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
and
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

Iatragenic Helplessness in Authoritarian Psychiatry

Dr. Thomas Szasz

Ideology and Insanity: Essays on the psychiatric dehumanization of man

Dr. Loretta Kopelman

Moral Problems in Psychiatry: The role of value judgments in psychiatric practice

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

Another DSM Criticism

Ira McSwiney, Irish Examiner
Debate on antidepressants needed

National Public Radio
Is emotional pain necessary? 

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