WARNING: This blog post is damned honest and may incite emotions

I am the mother of five children: four who walk, one who soars.

It's my standard answer to the dreaded question: "How many kids do you have?"

But it's been a very long time since I've told my story publicly, and the peculiarities I'll share here today, as in exceedingly rare form, will be such that many have never heard.

I have given birth five times to five beautiful babies. Only one of my babies made it all the way to her due date, the others being born several weeks early. And her, the one who made it to 40 plus weeks, died during her birth.

I lost my parents to death long ago, far too young; I've lost my best friend and mentor; I've had multiple pregnancy losses; I've lost partners... And for me (note: for me), nothing compares to the pain of losing my fourth child. From my journal:

When I arrived at the hospital... already eight centimeters dilated and without any pain medication... labor with you was more painful than with the others. I quickly learned why... the doctors told me they thought you died.  I laid there in disbelief.  I kept asking to go home, and I tried to get up from the bed.  I knew this could not be true... They were asking me silly questions, hundreds of them.  They asked if I wanted to hold you. They asked if I wanted pictures of you.  But I was trying to concentrate on giving birth with the contractions now one minute apart.  Anyway, babies don't die during birth anymore... Within twenty minutes after I arrived at the hospital, you were born.  My eyes closed tight... you did not cry or even attempt to breathe.  They offered no explanation, nor any reason.  The doctor said there was none.  There was only the deafening stillness in that room.  Not knowing what to expect, I was afraid to look at you... My body trembled with fear and adrenaline. My legs were shaking wildly and I felt myself leave my body...

I thought I, too, might die during her birth, as the women of the Victorian era did. And I remember thinking, "well if she doesn't live, neither should I."  There are no words, none, to describe the inexplicable horror, fear, terror, and maniacal agony of that hot July day. Even now, nearly 19 years later, I can feel the fear and the sadness and the searing pain travel from the tips of my hair to the tips of my toes. The juxtaposition of birth and death, like some cruel joke of Mother Nature, is the absolute antithesis of the feminine archetype, the ultimate betrayal of my body whom I would soon come to call "Judas."  

They didn't try to resuscitate her. Or me. We were treated with contempt, in my opinion then; contempt that I now recognize as death avoidance, provider guilt, and shame. The lack of psychosocial care during this time of traumatic loss would set the tone for my entire journey through grief.

I left the hospital within a few hours of giving birth, all the while listening to newborns around me as I held, in my quivering arms, her ample body, all eight pounds and 22" of her. I was pregnant, now, with an impenetrable grief and suffering that I never imagined could be.

The drive home was a bizarre, dream-like projection through time. Because something is very wrong with the world, my milk came in soon after her death (and remained for nearly a year because nature has a sense of twisted humor), and I raged against my body and evolution and the Creator and the UPS man and unicorns and the heavy box I lifted and pregnant neighbors for having killed her too.

A hot summer day

August of '94

Hotter than I'd ever felt

As sweat and tears poured from my cheeks

I buried my little girl. In a tiny, pink satin casket,

encircled with pictures of her mourning family

I watched as shovel by shovel,

The men in gray suits

Covered her tender body with dirt.

My heart screamed with pain.

Goodbye.

We said goodbye.

I laid on her mound of dirt in the scorching heat of the Arizona desert for a very long time. Everyone else went to eat. Food? Who in the hell can think about food at a time like this? I didn't care if I ever ate, or laughed, or jumped, or climbed rocks, or combed my hair again. I remember being there, dressed in black for the occasion of my baby's burial, staring at the clouds and thinking, "I will never be the same. I died with her."

Grief enveloped me, pulling me up into the darkest corners of its folds. Flashes of oblivion, hysteria, disbelief, confusion, like a scratched album, replayed over and over again in my mind. I played the scene and changed the outcome repeatedly, as if doing so would somehow help. I did not sleep for days. I paced the hallways at night, going in and out of her nursery with the little lambs and ivy I'd so carefully pasted on her walls. I felt like a wild animal trapped in a cage from which there was no escape. My mind was not my own. Nor was my body. I hurt. I hurt all over, in my eyes, my throat, my chest, my belly. God, it was so physical a loss. Hormones raged against reality sending maternal messages through all my cells but having nowhere to enact my primal, mothering instincts. This felt as much like madness as I had ever felt. I was filled with fear, and I had no where to turn:

Last night was horrible. The monsoons came. I heard the lightning and ran to the window. I sat on the couch and heard the rain suddenly pour down. Panicked, I realized that your fragile little body would become drenched. I grabbed a raincoat and headed for the garage. I don’t know what came over me at that very moment but I was determined to go to the cemetery, get you, and protect you from the rain. I looked for the shovel and just as I found it with my keys in hand, tears pouring from my eyes, your father pulled me back into the house. I fought him, yelled at him to let me go. I tried to explain that I had to go and get you. It was my job.

How does this happen? How does a woman carry a baby for ten months, fall deeply in symbiotic love, only to have that most precious part of her die? Neither my heart nor my mind could comprehend it then, or even now. Pure, unmitigated horror. And the others. Oh the others. They did mean well, they did. They had their words of comfort: "God needed an angel," and "At least it wasn't the older child," and "You're young, you can have another."

But you see, I didn't believe in God. And I didn't love my older children any more or less than I loved her. And I didn't want another baby. Ever. 

This wasn't about the loss of motherhood. This wasn't about the loss of any baby. This was about her, and I wanted her, not just any baby, I wanted her. No other baby would assuage my longing for her, and I knew this in my marrow.

