No Words for Such a Tragedy

Beginning yesterday, just after my previous post about my work with a child homicide survivor, my phone lines and emails have been chaotically inundated with fallout from the mass murders in Connecticut.

I want to say publicly: I have no answers for such trauma. I have no directives, no real consolation. What can one offer at a time like this?

I will not publicly bring people together in a formal way without the express permission of the families affected by this. In my humble opinion, to do so without their consent is an overstep that may not be appropriately sacred for such a horror.

What I can offer is that people take this time to understand what it means to be traumatically bereaved, for self and for other.

What I can offer is some wisdom that comes, not from the DSM or any other book or manual about how people should and shouldn't react in such a time of incomprehensible suffering, but from the wisdom of the ages and cultures and from the bereaved themselves, the initiates:

Be careful of the questions we ask.

Be mindful of how we speak of this to others and to our children.

Be aware of how we show up in the world because of this.

Be circumspect about the ways in which we publicly mourn and share information.

Be sensitive to the suffering of these families by honoring their privacy.

Be attentive to our own losses and how this type of trauma reignites our sense of vulnerability and grief.

And so, quietly, quietly, quietly...  this is my way to pause and honor the families and children who were murdered and assaulted in their schools in both Connecticut and in Nanping, China, both on the same unforgettably painful morning on opposite ends of the globe:

I will sit in meditation and prayer for them. I will light my candle for them and burn sage. I will set intentions of kindness and compassion while holding their pain. I will pay attention to my words, my deeds, and my thoughts.  I will hold them all in my heart, leaving space for whatever of my own emotions may rise and fall in the aftermath of the unspeakable. I will be still, for them.

Then, if and when the families are ready to speak about their losses, we will be there to embrace them with unconditional love and allow them - perhaps join them - to honor their children in the way they want, according to their own way... as those of you who have suffered this type of loss know, 

time alone does not heal, contrary to popular belief. And they will likely need much support in the coming weeks and months and years. A parent's grief is timeless.

For the providers who have contacted me around the world and want to know how to support bereaved parents, your full presence and civic love is the greatest offering of all.  Here are some words of wisdom, not intended to direct or command, but rather intended to get us thinking about the ways in which we care for others:

We invite you:

We invite you not to:

Show them your unconditional love and support for as long as they need it, even years later. Do ask, "How are you really doing?" Do remember that you can't take away their pain, but you can share it and help them feel less alone. Do let your genuine concern and care show. Do call the child by his or her name. Do treat the couple equally. Fathers need as much support as mothers. Do be available...to listen, to run errands, to drive, help with the other children, or whatever else seems needed at the time. Do say you are sorry about what happened to their child and about their pain. Do accept their moods whatever they may be, you are not there to judge. Be sensitive to shifting moods. Do allow them to talk about the child that has died as much and as often as they want. Do offer practical aid or just drop off meals at the front door (careful not to disturb them). Do talk about the special, endearing qualities of the child. Do give special attention to the child's brother and sister--at the funeral and in the months to come (they too are hurt and confused and in need of attention which their parents may not be able to give). Do reassure the parents that they did everything they could, that the care the child received was the best possible. Do put on your calendar the birth and death date of the child and remember the family the following year(s). Remembering with them is important. They will never forget. Do extend invitations to them. But understand if they decline or change their minds at the last minute. Above all continue to call and visit. Do send a personal note or letter or make a contribution to a charity that is meaningful to the family. Do read literature from the real experts (parents themselves) about the grief process of a bereaved parent to help you understand.

Don't avoid them and don't be afraid to talk to the parents. They do not have a communicable disease- they are mourning. Don't be afraid to ask about the deceased child and to share memories. Don't think that the age of the child determines his or her value and impact. Don't be afraid to touch those who are mourning, as it can often be more comforting than words. Don't avoid them because you feel helpless or uncomfortable, or don't know what to say. Don't change the subject when they mention their child. Don't push the parents through the grieving process, it takes a long time to heal and they never forget. Don't encourage the use of drugs or alcohol. Don't ask them how they feel if you aren't willing to listen. When in doubt, don't say anything. Just be present and listen to their pain with love and compassion, nonjudgmentally. Don't say you know how they feel. Don't tell them what they should- or shouldn't- feel or do. Don't try to find something positive in the child's death. Don't point out that they have their other other children. Don't say that they can always have another child. Don't suggest that they should be grateful fo their other children. Avoid the following cliches: "Be brave, don't cry." "It was God's will" or "it was a blessing." "It's time to get on with your life. You have to life for him/her." or "He/She wouldn't want you to be sad." "God needed another flower or angel (or whatever) in his garden." "At least he/she wasn't older." "You must be strong for your other children." "You're doing so well." or "You're so strong!" "You're young, you'll get over it." "Time will heal."

