Sunday, December 19, 2010

Holiday Miracles


The wonderful thing about Sedona is this sense of connectedness that complete strangers have with one another. Maybe living in a postcard evokes that sense of 'all as holy' in everyone. I've had profoundly meaningful conversations in parking lots, grocery stores, and on trails.

But yesterday, there was something Christmas-story-miraculous that happened between two strangers. Actually, there were about six of us present, but I was fully present with only one- (let's call him) Mr. Smith from South Dakota.

I was sending off a package for Christmas, and it was 9:30 in the morning. I was the second customer in line. There was an elderly man standing in line behind me, and several others behind him. With complete extemporaneity, he says, "I've been married for 63 years, you know."

I turned around and smiled.

"Really?" I said. "That's quite something! Congratulations to you!"

The man behind the counter looked up too, smiled, and continued his packaging.

Mr Smith continued, "I married the love of my life when I was 26 years old. Now, I'm 89."

My smile swelled, and I said, "I'm so happy to hear that. You must be having an amazing life together."

"Yes, we are," he says, "but I've outlived two of my boys. We moved here from..." and he continued for several minutes telling the story of moving from South Dakota to Sedona.

Right there. In the brightly lit UPS store with cardboard boxes and packing tape at attention, greeting cards pronouncing "Welcome to the world, Baby!" and "Get Well Soon!" He said it. He outlived two sons.

My heart literally sank. The others in the room missed the painful disclosure that surely cost him and his wife years and years of pain, tears, and suffering. But I heard it. (Sometimes I wonder if I wear an invisible "safe-hearer-of-trauma" sign or maybe I just hear the real stories beneath the sanitized versions?).

We spoke for several more minutes, and he shared that one loss was many, many years ago, a baby boy he would "never forget" and that one was his grown son about 20 years ago. As the clerk was putting the final touches on my holiday delivery, I turned and took his hand.

I looked in his eyes and I said, "Thank you for sharing your sons with me. I am profoundly sorry that you've outlived your two boys. No parent should ever have to outlive their child. I will think of them this holiday season, as I am sure you will miss them both."

He looked at me, tears welling in his eyes.

"Thank you," he said softly. "Thank you."

I don't really know his name, and I don't know if I'll ever see him again, but in a single instant, the magic of shared memories, laden with both love and tragedy, brought forth a moment of shared mourning and compassion between two strangers.

I got into my car but didn't start it. Instead, I cried. I just cried.

The best gifts we can give to one another are the gifts of pause. Love. Remembrance. Compassion. Intention. Kindness.

That's where the holy lives. That is where we give, and receive, the miraculous.

And that was my holiday miracle. Thank you, Mr. Smith.




Sunday, November 28, 2010

Death is everywhere. So is Life.

Tri-colored Fall


In 1984, I was driving my Pontiac Fiero down the road when I felt a thump-thump under my rear wheel. I looked in my rearview mirror, confused and wondering what that unusual sensation was, and to my horror, I saw a cat flailing in the street.

I immediately pulled over and began calling for help. I was very young in 1984, not at all prepared to deal with a crisis like this. Neighbors came out from their homes. A kind man- I will never know his name but will never forget his face- sat me down on the curb and told me not to look. I wept. And wept. And wept. The non-insect-killing, animal-loving vegetarian took the life of cat. It was not a moment of glory for me. Literally, I was inconsolable for days.

Yesterday, a woman driving ahead of us down our street in Sedona hit a small bunny. The bunny appeared to be fine; that is, she wasn't bleeding. The woman, shaken, stopped and asked if I would help. I immediately got out of the car with a soft towel and slowly approached the bunny. I wrapped her gently and placed her in a small box.

She was breathing, but her placidness meant she was badly injured internally. I took her home and began calling animal clinics. Images of the cat I'd killed 25 years earlier intruded. This was my chance for redemption. I will save the bunny, at any cost.

I called three clinics to no avail. Finally, a vet referred me to a woman who was "very skilled at small, wild animal" care. Hopeful, I dialed her. The bunny sat next to me in the box. Her breathing labored, I stroked the area between her eyes gently. It seemed to calm her.

No answer. I called again. Still, no answer.

I dialed animal control for guidance. They were, let's say, less than helpful. "Let nature take its course," they said, clearly misunderstanding my quest for redemption. I hung up frustrated. Then, in a matter of seconds, right before my eyes, the bunny leaned back in her warm box I'd intended as a place of comfort and recuperation from her injuries. She stretched out her front paws and looked at me as she took her final breath. Helpless, completely and utterly helpless.

"Death is everywhere!" I cried out loud through the house.

I wept, and wept, and wept.

And when I felt as if I'd wept enough, I dug a hole in my meditation garden, under the patina fountain where squirrels drink and birds play.

I wrapped the bunny-I-couldn't-save in velvet, designer shoe bags, and named her "Joy-Chen".

And I whispered to hear, "I'm sorry I couldn't save you."

"Goodbye little Joy." Atonement would not come on this day.

