Wednesday, April 30, 2008

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

Monday, April 28, 2008

Seeking the sesame seed

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

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

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

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

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

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

Mother's Day Redefined

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

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

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

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

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

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

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

Death, simply, is not bigger than that.

Thursday, April 24, 2008

The Bionic Woman of Grief

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

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

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

But, I believe that I have become stronger

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

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

No, it does not always hurt like this. 

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

Tuesday, April 22, 2008

Going home...

It seemed simple, with all its good intent. And so it was. But it wasn't. It was 12 days of tumult- reawakened pain, regrief, and no relief.  I am reminded that the road less traveled leads to the places that astonish- like the journey to Havasupai, treacherous but well worth any peril.

I have, indeed, been astonished during this journey, like a little child discovering colored flowers from his dreams. Astonished by the intensity of grief that sits dormant just below the surface of my skin, waiting to be scraped or bumped. Astonished by the love that has deepened with the suffering. Astonished by the kindness of others, like staffs along a cliffside, safely guiding the path. Astonished by my children who share both the joy and sadness in each moment.

One day, when my work here is done, I will be buried with her ashes that are now safely placed in her butsudan, where I'll light Nagchampa each night and think of her.  And we'll never have to be apart again.

All my paths have led to this day, and now she is home for good. Nathan, thank you. Thank you.

She's come home. She's come home.

Polly Come Home
Robert Plant and Alison Kraus

If the wild bird could speak
She'd tell the places you have been
She's been in my dreams
And she knows all
The ways of the wind

Polly come home again
Spread your wings to the wind
I felt much of the pain
As it begins

Dreams cover much time
Still they leave blind
The will to begin
I searched for you there
And now look for you from within

Polly come home again
Spread your wings to the wind
I felt much of the pain
As it begins...

(If you have not heard this song, you really must listen)

Sunday, April 20, 2008

The Adams Family and the Ladybugs

I have always been different. Even growing up, friends at school and even family, though they always liked me, thought me an odd-ball.

I became a vegetarian in a strict Sicilian household that ate 27 servings of meat a day; bacon and sausage for breakfast, cappicola and salami for lunch, pork chops and brojol for dinner. Even desserts might contain meat.  My parents thought my herbivorism was a "phase". That was 32 years ago. I never outgrew that phase. I would fight my parents when they wanted to use pesticides, and I'd even try to catch scorpions to put them outside, resulting once in a sting that would cost me two days of school.

Friends also had good reason to lift a nostril at me. Throughout high school, I would walk cautiously around bugs as I traveled from class to class, careful never to step on one. I would, at the outrage of many girlfriends who spent the night at my house, catch spiders in my room to release them outside.  After Charlotte's Web, who wouldn't?

I couldn't stand the thought of harming other creatures. I've always had a sense that humans should be good stewards of the earth and its creatures.

Well, it's been a very long few weeks, and I'm finally rejoining the world of the living. Last night, my two youngest and I escaped the house to which I have confined myself the past 15 days. We saw a movie that, for me, required no cerebral activity: The Forbidden Kingdom with Jackie Chan and Jet Li.  Now, I will admit, I'm a big martial arts fan, having received my own purple, nearly made green, belt years ago with two great senseis, Dino Homsey and Tim Wion.  I'm also very fond of Eastern culture, as the philosophy of harmlessness and kindness resonate with me.

Then, today, I watched Seven Years in Tibet, at the behest of my daughter, a Brad Pitt fan. Obviously, the film's setting was in Tibet's capital, Lhasa.  A young Dalai Lama, the 14th Holiness Tenzin Gyatso, did something that would make perfect sense to me. As they unearthed worms in order to build a structure for His Holiness, he insisted that each and every worm must be relocated to a safe place to spare their life. This was so beautiful. The idea that even a worm is worthy of respect. 

That brings me to this afternoon when my daughter and I stopped by the hardware store for some wood. At the counter, I saw three plastic containers of "Ladybugs". 

"Oh, mom," she said, "ladybugs!"

"Wow," I said, picking up a plastic container with about 100 ladybugs. 

Then, because I just had to look, I noticed they were dying. 

I said, "Oh, we have to buy these to set them free."

They were not inexpensive. But I recognized this act as consistent with who I am and have always been. So of course, I thought, it's what I must do.

Then, I looked closer. There were four more plastic containers. Then three more. Then two more. In all, we ended up buying about 1000 ladybugs, begrudgingly, I admit, with some mental, self-flagellation going on in my head. Impatient customers behind me in line were looking at me like I had green skin and antennas poking out my limbic region. They joined in silent castigation with the cashier as I clumsily grabbed every bug bucket I saw. And my daughter, despite my insistence to the contrary, felt compelled to text all her friends to tell them about her weird mom.