Touching the Holy

We have only one reality, and that is here and now. What we miss by our evasions will never return, but if we squander ourselves, then too we lose being. Each day is precious: 
a moment can be everything.

Karl Jaspers

A few months ago, I began working with a beautiful Native Gila woman whose six-year-old son was murdered last year. With her permission, I would like to share this spirit stick and sage wrap she made for me and a handmade owl icon, in recognition of our very sacred and painful grief work together.

And this is the spirit stick prayer in honor of her beloved son, J:

The Making

As my hands wrap this leather around the wood 

I remember your hand in mine

Fingers entwining with mine

And do you know, I would jump across to the other side if I could catch you?

These four directions to which I raise my hands

These clouds that I stare at, 

And the wind that brushes across my skin,

It must be you

And do you know, I would jump across to the other side if I could catch you?

I hear your voice in the water that rushes by

I see your reflection in the sun that shines in my eyes

The beauty of it all brings me to my knees

And do you know, I would jump across to the other side if I could catch you?

The moon is shining for you and the stars light up the sky

As I wrap your four directions into my soul

And do you know, I would jump across to the other side if I could catch you?

And this is her email to me:

My father- he taught me to make these...the wood has been buried in the earth by the river area on my Rez...I buried the wood shortly after J died...it is Cottonwood... it's been buried for a year and now I have it with me...I need and want to pass it on -  this is what I need to do...I have an owl feather that I would like to attach to it...owl feathers are rare (the owl was not harmed) but there must be a reason that I have received this feather...we attach the feather of the bird of who will guide my son or who represents his spirit...and I thought of you Dr. C and your connection with the owl... it's the right way I believe for you to have it...maybe my son in my dream with you he telling me I can tell you everything... and it feels good to finally tell someone...thank you from my heart.

Wow.  I wept. For her, for her son, for the pain she feels, and for the connection we share in grief.

The true healing in the "I-Thou" relationship (Buber) cannot be contained in the pages of a book or in a manual or in numbers or digits assigned by outsiders.

"What we miss by our evasions" and when we "squander" with both self and other, "we lose being."

Thank you dear mother of J for inviting me on your journey. It is a journey I wish we never had to take.

Thank you for your willingness to entrust me with him and for your open, albeit shattered, heart.

*Our hearts go out to the families in Connecticut and in China whose beloved young children were murdered today.  The death of a child to homicide is an unspeakable, incomprehensible loss. We share in your sorrow, across the land, beyond the waters, and carried on the winds into eternity.*

The Death of Grief, the Birth of Mental Illness

For immediate release December 4, 2012

Dear MISS Foundation families, providers, and supporters,

We are saddened and disappointed by the recent announcement that the DSM-5 task force has finalized the decision to eliminate the bereavement exclusion from the Major Depressive Disorder diagnosis in the upcoming edition of the manual. This move will allow clinicians, including counselors, general physicians, social workers, and psychiatrists, to diagnose a major mental disorder in bereaved parents and other grieving individuals as early as two weeks following the death of a loved one should they meet the DSM-5’s criteria for depression. Importantly, many of you will recognize these criteria which include sadness, feelings of emptiness, crying, sleep and weight changes, guilt and regrets, and loss of interest or energy. Yet, all of these symptoms are quite common in grief, and particularly after the death of a baby or child which evokes enduring and intense reactions in parents.

This move has personal implications for the MISS Foundation. The DSM-5 change increases the likelihood that grief will be misdiagnosed as Major Depressive Disorder in the most vulnerable of all populations.¹ The possibility exists that bereaved parents and other grievers will be mistakenly treated for a misdiagnosed mental disorder. Recent trends suggest that the most common form of treatment offered for this disorder is psychotropic medication.^2-3 While some medications may be effective for some forms of depression,⁴ there is no sound evidence that they are effective for grief. Research shows that bereaved parents are already medicated earlier than can be justified by current evidence.^5-6 We fear the DSM-5 change will exacerbate this trend and cause even more grieving individuals to be prescribed medication for symptoms which are actually a normative response, despite the lack of evidence to support this practice and a lack of information on how such medications may interfere with the grieving process.

