Thursday, March 22, 2012

Bereavement and Snorting Seaweed

When I broke the silence, posting my first public statement with regards to the DSM 5's controversial plans for the bereavement exclusion, I had no idea the breadth and depth of its reach. Publicly, almost 100 comments on a registered site. Privately, hundreds and hundreds of emails came from the bereaved and the traumatized telling their painfully intimate stories.  Thank you all so much for your courage. I'm so sorry I haven't yet responded to each of you. I will, I promise.

Because I believe in he important of discussing vulnerability and shame, I've decided to give form to my own story as a bereaved mother in 1994.

First, let me set the stage. I had no history of mental illness, depression, or family suicidality. In fact, I had never been depressed a single day in my life.

Chey died in July of 1994. Let's just say I was truly struggling in the early weeks and months and even years after her death.

Let me tell you about the first few weeks. I was absolutely numb. In fact, if someone told me that standing on my head or snorting seaweed would help ease the suffering, I may well have followed their instructions. It was, in my best description, a zombie-like state, where I was utterly unable to think clearly and relied on others' wisdom to get me through the intolerably quiet nights and the unbearably chaotic days. I couldn't remember to brush my teeth or comb my hair. I felt out-of-body, often like I was floating. I was convinced I was in a horrific dream state. I was absolutely more vulnerable to the influence of others than I'd ever been. This, to me, is symptomatic of acute trauma, and this state lasted until mid-September.

By the end of September, when the emotional anesthesia had run its course and my pain became increasingly apparent in affect and behavior, everyone was concerned. And no one knew what to do with me. Many of the traumatic grief markers that are often confused for "depression" were a part of my daily existence: insomnia, significant weight loss stemming from compromised appetite, anhedonia, intrusive thoughts, nightmares, heaviness in my chest, difficult concentrating, feelings of panic and dread, longing and pining for my dead child, forgetfulness, envy, long periods of weeping, social isolation, persistent feelings of guilt and shame, and yes even thoughts of ending my own life.  My concerned family sent me to my first psychologist. After about 30 minutes together, he said I was "clinically depressed" and suggested psychotropic medications. Yet, I had a tingling sense that he didn't understand me, that he hadn't connected with me. I felt his quizzically judging gaze as I told him that I did not want psychiatric medication. I insisted that I was not depressed. I recognized this darkness as grief. I felt that her life and her death were worthy of my emotional and behavioral experiences, and the intolerance of those around me was baffling. This was not the answer for me. This was not my truth. Somewhere, deep inside me, I knew.

Still, he pressed me.  And still, I resisted.

I walked out of his office hurting more when I left than when I entered.

That encounter was a dangerous one for me, resulting in some unexpected outcomes which added to my grief burden.

It took months for me to realize that her death was my burden to carry, not anyone else's, and I would need to do it my way. And carry it I did. Clumsily, awkwardly, fearfully, mournfully, indeed.  But I carried it. Still, at the enduring behest of family members, there were other therapists I saw after him, and while not all labeled me as "depressed", I never felt that deep human connection. I would be the one-hit-wonder of therapy patients.

I did eventually meet two bereaved moms through a local support group, Compassionate Friends, who would just sit and listen to me. That was, by far, more therapeutic than any of the professionals I had seen to that point.  Mostly, I just needed someone to bear witness to my pain. Then, I began to allow the 'doing' to come from the 'being.' I started the Kindness Project wherein I began committing random acts of kindnesses for strangers anonymously. My heart was turning outward toward others, and I began to see the suffering of the entire world through my own broken heart.  Because the pain is so imbued with self-focus, perhaps a defensive type of narcissism, serving others provided an imperative toward a new paradigm. Slowly, the darkness lifted and I began to rejoin the world of the living.  And slowly, my family began to understand that this was an unending process I needed to experience.

The next year, I received a phone call at home.  A quavering voice on the other end of the phone turned out to be the first psychologist I'd seen.

He told me that he wanted to apologize to me, and that he was sorry for the way he'd treated me. Then, he told me the real reason for his call: his daughter died.

I went to his office that night and we talked. It was a very important turning point for me, a moment of perspicuity for us both.  He now knew. He was an insider. No, he agreed, I had not been depressed. He understood what this was, and his entire worldview had been irreparably altered.

Now, I realize that this is my story. Not everyone's. Only mine. What I did not realize was that I was the expert in my grief.  (Check this amazing story about patients as experts!)

But I've seen, literally, countless bereaved parents through the years and I've heard their stories of interactions with others. We have six counselors trained in mindfulness based interventions in our Phoenix offices, and they've heard the stories. In fact, we get the painful privilege of seeing them from the early moments of death to years, sometimes decades, later. To assert that mindful, existential psychotherapy is commonplace amongst providers of psychiatric care might be- well- a stretch.  Good bereavement care and competent interventions are a necessary social offering. However, time and time again, research demonstrates that the quality of the relationship between provider and client/patient is what makes the difference in outcomes.

