Sunday, April 12, 2015

Dying of Cold: Growing in the Darkness


Kindness
Before you know what kindness really is
you must lose things,
feel the future dissolve in a moment
like salt in a weakened broth.

What you held in your hand,
what you counted and carefully saved,
all this must go so you know
how desolate the landscape can be
between the regions of kindness.
How you ride and ride
thinking the bus will never stop,
the passengers eating maize and chicken
will stare out the window forever.
Before you learn the tender gravity of kindness,
you must travel where the Indian in a white poncho
lies dead by the side of the road.
You must see how this could be you,
how he too was someone
who journeyed through the night with plans
and the simple breath that kept him alive.
Before you know kindness as the deepest thing inside,
you must know sorrow as the other deepest thing.
You must wake up with sorrow.
You must speak to it till your voice
catches the thread of all sorrows
and you see the size of the cloth.
Then it is only kindness that makes sense anymore,
only kindness that ties your shoes
and sends you out into the day to mail letters and purchase bread,
only kindness that raises its head
from the crowd of the world to say
It is I you have been looking for,
and then goes with you everywhere
like a shadow or a friend.

― Naomi Shihab NyeWords Under the Words: Selected Poems

She died almost 21 years ago now, on a hot summer eve, as the intoning locusts and wingless nymphs sauntered in their nests. It was a lonely time for me because grief, by its very nature, is disconsolate for a very long time.


I was thinking about the moment I closed her casket as I kissed her for the last time. I remember speaking to myself in my mind, "This cannot be real, this cannot be real" over and over until the funeral director at Messinger's gently put his hand on my back. I turned toward him with a desperate plea in my heart that connected with his.  He said nothing. There was nothing to say. But I could see tears swelling his eyes. He stopped and said, "Take your time."  That was the first act of compassion I can remember. And I am grateful.


I had many horrible encounters with others after her death. Western culture is prepossessed by the idea of "moving on" - furor sanandi, as Freud once said: the rage to cure. Sadly, it is precisely this attitude that adds suffering to suffering, trauma to trauma, for the bereaved.  My colleague, Vanessa Juth, PhD, found that social constraints on grievers, primarily women, the young, and the poor, increased the risk of depression (not grief, depression), stress, somatic symptoms, worse "global health", and poor adjustment to loss  (Juth, Smythe, Carey, & Lapore, 2015).  Surprise, surprise. Simply put, this study confirms what common sense tells us:  pushing people toward "healing" or "moving on" or narrative constraint is the most salient predictor of poor outcomes after loss.


But while many encounters with others were disavowing and invalidating, I also had explicable moments of compassion and love and connection with others, like:


... the nurse at John C. Lincoln hospital who, just after the birth of my subsequent son three years later held my hand and let me feel both the happiness and the sadness that lived together right then. Like the stranger who saw me crying in the baby aisle at the grocery store and just stood beside me and said softly, "I don't know what happened but I'm so sorry."  Like a friend of a friend who asked me her name and didn't recoil when I spoke it. Like my best friend Kelly who, even though she couldn't be there for the funeral, showed up a few years later and apologized for abandoning me and asked my forgiveness. Like Dr. Guillermo Gutierrez who validated the worthiness of her life over and over again, becoming an advocate for the MISS Foundation. Unbeknownst to him, his beautiful young son, Nicolas Gutierrez-Cantin, would die in 2008 and he would reluctantly join our unwished-for-club.  Like the late Senator Andy Nichols (D-Tucson) who, when he heard the story of Chey's death, broke down in tears and said he "couldn't imagine a harder pain."  Like Kim Parrish and Jim Gregory, two strangers turned friends who have never forgotten to email, or send a card, or call on the anniversary of Chey's death. Like my once-neighbor, Amber, who always remembers her in my child-count.  Like Dr. Larry Bergstrom, one of the physicians I met at the Mayo Clinic in 2013 when I was having some health issues who said how heartbroken he feels when he meets someone who has lost a child. Like my dog, Francis, who came up and leaned on me when I was struggling on prom night, 2012, cognizant of what I was missing. Like Katie and Zack's mom who, after losing both her children in a horrific car crash, will reach out one-broken-mother's-heart to another, to ask what I feel like Chey, Katie, and Zacky are doing together. Like Mbug's mom who will handmake beautiful cards to comfort other parents like her, missing their kids. Like KD and Doug, two very special people who have tirelessly contributed to the MISS Foundation to help families whose children are dying or have died. They haven't lost a child but they see the devastation, and they open their hearts to help support others. Without their consistent generosity for the past five years, we would not have been able to help countless families through life's darkest times.


How fortunate am I to have encountered such kindness along the path of such despair? For the simple, fleeting glance of compassion from a stranger to the most benevolent act of generosity,  I am grateful.


These synchronous moments with others epitomize agape, a kind of love for our fellow humans, and this is the kind of space that allows grievers to feel connected and to slowly begin to adapt and integrate loss. And as Naomi Shihab-Nay said in her poem, 



Before you know kindness as the deepest thing inside, 
you must know sorrow as the other deepest thing.
You must wake up with sorrow.
You must speak to it till your voice 
catches the thread of all sorrows
and you see the size of the cloth.


It is knowing sorrow, deeply knowing sorrow in all its darkest places and with all its most harrowing faces, that brings us to a place of unparalleled compassion for others and, perhaps one day, for ourselves.  The road of sorrow is not a wide and well-paved road. It is a road riddled with stones, gorges, and barricades. It is dark, uncharted, terrifying. We meet others along the road who offer sustenance: some water, a morsel of food, some direction, a small candle to light the way, a hand to climb out of the hollow when we fall. 


It is these very people who will give rise to our kindness because they have helped us "speak to it", to be with our loss and the darkest moments of sorrow. Their courage and kindness, even in the most infinitesimal of encounters, enkindles within us the ability to grow, from the seed buried deep in the bowels of earth, into the majestic tree of compassion we shall, one day when we are ready, become. And we will shade another.