So, I set hundreds of ladybugs free in my backyard with my 11-year-old, his eyes like a toddler at Christmas, as grateful polka dotted creatures crawled up our arms and in our hair. 

And I felt good. And I smiled. And I laughed; something I haven't done for more than two weeks. 

Even the earth's smallest creatures matter, and today, we helped to set each other free.

All for less than the cost of an hours worth of psychotherapy...

"...The more difficult the journey, 
the greater the depth of purification."
From Seven Years in Tibet

Wednesday, April 16, 2008

On My Terms

On My Terms

Every day he got up. 
Before sleep wore off, he was who he used to be. 
Then, as his consciousness woke, it was as if poison seeped in…
and he moved and he moved and he moved. 
But no amount of movement being enough to make up for it. 
The guilt on him, the hand of God pressing down on him saying, 
You were not there when your daughter needed you...

And as Flora twirled, other girls and women came through the field in all directions. Our heartache poured into one another 
like water from cup to cup. 
Each time I told my story, I lost a bit, the smallest drop of pain. 
It was that day I knew I wanted to tell the story of my family. 
Because horror on Earth is real and it is every day. 
It is like a flower or the sun; it cannot be contained.
Alice Sebold, The Lovely Bones

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

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

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

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

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

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

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

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

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

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

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

Saturday, April 12, 2008

~ When words cannot hold the pain captive ~

Too beautiful for this world
Someday I will tell you how I learned to write a poem
And one day you will tell me how you became One.

Friday, April 11, 2008

Men in grey suits

Our losses become a part of who we are, 
as precious to us as other aspects of our selves, 
and so does the transcendence of those losses.   
Patricia Weenolsen, 1998

In 1994, my daughter's death ripped a huge hole through my heart. I would never get to hear her voice, or feel her arms around my neck, or watch her walk down the aisle. I would never get to be with her as she gave birth to her own children. I would never get to laugh with her, weep with her, celebrate with her, sit in silence with her, braid her hair, take her to college, dress her for prom, comfort her fears.  

How do you quantify those losses? What number can you assign- what words can you offer- that would tell the story of what has been irretrievably lost?

I buried her on August 1, 1994, surrendering her 32" long pink satin coffin to the men in grey suits.  They lowered her casket into the ground, and I felt myself lunge toward her, like elastic returning to its natural state. Every cell in my body was programmed to be with her.  

I wanted to cremate her and have her at home, close to me, where she belonged. Others thought it would be "bad for me."  As often in the early days of grief, my desires were defeated without a fight.  After all, battling requires sentience and strength, and I had neither.

Gusts of sufferings, like the wind, came frequently at first; though some gusts were more like tidal waves that crashed down upon me without warning.  Grief consumed all the space in life- in my body and mind and heart- like a toddler, it commanded my attention incessantly. I felt condemned to this liminal place between life and death from which I could not expiate myself.

Gradually, I was able to make space for living again. Grief moved aside, and joy stood as a camrade next to my grief. My grief- it was mine. I earned it, I owned it. And it eventually became my friend too.

I'm not sure how, but I've survived for nearly 14 years. In the blink of an eye, more than 5000 days have passed absent the presence of one of my precious children.  But not a single second of any hour of any day of any month of any year have I not been cognizant of her absence. As C.S. Lewis said, "Her absence is like the sky, spread over everything."  And I've tried to make good on the promises I made her in 1994 while I sat on my closet floor. Those promises, sacred and and private, painfully sculpted me into the person I am today. 

This grief is a part of me now. I accept it with all the pain, suffering, angst, and despair. I accept it. And I've learned to use it to transcend my place in the world. It's the only way that I can make sense of the senseless- meaning of the meaninglessness- find purpose in the purposelessness. Acceptance that this grief was going to remain my constant companion was my pardon.

And today at 2:00 p.m., I will make good on one of those closet-floor promises. I will begin the process to bring her home. Her pink coffin will be freed from the ground, and I'll take her back from the men in grey suits. Her cremains will be at home, in her butsudan, with the few reminders I have of her profound existence in the world. The beauty is finally bigger than the pain...

And in some small way, I feel like she'll be closer to where she's belonged all these years.

Thursday, April 10, 2008

Western, pathological paternalism and the woman...

Pelli's mom, Randi, asked me about yesterday's post. I have my own theories about why the apparent dispute about this issue even exists in our culture.