This morning, I woke up to small snow flakes dancing through the wind. The birds were singing, and the squirrels feasting on red berries and juniper.

I was quiet, contemplative, thinking about Joy and the cat and redemption.

And I said, in my mind, to the cat I'd killed so long ago, "I'm so sorry I killed you. I'm so sorry." A single tear ran down my face.

Perhaps, atonement did come that day, ever so subtly, and disguised as something else.

Death is everywhere. So is life.
They are inextricably intertwined.

Wednesday, November 24, 2010

Finding crumbs of gratitude amidst many tears...


I know that Thanksgiving is about being thankful. Full of thanks. Giving thanks.

I remember my first Thanksgiving meal of 1994, only four months after I watched Mother Earth swallow her body. The pain is indescribable. I can actually reach the pain, after 16-1/2 years, I can actually still reach it.

I sat at the table that day, my head down, meal and accoutrements provided by anonymous others who were too afraid of my suffering to do anything but drop-and-run. I remember thinking, "I cannot be thankful. I cannot be thankful. There is nothing, nothing. Just emptiness and aching and pain."

Indeed.

So I noticed a bread crumb on the table and thought, "Can I find a crumb of gratitude? Somewhere amidst all this pain, is there anything for which I can find gratitude?" Yes. There were many things, looking back. But then, I could only be grateful for one thing: love. The kind of big, overflowing, unconditional, reckless, and fearless love of a mother for her children. And for the year 1994, that single crumb had to sustain me.

I can say that my list of sufferings since her death are endless. I could write (and have written) pages and pages of the agony and despair, crumbs enough for many loaves of bread. Ah, but now, I have equal loaves, probably more in both breadth and depth, for which I am grateful.

And today, I'm reminded of Rilke's precious words:

. . . So you must not be frightened

if a sadness rises before you larger

than any you’ve ever seen, if an

anxiety like light and cloud shadows

moves over your hands and

everything that you do. You must

realize that something has happened

to you. Life has not forgotten

you, it holds you in its hands

and will not let you fall. Why do

you want to shut out of your life

any uneasiness, any miseries, or

any depressions? For after all, you

do not know what work these conditions

are doing inside of you.


and Rilke's delicious words continue in
E Sonnets to Orpheus,

Want the change. Be inspired by the flame

where everything shines as it disappears.
..

What locks itself in sameness has congealed.

 Is it safer to be gray and numb?

What turns hard becomes rigid

 and is easily shattered.

Pour yourself out like a fountain.

Flow into the knowledge that what you are seeking

 finishes often at the start, and, with ending, begins.

Every happiness is the child of a separation

 it did not think it could survive. And Daphne, becoming a laurel,

 dares you to become the wind.



And for the fire, and the earth, and the water, and the wind, and for all of this, and all of that, I am truly thankful.



Tuesday, November 16, 2010

In a Flash: How dying can teach us how to fully live...


This existence of ours is as transient as autumn clouds.
To watch the birth and death of beings is like looking at dance.
A lifetime, like lightning flashing in the sky,
Rushing by, like a torrent down a steep mountain.

-Buddha

If you bring forth what is within you
What you bring forth will save you.
If you do not bring forth what is within you,
What you do not bring forth will destroy you.

-Jesus



I've always loved the Tibetan Book of the Dead for its willingness to stand face-to-face, letter-to-letter with the Big D. Oh sure, there are plenty of books about loss and grief and death and trauma and even some books for the gero-group on becoming psychologically ready... and, and, and... but few books are written to help prepare people- at any age- for Death. Heck, its even one of the reasons why I'm so intrigued by Johnny Depp. Who else tattoos "Death is Certain" on his arm?

One of the things I've learned from the great wisdom traditions is that dying well requires a mindfulness and intention about living well. And this mindful intention helps to enhance our lives each and every moment in which we allow our self to confront our mortality. And how, precisely, do we engage with life in such a way?

Some suggestions from a few wisdom traditions that have helped me include:

1) From Buddhism: Accept suffering as part of the human condition and then (when ready) transform it. Forgive others. Forgive the self. Realize that everything is spiritual or numinous, even if you're a secular humanist. Be humble.

2) From Christianity: Serve others with loving compassion unselfishly. Don't talk about loving others- do it. Let them experience, firsthand, the Light within you, do not speak of it. Recognize the futility and transitoriness of the material world. Believe in grace and offer mercy. Practice humility.

3) From Judaism: While alive, fully engage in rituals both celebrating and mourning the transition to Olam Ha Ba. Remember that saving one person is like saving millions. Be humble.

4) From Hinduism: Be aware of your deeds and thoughts, both spoken and acted and also those unspoken and unrealized. Surrender your self to the needs of others. Self-efface.

5) From Sufism: Practice futtuwah- loving the other in an empathic way before loving self with humility and service.

There's an awful lot of anti-narcissism going on here, isn't there? So contrary to the natural state of human existence when the "self" is so porous that it often absorbs every molecule in its path, like the Dyson of humanity. Makes me want to anonymize my blog and yank the photo. Hmmm. Is a dollop of vanity okay?

