Thursday, May 29, 2008

Barefoot walkabout

Today was glorious.  I woke up to perfect Sedona weather, the sun raying, birds singing, and Brewer Trail beckoning. Ingrid and I started up the trail with another friend.

Brewer Trail leads to a special place I call big rock, one of the best panoramics in town, and is about two miles straight toward the big sky.  We met a Native American man at the top of big rock, and a few brave meditative types. I wondered how many relationships healed there, and how many ideas were born there, how much reverie and introspect were discovered on this big, red rock. I wondered how many feet of different lands once stood there, and how many ancient, indigenous voices had spoken there. It's a holy place, that big rock.  The journey to big rock was filled with friendly discussions with Ingrid about life, and men, and work, and aspirations, and grief, and hope, and disappointments.

The journey back down big rock would be very different than the journey toward big rock. While I was on standing big rock, overlooking the herculean geological majesty of Sedona, I experienced a moment of perspicuity.  I decided I would walk all the way down the mountain barefoot on the rocky trail, my feet touching the ground.  

I climbed down big rock barefooted, and I felt different immediately. The direct contact from my skin to the sharp edges of the rocks and earth sent stinging sensations to my brain. Tiny rocks that had just gone unnoticed under my feet now pierced my soles, and I found myself navigating the trail with greater mindfulness of every step. I found myself in the moment, truly in each moment, not deviating from planning the next step. I had to avoid stepping on yet more cactus needles or, worse, into a hungry ant hill. "Ouch, ouch, ouch, ouch, OUCHHHH!"

For nearly two miles, I walked, and walked, and walked, feet to the burning earth, feeling every sensation. It was a ritualistic exercise in mindfulness and focus, my barefoot walkabout from Sedona's big rock.

It could have been just an impulsive oddity in which I'd chosen to engage. I could have missed the lesson of this walkabout. But I learned something from my trek down the mountain. I learned that I am stronger and more tenacious than I thought, and I that I can tolerate discomfort in exchange for the promise of learning. It affirmed that mindfulness is an important part of walking through life- awareness of surroundings and respect for the moment. I learned that I can navigate pain but not avoid it. I can adjust for rocks in the trail, and I can adjust for the barriers in life but that they are there, unavoidably, and I will face them. 

This impulsive ritual felt good- even through the pain- and I was glad to have taken something profound away from my hike. So I plan to continue the barefoot walkabout when I want to practice mindfulness. The soles of my feet will surely callus over time, but not before being sore and blistered during the process. I cannot reach the lesson without first having accepted the pain. Ah, such is life.

Monday, May 26, 2008

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

Friday, May 23, 2008

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

Wednesday, May 21, 2008

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".

Sunday, May 18, 2008

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

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.

Wednesday, May 14, 2008

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.

Sunday, May 11, 2008

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.

Wednesday, May 7, 2008

(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...

Tuesday, May 6, 2008

Elisabeth: My friend, mentor, and hero

Photo by Ken Ross

On August 24, 2004, my dear friend, Elisabeth Kubler-Ross, died. I used to spend Mother's Days with her on occasion because she was such an important woman in my life. This year, on Mother's Day, I will remember her, honor her, and mourn her absence in my life. Here is the eulogy I gave at her funeral on that hot summer day...

“There is within each of us a potential for goodness 
beyond our imagining; 
for giving which seeks no reward; 
for listening without judgment; 
for loving unconditionally.

Indeed, Elisabeth is all about unconditional love.

We are here to honor the life of Dr. Elisabeth Kubler-Ross. My name is Joanne Cacciatore. Like so many of you, I love Elisabeth. Before I begin my tribute to this amazing woman, I’d like to offer my deepest gratitude to her family, especially Ken and Barbara, and Manny wherever you are, for so generously sharing Elisabeth with the world for so many years. Thank you- thank you for supporting her as she answered to her higher calling.

Elisabeth had many gifts. While, reticence was not one of them, she was a true revolutionary, light years ahead of her time. She was generous and genuine, innately courageous and steadfast. Often- yes- stubborn, yet, she was sensitive, comforting, and compassionate with others. She could smell phony-baloneys from a mile away and wasn’t afraid to tell them so. Elisabeth was the epitome of devotion and she never wavered. She insisted on moral rightness and wasn’t afraid to speak her mind, even if others disagreed. She welcomed challenges, even battles, for she knew that in order to elicit transformation in the world, she would need to defy the mold of traditional norms and values. 