And our cloth, wet with tears and worn from too much handling, will provide warmth and solace to another. "Man dies of cold, not of darkness..."


And this is how our world will change.



Friday, March 6, 2015

Grieving Savagery


Barbarians always think of themselves as the bringers of civilization.
-Pierre Schaeffer

I went on a long walk in the sun today, contemplating many things in my usual heliotropic style. I started thinking about the ways in which imperialistic reign has harmed and exploited countless others in the name of "civilized" society.  For example, many North American native peoples were once thought to be barbarians, their ways savage, out of control, "wild" and they needed to be "tamed". The "savages" were described as "animals" for their unseemly ways of being in the world (Schwartz, 2008).   They ate when hungry, they let their children play, they worshipped different gods. Rather, the proper way of the imperialist was scheduled, sternly calm, tamed, controlled, and, yes, civilized. And of course, the imperialists, the "bringers of civilization", alway know best. 

Then, I started to think about a concept I'll call 'psychological imperialism'.  Psychological imperialism occurs, much like sociopolitical imperialism, to dominate, control, and "rule over" the emotional experiences of others perceived to be savage, uncivilized, and abnormal. It's a type of psychocentrism; that is, the proclivity to judge one person's emotional experiences with an arbitrary standard set by another; and then to coerce that person into a more socially acceptable, civilized, way of being. The collective ego of those in power of the standards intimates, "I am better than (smart than, more normal than, more controlled than, more ... than) you, and thus, I will subjugate and appropriate psychological dominance over you (enter systemic egoism) as noted by W.H. Auden:   “In most poetic expressions of patriotism, it is impossible to distinguish what is one of the greatest human virtues from the worst human vice, collective egotism.”  

Indeed, the word civilized, etymologically, has fascinating roots:

civilize (v.) 
c.1600, "to bring out of barbarism," from French civiliser, verb from Old French civil (adj.), from Latin civilis "relating to a citizen, relating to public life, befitting a citizen; popular, affable, courteous" (see civil). Meaning "become civilized" is from 1868. Related: Civilizedcivilizing.

There are, perhaps, few places wherein behaviors are not befitting a citizen in public life such as grief.  Grief is oft out of control. Grief is barbaric. It makes others crawl in their skin.  It is savagery, distasteful, animalistic. And systemic psychological imperialism is used to quell grief, to force people into dark corners of hiding with their pain, to silence a grieving mother's wailing with mind-numbing pills, to forcibly calm and control that which cannot - and should not - be controlled. 

It may be time to consider rejection of this parochial practice. 

There is no place for egoism and psychological dictatorship in grief. There is no place for tidy, neat, presentable, or civilized. Grief is, often, rather raw, oozing, subversive, chaotic, writhing, and most certainly uncivilized. 

And, like those who fought political imperialism throughout history, seeking to reclaim rights and land and culture and language, we- grievers- can fight against what my friend Dr. Robert Stolorow calls the psychological 'war on grief' and reclaim our right to mourn, whether civilized or more often uncivilized, primal and primitive, uncontrolled and untamable, and certainly savage:
savage (adj.)
mid-13c., "fierce, ferocious;" c.1300, "wild, undomesticated, untamed" (of animals and places), from Old French sauvagesalvage "wild, savage, untamed, strange," from Late Latin salvaticus, alteration of silvaticus "wild," literally "of the woods," from silva "forest, grove" (see sylvan). Of persons, the meaning "reckless, ungovernable" is attested from c.1400, earlier in sense "indomitable, valiant" (c.1300).

Our grief cannot and should not be governed by others

Revolt, with loving kindness when you can, against that which seeks to take what is yours. Listen to that sacred knowing deep in your soul that tells you this pain has its place and time, and that your Beloved's absence calls for such protestations. 

When others try to force 'normal' and 'civilized' upon us, when others try to steal from us the grief we have or rush us toward a cure, when others coerce us away from tears and toward something for which we are not yet ready, remember the words of Pierre Schaeffer: those who seek to tame and civilize are, themselves, the barbarians. Who else would foist such psychological harm on a vulnerable other but a barbarian?

So hold your heads high and, listen to the admonition of Walt Whitman to reject that which "insults your soul." Hear the words of Thoreau, "all good things are wild and free", and know that the most valuable grief is precisely that: wild, wild, wild and free of imperialist influence.

Take back what is yours. Take back what is yours.

“We take off into the cosmos, ready for anything: for solitude, for hardship, for exhaustion, death. Modesty forbids us to say so, but there are times when we think pretty well of ourselves. And yet, if we examine it more closely, our enthusiasm turns out to be all sham. We don't want to conquer the cosmos, we simply want to extend the boundaries of Earth to the frontiers of the cosmos.... We are humanitarian and chivalrous; we don't want to enslave other races, we simply want to bequeath them our values and take over their heritage in exchange. We think of ourselves as the Knights of the Holy Contact. This is another lie. We are only seeking Man. We have no need of other worlds. We need mirrors. (1970 English translation)” 
― Stanisław LemSolaris

Thursday, February 19, 2015

Complicated Grief "Disorder"? Really?



There is some hullabaloo going on about "prolonged grief disorder" aka 'complicated grief disorder.' Yep, another grief-related 'mental illness.'  According to a NEJM blog it is "condition is characterized by intense grief that lasts longer than would be expected according to social norms and that causes impairment in daily functioning."

Ha! Social norms? Around grief? Talk about pathology! Western culture's social norms around grief are as abnormal as you get. The average bereavement leave is three days, many bereaved parents are medicated within days or weeks after a traumatic loss (even in the presence of data to suggest these medications can be harmful and iatrogenic), and mourners are expected to get back to 'life-as-usual' often within weeks or mere months even after traumatic death.

The same blog continues:
"The hallmark of complicated grief is persistent, intense yearning, longing, and sadness; these symptoms are usually accompanied by insistent thoughts or images of the deceased and a sense of disbelief or an inability to accept the painful reality of the person’s death... the urge to hold onto the deceased person by constantly reminiscing or by viewing, touching, or smelling the deceased person’s belongings... often feel shocked, stunned, or emotionally numb, and they may become estranged from others because of the belief that happiness is inextricably tied to the person who died. They may have a diminished sense of self or discomfort with a changed social role and are often confused by their seemingly endless grief."