I believe part of the problem began around the turn of the 20th Century (slightly after) when both birth and death were institutionalized. Birth gradually came under the control of a male-dominated industry and there is evidence to support this (Murphy Lawless, 1998). Physicians became the decision-makers around birth-related issues, reducing women to merely background noise throughout their own experiences of birth, where they should, rather, feel empowered and capable. In the book, The Politics of Maternity Care, editors Garcia, Kilpatrick, and Richards (1990) discuss the struggle between woman-centered midwifery and the obstetrical medical model during the early 1900s. 

Maternity care, the authors posit, is an economic and political phenomenon ( "The Business of Being Born"). Mothers have become the passive participants in an orchestrated ritual of medical intervention that often renders them helpless during their own birth experiences. "The pregnant woman became a "parturient" [sic] conditioned to jump through the flaming hoop of labor" (Kitzinger, 1990, p. 203), that "asserts the control of society over both the mother and the newborn" (Kastenbaum, 2004, p. 99). Those in power define its terms– the language, service methods, protocol, and culture of care. Soon, not just pregnant women but most of society looked to physicians as the absolute and unquestionable messiahs of medicine. And today people still do not question. Why? Piety. Because of their allegiance to the medical model and because the 'doctors know what's best for you.' *

Hershey (1985) defines paternalism occurring in situations wherein (1) the paternalistic action is intended to benefit the patient, and (2) the patient's feelings are disregarded and irrelevant. Paternalism in medicine is rooted in hegemony, and includes actions taken for the patient's own good as perceived by the practitioner, even when these are expressly against the will or desire of the patient.

True feminism-- which is often not practiced by feminists today who have aligned themselves with the patriarchal and paternalistic system and have become a larger part of the problem for women and mothers-- emphasizes the autonomy of the female body and mind, and "strongly recommends an active role for women in childbirth– many women now wish to give birth rather than passively deliver" (Doering, et al, 1980, p. 13). Yet, in today's medicalized world of obstetrical care – where a powerful medical lobby has appropriated control over all issues pertaining to pregnancy and childbirth – doctors and mammoth healthcare organizations indisputably have more power than mothers and midwives (Garcia, et al, 1990; Finch, 1982).

"Paternalism is most likely to manifest in settings where both bureaucratic and institutional pressures conspire to undermine women's autonomy" (Walsh, 2005, p. 708). "In maternity care, a gendered layer is added… it manifests, not just in withholding information and choices from women 'for their own good', but in assuming professional authority on all" maternity matters (Walsh, 2005, p. 708). When mothers and midwives then seek to change the political milieu of birth, they are often overpowered by the special interests, whereupon they typically acquiesce, compromising their positions, to appease those holding power (Garcia, et al, 1990).  It is the politicization of the female body, whereby individual women "could only hope to change things by being charming and tactful" (Kitzinger, 2003, p. 203).   Many of today's "feminists" are not only betraying the feminist heritage which seeks to empower women and mothers, but they are actually impeding those interests.  As the politically recognized representatives- voices- of women, today's feminists- instead of vehemently defending motherhood and womandom- actually deliver women into the hands of the paternalistic establishment.

So what about when the baby (or child) dies? How does this fit into the discussion? Babies and children often die in institutions, hospitals, and are most often under the care of an obstetrician or other physician. The woman is often subjected to the beliefs, values, and practice of a paternalistic archetype of birth and death that pathologizes and medicalizes a uniquely female experience:

If I were to tell you all the pain and mental anguish I experienced when my baby died, it would take hours. Although it happened 29 years ago, I have never forgotten the cruelty meted out to me under the guise of hospital regulations. As a result, I never saw my daughter, but to this day I wished I had (as cited in Peppers & Knapp, 1980, p. 53).

Authentic feminists buck the notion that "frail women [need] to be protected from the harsh world" (Weiss & Young, 1996).  Here's the issue in Western culture now: Since the time of Jean-Martin Charcot and Salpetriere, paternalism has sought to quash what is misperceived to be feminine hysteria, even when it would be a normal response under other tragic circumstances:

Not long ago, a baby's death was an unspeakable event in a hospital. Hushed silence greeted the delivery of a stillborn. The baby was whisked away before parents could see or hold their baby. They were told to forget what happened and have another baby as soon as possible. The mother was given tranquilizer if she became too upset, if she lost [control] (Leon, 1992, p. 7).

Does a mother experiencing life's worst tragedy need protection from her own legitimate experiences by those who know what is "best" for her? Should doctors have the right to dictate whether a mother traumatized by the death of her child should be permitted to see or hold her child? Is the answer to swiftly medicate a grieving mother so that her hysteria and grief do not impinge on the lives of others?

