Thursday, February 28, 2013

"Patient intubated- unresponsive- family distraught.."

"Patient intubated- unresponsive- family distraught.."

Those are the patient notes dated 11/01/01 as EMS and hospital workers desperately tried to save my mother's life. She was too young to die, too full of life, and she so wanted to see her young grandchildren grow up to start their own families. She would never get that chance.

My sister found her on floor of her home, pulseless and asystole, and had to endure the trauma of trying to breathe life back into my mother. I cannot imagine the scene. My father distressed and panicked, and my sister trying to save her life.

When we arrived at the hospital, we saw them as they wheeled her in, trying to resuscitate her. Hospital staff and medics were amazing, and they worked diligently, tirelessly to save her too. She was transferred to ICU in a coma, and on November 4, 2001, after consultation with many physicians including neurologists who determined she suffered sustained anoxic brain damage, we made the excruciating decision to end life support.

Her diagnosis? Arteriosclerotic cardiovascular disease with left ventricular hypertrophy, aortic atherosclerosis, bilateral pleural effusions, bilateral pulmonary fibrosis, pitting edema of lower extremities, pulmonary congestion, and bilateral arteriolonephronsclerosis.

This is something about which I've never spoken publicly.  But, it's time. I feel it. You see, there is a history behind my mother's death.

The year prior to her death, my mother lost 50 lbs.  At first, she seemed excited about the weight loss as she had a few extra pounds to shed. But it was effortless weight loss, and progressively she became thinner and thinner, until we were all very concerned. We ushered her to the hospital for tests, which they did, but they were unable to explain the expeditious weight loss. Indeed, historically it was not unusual for women's heart disease to be missed or mistaken for another disease or disorder because much of the research used to be conducted on men. And men's symptoms are different from women's symptoms.

Then the hospital requested a consult with a psychiatrist.

He diagnosed my mother with depression and anorexia nervosa. He sent her, then, to an inpatient facility that specialized in eating disorders.

I was furious.  Our family was confused:  They just wanted her to feel better, to be healthy again.

I fought with the psychiatrist in the hallway as anxious staff walked past hurriedly. I raised my voice, though apparently not loudly enough. I told him that I knew my mother, and that she didn't fit the psychological profile for either diagnosis. He asked if I had a medical degree and then suggested I "stick with the social sciences and leave medicine" to him. He was a condescending fuck.

So, he put my mother on a battery of psychiatric medications and she endured treatments that were inappropriate for her real medical condition.

She hated the inpatient facility, did not understand his assessment, and eventually checked herself out of the unit. But her condition never improved, and most professionals, following the psychiatric diagnoses, were now uncertain if this was a psychological disorder or a medical mystery. We'll never know what would have happened had she been further tested for her biological disease and received real treatment sooner rather than later, whether or not she'd have lived. Lesson to providers? Bow to your patients, to their families. Use your wisdom and your knowledge and your experience with a compassionate and open heart. Listen, deeply, to their concerns. Take a few extra steps, offer a few extra minutes. You are not omniscient, you are human. That, in fact, will endear you to us more than anything.

Do no harm.

Because this ugliness is what arrogance looks like. She died of congestive heart failure, misdiagnosed as something else. And these are the consequences of incompetent care. She would never get to see Josh play basketball. Or go to Cam's wedding. Or see Ari or Sissy graduate. She died.

And talk about the domino effect, my father died four years to the day later of what I'm sure what his broken heart.

"Intubated. Unresponsive. Family distraught." Still.


For Eric whose little life was harmed at the hands of an arrogant provider.

Deep bows to all those providers who exude compassion, humility, and loving kindness with their patients and families. You cannot imagine the importance of both what you do and how you do it. Thank you.

Saturday, February 23, 2013

Time for a New Tale: Diagnosis: 411.07, Privileged Dystopian Syndrome

It is time for a new tale.

I'm proposing a novel diagnosis for the DSM-6. Yes, 411.07, Privileged Dystopian Syndrome. I hope the APA will move swiftly and assemble a committee to review this new proposal. In fact, throughout recent history, there are vast examples of how this sociomedical disease has wreaked havoc on individuals and families.  More on this soon... bear with me.

I lectured in class yesterday about how far removed Western culture has gravitated from the center of our hearts.  What prompted this was an email I received from a client of the MISS Foundation.