Thank goodness I didn't name the foundation or the CBRS movement after my dead child.

Joking aside, there is clearly something here.

This mindful and intentional living is hard work. It's so much easier to live mindlessly and accidentally and recklessly and wantonly and self-indulgently and all-about-me-ly. But the latter brings an unpleasant death, I'm certain.

So, I've sat with the sagacious thoughts of the desert fathers and mothers on many nights, through many sunrises, and sunsets, and rainstorms, and warm days, and barefoot walks. Those great wisdom traditions have inspired me to live such that I strive to bring forth the beauty that is within me rather than the ugly. I want to live in the way of my true self, in such a way that I am ready for Death when Death calls me by my true name.

And so that as I'm taken down the steep mountainside of our momentary, lightning-flash existence, standing face-to-face with Death one day, I will die well because I have lived well. And I will be truly going home.





Monday, November 15, 2010

From Research to Practice: The system actually works!


Long ago, in a little Mexican restaurant, the smell of cilantro and lime dancing across the room, while normals around us laughed over margarita lunches, I met her. And the collision of two lives - and two deaths- would incite a paradigm shift that would change many other lives.

Rewind to 2004 when I was contacted by a grieving mom, Jodi, after the traumatic death of her daughter, Nia. Jodi and I would go on to form a therapeutic alliance that was very private. This was because Jodi was both a lesbian and a grieving mom.

Over the course of several years, I came to realize how unique her experiences as a single, lesbian, mother of a dead baby were... and a research study was born.

The manuscript, set to be published in a top tier academic journal early next year, was based on a qualitative, exploratory study on this subculture of the bereaved. All because of Jodi. Well, actually, Nia.

Here is what I found in the abstract:
____________________
Research on parental bereavement has focused historically on single or partnered, cross gendered (heterosexual) bereaved parents (Rando, 1986; Miles, 1978; Donnelly, 1982; Knapp, 1986). No studies to date have yet been conducted on the unique experiences of same-gendered bereaved parents. This multiple case study focused on child death in same-gendered parent families. The goal of this study was to yield information that will expand on the existing body of knowledge regarding parental bereavement as well as add to the dearth of literature on lesbian parenthood and challenges that lesbians may face as a marginalized group. This research study was conducted using in depth interviews with six self-identified lesbian mothers who have experienced the death of a child at various ages and from various causes. Results suggest that lesbian bereaved mothers experience a type of double-disenfranchisement after their losses, and that social support is often insufficient to meet their psychological needs. Because previous research has not been published on this specific population, the findings may be worthwhile for both the lesbian and gay parenting community, community advocacy groups, and clinicians who serve them.
__________________

Now, lo and behold the system actually worked!

From micro-practice ------> hypotheses --------> research --------> outcomes ---------> practice.

Thus, Nia's death gave birth to an support outreach for a doubly disenfranchised group, featured in Echo Magazine.

Now this is how the academy is supposed to work!

Margaritas anyone?

Oh, and thank you Jodi. Thank you Nia.

Friday, October 22, 2010

T.E.A.R. Study is Launched

I've been planning this study for nearly two years, and its finally come to fruition. Please share this link with other bereaved parents, grandparents, aunts, uncles, friends, siblings...

Please participate in the T.E.A.R. Study! If you're interested in reading some of my previous research, you may do so at the Center's research page. Thank you so much.



Research is to discover what many have already seen and to propose what few could imagine.
-Albert Szent-Gyorgyi

Sunday, October 17, 2010

Grief lessons from my barefoot walkabout


The first, intentional step into pain takes a lot of courage.


I can avoid those things that would add unnecessary suffering to my suffering.


The others who came before, those protected from the Earth, won't be able to know the experience in this way.


Things (I) will get broken.


I can miss the stickers if I pay attention.


Even when I cannot see it, the sun exists. It's vanishing is an illusion.


Rocks hurt when they get between my toes.


It's not all uphill.


There is more than just one way.


Sometimes I have to get on all fours to make it up the crags.


I've been to the edge and not fallen off.


Sometimes I need to pause on a cool, smooth rock or a mound of soft dirt,
and breathe through the pain.


I need to shed a few things, perhaps-once-helpful-but-now-a-hindrance -things, along the way to make it through the journey.


Beauty exists there, right next to the pain.


I can't always see around the corner, but I trust and continue.


There are no real short cuts.


If I am open to it, I can find love along the way.


Others have come too.


The destination matters.

Sometimes, I can lean on the unexpected.


I am grateful for the easy steps.


I cannot always identify things on my path.


Sometimes I must look back at where I've been for the strength to endure.


I cannot shade myself. Only another can provide shade for me and me for another.



From pain and sacrifice, I am able to become more fully human.


Friday, October 15, 2010

A Tree Full of Angels


"When you can lovingly be present to yourself,
your presence to others takes on a deeper quality".