Trained providers who are mindful (and especially those who practice mindfulness), humble, and present are a gift. Irvin Yalom calls this "the gift of therapy."  Truly, good therapy can be life-altering.  Conversely, inadequate therapy with an unskilled, unmindful provider can exacerbate feelings of aloneness and emotional angst.

But, when a child dies, even "good therapy" doesn't cure or fix. Good therapy is merely joining the sufferer in their pain, non judgmentally with full acceptance and compassion.

Some of my colleagues disagree with my position on the bereavement exclusion and I'm okay with that. Philosophical inquiry leaves plenty of room for discourse. But there are some misnomers: Some assert that a chemical imbalance in the brain causes depression so the two are not mutually exclusive. I agree that they are not mutually exclusive however to date, I have not seen, as Dr. Paula Caplan says, "a shred of evidence" supporting the chemical imbalance theory. I also disagree with colleagues who assert that we should, as a profession, acquiesce to systemic "labeling" merely because mourners can get help (need I remind readers that the DSM III "labeled" homosexuality as a mental disorder and that early psychiatrists also proposed another mental illness in the mid 19th century- drapetomania - a form of mental illness that caused African American slaves to run away from their "masters"?).  If the only way people can get help is to "label" them, then the system is woefully broken and we'd better get busy repairing it not further harming the vulnerable.  Finally, in our single minded quest for biological determinants, we must remember that psychiatry is not an absolute science.  Unlike diabetes or other biological diseases, there is no objective blood test that can definitively diagnose grief or depression. Rather, it's a field of value judgments and clinical prudence (or imprudence). And let's not forget that psychopharmacology as an isolated 'treatment' is gaining and psychotherapy is not; rather psychotherapy is "assuming a less prominent role"(Olfson & Marcus, 2010). I'll write more about this on another day as I do have an opinion on trauma focused practice.

For now, what I can say is that, for me, those nights on the closet floor curled up in a ball and those many days of skipped meals and the added burden of existential loneliness might have been more manageable had someone just been present and mindful with me.

And like the relativity, they can keep the label. Endogenous sadness is certainly nothing for which to be ashamed. But assigning that label to me was inappropriate, premature, and yes offensive. Let me restate something I said earlier in this article: I am not depressed now, nor was I ever. And almost 18 years later, I continue to grieve and mourn for my child because my love for her will never end. And that is, as they say, the price we pay for love. And yes, for that, I'd snort seaweed.

For those who'd like to read empirical literature, news articles, editorials, and public statements:

From Dr. Jack Carney, NY NASW:
DSM 5 Draft Revisions Continue to be met with Challenges
1984 and DSM 5 Revisited: Where are the Social Workers?

Journal of Mental and Nervous Disorders
Drs Wakefield, Schmitz, & Baer, 2011
Did narrowing the bereavement exclusion increase validity? Evidence from the National Comorbidity Study

Am J of Psychiatry
Boelen, van de Bout, & de Keijser, 2003
Traumatic grief as a disorder distinct from bereavement

Dr. Jerome Wakefield and Dr. Michael First
Validity of the bereavement exclusion to major depression

Omega Journal of Death & Dying
Hogan, Worden, & Schmidt, 2003/2004
An empirical study of the proposed complicated grief disorder criteria

World Psychiatry, Dr. Megan Brooks
The case for retaining the bereavement exclusion

Dr Phyllis Silverman, The Justice
Professor speaks on grief as an illness

Dr. Leeat Granek and Meghan O'Rourke in Slate
Is Mourning Madness?

Russell Friedman from the Grief Recovery Institute
Just Keep Saying No to the DSM 5

Dr. Paula Caplan
Association for Women in Psychology Addresses DSM5 Concerns

Dr. Lisa Cosgrove  and Dr. Sheldon Krimsky
Harvard's Safra Center for Ethics

Dr. Mario Maj, American Journal of Psychiatry
Depression, bereavement, and understandable intense sadness

Dr. Ramin Mojtabai, Archives of General Psychiatry
Bereavement related depressive episodes

Dr. Walter Reich, Oxford University Press
Psychiatric Diagnosis as an Ethical Problem

Dr Peter Breggin

Dr. Thomas Szasz

Dr. Loretta Kopelman

Gary Greenburg with Dr. Allen Frances
Wired: Inside the Battle to Define Mental Illness 

Dr. Doug Bremner, Emory University School of Medicine
New Questionable Diagnoses on the Horizon

Drs Jonathon Leo and Dr. Jeffrey Lacasse
The Media and Chemical Imbalance Theory of Depression

Asexual News

Dr Allan Horwitz and Dr. Jerome Wakefield
The Loss of Sadness: How psychiatry transformed normal sadness into depression

Dr Will Meecham, MD, MA
Mental Illness: The mistake of a lifetime

Alice G. Walton, Forbes Magazine
How medicalizing grief turns into dollars

National Public Radio, Boston
Warning: Doctors misread new depression guidelines

Finally, want to change your life? Participate in International Kindness Project Day
RSVP on Facebook

In addition, I've linked to many research journal articles in the original blog.