I've had many emails and calls about this. So, I will say, and those who know me can predict this:

I think certain groups are at risk of - again - being diagnosed and "treated" for absolutely normal feelings and experiences after an excruciatingly painful and traumatic loss. 

For example, I worked with a mother who lost her three children in a fire. Why would she not have persistent and intense yearning? Why would she not long for her children? Feel sadness? Experience an inability to accept their deaths? Why would she not feel shocked... emotionally numb? Why would she not experience a diminished sense of self? And let's not underestimate the power of being surrounded by cruel and insensitive others while in our grief.

Please consider that when others promote 'treatment' for a 'disorder' related to grief, they are asserting that these are aberrant - somehow abnormal - reactions. They are medicalizing what it means to be human, to love and to, rightfully, mourn. Um, sorry, no.

When the overwhelming majority of a population feel the same way, experience the same emotions, and contradict what others, on the outside looking in, assert are "normative", then I'm going to defer to the *real* experts to establish the Gaussian curve for that particular population.

I reject this idea that, somehow, a mother whose three children die in a fire or a mother whose two children are murdered or parents whose baby dies during birth or whose son died at three of cancer or whose daughter is raped and murdered are "disordered" for feeling the aforementioned symptoms. No way I will be convinced of that. Rather, a world wherein those horrific events can occur is deeply flawed and the tendency for our culture to pathologize the pain and suffering they expectedly would endure is a sickness. Of *course* they experience an 'impairment in daily functioning'. No shit Sherlock. This is a NORMAL reaction to ABNORMAL tragedies. Come on, let's use our hearts and our minds about this. What happened to basic common sense?  Of course grief is complicated. So is love. Heck, life is complicated. 

So here's the question: Do some people need support through traumatic grief? Oh yes, yes indeed. Many do. And here's the next question:  Need we medicalize and pathologize traumatic grief in order to provide aid? No, nope, no we don't. And we shouldn't. It is trivializing and dismissive and an offense to our humanity.

The best support and care we can offer is nonjudgmental loving, compassionate space to be with what is... others to remember and speak their names... unconditional respect for our emotional state... a place of safety... time to mourn a profoundly important and utterly irreplaceable relationship, time and space and kindness as we integrate the loss, and eventually, support without coercion, as we find meaning and purpose in life again if and when we are ever ready.


Monday, February 2, 2015

When the Media Utter the Words: Child Death



When the media utter the words 'child death'... all hell breaks loose. Especially during a party.

So this blog is not going to be popular. 

I can feel it. I'm in the minority, perhaps, but I'd like to offer a dialectical view on the big event during yesterday's football game.

My email and phone exploded during the Superbowl.  As many now know, the Nationwide ad about children dying sent many of the non-bereaved into a tearful frenzy.  Bereaved parents around the world who contacted me were split, though the majority supported the ad, especially those whose children died at home from accidents. Most, however, do not represent all.

And not everyone will agree, particularly about such an emotion-laden, censored topic in our culture.

So, many want to know how I feel.  I rarely respond to these types of things but - literally - my emails have amassed to the point where I am unable to respond to each one.  Therefore, the blog.

First, I know the non-bereaved were not expecting this commercial.  People may tolerate commercials about domestic violence. Feminine hygiene girl power.  Even alcohol related sentimentality. But something to awaken them from their delusion that, somehow, their child will never die? Nope. That is absolutely unacceptable.  A "buzz kill" to quote one blogger. "Debbie downer" to quote a news reporter.  "What were they thinking to air that ad?" to quote another.

And thus, many non-bereaved took to social media about the ad:

"Morbid," "somber," "horrific," "I cried!" "Why would they talk about children dying?"

Well, if you think it's morbid and horrific to watch an ad, imagine that this is your life. Oh I get it.  Everyone watching was in a party-with-Katy-Perry-on-a-pretend-lion-with rainbows and unicorns-leather and tights mode. But that isn't reality.

Reality? Well, children can- and do - die everyday.  And a certain percentage of parents watching the Superbowl's controversial ad yesterday- yes, some of their children will die. Some died today. And some will die tomorrow.  And for that, my heart breaks.

Tragically, that is the real outrage: the fact that every single day, parents lose their children, not just to accidents but to cancer, newborn death, illness, SIDS, homicide, suicide, non-preventable accidents, fires, medical malpractice, and the list goes on and on... How do I know? I've been a bereaved parent for two decades. And, I am a counselor to them every day, mostly seven days a week, for the past 18 years. Then, there is the research professor piece. I assure you, from someone who is immersed in this field of practice and study- as hard as it is to see an ad like this, to live as a bereaved parent is exponentially - unimaginably - unfathomably more painful.

Now, the bereaved who strongly disliked the ad... well, everyone is different. A few said their friends feared the ad was a reminder of all they lost... but really, there isn't a day when we are not reminded of all we've lost. Many parents I read on the net cited feeling 'triggered' as the main reason for their dislike of the ad.  Interestingly, however, most MISS Foundation parents, told me they appreciated the ad, even if they didn't "like" it, and even those whose children died in home accidents:  "If it saves just one life..."

I was, personally, not triggered and most parents I work with were not triggered because 'triggered' often comes with experiential avoidance.  And our group promotes integration, accommodation, making room for all the dark places that grief is in the aftermath of this tragedy.

Still, I recognize and honor that for some parents, the ad was simply- not ok. And that is to be expected to some extent. I'm saddened and sorry that some felt hurt by the ad. And Nationwide has its responsibility too...

Now, here is where I question them:


  • Did you consult with anyone on the inside about this ad?