I read it in less than two hours. A magnificently languaged, numinous book by Wiederkehr, a Benedictine monastic. I admit the title pulled me into this book. The idea of seeing the 'holy in the extraordinary' has always been appealing to me.

She calls this process 'harvesting angels from the crumbs' while living in a theophanous, rather than corporeal, world. The hallowedness of nature becomes apparent early in her writing as she strives toward intentional awareness of life, cognizant of those tiny miracles which are so easy to overlook, yet within with are contained the truly extraordinary: a spider's web, morning dew, a falling leaf, or a tree full of angels.

Mostly, one chapter resonated with me: Little-Great-One, Come Home.

Little-Great-One, Come Home.

I repeated this several times.

Little-Great-One, Come Home, Little-Great-One, Come Home, Little-Great-One, Come Home.

Myriad gravel paths of interpretation in that simple phrase for me. Probably different than for the author, yet still meaningful.

Near the book's sunset, she cites an anonymous quote: When we walk to the edge of all the light we have, and we take that step into the darkness of the unknown, we must believe that one of two things will happen... there will be something for us to stand on or we will be taught to fly.

To soar from the darkness of suffering? Pain? Even Death?

Certainly the book is Divine-God-focused. Yet, it seems that even secular humanists who have been to the edge of all their light would appreciate this book.

Because there is a contradicting humble, holiness in nature and her miracles. Because there are morsels of holiness in those every day moments with our loved ones. Because a leaf dancing to the ground or a raindrop falling from the sky or a dragonfly skimming water or the sound of a running stream are all truly sacred experiences. We need only walk to the edge of all our light to truly see. And one day, our ruptured hearts - the ones that have seeped onto the floor and into the crevices beneath our feet- will be transformed by this darkness of which she speaks and be able to look past the mundane into the miracle.

And we realize with certainty that the extraordinary is wrapped in the ordinary.

Yes. She was. Yes. She is. And yes, the Little-Great-One came home.







Monday, October 4, 2010

Standing in the Shadow of my Sun


In the beginning is the end.
T.S. Eliot


Many days, 5094 to be precise, have passed since my Sun set on my world. I stood outside my house in an empty field, crusty daffodils peeking through the cracked dirt beneath my feet. I watched silently as my Sun snuck behind the moutainous silhouette, saguaros reaching toward the sky, as a tether against its descent into the night.

I could not resist it's leaving. I was powerless. I gazed at it, seduced by the pain of losing something so beautiful. I wanted to run toward it, but I was suspended in time and space. The crowning vestige of my Sun vanished and left me there in a blackness so black that even my own hands, the ones that would have held her body against mine, were indistinguishable from the nothingness that surrounded them.

Lost. Truly. Lost. Rivers flowed. Birds hunted their prey. Trees dropped their leaves. Snow fell. Children laughed. And cried. Daffodils found water and the cracked Earth drank until it had it's fill. Clocks ticked, tides rolled, and time marched.

I asked for the world to stop. But nothing stopped that day. Save me.

When I was ready to surrender, I explored my world of darkness. I could not stand there in that field - for that Sun on that day in that place was no longer mine in this way. I was now an explorer of nothing and everything, birth and death, past and the future, heaven and hell, the day and the night.

And so, I walked the night. And walked. And walked. Miles and miles, feet bare against each stone and crevice. I came upon strange creatures. Some would glow just enough for me to find my way to the next place. Others, not many, would take my hand awhile, help me over the big rocks on the path and across the wide rivers that carried ones who came before down helplessly. A few, not many, even carried me when I grew too weary for another step. Many more, gremlins of the night, would trick me with breadcrumbs and promises, leading to even darker places, with wider rivers and eternal canyons.

Until up, up, over the horizon, peaking over my Sun's grave, there was my Moon. Just a sliver, a fragment, but enough light to get me to safety.

And I rested in its reticent glow, still wishing and longing with every cell in my body for that Sun on that day in that place. The one that was no longer mine in this way... until, finally, golden slumbers filled my eyes.

T.S. Eliot goes on to say that, "at the end of our exploring, we will arrive where we started, and we will truly know this place for the first time."

I awoke, salt on my tongue, moving ever-so-slowly. Like the transposed caterpillar emerging from her taut cocoon, sore and and scrambled, like the between station channels in the white noise of the world. I reached my arms, stretched to the sky, and looked over the horizon to see that I was standing in the field, my field, outside my house. Beneath my aching feet, daffodils were peeking through the cracked dirt. I watched, breathlessly, as my Sun ~the One of a different time and place and moment, yet mine still~ began its resurrection from behind the mountain top that had once been a place of internment. I watched its ascent breathe life- pure and unadulterated life- into the dirt and the trees and the birds and the stones and the clouds and the bugs and the children and the buildings and the world. And me.

And I truly knew this place, for the very first time.
In my beginning is my end.
In my end, my life began.