LeeatG said...

Thank you for this fierce and intelligent blog. There are two things that strike me in this post. The first is the power of community - the power of witnessing, as you say and how meaningful it is for another to simply sit with an acknowledge the pain of loss. The second is connected with the story of the psychologist who came back with the apology. Amazing story and another reflection of how important acknowledgment is in this journey.

Rae-babe said...

Thank you Dr. Cacciatore. I shared that first blog about the DSM V with a social worker and she disagreed with you completely. I, however, agree with giving someone the real support they need and not the wrong support that's right for the insurance companies.

pam bradley said...

'just needed someone to bear witness to my pain' so true! Awesome write up again Dr J. Keep up the good work, I apriciate all your foundation has done for me. Don't know if I would still be here.

Dr. Joanne Cacciatore said...

Thank you so much for reading and for your comments.


Dr. Joanne Cacciatore said...

Thank you so much for reading and for your comments.


Sara said...

Your words describing the condition of grief as something natural as opposed to pathologic have helped me IMMENSELY. Thank you, thank you, thank you. I will no longer strive to "get over" my grief. It is a journey.

Karin said...

I'm finally getting to post what I wanted to say before.

I remember shortly after our son Soren died, the funeral over, and we were left all alone, friends and family would occasionally call to find out how we felt, how we were doing. By and large, almost in all conversations, the comment, "Have you thought about seeing a therapist for your depression?", would be said. If not this comment, one similar. It would always serve to silence our sharing and conveyed to us that these people, who were supposed to be our family and friends, did not want to hear about our experience. They did not want to be our witnesses. They did not want to be part of the journey with us. They wanted us to 'get over' 'it'.

This kind of change to the DSM will only create more isolation, lack of patience and compassion. It's bad enough as it is!

As you know I am part of a historical dance group. One of our members lost his son last year. He wears a black arm band for balls and performances. It's historically accurate. It conveys, without any words, with pure symbolism, his earned place within the experience of grief. Whether always desired by the bereaved or not, symbols were used to show everyone around you that you were grieving, which served to remind them that they needed to use care when around you. (I've been reading a lot about this lately)

After Soren died, there was nothing symbolically about me that could tell others that I was bereaved. I had people ask me if I was 'still on holiday', or ask 'how's the baby!'. I even had someone say after they found out he died, "Oh well, you must be used to that by now." Really, it's other peoples reactions that make a person feel nuts!

Why, when our ancestors understood so clearly what it meant to be in mourning, is it so hard for policy makers to see the folly of this change? Their blind eyes frighten me.

Thank you again, Jo. Your insight is so important to me. Thank you.

Dr. Joanne Cacciatore said...

((((Karin))))) Thank you so very much for sharing this piece of your heart and your suffering. <3

Loraine Ritchey said...

I see a reflection of myself in your mirror- except food in my world fills the need for internal warmth- as bad as not eating .

Dealing with those that wound after the death of my son has been crippling - I have been amazed at my naivity- I never thought of cruelty, deceit and the desire of those for me to "move one" would be part of my world. I had always thought of support and a softening of hearts associated with death.

My son's "Dr." wife ( of one year) sent a note in my dead son's clothes 4 months after his death.

( note) she has now moved on.. no " depression classification" for her to worry about) did so immediately after his death- in fact her Dr. Mentor mentioned at the wake- you know you dodged a bullet there ...Chris could have been an invalid for many months had he survived this latest crisis.......... ah the "clinical thinking rises to the fore.

"The “note” came through the “mail drop” of my dead son’s belongings- how thoughtful was that? I am not sure why or what purpose she hoped to serve"

There was one sentence though that has caused me to ponder the meaning both from the usage of the English language but also the words “your intense love”
The whole sentence reads:

“I think your intense love for Chris shielded you from getting to know who he completely was".

What , I wonder, was her “base line” for the definition of a my “INTENSE love” I can only wonder if what seems natural to those that love and receive love unconditionally is not always understood by those who may not have had that experience.

What degree a mother’s love and should it be decided and negated by one who has never experienced it?

and follow that thought process of those posts and seguing to yours...

Why are decisions being made by APA that there is a time frame to "get over it" when they have only the cold clinical calculations labelling my "intense love" and the loss of the object of such love - my son - they have NO IDEA so I ask of them a similar question.....