  • Do you realize that, while accidents do cause children's deaths, many if not most accidents are not preventable?  Why not say that? Why not say, "While not ALL child deaths are preventable..." in your ad?  "Make Safe Happen" doesn't always work, you know? Even the most diligent and abiding parents lose their children to accidents. And do you realize how the parents feel after their child dies from an accident? Maybe there could've been some acknowledgement of that in your ad?


  • Did you consider the ways in which the ad might affect parents whose children died? And, if you did, what did that discussion sound like? Because I'd have liked to see Nationwide pay for a moment of silence to honor these children and their families, to bring awareness, not just to child death, but also, to the grief suffered in the aftermath of such unimaginable loss.


  • Did you consider asking an actual family to share their story with the public instead of using actors to dramatize that which needs no dramatizing? Oh - too painful? I'm thinking your ad couldn't have gone more south than it did so why not invite a real family to share the story of their real child who is worthy of recognition and acknowledgement.

In sum, this is clearly a polemic issue for so many.  

I am neutral on the ad.  I didn't like the presentation, yet, I think the concept was brave- I've never heard a company speak on this issue.  Yet, raising awareness is crucial, not just to prevent other deaths but also to open the door, even if objectionably and distastefully presented,  to dialogue.

So, I want to express cautious gratitude to Nationwide for getting an otherwise-apathetic general public off their asses to face this tragedy. 

We can discuss this. We should discuss this. We must discuss this.

Children can and do die.  It happened to me. Maybe it happened to you. It happens to more than 200 new families every month who join the MISS Foundation. 

And you- non bereaved person: It can happen to you. You are not exempt. Terrifying? Yes, we know.  Morbid? Somber? Horrific?  

Yes. Yes. Yes.  

So, go home and kiss your children and spend time with them and be sure they know how deeply you love them. Why? Because death is inevitable for us all, and because even children die.  Remember that every moment with them is a gift. 

We are all vulnerable creatures holding tightly to that which we love.

-----

Deep bows and appreciation to those who have allowed me to share my heart.











Thursday, January 29, 2015

Why Grief is Sacred and Personal...

Grief is a deeply intimate and personal journey. It is sacred ground upon which we fear to tread, yet something in us calls for us to enact that which we know is rightfully ours: grief.

And the experience of loss can also be very layered.  We have the primary loss- the death of our child, our children, a partner or spouse, a sibling, a parent, a grandchild, a niece or nephew, an uncle or aunt, a grandparent, a friend, a pet... and then, sometimes, the loss, particularly in traumatic death, comes with peripheral losses: the loss of naiveté, the loss of a parent group, the loss of innocence, the loss of trust in the world, loss of safety, loss of other relationships, loss of a home or a job, the loss of our minds or even what I call a necessary and temporary loss of reality, of our minds - and hearts - as they once were... and, the list of secondary losses can be unending. I am going to briefly share my own experiences of traumatic death and the layers of loss.

Some may be able to relate. Others may not.  But this is my truth, and it's important for me to tell my truth. This truth isn't something I've publicly discussed, but its been in my heart for nearly 21 years. Yesterday, I had a conversation with another grieving parent who shared this truth.  She felt shame for this truth, and it made me wonder if there were others like us...

When my newborn daughter, Cheyenne, died in July of 1994, the juxtaposition of unmedicated childbirth and then death, kicking in the door where He most certainly was not welcomed, for me was traumatic beyond my own imagining. I cannot describe, in mere words, the horror of that day when death violated the inviolable: a mother and her baby.  Every cell in my body was programmed to nurture and mother my child. Yet, I had no where to enact that evolutionary drive. Hormones raced through my veins, messengers of mothering, so I would pace the hallways at night, pangs of distress screaming in my head, my arms burning for her, and milk burning at my breasts for my dead baby. Yes, I was losing my mind. This I knew. Why wouldn't I?

Three months after Chey died, I began to experience what those in the medical field might call 'hallucinations.'  They lasted for about seven weeks, and were primarily tactile or somatic, but on several occasions they were also visual, auditory, and supernatural in a terrifying way.  I didn't understand what was happening to me. I was disoriented and filled with dread.  And I told selective few about these experiences. I wondered if my mind was irretrievably lost in the trauma of her death. Would I ever be the same again? Really, just as there aren't words to describe the loss, there are no words to describe what happened in my home for nearly two months, from October 5, 1994 to November 20, 1994 as I teetered on the precipice of reality.  I do know that, from the moment of her death to the moment the incidents began, I felt alone, lonely, terrified, despairing, and isolated.

And primarily, the ways in which others interacted with me mattered.  Many avoided me altogether. Some cited scripture or holy books (nonplussing because I was, at the time, a secular humanist). Social support was scant. Psychologists I encountered wanted to run from me, perform some 'intervention' to diminish my "symptoms" of grief and make themselves feel more powerful in the face of the unfixable, or focus on my marriage: psychiatrists wanted to medicate me. Neighbors told me to focus on life, you know, unicorns and rainbows, or just "choose happiness" (right, Megan?). Pastors wanted to proselytize and convert me. But exceedingly few, if any, were willing to really sit with me in the middle of the grief's fire and allow me to just be, bearing witness to the deep abyss of my despair. I could sense their own fear and trepidation.  Might their children die, too?

So, really, it was the existential loneliness, sense of disconnection, and invalidation for the worthiness of her life and death that was unhinging me, not my grief itself.  I could barely parent my older three children, whom I deeply loved and over which I felt tremendous shame (adding shame to shame to shame) because of my changed ability to parent. And then, there was what John Lynch, M.D. calls the 'toxic talk.' Platitudes. All things happen for a reason... G-d has a plan... Time will heal... Aren't you glad it wasn't one of your older children... And all the 'at leasts'...

Many - in fact countless - others told me that I was young.  I could have another baby. They assured me that I hadn't lost my motherhood with her death. Yes. All true.  I was young, only 27. And yes, I could have likely conceived again.

As an aside, this last bit really distressed me. I didn't care about losing my motherhood. I didn't care about losing a 'pregnancy' because I didn't lose a pregnancy. My newly born daughter died. And yes, I was young and could have another baby.