...for V and R










Friday, October 1, 2010

Position Statement for the MISS Foundation

Position Statement of the MISS Foundation

Co-Authors, Dr. Joanne Cacciatore & Kara LC Jones

Whatever is unnamed, undepicted in images, whatever is omitted from biography, censored in collections of letters, whatever is misnamed as something else, made difficult-to-come-by, whatever is buried in the memory by the collapse of meaning under an

inadequate or lying language –

this will become, not merely unspoken,

but unspeakable.

-Adrienne Rich


Definitions for purposes of this document:

Stillbirth: The intrauterine death of a baby after twenty completed gestational weeks until birth. Stillbirth is always a naturally occurring event and often occurs at or near full term for no apparent reason.

Miscarriage: The intrauterine end of a pregnancy anytime from conception to twenty completed gestational weeks. Miscarriages are also spontaneous, naturally occurring and unpreventable events.


Qui tacet consentit

Those who are silent tacitly agree:


In response to the promulgation of the term “Pregnancy and Infant Loss” used in Awareness Campaigns during the month of October:

The MISS Foundation recognizes October as Infant and Child Death Awareness Month. Our organization has also been asked its position on the Pregnancy and Infant Loss Awareness campaigns.

Several years ago, after careful consideration with the bereaved parents advisory board, the MISS Foundation made an executive decision for our organization not to utilize the term “pregnancy and infant loss,” but rather recognize October as Infant & Child Death Awareness Month. We use this language to describe all the awareness campaigning we do for the month of October and on the day of October 15th.

The key reason relates to the use of the vernacular "pregnancy loss" when addressing the issue of a sudden, intrauterine death of a child. Language chosen to describe social issues is very powerful. Historically, euphemisms are used to sanitize social problems. Yet, if we do not call it what it is, in the case of stillbirth, the birth of a dead baby, society will never pause to pay attention and the 'cause' will take longer to establish firm roots. And, for our members, the use of this term does not sufficiently express the magnitude of trauma involved in giving birth to a dead baby.

Indeed, for most of our members, the use of the phrase “pregnancy loss” was not an acceptable description of their grievous and traumatic losses. Rather, the language, for them, felt diminishing. In dissecting the phrase, some perceive the inference that a child, in fact, did not die. Rather that a pregnancy was "lost." For many women, the phrase decries and derogates their experiences.

We also found that some women who have experienced the loss of a child to miscarriage also reported feeling offended by the term “pregnancy loss.” Author and artist Kara LC Jones says, “I did not lose my children or my state of pregnancy in a crowd. With my stillborn son, I had a c-section. With my miscarried son, I was in full, natural labor for two days before he was born. When I chose to raise awareness about the life, death, grief experiences, I wanted to use a term that gave full gravity to what happened. Infant & Child Death Awareness expresses my experience, because so much more happened here that is deserving of honest language.”

Scientists illuminate some important factors to consider when addressing the issue of perinatal death:

1. Loss is complex. The responses to loss are even more complex. Bowlby’s theory posits a continuum of responses seen in parents who lose children to death more closely associated with the degree of attachment than "time" spent with a child. In other words, quality of the attachment not quantity of the attachment informs the psychological responses of the bereaved. Ambiguous losses tend to cause "complicated mourning" and these are often the most difficult to resolve. There isn't 'more love or attachment,' rather, mixed or ambiguous emotions, either from internal or external sources (meaning that often society assigns taboos and stigma to some losses), that discombobulate the parent's response (they know they feel overwhelmed, bereaved, and desperate but may not feel their feelings or loss are acknowledged and they struggle for validation from the 'social group' which they often do not receive). These are often disenfranchised losses such the death of a "less than perfect child," AIDS deaths, deaths by suicide, stillbirths, and even some highly conflicted relationships that end in death.

2. Stillbirth has been demonstrated to evoke strong and enduring psychological distress and emotional responses in women, similar to any child's death. In addition, there is a physiological paradox stemming from the many physiological responses that occur during the final trimester of pregnancy and in the postpartum period to prepare the woman's body to give birth and to facilitate the many changes that occur, including pain receptor preparation. These nuances coupled with the final outcome, a dead baby, at the end of the birth process, seems to incite an impasse for many women. Her body knows she gave birth and responds accordingly however there is no baby.

3. Miscarriages evoke a variety of responses in scientific data. The continuum ranges from grief responses similar to any child's death to little or no grief responses. There are many hypotheses in the scientific world about this phenomenon. One posits that women who conceive easily and are younger handle early miscarriages "better." Thus, older mothers or the women who endured years of infertility might respond differently. Some studies demonstrate that women with unplanned pregnancies who miscarry report feeling "relieved". Other women who were not particularly trying to conceive but who were happy with the pregnancy appear to be somewhere in the middle of the continuum. Another hypothesis has to do with spiritual beliefs about when life begins. For women who believe enthusiastically that life begins at the moment of conception, the miscarriage, at any stage, is the death of their child. For another woman who may not hold the same spiritual values, or who may not "attach" early in the pregnancy, the miscarriage may be viewed as a "pregnancy loss" and not the death of a child.

Yet, even in these studies, there are many disparate responses.