I met with her for a few hours, provided some psychological first aid, perhaps, and bore witness to the immense pain she was experiencing over the tragic death of her beautiful 19-year-old son to cancer.  After our meeting, and not uncharacteristically, her story - her beloved child, resonated in my heart for days.

So, I sent her a card telling her how deeply I care, and I sent her a book I thought would be meaningful for her. A few days later, I sent her an email to check on her.

She responded with deep expressions of gratitude and an emphatic "You are AMAZING!" intended for me.

While I do so appreciate her sentiment, this is woefully overstated. Since when, in our history, does basic human compassion and kindness qualify as "AMAZING"?

I wrote back, thanking her; but indeed, it is I who feels tragically-privileged to have been invited into her sacred space where memories and pain and love for her son exist.

Really. How did it come to this?

How did it come to the place where loving another through their time of suffering is some sort of heroic or extraordinary performance of the human being? Is this not our natural state? Or, should it not be?

Back to my proposal for the DSM-6.

411.07, Privileged Dystopian Syndrome

A woefully self-absorbed sociomedical elitist system which is disconnected from the suffering in the world, causing it to keep others who are hurting at a safe emotional distance by pathologizing them, making them the "other", so as not to disrupt its own delusion of security. Often seems to be hubris-based disorder but is, in fact, rooted in deep-seated fear of vulnerability, extinction, annihilation, and death anxiety (Becker, 1970). This system often hides behind numbers, codes, and superfluous vernacular as a means through which it can mesmerize and enchant itself. In particular, normal, authentic human emotions are often medicalized in this syndrome as it helps the system feel more in control and powerful. It derives most of its gratification, valuation, and self-fulfillment, though transitory, from these pathological states, and takes pleasure when other, less powerful systems bow at its throne.

Intolerance for deep emotional expression; a persistent sense of entitlement for happiness at all costs yet with a nagging inability to actually ever experience such joy; persistent disillusionment of impermeability not to be interrupted by the psychological, social, economic, spiritual, and physical distress of others; forced detachment and disconnection often co-morbid with over-intellectualization; inability to experience compassion (from com- meaning to be with the other and pati- suffering); reactivity to high cultural variability resulting in the system's self-soothing (note that the primary resolution of such conflict is forced nosological labeling of said "other", hasty utilization of less sophisticated, laconic interventions, and the personification of a prescription pad as "best friend"); a tendency to prioritize economics over humanity; failure to recognize the collusion between its own existence and exogenously powerful stakeholders; a morbid preoccupation with monoculturalism combined with an unrelenting and maniacal desire toward social and emotional conformation of the masses; incapacity of the system to accept responsibility for the immense harm it has foisted on powerless others, from immigrants and minorities to women, children, and elderly to war veterans and the homeless. Oh, and let's not forget the grievers.

To date, the only known treatment for such a system is a well-informed, courageous, and educated countermovement. Oh, and human connection, compassion, and love.

Unfortunately, my profession, puts all the emphasis on genetics rather than the environment which of course is a simple explanation but it really takes society off the hook... if behaviors and dysfunctions are controlled by genes, we don't have to look at child welfare policies, we don't have to look at the kind of support we give to pregnant women, we don't have to look at the non-support we give to families...  and society becomes innocent, 
and we don't have to take a hard look at it and its role... 

-Gabor Mate, MD

Our ongoing reductionist view of physical and mental illness is killing us in more ways than we know.   And, the system is a danger to self and others. People are buying into PDS-induced disillusionment that normal behavior is somehow abnormal: For example, "bipolar disorder" in two-year olds (really parents? Aren't two year olds, by definition, "bipolar"?), schizophrenia as a life-long disease from which there is no recovery, and grief as precursor to serious mental illness.

Our sociomedical system is stagnate, it is sick, it is mentally ill, it is wounded, broken, diseased (dis-eased), and it costs us all in many ways. The system doesn't know it yet. But, often such serious illness isn't easily recognizable from the inside.

PDS'ers promulgate dangerous ideology, the slippery slope toward the automotonizing of our race: No touch. No tears. No apologizing. The pathology interferes with their ability to to be, uh, well, human. Doubt it?

Many years ago, we had to euthanize a much-loved family pet, Bandit. One week later, we received this from our veterinarian and his staff:

So, after the death of our pet, we received this beautiful expression of sympathy from our animal doctor. How grateful, how wonderful, how human.