Perhaps, the most appropriate answers come from the initiates themselves. In response to the Hughes study (a study misrepresented by the media that discouraged hospital administrators nationwide from allowing mothers to hold stillborn babies) and the media's overreaction to the outcome, bereaved mothers wrote letters to editors of The Lancet (2002), later published, about their own experiences:

I lost my daughter in March, 1998. I was allowed to hold her and dress her, and was given footprints and plaster handprints… and was given the option of having some photographs taken with her. I personally feel it was the best thing for me.
- Angela McCabe, Canada

After reading the paper… I felt compelled to write regarding my personal experience. I am the mother of a full term stillborn girl who died 15 years ago. The only regret I have is not spending more time with my daughter. I was encouraged by the staff and my husband to hold her, but was very reluctant… today, I thank my husband and the staff for allowing me the few minutes I did spend with my daughter… my biggest regret has been my reluctance and the years of silence, not talking about her. The hospital did give us one photograph, a lock of hair, her measuring tape, and her hand and foot print, which I treasure clearly with no regret… Even after 15 years, talking about the death of a stillborn child is difficult for everyone, and among African Americans, it seems to be taboo.
- Deborah Brooks, United States (p. 1601).

But wait...the hospital is only the first step of intervention. Enter the medications. After all, we can't have hundreds of thousands of "hysterical" women running 'round the country, can we? Certainly, the patriarchy couldn't allow the female  hysteria of the Victorian era (more specifically, 1835 to 1900 or so, when physicians accepted the Greek idea of a "wandering womb seeking its proper place") to prevail in a civilized society.

According to psychiatrist, Elio Frattaroli (2006) psychiatric treatment, like maternity care, has also been paternalized. With the resounding qualities of a feminist analysis, Frattaroli's critique of psychiatry hinges on the objectification of patients that occurs in relationships which are devoid of intimacy and interpersonal connectedness. One example of this is the overuse of prescription medications for women.

The use of pharmaceuticals to help grieving mothers cope with normal responses is commonplace after the death of a baby. Frattaroli discusses the use of psychopharmacology to replace human relationships after difficult life experiences: "The idea that we can avoid the inherent pain and struggle of human existence, and be transformed, simply by taking a pill is a subtle but powerful dehumanizing force that undermines the life of the spirit and subverts the fundamental human quest for a more genuine transformation of the soul" (Frattaroli, 1997, p. 369). He is critical of the tendency for clinicians to ignore what people feel. He tells the story of novelist William Styron and his battle with depression that nearly ended his life in 1985:

(Styron) came to understand his own depression in particular as the result of an incomplete mourning of his mother's death when he was thirteen years old and he believes more generally that depression always originates in some profound experience of loss. "In the nethermost depths of one's suicidal behavior," he writes "one is still subconsciously dealing with immense loss while trying to surmount all the effects of its devastation" (as cited in Frattaroli, 1997, p. 96).

Styron decided to end his life after being prescribed an antidepressant from his psychiatrist. He felt more hopeless than ever, taking several days to prepare for his suicide. Unwittingly, he happened upon a piece of music that reminded him of his mother. "Flooded suddenly with poignant memories… he realized that killing himself would be an act of desecration" (p. 96).

Etymologically, the word psychiatry means healing the soul – "a healing of the soul," from the Greek psykhe– "mind" + iatreia– "healing, care." This type of healing would require a psychotherapeutic process and meaningful relationship between the patient and therapist. Frattoroli is not an absolutist who never prescribes medication for his patients. Rather, he does so judiciously and in the context of consistent, therapeutic intervention that include both one-on-one therapy and a relationship with patients.  

He asserts that by focusing on emotions such as anxiety, guilt, and shame, "we become more accepting, less alienated from ourselves" and that it is the "awareness of feeling, not thinking, that we can discover who we really are" (p. 19). Frattaroli warns against what Freud termed furor sanandi, the rage to cure. Instead, he suggests that clinicians treat with compassion, respecting culture as well as the symptoms of the patient. 

Healthcare providers should avoid paternalism because it is "incompatible with woman-centered principals" (Walsh, 2005, p. 708). They should, instead, build rich relationships that empower women to make their own healthcare choices after the death of a child, from holding and seeing the child who died to whether or not they need to stay in bed for a day, cry at work, or express their grief publicly. Physicians should facilitate rather than denigrate their maternal and feminine responses to loss and trauma, remembering that ritualization is a crucial part of the human experience, and is especially important for women (Kastenbaum, 2004) after the death of a child.