Because love and loss are nuanced and complicated, and because language is so powerful, the MISS Foundation chooses to channel its energy into campaigns that align with our philosophies about supporting women, men, and children after the death of a child at any age and from any cause. Indeed, love – and sometimes predictive grief- are not always measurable in a scientific test.

There is never a good age or a good time to lose a child to death. Whether at birth, one year, ten years, thirty years, or sixty years, it is simply out of life's expected order in the West. And the pain that ensues is indescribable for most. This is the cornerstone principle of the MISS Foundation, and this policy is what we believe to be the best for our members.

© 2010 by the MISS Foundation



One of my more recent pubs...


Clinical Obstetrics & Gynecology:
September 2010 - Volume 53 - Issue 3 - pp 691-699
doi: 10.1097/GRF.0b013e3181eba1c6

Stillbirth: Patient-centered Psychosocial Care

CACCIATORE, JOANNE PhD, FT, LMSW

Arizona State University

Abstract

Evidence-based practice and patient-centered practice are not mutually exclusive clinical ideals. Instead, both styles hold tremendous potential for complementarity in healthcare and should be used to enhance clinical relationships in which caring is humble, mindful, and nuanced. The onus of the responsibility for many decisions about care after stillbirth falls on clinical staff. Yet, even in the dearth of literature exploring standards of care during stillbirth the results can be conflicting. Thus, research in both patient-centered and evidence-based approaches suggest that less emphasis should be placed on the standardization of care; rather, the focus should be on relational caregiving that underscores the uniqueness of each patient and their family, recognizes culture, and encourages affirmative, rather than traumatizing, provider reactions.

Monday, September 27, 2010

Dreaming my Dead


I awoke, quite suddenly, at 1:40 a.m. last night. I opened my eyes, slowly, disoriented by the chirping crickets that hadn't been part of my dream imagery moments earlier. I looked at the night sky through the window and reality smacked me on the still-foggy-head.

It was all just a dream.

I wanted to go back to sleep to re-enter the dream, but my emotions took over and I began to weep.

It's been 16 years and two months since Chey died. In all those nights I've laid my head to slumber, I've tried to will myself to dream of her countless times. So much, in fact, that I'd given up the ghost on that wish.

So in total, I've dreamed of her only three times in 194 months. Seems so odd to me. This person who has occupied so much of my heart and my soul and my body- this person who is such an integral part of my being in the world- to dream of her so rarely seems an injustice of my unconscious mind. To add to my quandary, the three dreams I had of her left me terribly distraught upon awakening. In the first, one week after her death in 1994, she was running through a field of white daisies. She wore a big white brimmed hat. She turned briefly to look at me, but I couldn't see her face, as she ran through the field. I pursued her, calling her name, begging her to come to me. But she just ran, and ran, and ran. The next two were similar dreams. Elusive and ephemeral. The most recent, about six months ago, I was in a big conference center. I heard someone call her name amongst the sea of people and I saw the top of her head in the crowd. I pushed and pushed to get to her, frantically calling her name. "Cheyenne, Cheyenne, please, please, wait," I cried to her desperately. The emotional urgency, even now, remains evocative.

One night, in 2006, I dreamed of my dead father. It was such a powerful dream that I awoke saying sternly in my own head, "You are seriously not going to try to convince yourself that was just a dream, Joanne."

I dreamed my father visited me. We both realized he was dead, and I kept saying, "Oh my gosh, Daddy, oh my gosh!" He said, "Joanne, I have something very important to tell you and I don't have much time. " But I kept interrupting him, "Daddy, daddy, oh my gosh" over and over and over in disbelief! Then, I said, "Daddy, are you with Chey? I have to know! Are you with her?" and his image began to fade in front of me. "Daddy, don't go, please don't go," I begged, sobbing out loud as I slept. He faded before either disclosure. I awoke crying and continued, intermittently, to weep all day. Again, frustratingly fleeting and intangible.

Freud believed that dreams were incited by nuggets of the unconscious mind: feelings, thoughts, images, beliefs, experiences. Jung believed similarly, and added that dreams make us whole, more integrated. More concrete researchers admit they don't really know why humans dream or what function they serve, other scientists believe dopamine (L-dopa) plays a role in dreaming. Across cultures, the spiritual or religious believe, often, that certain types of dreams may be God's way of communicating between worlds.

Last night, for some unknown reason and literally from out of nowhere, I had the mother of all dreams. I dreamed of all my dead. They were corporeal not conceptual, concrete not evasive, and indelibly present.

I saw Cheyenne. I touched her. I hugged her. I told her, repeatedly, how very sorry I was that I could not save her, that I had given her death instead of life. I wept. She wept. We held each other and she said, "Mom, I forgive you. It wasn't your fault." I wept more, and felt such overwhelming love between us that to try to speak of it here would be insufficient and vacuous.

The moment was too sacrosanct for language. I could feel her.

My father and my mother were there too. Elisabeth was there. My grandmother was there. All recognizably dead. But all integral in the dream, except my grandmother, a woman with whom I was never close, who appeared, briefly, back in my mother's room as a sort-of-disconnected-apparition who never made eye contact with me.