Yet, after the death of my precious baby daughter in 1994, the hospital sent nothing. The psychologists and psychiatrists sent nothing (except a message which was clearly inappropriate and misguided: You are "depressed" and need medication). In other words, your grief has incited a mental illness). What is wrong with us? Is it that we cannot profit from caring? There are no lobby and special interests group, no cuts of legislative porks as perks for caring?

Whatever problem we are hoping to resolve or prevent- 
be it war, terrorism, economic inequality, marital disharmony, 
climate change, or addiction- the way we see its origins 
will largely determine our course of action.  
-Gabor Mate, M.D.

So, when the psychologist says to me: "You are mentally ill. You need medication. Maybe you should consider an inpatient program?" I can offer a dose of anti-PSD reality contained right on the pages of the DSM-6. No, no, no, you, Dr., are sick. You have a mental illness that came from the system within which you work. Here, let me show you (points with an authoritative finger):

You have 411.07, Privileged Dystopian Syndrome or PDS. It's not your fault. It's the system. It renders your psyche helpless in my presence, paralyzed by your own dis-ability. I'm so sorry that you are uncomfortable seeing me break down and cry in your office and that it disrupts your plans of a nice day.  I am so sorry that I'm using your entire box of Kleenex, the one that matches your pretty plaid drapes. I'm so sorry if my nasal and lacrimal discharge makes you nervous and your OCD compels you to walk out until I get my hysteria under control. I'm so sorry if I stain your shirt with my mascara and bad lip gloss. I am so sorry it makes you think about your own baby at home, sleeping in her crib, and the possibility that she, too, might die. Terrible, I know, especially for someone with PDS. My existence utterly undermines that self-created delusion of security and protection, doesn't it? Well, mea culpa.

A culture which does not tolerate grief is diseased. Yep, the system, itself, epitomizes mental illness. Sorta ironic, isn't it? And therein, lies the problem.  We are dealing with a system here, not a human being. I know, human beings make up the system. However, a system cannot be good or kind or compassionate. It's a system. It requires humans, who make up the system, to care. And if one person can foist responsibility for caring onto another in the system, then how is that healing connection made? A system is limited by its own homogeneity and homeostasis and boundaries and stagnation. This sociomedical system cannot feel. It cannot connect. It cannot care and thus it perpetuates its own dysfunction.

Bereaved people need, and deserve, our pause. They deserve heroic love and compassion. This should be the norm not the extraordinary. And let us not forget that, one day, we will all be bereaved. The healing cannot come from within the PDS-ridden system. The healing happens in the space between words, between people.

And so here is our alternate story, with a nod to the one and only Ivan Illich:

One day, if we continue to work toward curing the system, ridding it of its mental illness, then caring for another and deep connection with one another and loving each other through moments of tremendous suffering will no longer be the heroic.

It will be commonplace, it will be normal.

And we will all be healers, and we will all be healed.


This blog is dedicated to Blake and his mother. I hold you both in my heart. Thank you for inspiring me with your fearlessness and your courage and mostly your grief and love.

And to a spirited, spicy little monkey-teacher, Ronan and his fearless mom, Maya. Thank you Ro for  helping me speak my truth.

Tuesday, February 19, 2013

Until the Sun Itself Dies

13 years ago yesterday at 6:45 p.m., a young, frightened woman walked into my support group in Phoenix, Arizona. Her only son, Blake, just 17 months old, was killed by a woman who ran a red light. Katie almost died in the crash.

I can still remember the first time our eyes connected, and her pain seared into the marrow of my bones. Yet, even in that excruciating moment, so did the love.

Her pain was deep and unspeakable. Her love was deep and unspeakable.

The pain consumed every waking thought. So did the love.

I suppose today, and three beautiful rainbow children later, she might say that, now, the love is bigger than the pain- most days. Still, they are two sides of the same coin: love and pain. Life without Blake will never be as beautiful as if it would were he here. Of course.

And so yesterday, with a Kindness Project card in hand, Blake showed up in the world, in the realm of both the love and the pain, as the MISS Foundation community remembers him. And I will never forget.

This is for Katie and Blake and all the mothers and fathers and their children, gone far too soon.


Find out more about the Kindness Project, which began in 1996, and download free cards here. Share their love.