Because of the nature of my work, I have the great privilege of working with some amazing physicians such as Drs Peter Barr, Diep Nguyen, Michael Berman, Barry Schifrin, Guillermo Gutierrez, Jason Collins, and others who respect women, mothers, and their choices.  They don't practice from the ivory-tower, they abandon academic arrogance, they listen intently to their patients, they take their concerns seriously, and they act as advocates.  They recognize women as the experts of their own bodies and minds.

Guillermo Gutierrez, a neonatologist in Phoenix, even attends the funerals of babies who die at his hospital.  

These physicians epitomize the axiom of primum non nocerepri- first do no harm- and they exceed it. They are to be applauded and modeled. Perhaps, larger systemic change can be modeled after their practices vis-a-vis the larger, governing institutions. I believe in these types of analyses, it is critical to separate the individual from the institution. 
Individuals are capable of compassion and they are directly accountable to the public.

However, institutions affect the macrosystem. They hold a great deal of power which they are not reluctant to wield, yet they are incapable of compassion, respect, and they are unwilling to accept responsibility for the influence they exert on grave decisions in the political arena. They are wholly unaccountable. For example, the California chapter of the American College of Obstetrics and Gynecology (ACOG) opposed the bill in California that was overwhelmingly supported by California mothers and that would allow mothers the choice to receive a "Certificate of Birth resulting in Stillbirth (CBRS)".  

They were successful in halting the bill's progression in 2003; however, their efforts to defeat the bill were unsuccessful in 2007 (thanks to the efforts of three powerful mothers in this state) and the legislation was signed into law in October.  Mothers expressed outrage at ACOG for their assaults on this measure, yet, who was accountable? No single person could come forward as the deciding authority- as the foe of grieving mothers. After all, which kingpin is willing to accept public responsibility for denying a grieving mother what is so rightfully hers?   

Their opposition will soon be a part of the historical travesty that fades into the background and remains unspoken and unknown (though not if I can help it), while the public goes on to blindly believe that these types of bureaucracies actually serve women and their causes. These institutions, by their inherently bureaucratic nature, seek only to advance their agendas.  

Shifting blame and abdicating responsibility is also easier for a non-entity. For example, the National Organization for Women (ironic) stated on CNN's American Morning that they would not oppose the CBRS legislation as long as it was optional.  Yet, behind the scenes in many states, leaders in that institution have worked to kill the CBRS bill, using their political power to incite fear in the legislators in whom they have 'invested' well. In New Mexico, Richardson vetoed the bill, purportedly due to pressures from "women's" rights group. In another state, one legislator committed to authoring the bill; that is, until lobbyists from these groups met in his office and threatened to undermine his efforts for reelection. I don't know, but last time I checked, women were the ones giving birth.  Should (true) feminists not be championing this instead of opposing it? Oh, sorry- I forgot what I said above about some feminists "delivering women into" the very paternalistic and patriarchal systems which oppress them..

Institutions are culpable for this cultural dis-ease I describe above, in my opinion. This makes them dangerous to us as women, mothers, and individuals. Ah, this is an entirely new post for another day...

Wednesday, April 9, 2008

The Pity- La Pieta

Michelangelo's masterpiece La Pieta has always spoken to my heart. A grieving mother holding, tenderly, the lifeless body of her son- Jesus draped like silk across his mother's womb- it is an evocative image for both Christians and non-Christians.

Yet, after my daughter died, this image assumed a wholly different meaning for me. I remember holding my own dear child in my arms, her body lifeless, and my heart aching. I understood La Pieta- the pity or mercy- in a way I never imagined.  

I just finished a recent, empiric study with my colleague, Dr. Frederik Froen, on mothers who hold their children after they've died. There has been some debate, particularly with stillbirth and much-older children (teenagers and adult children) as to whether or not this should be permitted in hospitals.  Some hospital staff are concerned that it may be too traumatic for families. Others believe it will prolong or protract grief.

I say that this decision is one for the mother herself (or father).  Who has the right to forbid a grieving woman from saying goodbye to her beloved child?  Who gets to make that choice? A doctor? Nurse? Social worker? And where do they get to go when they leave the hospital? Home, probably to their living child/children.  They are not cast with the burden of lifelong sorrow, so why should they make such an important and irreversible decision for the woman? 

This feels like a double-standard in our society. La Pieta is visited by millions around the world in St Peter's Basilica. Millions come to see a woman- a mother- and her baby son, Jesus- sculpted eternally in her arms. Religious icon or merely an artisan's historic expression, this work is revered by many as one of the most solemn and sacred "creations in the history of art" (Flach, 2002).   It is a moment between mother and son that has been captured in stone and that is honored by others around the world. 

