in response to the separation from their babies, begin self-harming behaviors, such as chewing their own limbs or intentionally injuring themselves.  A puppy separated from his mother will "let out a piteous whine, high-pitched and grating as every aspect of his behavior broadcasts his distress" (Lewis & Amini, 2000).   This behavior is even observed in rats.  

Mammalian protests in the animal kingdom mirror human physiologic responses to loss. During protest,  hearts palpate, catecholamines and cortisol flourish, and the body is on high alert and arousal.  High levels of chronic cortisol, the stress hormone, can compromise the immune system, interrupting important processes for the body. In sum, intense disequilibrium to the homeostatic condition can occur- very dangerous, not just psychologically, but biologically too.

This is the state of despair.  The anchored weight of grief turned inward. Apathy, lack of focus, anhedonism, bleakness...hopeless and helpless...alone in the world.   

If separating animals from their offspring can cause disruption, just imagine- in the human relationship- the depth of emotional responses to such separation. The architecture of attachment is complex, particularly the attachment between a human mother and her child. Woven into the relationship are generations of evolutionary adaptations tailor-suited to accommodate the unique relationship that will require bonding like no other relationship on the planet. What happens when that bond is prematurely broken? Despair. A state of despair.

Yet, human beings also have the capacity to help one another. Studies suggest that connectedness with like others has powerful effects on the brain- mainly, the limbic system- as well as our experiences of loss. Being helped by and helping others is a powerful healer. No, it isn't magic- there is no panacea- no voodoo that can cure a mother's grieving heart. But both social support and social outreach have powerful effects on a person.  

The MISS Foundation  provides a safe place for grieving families in despair.  It's a place to first find help, then later to provide hope to another. Family and friends- communities- should also strive to provide a safety net to help. Something so unspeakable- something so tragic- should never be endured alone.

Just as despair can come to one only from other human beings, 

hope, too, can be given to one only by other human beings.

- Elie Wiesel

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...)