The night sky looked barely real this morning. I saw the bright stars against the darkness and the full moon lit the sky just enough that I could see dew glistening on the leaves. The crickets sang in full orchestra. For a few moments, I had trouble distinguishing the world of dreams from the world of reality.

I haven't accepted a particular theory of why we dream. This morning, it's inconsequential. I dreamed of her. Finally. After all this time, I dreamed of her and saw her face and touched her and held her and spoke the words I've waited so long to say. And for that, I am filled with tearful gratitude. Even if this dream never re-emerges, it has incited a looking-within my self today that I've never before experienced.

And I wonder if it was, in fact, just a dream, at all.



(Photo for M-bug)

Thursday, September 23, 2010

October is Infant and Child Death Awareness Month



We invite you to join the MISS Foundation in our 1st official

Barefoot Walkabout to Remember (tm)
as we walk for and with our children...

This is a profoundly meaningful practice of mindfulness-based grieving which I discovered a few years ago. It has since taught me more about my self in the world, and in relationship to my dead daughter, parents, and friends than I could have ever imagined.

Please, see here for more information and join us...




Special gratitude to Kara and Hawk Jones for the amazing artwork,
as we do, every day, walk for and with them...

Monday, September 13, 2010

Wait, is that my heart spilled onto the ark's floor?






Like animals entering the ark, they gathered, two-by-two or three-by-three. Even four-by-four. But rarely one-by-one. They sought shelter, respite from the unsympathetic world.

And for three days, they found sanctuary, within the self and in the space between the self and other.

There were rituals all around, moments with tears and laughter and learning and growing and solitude and sharing and contemplation and confronting and love and compassion. And everywhere you turned, hearts were spilled onto the ground. Glasses brimmed with the tears of mourners. The recently acquainted held one another and weeped. The palisades of language, socioeconomic status, religion, ethnicity, and even age of child or cause of death were stripped away as we all stood naked in the midst of each other, clothed only with our suffering. On days like these, we realize what is truly important in our lives. On days like these, we bear no crimson masks. On days like these, we are reduced to our true, authentic selves, able now to recognize our own despair in the eyes of others. Magnificently painful and painfully magnificent.

On the final day, many hesitated to leave what we'd all come to recognize as a holy place. There were talks of the "painful re-entry" and the "envy of the normals." I believe one of the reasons people want to remain in this place is the sense of community we share... this communal milieu brings forth an aliveness in us that perhaps we've never before experienced. It's a sense of aliveness so palpable that it breathes into us.

Confronting death- and more importantly the carnage He left behind - seems to have given a renewed sense of life to hundreds of people this weekend at the MISS Foundation's 2010 gathering. It's not the old life of the normals. It's not the delicious naiveté in which we once existed. No. And it never will be again.

Many of us will remain indelibly changed by those extraordinarily raw moments in the ark. There, as our truth leaked out through fissures in the walls of our self, onto the floor, others tiptoed carefully around, so as not to disturb, recognizing something really big and really sacred is happening here.

And they stood with us, two-by-two or four-by-four, as witnesses to our spilling.







Tuesday, August 10, 2010

The most healing three-days a bereaved person could spend...


The MISS Foundation's conference is almost here.

We hope you can join us Sept 2-4, 2010 in Tempe, Arizona for an
unspeakably life-changing event!

View our program here.

Saturday, August 7, 2010

Grief, the Great Leveler



"When you find a person who has the same thought as yours, you cry out for joy, and you go and shake him by the hand. Your heart leaps as though you were walking in a street in a foreign land and you heard your own language spoken, or your name in a room full of strangers."
-Anne Morrow Lindbergh

On March 1 of 1932, Charles Lindbergh, Jr., aged 20 months, was abducted from his home in the middle of the night. Most of us have heard the horrific story of this kidnapping and murder. Anne Morrow Lindbergh, his mother, went on to publish a number of books, making significant literary contributions. My two favorites- A Gift from the Sea and Hour of Gold, hold within their pages exquisite truths, some rarely spoken with such eloquence:

Contrary to the general assumption, the first days of grief are not the worst. The immediate reaction is usually shock and numbing disbelief. One has undergone an amputation. After shock comes acute early grief which is a kind of "condensed presence" -- almost a form of possession. One still feels the lost limb down to the nerve endings. It is as if the intensity of grief fused the distance between you and the dead. Or perhaps, in reality, part of one dies. Like Orpheus, one tries to follow the dead on the beginning of their journey. But one cannot, like Orpheus, go all the way, and after a long journey one comes back. If one is lucky, one is reborn. Some people die and are reborn many times in their lives. For others the ground is too barren and the time too short for rebirth. Part of the process is the growth of a new relationship with the dead, that "véritable ami mort*" Saint-Exupéry speaks of. Like all gestation, it is a slow dark wordless process. While it is taking place one is painfully vulnerable. One must guard and protect the new life growing within-- like a child.