But... I did not want another baby. I wanted her.

I was not mourning just any baby.  I was mourning her.

Another child would not satiate my longing for her.

I did not want to be a mother. I wanted to be her mother.

I needed people to understand that she was not and would never be replaceable. Another child would not assuage my grief because I did not desire another child. I desired only her, my child who died.

This is precisely how I felt.

I would have another child, born nearly three years later, unplanned. A son. Beautiful beyond words. He was not her, and she was not him. They were unique people, different children, whose identities were not enmeshed for me. I was very clear in my head and in my heart; I am so glad he is here. I am so sad she is not. I love them both - all - equally.

Off my 'soapbox' and back to my state of mind...

The strange occurrences ceased one day, as suddenly as they began, and I can't explain why or how. I never accepted that I was mentally ill or "deranged" as was inferred. What happened to me was powerful, beyond this world, and I suppose my brain was reacting to the extreme stress and trauma.  As Eleanor Longden profoundly noted in her inspiring and insightful TED talk, its not about what's wrong with a person. It's about what happened to a person... and then there are the vast and lasting effects of others'  attitudes toward us and the way that influences us- the trust or mistrust of our own hearts, and whether or not we are able to integrate and adapt in the face of traumatic experiences...

I remain in awe and wonder about the horrifying phenomena during my acute grief, but, intriguingly, it hasn't reoccurred since November of 1994. Research is clear that traumatic experiences can create reactions in the brain,  sometimes in critical ways, even if temporarily. As a researcher and as someone who has direct experience, this interests me. I know that feeling so disconnected from the world, existing in that liminal space between the living and the dead, though frightening, may have been essential for integration and adaptation.

And I also wonder the role of others in our emotional and mental health.

Specifically, did the desperate angst and loneliness I felt lead to the psychological distress that would later manifest as visions or terror-filled encounters with what felt like the supernatural? I'm uncertain, but I am curious.

So, recently, I connected with a Harvard researcher and we are considering a study to explore these types of 'visions' or hallucinations or seemingly supernatural experiences for mourners.

If this resonates with you and you'd like to share your story with me, please, email me informally.  I'd like to hear from you. Dr_Joanne@me.com

-----










Monday, December 1, 2014

Charlotte's Precious Life

Charlotte Helen Bacon, always loved, always missed...


Dear Readers,

As many of you know, the Kindness Project started in 1994 (officially in 1996) after Cheyenne died as a way to honor both her life and her death and to remind people to act with compassion toward others, including - or especially - strangers.  Since then, approximately two and a half to three million kindnesses have been done around the world in memory of a child, brother or sister, parent, aunt, uncle, cousin, spouse or other Beloved one.

This is a very special call that I hope you'll share with many others:

With permission from her parents, I am tragically privileged to introduce you to a most amazing, beautiful, spirited, and precious little girl, Charlotte Helen Bacon, and her legacy of kindness.

If you know of any children, grieving brothers and sisters or other children, participating in the Kindness Project, please feel free to submit their stories of compassion and nominate a child for the Charlotte Bacon Act of Kindness Award.

To her family: I will never forget the little brown haired girl in piggies who loved all animals (especially dogs and especially pink poodles) and who had a zeal for life that surpassed her far-too-few years here on Earth. Thank you for entrusting me, again, with her life, with her love, and with the profound chasm of her physical absence.

Please, hold Charlotte, her parents, and her older brother in your hearts.


~~~~~~~

Newtown Kindness and the Charlotte Bacon Act of Kindness Awards were founded in memory of Charlotte Bacon, a victim of the Sandy Hook Elementary School tragedy. It was established to foster a kindness mindset in children and recognize special kids who complete acts of kindness.  
Leading up to the first and second Charlotte Bacon Act of Kindness Awards events, we saw participation from thousands of children around the world. All children are to be recognized in some fashion, but the top award winners have been announced on Charlotte Bacon’s birthday, February 22nd.
The 3rd Annual Charlotte Bacon Act of Kindness Awards event will be held again on February 22, 2015. We invite you to tell your stories of kindness and inspire others to do the same! Please send us your story of how you (or someone) has had the courage to Think Kindly and Act Boldly! before January 15, 2015! No kind act is ever too small! Read about last year’s winners on our blog!


~~~~~~~

Tuesday, November 25, 2014

What grief and a torn rotator cuff have in common...

Side plank with the right arm, finally!

In February of 2014, I - in all my gracefulness - took a hard fall on the ice (note to self: cowboy boots are not appropriate footwear for slick surfaces), landing directly on my right shoulder as my feet reached toward the sky. Think a "no-hands" headstand.

Yes. Ouch.

And there we were. Me and pain.

For a few weeks, I walked around in a state of denial. Maybe if I ignore the pain long enough, if I pretend it isn't there, it'll just ~~**~~ p o o f ~~**~~ go away. Like magic.

Only, it didn't work.

Three months later, my entire arm was immobilized. My yoga practice ceased. I was unable to complete the tasks I'd once done with such ease. I couldn't use my computer, at least not as easily. I was not me.

And my frustration and fear were building, culminating in a visit to the most wonderful doc in Sedona (Steven Johnson, M.D., the most amazing and compassionate PCP I've ever known!).

He checked my range of motion.

"Let's get an MRI," he gently suggested, knowing full-well I would resist.

"Uggggggghhhh," I groaned.  Predictable me.  "I don't have time," I grumbled.

"Umm," he paused, "you are preferring the alternative?"

Fast forward two weeks, when I could finally get in for the MRI.

When the report was released, the news was grim. Significant tear and plenty of other damage I'd done not properly attending to the injury sooner.

Wonderful Dr Johnson called to deliver the bad news.

"... You're going to have to see a surgeon, you know?" he, again, reluctantly said, knowing, again, I'd resist.

It's a rare occasion when I obey, but my range of motion had declined significantly enough- and my quality of sleep was dreadfully impaired- that I acquiesced. Fast forward two more weeks...