She loved the simple things in life: spending time with her family and friends, Swiss chocolate, Mickey Mouse ears, and coyotes- English breakfast tea and daisies, foreign films, ET, and gossip magazines. Elisabeth taught us that to truly understand and embrace the mystery we call death, we must first truly understand and embrace life.

Serendipity brought Elisabeth into my life. In 1994, after the sudden death of my fourth child, Cheyenne, I was destitute. Thoughts of ending my own life visited daily and I began to wonder about my purpose. A concerned neighbor bought a book written by a trailblazing author- Elisabeth Kubler-Ross. The book, On Children and Death, contained secret truths that gave life to the light of hope- a once extinguished flame flickered in my heart and I knew that one day, I would find my purpose. Elisabeth’s inspiration gave birth to my purpose and thus, the MISS Foundation came to be, an international nonprofit organization I founded in 1996 that provides aid, support, and advocacy for grieving families after the death of a child. Today, the foundation has grown to more than 70 chapters and tens of thousands of members around the world, and so, the flicker of Elisabeth’s candle has, again, lit countless other candles from Brisbane to Barcelona, from Rome to Riyadh.

A few years after I started the foundation, I had the privilege to meet the woman who saved me from the darkness of despair. I planned on being at her home for an hour. Five and a half hours later, I left, feeling as if I’d been in the presence of the most beautiful mentor and woman that I’d ever known. Yet, she was more than that to me. Elisabeth was my friend. She shared her feelings and listened to mine. She was playful and silly, one time engaging in a tea-spitting contest with me- in which, by the way, I was not the victor. She loved an attractive man with spunk (and I will say that she often had impeccable taste). Once, over dinner and popcorn, we were watching the French film, Chocolat’, when Elisabeth commented that if she were just a few years younger, Johnny Depp would be in serious danger (I was afraid for him…). I looked at her, rather surprised, and she said indignantly, “I’m not dead yet.”

She demonstrated gracious gratitude in receiving and endless benevolence in giving. Elisabeth taught me to complain less and do more. On one occasion, I was particularly frustrated by a research study that came out of the U.K. After an hour or so of listening to my whining and droning, she said, “Big deal. They’re being idiots…stop talking about it and go and do something about it.” And so I did.

There were even times when I wanted to give up this work, disheartened by the never-ending sadness of child death. Elisabeth gently reminded me that I hadn’t chosen this course. This course had, in fact, chosen me. “Continue, Joanne,” she said. “You have to continue.”

On July 24, 2004, I had a dream that Elisabeth died. In my dream, I was sobbing and mourning, feeling desperate to have my friend back. She appeared to me, surprised by my sadness. She told me to stop crying and assured me that she was fine. Then she told me not to worry, well-aware of my enduring tug-of-war with faith- she said reassuringly, “I’ll see you again one day.”

When I visited Elisabeth the next day, I told her that I dreamt about her the previous night. She asked, “Was it a good dream?” I replied hesitantly, “Well. Not really.” She asked further, “Did I die?” “Yes,” I said, looking down. Elisabeth told me that she was waiting for death to come so she could do all the things that her broken body could no longer do. She assured me that when she died, she could help me more with my work from the other side than she could here. I walked away from our conversation that day knowing that when the time came, it would be very hard to say goodbye- yet, I realized that she would never really leave any of us- her work would never end. 

Indeed, now, Elisabeth is busy guiding and inspiring us all- dancing and singing and playing, surrounded by her stars, amongst the galaxies. And her legacy lives on. Tell your children, grandchildren, and great-grandchildren about this amazing woman.

So while I will miss her physical presence in my life every day, I am so thankful for every moment I spent with Elisabeth. When you leave these services, keep her memory close to your heart. Consider her timeless words, “Dying is nothing to fear. It can be the most wonderful experience of your life. It all depends on how you have lived.” So live your lives well. Remember the time you had with her, honor her path, and hear her voice urging you to do what is right and just. Respond to her calling. Let her intrepid flame continue to flicker in the world through your own good works.

Margaret Mead said, “Never doubt that a small group of committed citizens can change the world. Indeed, it’s the only thing that ever has.” I say that one person alone can change the world for generations to come- and that flame of hope and compassion and dignity and solace and self-less humanity will live for centuries within innumerable hearts. One person alone can illuminate the flame of goodness beyond imagination and unconditional love in the world.

Her name is Elisabeth.

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

Friday, May 2, 2008

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


The soul still sings in the darkness telling of the beauty she found there; and daring us not to think that because she passed through such tortures of anguish, doubt, dread, and horror, as has been said, she ran any the more danger of being lost in the night. Nay, in the darkness did she, rather, find herself.

--St. John, Dark Night of the Soul

Follow me on Facebook