The MISS Foundation has actively opposed this proposed change in DSM-5 and will continue to do so. You can read Dr. Joanne Cacciatore’s initial blog post which went viral in March of 2012 on this topic here.  The first open letter outlining our concerns sent to the American Psychiatric Association in March can be read here and another letter sent in April can be found here. Finally, in October the MISS Foundation issued a formal letter on behalf of the organization and can be viewed here. Finally, many links to research and articles about this issue can be found in this blog entry at the end.

We issue a caution to our families: We urge bereaved individuals to be informed about what this change could mean when seeking help from medical and mental health providers using DSM-5, scheduled to be published next year. Should you have concerns about the quality of medical/mental/emotional care you are being provided, please speak with experts who can help guide you. Get help somewhere, indeed.

Please be assured that many other parents are experiencing the same immense suffering and that you are not alone. Seek solace through skilled and highly trained providers who truly care for you and are willing to walk with you through your darkest times: providers who understand the death of a child as life’s worst tragedy and who will be truly present with and available to you. Seek solace through like others in support groups, online support, and through your community.  Seek solace in spirituality and nature and books that help you to cope as you travel this overwhelming road. Seek solace through self-care and compassion. Seek solace through others who are unconditionally loving whether that be your partner, family, children, animals, or your faith based community. Seek solace through contemplative practice such as prayer, meditation, and quiet time and also through action in service and kindness toward others.

We issue an ardent appeal to providers: The bereaved are a vulnerable population. Please, be mindful and conservative in the issuance of diagnoses and medication, and educate yourselves in evidence-based practices as well as culturally influenced interventions. Take personal responsibility to learn what is truly normal, not pathological, after a traumatic death. The DSM-5 gives you much power and influence over the life of another. Please do not take this responsibility to “do no harm” lightly.

Dr. Joanne Cacciatore, Founder                                           Kara Thieleman, MSW, PhD Student         

Karla Helbert, LPC, Facilitator                                              Dr. Melissa Flint, Clinical Psychologist                    

Jennifer Soos, MFT, Facilitator                                             Dr. Trish Wonch Hill, Policy Analyst

Barry Kluger, CEO                                                                 Kelli Montgomery, Executive Director

Yasaman Parsi, Grief Counselor                                          Rebecca Ong, MSW, Grief Counselor

References

1. Wakefield, J. C., & First, M. B. (2012). Validity of the bereavement exclusion to major depression: Does the empirical evidence support the proposal to eliminate the exclusion in DSM-5? World Psychiatry, 11(1), 3-10. doi:10.1016/j.wpsyc.2012.01.002

2. Mojtabai, R., & Olfson, M. (2008). National trends in psychotherapy by office-based psychiatrists. Archives of General Psychiatry, 65(8), 962-970. doi:10.1001/archpsyc.65.8.962

3. Olfson, M., & Marcus, S. C. (2010). National trends in outpatient psychotherapy. American Journal of Psychiatry, 167(2), 1456-1463. doi:10.1176/appi.ajp.2010.10040570

4. Kirsch I., Moore, T. J., Scoboria, A., & Nicholls, S. S. (2002). The emperor’s new drugs: An analysis of antidepressant medication data submitted to the U.S. Food and Drug Administration. Prevention & Treatment, 5(1), 23a. doi:10.1037/1522-3736.5.1.523a

5. Cacciatore, J., Lacasse, J. R., Lietz, C., & McPherson, J. (In press). A parent’s TEARS: Primary results from the Traumatic Experiences and Resiliency Study. OMEGA.

6. Cacciatore, J., & Thieleman, K. (2012). Pharmacological treatment following traumatic bereavement: A case series. Journal of Loss and Trauma, 17(6), 557-579. doi:10.1080/15325024.2012.688699

Link to this article here. Please share far and wide with others.

Revolution on Standby: Bereavement and the DSM-5

“Do not close your eyes before suffering. Find ways to be with those who are suffering by all means... awaken yourself and others to the reality of suffering in the world.”
—Guatama Buddha

As the presidential election approaches, there is a quiet revolution on standby... 

We will not remain silent on behalf of the suffering. 

American Psychiatric Association
Dilip Jeste, M.D.
1000 Wilson Blvd
Arlington, Va 22209

Dear Dr. Jeste,

On behalf of the MISS Foundation's 75 worldwide chapters and our many constituents, our board of directors, and our advisory board, we write to publicly and emphatically oppose the proposed removal of the bereavement exclusion in the Diagnostic and Statistical Manual version 5 (DSM-5). 