"What are my options here... I have options, right? I said, firmly, to the surgeon. He explained that my torn rotator cuff was exacerbated by "frozen shoulder"... that is, I was so protective of the wound, that scar tissue, a capsule, formed around the injury that precluded any movement whatsoever.

I threw my head back and laughed out loud, immediately seeing the metaphor for grief.

"Of course, oh my gosh, of course!" I blurted loudly.

"What?" he asked, looking at me with furrowed, questioning brows.

"Nevermind," I said seriously, coming back to that moment.

Surgery - and the successive 4-6 month recovery - was clearly not an option for me, even if it meant I could circumvent some pain.

But by this point, literally, I could not lift my arm two inches. He did say that on occasion, these tears seem to be able to heal with physical therapy and time... now there's a thread of hope to which I can tie myself. And tie I did.

I left the surgeon's office frustrated and disappointed but with a gaunt taste of optimism. Time and some hard work. I knew the path.

Fast forward yet again. The first few sessions of physical therapy, I wanted to quit. I wanted to run straight into the operating room. The pain of every movement, every stretch... oh goodness, just thinking of it now brings back that acute pain. Had it not been for the compassion, patience, and support of a wonderful PT named Dave, I might not have made it.

But I trusted Dave. I trusted my body. And I trusted my capacity to hold the pain.

Slowly, slowly, slowly - week after week - my body released itself to the pain. It surrendered. The muscles, once paralytic, were finally thawing. Dave would press into a muscle that was tight, gripping me. He'd hold  his fingers in the very deep place of the pain. Tears would fill my eyes. He'd remind me to breath. I'd say, "I can't. I can't." Yet, I did, I did. And then moments later, the muscle would release, relax, and let go.

Every week I went to therapy, I felt like I was in an intensive course about grief.

Fifteen weeks into physical therapy, I regained 90% of my range of motion. But it wasn't without a great deal of suffering.

Now, it's ten months post fall. Without surgical intervention, I've managed, somehow, to heal this broken shoulder. I'm back to all my old tricks- wheel, down dog, even side crow, headstands, and a four-minute plank, longer and better than before the injury! And I can use both hands to put away the dishes.

Beyond that reward, though, my sage body had given me the gift of insight, circumspect, and validation.

Pain, as Rumi said, is the great messenger, and it had sent the message. My body and my heart, the great receivers of the message, listened.

It took a long, long time to heal a simple injury, one that was purely physical.  How much longer, then, would it take to heal a shattered heart? The death our Beloved is an inviolable, hallowed injury. Yes, it is, and it is an existential wound that surely takes a lifetime and beyond...

"The healing from the pain is in the pain."  
-Rumi


Sunday, September 21, 2014

Remourning


On July 27, 1994, my world fell silent.

And on July 27, 2014 I fell silent.

I did not blog about what it was like to be the mother of a child dead for two decades.

I won't be blogging about it much today.

What I wanted to share is that twenty years is a long time to miss someone.  Twenty years is a long time to feel and think and wonder about someone you cannot touch, or hear, or see.

Yet the love I have for her, my dead daughter, has not waned.

And on special occasions, death anniversaries, and sometimes on just an ordinary day when the sun is shining and the birds are singing and the clouds are floating - sometimes on a day like any other - a pang will strike at my heart, and I feel the collapse of a moment around me.

No, not often as in the early days. No, not lasting as in the early days.

Still, it comes. It is how I remourn her.

Remourning. Yes, a made-up word, as I often like.

Here's what people don't often know about traumatic grief: That long past the early days, grief's shadow still remains. It lurks and lingers. It seduces and drags. It is the feared enemy, the beloved companion, that never leaves.

It calls for us to have a moment with Him. To remember. To relieve. To reclaim. To remourn.

And for all those things, even when they sting twenty years later, I am thankful.




Thursday, August 14, 2014

The Well of Grief: Public Loss, Private Tragedy

Photo Credit Jane Ray Frog Prince

Those who will not slip
Beneath the still surface of 
the well of grief

Turning downward into its black water
to the place we cannot breath
Will never know the source from which we drink
the secret water, cold and clear

Nor find in the darkness
glimmering
the small, round coins thrown away
by those who wished for something else.

-David Whyte

There are many despairing people in the world. And sometimes, those despairing people complete suicide. It's a hard thing about which to speak- suicide- unless, of course, a celebrity dies. Then, everyone is an expert.

I've been watching social media commentary recently, and I'm reticent to speak about Robin Williams,  a man I never knew personally, except to extend my most profound compassion and empathy to him, to his family, and to all those who do know and love him.

Since 1996, I've spent  more than 35,000 hours working directly with traumatized and grieving parents, grandparents, siblings, and children, one of the most vulnerable populations in the research. Many, at least initially, feel hopeless and desperate. Their children and spouses were murdered, they lost 2, 3 or 4 children, sometimes in one tragedy, their much-loved babies died suddenly, their precious children endured months or years of painful cancer treatment, their children died as a result of an unintended accident, sometimes caused by a parent. Oh the anguish!  They sit on my couch and share things with me that they cannot - and would not - share with anyone else. They bare their souls, the innards of their suffering and despair.

We turn toward the blackness, together, we speak honestly with one another, we explore the existential and axiological questions about mortality and angst. We review details of their chid's death (and sometimes their child's dying process), we look at photographs together, sometimes of a death investigation scene, we go through baby clothes and locks of hair, and many, many, many tears are shed in the corner of my off-white, agreeable couch.

And, some of those with whom I sit have experienced the death of their precious, beloved child or spouse to suicide, one child as young as eight years old.

I've also spent a great number of hours for the past eight years researching and publishing empirical studies on traumatic grief.  Both my role as a professor and as a counselor have cultivated within me a sense of wonder about how one endures this loss, and other losses, integral to the human experience.

What do we do when we cannot understand another person's actions? We talk. Too much. About things we cannot possibly comprehend. And we make guesses, postulations that often hurt.