One must grieve, and one must go through periods of numbness that are harder to bear than grief. One must refuse the easy escapes offered by habit and human tradition. The first and most common offerings of family and friends are always distractions ("Take her out", "Get her away" , "Change the scene", "Bring in people to cheer her up", "Don't let her sit and mourn" ). On the other hand, there is the temptation to self-pity or glorification of grief. "I will instruct my sorrows to be proud," Constance cries in a magnificent speech in Shakespeare's King John. Despite her words, there is not aristocracy of grief. Grief is a great leveler. There is no highroad out.

Courage is a first step, but simply to bear the blow bravely is not enough. Stoicism is courageous, but it is only a halfway house on the long road. It is a shield, permissible for a short time only. In the end, one has to discard shields and remain open and vulnerable. Otherwise, scar tissue will seal off the wound and no growth will follow. To grow, to be reborn, one must remain vulnerable-- open to love but also hideously open to the possibility of more suffering.

-Hour of Gold, Hour of Lead, 1932


And how is it that 78 years ago, a bereaved mother in 1932 could have spoken truths that resonated so with me today, her thoughts the same as mine? Lindbergh speaks my name. She speaks my name in rooms full of strangers. And grief, of course, remains the same: It is, certainly, the great leveler.

Wednesday, July 28, 2010

Grief's Fire at Sweet 16

A circumspect message from my fortune cookie yesterday, 7/27/10
It brought both a smile, gratitude, & some tears
Indeed...

Chey's butsudan



Sometimes, when I am visited by grief, words to describe our time together drip from my fingers, like anxious rain drops drip off my redwood patio, onto the thirty rosebush below, and over the heather river rocks.

At other times, words forsake me, march into hiding, and my fingertips dry up like the crusty, desert soil. I become overtaken by grief that is word-less. When this happens, I often find myself more emotional than usual, unable to transform my tears into neat little letters of the alphabet, the ones my children tried so hard to sound, the ones that make feelings more sensical and manageable, ordered and less chaotic.

I realized that one of the central points I've learned is that my grief mastery requires a constant balancing between staying close enough to the fire that I feel its heat, but not so close that I am entrapped and burned by it. I don't want to forget my pain, or disinvite grief from my life. Certainly not. To do so would be to relinquish ties, and to do that would be to dismiss my love for her. No. Yet, I could not constantly remain sitting so close to the fire that it seduces me into its flames, harkening me to stay, don't leave, persuading me to come closer. It would paralyze me, capture me, and surely I could not see anyone else sitting 'round the fire, entranced by its dark and delicious ambiguity.

I sat by the fire this week. I was mesmerized. 16 is a big-girl-year, and it hit with hot fury. However, I choose not to sit so close today, stare too long, or give up my place in the world of the living. So I am scooting away, and turning my back to the fire until it, again, needs attention- a piece of wood or some oxygen to breathe.

There are too many hurting others, too much love in my life and the world, too much beauty yet undiscovered, for me to stay in that place right now. We had our time together, deeply enmeshed, and the flames of grief have reminded me of their power. That energy is better used elsewhere, for now, though, and it's a new day.

Happy 16th Birthday Chey. Like the flames of grief, my love for you will never, ever die. You are, indeed, that which casts its shadow on all that is both painful and beautiful in my life.

**And, a very special thank you to all those who remembered, sent notes, and lit candles. You cannot imagine how much it means to have others think of her life. Thank you so much**



Wednesday, July 21, 2010

Cultural Experiences in Death: More in common than that which differs


Love is the only possible explanation for the extraordinary suffering throughout the world.
-Oscar Wilde

Ethnographic research is one of my favorite, wherein the outsider becomes part of the system in which she is studying, not intending to incite change, but simply to learn. I spent this summer on a Hutterite colony, an Amish-like communal, Germanic society built upon faith, pacifism, and agriculture.

And learn I certainly did.

I am working on the paper now, which I hope to publish in one of my favorite thanatology journals. But I do want to, out-loud, express my gratitude to each and every mother, father, sister, brother, uncle, aunt, grandmother, grandfather, friend, and neighbor with whom I spoke who shared, so openly, the painful struggle of infant and child death on the colony. I know none of you will ever read this, but your stories have touched me in profound ways. I will carry the memories of all your children and grandchildren with me, in my heart, all my days on Earth. I am grateful.

What did I learn from this primarily homogeneous culture? Our family systems and structures are contradistinct. Housing structure and proximity vastly different. Religious practices vary a great deal. Even language and garb differ.

Yet, the hearts of grieving parents who have lost children bleeds the same from one culture to another, traversing any differences, and creating an invisible bond of shared pain. No words needed to be exchanged to know this. It could be felt resonating throughout the walls of rooms where tears were so generously expressed, and the eyes of grieving parents resembled so many others I'd seen in my 15 years of work.

Love and suffering, and love, connect us all.


Becoming...

""""""""""""""""""""""""""""""""""""""""""""""""""""""""""""""""
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


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