After lengthy evaluation by many on our clinical team and by the experts, our bereaved parent members, we have concluded that there is no empirical standing for the change, and this proposal not only contradicts good common sense but also rests on weak scientific evidence. In addition, we feel that bereaved parents are at an increased risk of being misdiagnosed with Major Depressive Disorder.  The literature is clear: long-term psychological distress is common in this population and other populations suffering traumatic deaths. The psychological distress in the bereaved parent population endures for much longer and is much more intense that other types of bereavement, yet this is congruent and appropriate in anachronistic loss (see Sanders, 1979; DeFrain, 1986; Qin & Mortenson, 2012; Cacciatore, Lacasse, Lietz, & McPherson, in press). Thus, we oppose its pathologization. As an advocacy organization, we feel that the DSM 5 proposal is radical, unnecessary, challenges what it means to be human, and is a dangerous move for our families who are already vulnerable to inappropriate and misguided psychiatric care. 

The DSM-5 would require a distinction between normal grief and depression shortly after the death of a loved one. This is often impossible to discern for even the most experienced clinicians.  This then increases the likelihood of false positives- and may cause further harm to an already vulnerable population. The proposed footnote will never satisfy our concerns nor provide enough assurance for the protection of our very vulnerable grieving families.

Should the DSM-5 stubbornly ignore the evidence and the mounting professional and public opposition, our only alternative will be to call for more direct action. We will join a concerted boycott against the use of the DSM-5 in treating bereaved families facing the death of a child.  We will make our outcry very public and warn our families and clinicians worldwide of these dangers. 

On behalf of hundreds of thousands of bereaved people around the world, we implore you to reverse this poorly conceived and unnecessary decision.  We await your response.

Barry Kluger, Chief Executive Officer                                      
Joanne Cacciatore, PhD, Chairman
Kelli Montgomery, Executive Director

-------------------------------------------------------

If you'd like to understand more about this history of this open letter, please follow the links below in order:

1. http://drjoanne.blogspot.com/2012/03/relativity-applies-to-physics-not.html

2. http://drjoanne.blogspot.com/2012/03/open-letter-regarding-dsm-5.html

3. http://drjoanne.blogspot.com/2012/03/bereavement-and-snorting-seaweed.html

4. http://drjoanne.blogspot.com/2012/04/96-800x600-normal-0-false-false-false.html

5. http://drjoanne.blogspot.com/2012/05/dsm5-mdd-and-reliability.html

6.  We also have some agreement from within the circle of psychiatry:
     http://www.psychiatrictimes.com/mdd/content/article/10168/2101460



-------------------------------------------------------

A letter from my colleagues at GRI to the APA:

The Grief Recovery Institute Educational Foundation, Inc.

P.O. Box 6061-382 - Sherman Oaks, CA 91413

Phone: 818-907-9600 Ext 12 - Fax: 818-907-9329

November 2, 2012

American Psychiatric Association

Dilip Jeste, M.D.

1000 Wilson Blvd.

Arlington, VA 22209

And via email: djeste@ucsd.edu

cc: jlieberman@pi.cpmc.columbia.edu  rogerpeele@aol.com

Dear Dr. Jeste,

We write to you as the principals of The Grief Recovery Institute Educational Foundation and on behalf of its extended family of 5000 trained Grief Recovery Specialists in the United States and around the world; and, as the keepers of a sacred trust with 500,000 people connected to our organization. We are aghast at the proposed deletion of the Bereavement Exclusion from the DSM5. We also write to you on behalf of the many millions of “grievers-to-be” who will be incorrectly diagnosed and buried under an avalanche of inappropriate pharmaceutical intervention.

Grievers have a difficult enough time in our society which consistently tells them not to feel bad or sad when those feelings are the primary and logical emotions attached to the death of someone meaningful to them. It gets worse when medical and mental health professionals are encouraged to pathologize normal grief as MDE. If that is allowed to happen, a perilous line will have been crossed. [Note: We believe that any good practitioner will already have identified “at risk” patients whose reaction to a death might plunge them into an pre-existing depressive condition, and react appropriately.]

Three critical points:

1. We understand that the field trials used to justify many of the proposed changes in DSM5 are deficient. That not only represents “bad science” but also weakens the APA’s increasingly shaky foundation. Credibility being what it is, you jeopardize the legacy of the prior DSMs and threaten to commit unintentional organizational suicide. Once you lose your cred, you’ll never get it back. And with it will go millions of dollars from non-sales of the book no one will wantor need.
2. The proposed footnote, while noble, does nothing to ameliorate our fears of misuse and misdiagnosis by untrained and unskilled doctors with nothing more than your criteria for a time-based schema to distinguish between normal grief and MDE.
3. We don’t know the level or degree to which those who have authored the Bereavement Exclusion deletion have had direct interactive experience with grieving people, but without being mean-spirited we can only guess it is minimal at best, and academic—not reality-based—at worst.