In today's world, this very important decision, one that will be the most sacred and solemn moment in the life of a mother, is debated by the sterile institution of the academy and medicine, those who wish to hold power over such choices.  It is not for them to adjudicate. Instead, this weighty decision should be left to her, while having supportive others who will patiently guide her to  making the right choice for her, both in the short and long term, out of love and not fear.  

In fact, the study's results (we just recently submitted to a medical journal) suggested that caregiver attitude played an important role in the decisions of mothers as to whether or not they hold their child. The mothers, overcome with fear and traumatic responses in the brain, cannot think clearly, and are unable to understand how their decisions today will affect them in one, three, or twenty years.

I can think of no greater imperative than this:  others should honor the beautiful and everlasting relationship between all mothers and their children who have died.  They are all deserving of both mercy and pity...

The Dark Side of Grief

The Dark Side of Grief 

(c)  By Joanne Cacciatore, PhD, MSW, FT
All Rights Reserved

It has been 13 years, three months, ten days and eight hours since my precious baby girl died. Several months after she died, I read C.S. Lewis' A Grief Observed. For the first time in 13 years, I picked the book up again last night, and I read it.

I don't know what it was about Lewis' words that seized me, but within fifteen minutes, this frail, seemingly harmless paperback had crashed down upon me, mercilessly transporting me back in a time to the house of early grief. Lewis, a spiritual man, spoke honestly of his struggles in this memoir, challenging everything he knew to be true about spirituality, mourning, and love:

Talk to me about the truth of religion and I'll listen gladly. Talk to me about the duty of religion and I'll listen submissively. But do not talk to me of the consolations of religion or I shall suspect that you do not understand (p. 25).

I look up at the night sky. Is anything more certain than that in all those vast times and spaces, if I were allowed to search them, I should nowhere find her face, her voice, her touch? She died. She is dead (p. 15).

The act of living is different all through. 
Her absence is like the sky, spread over everything (p. 11).

I almost prefer the moments of agony. They are at least clean and honest (p. 4).

If a mother is mourning, not for what she has lost, but for what her dead child has lost, it is a comfort to believe that the child has not lost the end for which it was created. And it may be a comfort to believe that she herself, in losing her only natural happiness, has not lost a greater thing, that she may still hope to 'glorify God and enjoy Him forever.' [It may be] a comfort to the God-aimed, eternal spirit within her. But not to her motherhood. The maternal happiness must be written off. Never, in any place or time, will she have her son on her knee, or bathe him, or tell him a story, or plan for his future, or see her grandchild (p. 27).

As I read these words, grief seared through the days and years that had distanced me from the raw emotions so familiar in the early days. I was catapulted backward, into the abyss from which I had emerged years earlier, scratching and clawing my way into my new world. 

I began to re-experience the profound trauma of that cruel July day in 1994. It felt, once again, so much like hopeless insanity, thoughts looped endlessly in my mind and every cell in my body aching for my now-13-year-old little girl. I was surprised by the intensity of the emotions. They felt primal and irrational, yet they were all too familiar remnants of the past. I was alone and lonely in the most terrifying place I'd ever known.

This was the dark side of my grief. I thought I'd put it away, wrapped judiciously in paper and tucked neatly into a box, on a shelf, in the closet. I thought I'd wrapped it in an impermeable bow. The dark side of grief would remain there for the rest of my life, for I would focus on the light of grief, hope and the beauty from pain, the gifts of my beloved child.

Yet, here I was, more than a decade-long chasm between the 'me back then' and the 'me now'. The dark side of grief revisited, an assurance that it was never too far, lurking just around the corner. I felt desperate to stop the emotions. I feared, despite all I knew and had learned, that I was going to a place from which I might never be able to return. I could not stop sobbing; for hours, I cried, until I had no more tears left to shed. I went to sleep exhausted, my eyes swollen, heart aching, and mind pining.

There are so many dimensions- crevices and precipices- in the grief experience that I feel myself still bewildered by its mysteries. Last night was excruciating, yet necessary, for me. I reconnected to that unspeakable pain from which I had safely distanced myself. I questioned, again, the concept of a good and loving Creator, or as Lewis questioned, a 'sadistic and vivisecting' God. I stood on the inside looking out into a world in which I do exist; yet, from which I feel so detached. And I understood my grief, at this moment in time and space, in a different way.

In a sense, I realized that to know my daughter more wholly- to love, remember, and honor her life- I had to eventually allow space between myself and the debilitating grief that paralyzed me in the early months and years. The insidious grief that rendered me breathless, speechless, and motionless. I realized that I could not see life clearly if my eyes were constantly filled with blinding tears. My mind could not reach clarity if muddled by the incessant sensory loop of events on the day she died. Her life could not have meaning and purpose if my life was devoted only to the dark side of grief.