What degree a mother’s grief and should it be decided and negated by those who have never experienced it?

Tears in November said...

Just to be understood, that is all I wanted when my son died. Not diagnosed, not drugged, not judged, not lectured on how to feel better or get better, not given a timeline to be "over it" (I'll never be). I just wanted to be understood. Unless you have experienced this, people just do not get it. What's even worse, they want to rush you to get better, (quite often for their own comfort because grief makes those on the outside looking in so uncomfortable), not realizing that there is no better, just forced acceptance that our child is not coming back to us on this plain of existence.
Thank you for sharing your personal story, and thank you for your voice. You let me know I am understood.


Dr. Joanne Cacciatore said...

It's shouldn't be too much to ask, right Paula? I'm so sorry... thank you for your comment. And thank *you* for adding your voice, for them.

WillSpirit said...

Personally, I think the points made here about how bereavement leads to pain in a natural and predictable way can be extended to other types of suffering that psychiatry labels pathological. There may indeed be brain disorders that cause some symptomatology, the most likely candidate being severe forms of schizophrenia. But much of what gets called 'depression' and treated as a sickness is really the natural outcome of life and its stresses. Sure, some people seem more susceptible than others to such disruption. But when a person comes from a traumatic childhood or has endured a great many adult setbacks, feeling sorrow is natural. It is not sick. There is room for healing and support, but the paradigm should be one of compassionate sharing of human difficulty, not reflexive labeling and medicating. Losing a child is a terrible, terrible blow and so serves to highlight the problem with treating sadness (aka 'depression') as a diagnosis rather than a response. Thank you for this insightful and vital message.

Dr. Joanne Cacciatore said...

Thank you for reading WillSpirit

LW said...

I only recently came across your blog and must tell you that it is quite unusual and powerful. I lost my son 4 years ago to a rare cancer caused by drugs he was taking to keep his ulcerative colitis in remission. Out of the blue. Diagnosed in July, dead in December. He was just 21, a junior in college. Your perspective is much appreciated. I have my own small blog and have sent the link to yours to other bereaved moms, and my own therapist (a bereaved mother herself). Thank you for your understanding and the courage to stay true to your love and pain.

Lisa Wendell

Dr. Joanne Cacciatore said...

Lisa- I am so profoundly sorry about your precious son. How terribly traumatic for you and your family. Sharing in your sadness... we are happy to send a family support packet should you want one? You can email in his memory <3

amourninmom said...

Thank you for your post and all the incredible work that you are doing. Death has always been a part of life which no one talks about.

Our first son was 14 weeks premature and had hydrous. He died at the age of 2 weeks in 2005. I swore that if another child of mine died I would be buried with them. In 2007 we had twins who are alive and well. In 2009, we were lucky enough to have another baby boy. He was full term and healthy. When he was 6 weeks old we kissed him good night. His heart stopped at 1:30 am.

I could not be buried with him - the twins need me here. I will never get over my sons' deaths. I am taking life day by day (sometimes hour by hour or minute by minute). Thank you again for being an advocate for bereaved parents.

Loraine Ritchey said...

I was sent this link from one of my readers a Dr. and it mentions your post

Anonymous said...

I lost my beautiful daughter in 1998 and every word you wrote could have been written by me. Thank you for understanding and putting this into words.

Susan Boone said...

I am astounded. After making an appointment at the urgent bidding of my family, I was diagnosed as clincially depressed immediately follwoing the death of my son in 2009. The psychiatrist promptly prescribed an anti-depressant. I left the office and threw the prescription away---along with any acceptance of the doctor's diagnosis. I never saw her again. I knew, inherently, that she was wrong. It felt appropriate to feel numb, hollow, and unfocused, along with the myriad other sensations I endured on a daily basis after losing Will. I still undergo periods of deep sadness and sorrow in the wake of that loss. I have found a therapist who is mindful and present...and connected. Together, we deal with the inevitable sadness that trails behind me as I trudge on in life.
Thank you so much for your work, for your tenderness, for your candor.
For the first time since losing Will, I realize that there is an entire community of people who have come to the same conclusion I did three years ago: grief is not the same thing as depression, and should not be treated as such.

Dr. Joanne Cacciatore said...

Thank you for sharing Will's story, a little, with us here. You need not journey this alone should you want sangha, community. There is no place more comforting than in the midst of those who have also suffered the unthinkable... I"m so very, very sorry.

Be Living Rock said...

Wow, thank goodness there are people out there like you whose wisdom and vast bank of knowledge demand there be more conversation on this oh so crucial subject.

Lisa Mer said...

I've read many pieces you've written and posted before but just today found my way to this post. Thank you for sharing your story and being a beacon of inspiration. Each encounter creates stitches in my heart...painful and healing.


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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