Yet, another something strange happens as a culture when a celebrity dies, particularly traumatically, or in the case of highly publicized tragedies. Many are mesmerized. Now, we are able to talk about trauma and death, at least temporarily, and there is often a public outpouring of attention and shared grief. Why don't we stay engaged, continue to talk about death, loss, and human suffering, and continue to extend our compassion beyond our brief attention span? Becker tells us why here.

I remember, explicitly, Princess Diana's death and the millions who watched her funeral as it was recorded for television viewing.  Oddly, the same week a concerned woman called me, desperately meaning well, because her sister - whose baby died during birth - wanted to video tape the funeral. She felt it macabre, abnormal, and wanted me to convince her not to do it. I, very gently, inquired, "Did you happen to watch Diana's funeral?"  It an instant, she got it.

This is the occasion where the public invokes a false sense of interpersonal connection to a stranger whilst disconnecting from the one they actually know and love. Strange.

And this is why there are countless 'experts' and laypeople judging the recent tragedy involving Mr. Williams from behind their windows. Meanwhile, many other, non-celebrities, are also being judged from a distance every day, their families subject to ridiculous banalities people tender about loss, particularly when disenfranchised. These commentaries are likely to help no one, not those who are in a moment of suffering and contemplating suicide and not families who, themselves, have endured this particular type of traumatic grief.

When we are frightened and in pain, we need others with whom we can be honest. We need others who can enter the abyss with us.  We need to reach out to someone who is safe, who will not judge, who will not shut down or shun our pain. We need someone there for the long-haul to slip beneath the well of grief, with us, and let us, when we are ready, find our glistening coins at the bottom. And, when we are hurting this much, we may need to borrow, muster, or scrape the   courage to actually reach out to others. But please, let's not foist blame on anyone. This is complicated, and many variables beyond our knowing need to be considered.

If you want to help, you need not be a therapist. You can listen deeply, non-judgmentally. You can offer an open and compassionate heart, giving them a place to be honest about their pain. You can share in their suffering so they do not feel so alone. You can help them feel that they belong. You can invoke minute amounts of hope just by loving them, without being patronizing.

We cannot, certainly, save every life. What we can do is be kind, really see one another in this lost and busy world, and consider the ways in which we publicly speak about traumatic death, those from suicide, homicide, baby/child deaths, and premature conjugal deaths.

This is someone's Beloved One. This is someone's Beloved One. This is someone's Beloved One.

***************************
For more information about suicide intervention and education
you may contact CASPER
or to talk with someone immediately in the U.S.
1.800.273.TALK

My new book on traumatic grief now available here.
If you cannot afford it and need it, please contact me.

If you are looking for a clinician or paraprofessional
trained in our method of traumatic grief counseling, please visit here

To become trained, also visit here





Tuesday, July 8, 2014

The Paradox of Suffering Take II


The day this article was released, my colleagues Megan Devine of Refuge in Grief and Dr. Geoff Warburton and I had a little discussion about it.

First, we felt the person who wrote the story and interviewed Dr. Turner needed to operationalize what she meant by "get over"... second, while we may not have presented the article in the same manner, Dr. Turner makes a great point, previously supported by my own research: How we are treated by others in acute grief - and in the aftermath -can impact our long-term outcomes.

On her acute crisis:  Denise felt angry with the paramedic for trying to tell her he knew best. "I was furious. I said to him, what are you going to do? Stop me from leaving the house?" What she now knows is that the professionals bereaved families have to deal with, and the wider community, have a very narrow frame of expected behaviour and outcomes for those who are bereaved when a child dies.   And about her surviving children on scene, "... they are treated as an irrelevance, when in fact they could be being psychologically harmed by the arrival of police response teams and social workers and the fact that the finger of suspicion is pointing at their parents. It's undermining at the very time families most need support."

Yes.

Yes.

Those who are "privileged" enough to have never experienced prior trauma and to have had supportive medical teams, investigators, partners, friends, co-workers and others through an experience of traumatic death seem better able to cope with the trauma, particularly in the long term. Whilst those with a history of trauma, those who were treated poorly by providers or in the community or by partners, and those whose children die in ways wherein society has judged value or worth (marginalized deaths in the literature) for example death during or before birth, AIDS, drug overdoses, suicide, homicide, or gang-related violence- may not garner as much social support and validation. The empirical literature is clear: these aspects of the meso-social system matter for grievers. The reductionistic and individualistic view is myopic when it comes to grave challenges of the human experience.

My three year long research on the Hutterite colony demonstrated the power of community, connection, and social support: It is increasingly difficult to endure traumatic grief alone and how others respond- with compassion or disdain or detachment or tenderness- matters. In fact, there is solid research showing that providers, professionals, and community members may mitigate the trauma around loss and set the tone for the entire experience of loss. And, sometimes five, six, or twenty years later, even other grievers forget the hell of acute traumatic grief and want to play cheerleader to the newly bereaved far too soon, often prematurely,  furor sanandi. So the question: Can you "get over" the death of a child (or any precious one?)? Well, here is the paradox...

I spoke of the paradox of suffering very carefully in 2011, and noted that I am wildly happy in my life despite Chey's death, my parents' early death, and the many deaths I've endured. Happiness, however, is not my goal, it's not something to pursue,  because the more I seek or grasp at happiness, the more elusive it becomes. In a Franklian sense, happiness must ensue as an outcome of a life well and authentically lived.  So if we are operationalizing "recover" or "get over" as laughing, feeling joy and happiness again, reconstructing and adapting to a new life without them, then of course, yes I believe that for most people it is possible. For me, in some ways I'm even happier and certainly more content and fulfilled than ever.

Ah, but, now we have to discuss the Western dualistic mind.