Monday, February 11, 2013

My spirit will come to you without shame

Thank you Sings in the Timber.

For Tashina Sioux Davis, always loved, always missed.

Saturday, February 9, 2013

A Brush with Death

The intersection where death left me, again

The sign

No person can confidently say that he will be living tomorrow.

Last Thursday, I was at a lunch meeting with a faculty candidate and three colleagues.  It was professionally pleasant and we ended by walking back to the Central Avenue building downtown that houses our school.  Across the street from campus is a coffee shop where I decided to grab an English Breakfast tea for my drive to the MISS Foundation offices.

I went inside and the line was rather long, so I decided to forego the tea.

I headed to my car and was walking north down the street toward the parking lot.  It was a beautiful February day in Phoenix, the clouds billowy and the warmth of the sun beamed on my face. I could feel my phone vibrating in my pocket but this day, unlike most others, I wanted to be present in the moment as I walked to my car.

As I walked north, I saw a medium sized white car driving southboand, unusually fast. I noticed it and thought she must've been going 45-55 in a 35 mph zone. As she approached the stop sign at the intersection, I noticed she wasn't slowing down at all.  By this time, I had stepped into the crosswalk. I thought, "Goodness, I think she's going to miss the stop sign."  Surely enough she did; then, she began to turn left, headed right for me as I was merely half-way through the crosswalk. At this point, I thought, "She's blowing the stop sign and is turning right into me!"  It seemed like minutes but was probably only seconds.

My heart raced and I started to run across the street as quickly as I could. I was screaming at her but she didn't hear. I don't know how, but I managed to move out of the way quickly enough that her car brushed my back and I went flying forward onto the street dropping whatever was in my arms.

Two people came to my aid, and one of them turned and started to run after her car. The other made sure I was okay.

I was, at least physically, okay.  My brush with death left me trembling and hyperaroused but I was alive.

It took me awhile to gather the belongings I'd relinquished to the asphalt. It also took me awhile to recall where I'd parked in the lot, as my memory was foggy and I felt disoriented.  Once I got to my car, I wept- for a long time.  Once I was calm enough, I drove to the MISS Foundation offices where I ran into Yasi, one of our counselors and my friend. Her intuition, keen as always, told her something wasn't right. I began to recount the story. As I was standing in the kitchen telling her the story, I glanced up at the thermostat, and noticed the office temperature was 72.7 (those who know me well get what this means, and I don't believe this was a coincidence).

I thought about how close I came to likely death. I thought about the alternate universe where my loved ones - family, friends, colleagues- would be getting that call from the hospital or the visit from the police department. Death notifications are excruciating. I thought about the MISS Foundation and what would happen to the organization if I died. I thought about my animals, my home, my funeral.

I think about death every single day, but this day was somehow different. Death was more tangible, more within reach. This day, death was a sliding door: Had I been on my phone, not paying attention, unaware and unmindful, I likely would not be blogging this right now. You might, actually, be reading my obituary.  Sliding doors indeed.

I know this already, but if there was any doubt at all, it's been utterly solidified:  Life is fragile. Each moment is, really, a gift. No, really.  Pay attention and be fully present. One day, that full presence may well save your life or someone else's in literal or symbolic ways.

And to my beloved family, I love you.
Zou Zou, I love you.
My beloved friends, I love you.
Our beloved MISS Foundation children and families, I love you.
My students and interns, I love you.
All the creatures of the earth and maybe beyond, I love you.
World, I love you too.

It's amazing how a brush with death can break your heart open.

Wednesday, February 6, 2013

Human Beings, Being Human

Doing the right thing has the power to help and to heal...
-Laura Linney

Dear Readers,
I am bringing two very important petitions to your attention today, asking that you sign them as part of your commitment to advocating for the vulnerable.

The first is All Trials which requires that all results from clinical trials be available for review publicly. This initiative could save lives.  Its supported by BMJ Group, PLOS, HealthWatch, National Physician's Alliance, and The Cochrane Collaboration. You can sign here.

The second is the petition organized by the MISS Foundation to boycott the DSM5. You can sign here even if you're not a clinician or researcher. Find out more about the history of the foundation's concerns here.

Please get involved, educate yourself, and then do the right thing. There is no "greater evil", says Helen Keller, than the "apathy of a human being."  Thank you, bowing, thank you.


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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