With 35 years in the field with many thousands of real grievers, we are the ones in the trenches. We are co-authors of The Grief Recovery Handbook and When Children Grieve [both from HarperCollins].

This letter is not a threat, but it does contain a promise.  If you insist on pressing forward on this collision course with catastrophe regarding the Bereavement Exclusion, we  will spare no effort to make it known that you have breeched your pledge to “do no harm.”

Sincerely,

Russell Friedman

Executive Director

and for

John W. James

Founder

"I'm having a baby girl" and a helicopter

It's been a week filled with the unexplainable.

Interestingly, just last week, I had a long discussion with some students about all things noetic, spiritual, and ineffable. We talked about how, in this material world, we sometimes have extraordinary experiences for which there is little or no scientific data to understand the how or why something happened. And why it is so important, as aspiring mindful clinicians, to accept those experiences as real for people. Because.they.are.real.

You know those little things, right? Seeing a butterfly at just the right moment or some kind of sign or symbol of your Beloved?

I've experienced many of these, and I usually, scientist-wanna-ninja that I am, try to explain them away empirically.

This time, like several other times, I couldn't.

I've sat with it now for more than 24 hours, and I am still in awe of the experience.

It all started here with a client of the MISS Foundation whose little boy died almost 1-1/2 years ago. She has two surviving sons and is currently in her second trimester of a subsequent pregnancy.  I haven't actually seen her in person for several weeks because she's been traveling.

Here is the email I sent her, and I'd like to note the time:

From: Joanne Cacciatore

Subject: WTH?

Date: October 18, 2012 6:45:09 AM MST

To: Dr. Jo's client who will remain unnamed

                 ...I dreamed we were getting into a helicopter.  You, me, your two living boys, and a little girl (who I had never seen). The little girl was very cute.  She looked like your son who died.  Then we all got into the helicopter... and we took off in the helicopter to go see your son who died... Then I woke up.  Wow.  

At 10:30 am, just a few hours later, I got a phone call from this beautiful mama, and she was crying. Really crying. She had received my email. 

"I'm having a girl, I'm having a girl!" she said sobbingly.

"Wait, what?" I said in disbelief.

"I'm having a baby girl!" she repeated.

What I did not know when I awoke from that strangely-placed dream was that she was getting ready, at that very moment, for an appointment with her doctor and within an hour or so, would find out that she was having a baby girl.

We were both... well, frankly, speechless.  I sat with it all day. 

Late last night I sent another email:

"At any point, did you tell me about the doctor's appointment today? I mean, did you mention it and maybe it was in my unconscious?"

Her immediate reply:

"I didn't tell you about the doctor's appointment. I just made it last minute..."

I don't know how to explain this but I know it happened. 

What is the nature of reality? Why do these things happen? What does it mean about non-materiality? 

I have no idea.

But for centuries, mystics have understood the meaningful power of synchronicity.  From near death experiences to to meaningful coincidences to just plain unexplainable phenomena, scientists and theologians have grappled to understand how and why these things happen.

I'm remembering the night Elisabeth, my best friend and mentor, died in 2004. Just before her death, she told me when she died, she'd send me a sign that she was "dancing in the stars". 

This is an excerpt I wrote from the book about her, Tea with Elisabeth:

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

I came home the night of Elisabeth’s funeral services exhausted and aching. I already missed her so much and felt grief’s grip around my chest.  Around 11 p.m., I went onto my front patio and sat in my rocking chair. I leaned my head back and began to sob, talking to Elisabeth in my mind. With tears rolling down my cheeks, I asked her for a sign- for a very clear sign- I asked her for something like a shooting star, not really expecting anything miraculous. A few minutes later, I opened my eyes with my head leaned back and immediately saw a bright shooting star traveling from the east to the west sky... I realized that Elisabeth is, indeed, doing what she said she would be doing... dancing in the stars.

I still don't understand that experience either.

The connections we have with whatever is beyond this world may not be comprehensible within the context of our present minds. That's okay with me. 

But what I do know is that I don't have to understand these experiences. All I need to do is accept them for the beautifully mysterious. 

_ _ _ _ _ _ _ _ _ _ _ _ _ _ _

And, I can't wait to meet this special little sister. She is already adored and loved by all three of her brothers. And, I feel like, in some unexplainable way, I already know and love her.