Because to be happy does not mean we do not feel the pain of grief or sadness, sometimes simultaneously. For me, often simultaneously. This is a huge mistake in Western thought. In fact, much of my work has been devoted to shifting that view to a more accepting, non-dualistic one: Beauty and pain, happiness and sadness, grief and joy can coexist. And we move in and out of both states. We need both states in order to transcend our place in the world.  One needn't decry grief or pain in order to be happy. One needn't decry happiness or joy in order to prove grief or pain.  So the invitation is to be willing to feel both the pain of grief and the beauty of love. Whilst sounding paradoxical, those are not mutually exclusive constructs in mindful cultures. This thinking is a trap of the West as we are often uncomfortable with uncertainty, pain, and paradox. And it is life limiting. My happiness is not contingent on things going my way, having no losses, no disappointments, and no more deaths. No, my state of mind, equanimous, is accepting of whatever I feel and experience, moment by moment, without trying to change it. This is my only guarantee to a content and satisfying life. Because for all of us, sufferings are inevitable throughout our lives. And so is glory.  We need not cling to either state, both are ephemeral.

And for me, a life of meaning is far more important than happiness, and contemplating death, grief- and love- grounds my life in meaning. A life of meaning is what gifts me happiness not my present or momentary emotional state, as the molecules of emotions are always moving and changing, even if ever so slightly.

As Rumi says, 'the healing from the pain is in the pain.'

Read that again: the healing from the pain is in the pain.

So, when it comes down to the question of 'getting over' child death, I prefer the concept of 'integration' rather than 'getting over' or 'moving on' or even 'getting thru.'  For me, integration promotes transcendence or transfiguration. As Jerry Sittser said, 'you don't get over these losses... rather they are folded into us as decaying matter into soil.'

And speaking of transcending loss, the Kindness Project is hosting its annual International #KindnessProject Day on July 27. Head over to the Facebook page here for a first-hand example of how beauty and pain and love and grief and joy and connection coexist. Bring Kleenex. Here is one example:


#KindnessProject in memory of Lila.
Today in honor of what would have been my baby daughter's fifth birthday, I drove around and left five gift packages at stranger's doors. They contained bubbles, etch-a-sketches, little candy bags, wildflower seeds, a small angel statue, and a $10 gift certificate to Starbucks. I hope my Lila brought a little light into the lives of five other families. She certainly brought the light into our lives too. Thanks so much for making this happen. My heart feels lighter even when I'm crying. I miss Lila with all of my heart. Thank you so much.

We hope you will join us on this day and everyday and share with others! Print your free Kindness Project cards here.  And feel free to share your thoughts about "getting over" the death of a child. You can email me at Dr_Joanne@me.com.







Wednesday, July 2, 2014

My Grief Theory: Black holes and novas

Photo courtesy of Chanelcast

"During expansion, dark energy -- the unknown force causing the universe to expand at an accelerating rate -- pushes and pushes until all matter fragments into patches so far apart that nothing can bridge the gaps. Everything from black holes to atoms disintegrates. This point, just a fraction of a second before the end of time, is the turnaround..."


I'm working on a paper on traumatic grief and its natural, uninhibited trajectory if we allow full inhabitation. "If" is a key word here.

Grief is not just a spiritual/existential, emotional/psychological, social, and physiological process. Grief is also an evolutionary process of expansion and contraction.

The expansion-contraction model is seen all throughout the natural sciences from physicscellular biology, and thermodynamics to immunology, physiology, and childbirth. The black hole is an enormous vacuum of contraction. A nova is the product of its birth.

Yet, it's never been applied to traumatic grief theory.

Still, I see this process enacted in grief when it's allowed to inhabit its own natural course. What does this mean?

The contraction of grief occurs when our attention and energy are pulled inward, our surroundings made smaller because, in the moment, we are overwhelmed. So we contract and tighten, emotionally, reserve our energy and attention and focus, very intently, on grief. And on self. In a moment of contraction, it feels as if our very survival may be in question. We may feel unsteady, unsafe, unheld, tenuous, desperate, maybe fearful, and yes, vulnerable. We curl up and hold our breath. We self-protect. The contraction will save us.

Contraction is not wrong or bad and needs not be controlled in nature. The contraction is necessary for the expansion...

Expansion comes with the deep in-out-breath, the period of, even minuscule, growth post-contraction. We grow 'larger', the tightness loosens, and we are more willing to venture out and explore, to take risks, to open and unfold. We are in a moment of trust, safety, curiosity, willingness, connectedness, openness, belonging, and maybe even hope. The expansion will save us.

Expansion is not wrong or bad and needs not be controlled in nature. The expansion, too, is necessary for the next contraction ...

I see the lifelong grief journey as a series of little- and sometimes big- waves of expansions and contractions.

For me, childbirth is the most salient, albeit painful, tangible metaphor: Without contractions, our child, like the nova, cannot be born. Contractions are excruciating. Indescribably so. Yet, it is this tightening that opens the cervix for the baby's birth. It is this process that inhibits postpartum hemorrhage. It is through this process that expansion, and transformation, can occur.

And, during contraction, it is essential to have those who accompany us through our most painful contractions so that when we arrive at our pique, we can turn and look into the eyes of a loving other, pause, and hold through the other side of that pain. During expansion, it is essential to remember our contraction, learn from our contraction, cultivate trust in self and other, and maybe even turn toward another in contraction.

Yes, in grief, we must have both contraction and expansion to truly have- to inhabit- our grief. When one does not have both contraction and expansion, we cannot make it to the other side of that pain, and all that remains stagnates and does not move. In fact, the word emotion has roots in Middle French (c 1500s) and means "to stir up" and "to move".

Indeed. Contraction only will leave us unmovable- paralyzed with pain for the duration of our lives, fearful of love and life and terrified of more pain. This is a kind of Death for us. Expansion only is a futile endeavor as well, mostly because it is a ruse. It is often a state of self-delusion and inauthenticity that will leave us unsatisfied with our identity, soul-less, and worn out from persistent pretense. The natural course of grief, as in nature, is contraction-expansion-contraction-expansion-contraction-expansion.

Disintegration first. Reintegration follows. Over and over. And over and over. This is the path of natural, uninhibited grief.

This is the wisdom of the Universe, the wisdom of your body, the wisdom of your heart.

Trust it, and it will save you.



*****

Becoming...

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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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