So, I continue to live with grief as my constant companion, and I will occasionally approach, perhaps even welcome, the dark side of grief when it visits. The fears that it will overtake me, steal me from the new life I've learned to love, seem unfounded. I think that it, too, is my friend, teaching me new ways to see the magnitude of my own grief and the grief of others, and keeping the wounded mother of 2007 connected to the wounded mother of 1994. In the words of Lewis, "Sorrow, however, turns to be not a state but a process. It needs not a map but a history…something new to be chronicled every day."

All of my grief, the painful, bitter side and the beautiful side that brings with it gifts and teachings, have value in my life. While I'd rather sit on a warm, summer day with the latter, there are evenings when my mind is quiet and the dark side will come to sit with me. I will accept its visits knowing I will smile at its departure in the morning that follows. 

And I, like Lewis, hope that she- wherever she is now- is smiling too. 
Poi si torno all' eternal fontana.

This was originally published in the MISS Foundation's newsletter

Tuesday, April 8, 2008

Death Talk

Death Talk has been an amazing tool for grieving people. I knew people needed to learn things related to death, but I had no idea the response would be so positive. One woman emailed after the death of her father-in-law, asking that we continue the shows, and thanking us for changing her life.

This session was really interesting for me. One discussion centered on how to help grieving parents after a child's death.  For such a long time after Chey's death, I would get frustrated- even angry- over the cliches and platitudes people used to 'comfort' me.  

At some point, and I'm not sure when this transition occurred, I softened. I feel pity for those who don't get this. My inclination now is to think, "How sad that this person is missing so much meaning in life."  

I don't get angry anymore. I try to use the opportunity to gently educate others, hoping that by learning about death, their lives will be more full, and their hearts will swell with gratitude for what they have.  And slowly, people of all cultures and all languages and all socioeconomic classes and from all the regions in the world will understand...

Last month, Josh and I went spelunking around Flagstaff in the snow. We met some Buddhist monks on our journey there. I spoke to one about my work, and he said, "Death should not take children, but it sometimes does. And it is the most sad and the most tragic for people." 

That was all he said. And it was perfect.

Education is the most powerful weapon 
which you can use to change the world.  
~Nelson Mandela

Indeed, indeed.

This Friday, April 11, 2008

This Friday, I will face the second most difficult thing I've had to face in my lifetime. At 1:30 p.m., my daughter, buried August 1, 1994, will be disinterred. With a small group of her family, we will pay our respects as her body is taken from the ground that swallowed her, and we will have her cremated to bring her home. It's something I've wanted to do for 13 long years. I'm ready now. I am scared, admittedly. But I know it's the right thing for me to do. I have a butsudan to hold her ashes, and of course, my heart will continue to hold her memory.

A letter from a former high school teacher...

From: "Hidden"
Sent: Mon 4/16/2007 6:15 PM
To: Joanne Cacciatore
Subject: Re: ABC news story

Hello Joanne,
It was nice to see your story on the news. I must admit it was not an easy story to hear. My sister was born still many years ago. I have her death certificate. Shortly before my mother died, she asked me to locate where her daughter was buried. It took awhile to find that out...eventually, I did find out where my sister is buried.

Writing this is is a chapter in my life that has impacted me in so many ways, so many memories are surfacing. I so anticipated having a baby sister when my grandparents were taking me to the hospital to see my mom. What they didn't tell me was that my sister was dead. They stayed quiet as they drove me back home when I asked where she was.

I never grieved for her until many years later. There is a certainly psychology that went with my sister's death. My mom was different, it changed her, and she treated me differently (over protection amongst other things). ..I will say that when I finally found my sister's grave, my mom had already died, so she never did find her whereabouts. Ironically, though, she is buried within sight of my mom's grave.

My sister's grave is amongst many unmarked childrens' graves in that cemetery. Perhaps, your story is a message that the timing is right to have her marker placed on the grave.
It was nice to see you on the are doing wonderful things. It is important to see.

"Name removed"

This was one of my favorites teachers in 1982. He was always special in a way I could not have described back then- he was compassionate and kind- he was patient with us all (and our biology class could certainly be disruptive). Yet, he had a heart for his students, a caring about him, that was beyond any other teacher I'd ever known. But now I understand why.

"The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen."
- Elisabeth Kubler-Ross

Monday, April 7, 2008

Dancing with Mr. Death

I've had more deaths in my short life than most people decades older.

My best friend, Elisabeth; my parents; and my little baby girl.

I don't understand the myth of "movin' on" if you pack your emotions, memories, love, and inexplicable pain away in a suitcase, neatly on a shelf...turn the lock so someone doesn't accidentally open it...and to believe that would actually work.

Marcel Proust said that to heal from a suffering, one must experience it in full. 

And when done this way, when I completely surrendered to and immersed myself in the grief, I understood the world in a different way. I knew that I would never be the same...and that the relationships I had with them had changed. I knew that I would come out of it one day, on the other side of Hades. 

I've been to the abyss with Death and even played cards with Him, gambling the only thing I thought I had left. And here I am, 13 years later...happiness doesn't elude me anymore and He and I no longer dance. I won't dance with Him for a long time's not my turn anymore, damnit.

Now, I know and I understand that Death could not end those precious relationships. He just isn't that big. Here is my thumb, Mr D.

I'm grateful for that. I wouldn't have it any other way...

"Death is nothing at all. It does not count. I have only slipped away into the next room. Nothing has happened. Everything remains exactly as it was. I am I, and you are you, and the old life that we lived so fondly together is untouched, unchanged. Whatever we were to each other, that we are still. Call me by the old familiar name. Speak of me in the easy way which you always used. Put no difference into your tone. Wear no forced air of solemnity or sorrow. Laugh as we always laughed at the little jokes that we enjoyed together. Play, smile, think of me, pray for me. Let my name be ever the household word that it always was. Let it be spoken without an effort, without the ghost of a shadow upon it. Life means all that it ever meant. It is the same as it ever was. There is absolute and unbroken continuity. What is this death but a negligible accident? Why should I be out of mind because I am out of sight? I am but waiting for you, for an interval, somewhere very near, just round the corner. All is well."     ~Henry Scott Holland
"It was the love of love,
the love that swallows up all else,
a grateful love,
a love of nature, of people,
of animals,
a love engendering
gentleness and goodness
that moved me
and that I saw in you."

~William Carlos Williams

The ascent requires habituation, getting used to the light...
getting used to seeing things clearly. 
~Jonathan Lear
"We are never so defenseless against suffering as when we love, 
never so forlornly unhappy as when we have 
lost our love object or its love."     
- Sigmund Freud

There are some losses, some grief experiences, so profoundly painful, that there simply are no words to describe it- no sounds to express it- no vision that can shed light on it- for many, no God who can heal it. And certainly, no pharmaceutical company or magical pill that can assuage or vanquish it.

Freud's secondary process of the human experience is governed by the Reality Principle. The secondary process of the ego sets about obtaining the love object or brings it into existence through cognition and rules of the Reality Principle.  The ego is an executive agency of the system dedicated to thinking and problem solving.  The infant's ego will continue to learn and grow though the Reality Principle by testing, planning, acting, and judging what works and what does not work. The psychological growth stimulated from this process improves perception, thinking, memory, and action.  Perhaps ultimately, how this loss is managed affects the rest of our lives.

The Reality Principle is also the first grief experience of a human being. Grief, an emotion so often denied in our fast paced society, is one of the most fundamental of all the emotions and perhaps, as asserted by Freud, our very first emotion. It is the emotion upon which all other human emotions are built. To paraphrase Freud, an acknowledgement of loss initiates the authentic "work of mourning."

Yet, Western culture overwhelmingly has shunned the most basic, innate human experience so often and with such ignorance that in the process it has failed to foster the skills necessary to deal with the psychological impact of loss and sorrow. We ourselves have become the face-less grievers of history, looking for a "quick fix" for our sadness.  The loss of sadness in our society will most certainly have devastating effects, individually and collectively.

Healing cannot come in a bottle.

The Struggle to Accept the Spiritual...

One must still have chaos within oneself 
to give birth to a dancing star.

Plato, in his belief that the soul has full knowledge prior to birth, confers immortality to the human being.  In his recollection argument, Plato suggests that humans compare aspects of the human experience with particular ideals for which they could have no faint memory except that before birth.  He identifies the soul as unchanging, divine, intelligible, and indissoluble. Conversely, he asserts, "the body is made for dissolution." 

I don't know why I struggle so with the concept of a soul. It seems intuitive, in some sense, that other dimensions of the "person" exist. Is only the material, tangible world real? The world of physics cannot provide all the answers, at least not yet.  So I continue to ask the questions...

And I wonder if, perhaps, even within the tiniest molecules in nature, there is a soul of sorts.  The acorn, in its tiny, cocoon, contains enough molecular chaos to give birth to the mighty oak. There exists immortality in this process, for this mighty oak will give birth to the acorn, and again, the acorn brings forth yet another oak.

The creation of a thousand forests is in one acorn.   ~Ralph Waldo Emerson


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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