At first, when she died, I was consumed with my own grief. I remember thinking that no one could ever know this pain. I searched for others like me, and I wanted desperately to be around those who shared my story. I wondered why I was so self-consumed, why grief felt so self-centered, even narcissistic. I had this constant impulse to- as Dickinson said "measure every grief I meet." I spent weeks, even months, researching what might have caused her death. The medical librarian knew me by name. And I began to grow weary of the never-ending battle against the stupidity of the world which believed, mistakenly, that because she died moments before her birth, her life was less valuable, less worthy of dignity. I felt like a mother bear, constantly defending her from the ignorance of devaluation. I suspected that, in fact, was the impetus for the narcissism: a clever and useful mechanism of defense against a world that would strip me of my right to mourn my dead baby.

I went to counselors and therapists. They pushed drugs, tapping, church, even avoidance, and I abruptly rejected them all. I found Compassionate Friends in Phoenix and met some wonderful people there who would allow me to share my grief once a month. Still, I was hurting. I finally discovered a book written by Dr. John DeFrain. He was researching the deaths of babies in the 70s, long before most anyone else cared enough to delve into the depths of this hell. And I started to understand the problem. Most of my existential angst came from feeling disenfranchised, disconnected from others. Their experience of Chey's death was vastly different from mine:

Dear Mom and Dad...

I'm so hurt. I want you both to miss her the way I do. 
I want someone to miss her the way I do. I feel so alone. 
If Ari died, you'd all be mourning with me. You'd share the grief 
because you love him and you know him... but with her death, 
it's as if no one really cares, as if no one really loves her, 
as if she never existed. Please help me. I can't bear this loneliness. 

And of course, around every corner, I was inundated with dismissive language: she wasn't real, she never existed, she doesn't matter. But if she doesn't matter, neither do I. That was the topic sentence, those were the underpinnings of my place in the world now. 

Within months, I dropped to a dangerously low weight, uncertain I could live in this pain and loneliness any longer. And then one day, something too sacred to write about here happened - I mean WOW sacred- and I made the promise to my dead child that if I survived, I would change things for grieving parents. Not just those who had my story. My heart was broken open for all parents whose children died.

And I did survive. Well, sorta. A voracious reader, more than a year after her death, I picked up a copy of a book by a physician who would become my dearest friend and mentor for many years, Dr. Elisabeth Kubler-Ross. Her writing would soften the blow of - not just grief but- grief that is unrecognized, invalidated, pathologized, and made invisible. Oh, and I pushed back against the invisiblization of infant and child death alongside the most heartfelt and committed men and women I've ever known (and we're still fighting it against entities like the DSM, funders, providers, and society).

One such war took me seven years. Seven years and countless battles with special interest lobbyists of Herculean proportion. For the Biblical scholars, what transpired is nothing short of a David v. Goliath story, and the slingshot was the victor repeatedly in state-after-state. We were opposed by lobbyists- bizarrely all other women, some of whom were mothers- and who actually said, "Those women aren't really giving birth" and "Those aren't really babies." Yes, really, and yes, in those words. Um, no offense Allison S. but yeah fuck off. 

So let's just say that John DeFrain was right: social disenfranchisement, invalidation, and lack of compassion doesn't do wonderful things for an individual's emotional well-being. This is a mentally ill society that incites intense emotional duress for people. Yes. Society is mentally ill. We need a stocky manual for society's mental illnesses.

I digress. I suffered many wounds from the many battles I would fight, some on principle, some on law. All the while, the world carried on and, transformed, so did I:

Resolutions

Another Year

Time passes so quickly

A new home, new job, new friends, new school

The New Year and the new promises it holds

So many changes since July of '94

But some things never change

Even though my life goes on

Even though the tears don't come everyday 

Even though it seems my heart has finally begun to heal

Even though 18 months have passed since your death

There are things which the sands of time will never change 

No matter where I am, no matter what I do

No matter how much time passes

No matter what I become

I will always be your mother

You will always be my daughter

And I will always love you.

What saved me? Many things. 

Elisabeth who would say, "Keep working and don't worry about the idiots. Just keep working and right will always win in the end." She never was one to self-edit. Gosh, I miss her.

John who would say, "All children's lives are of equal worth and someday the world will know that." What great fortune I have had to know this man.

Randy who would say, "I'm so sorry." Friends like this are treasures.

Grief. Grief saved me. Oh yes, grief saved me. What a delicious paradox.

The many babies and children and adult children who died before their time, and the families who shared their stories with me- they saved me.

Today, I met a man whose 3, 5, and 6 year old children and wife were killed in a house fire. His story was unfathomable. We talked for a long time... Actually, he talked. There was absolutely nothing I could say or do except cry with him. I hate it when people say that God never gives you more than you can handle. This is exactly why I want to punch people who say that.

Sometimes, absolute strangers would save me. And sometimes, I'd save myself.

The Kindness Project was probably the single most important thing I did for me and for her. The MISS Foundation, which started in 1996, was created to help other families through counseling, support, advocacy, and research to help families whose children were dying or had died. The countless beautiful volunteers in this organization have been a force for good in the world. Seriously, the most beautiful children are the foundation upon which this organization has been built and maintained over the past 16 years.

And, I went from being atheist to believing in something beyond this world. I know, it's usually the reverse, isn't it? But for me, well, I've had things happen that just defy statistical probability. I know, I know... you skeptics, I know what you're thinking. But as of today, I'm not buying what you're selling. Please let me have this (thank you, deep bows- know that I once thought just as you are now!).  Traumatic death does this to some people. For years after she died, I lived with one foot in the world of the living and the other in the world of the dead. I took up residence in a liminal space between worlds. I exist in a world where pedicures and pop stars are irrelevant.

The American Dream

Baseball and apple pie

White picket fence

2.5 Children

A good job

Wall Street Success

A day at Gymboree

Three weeks paid vacation

To a faraway island   

Silver S.U.V.

Braces.

I am not one of them.

My dream is of another world.

I dream of the day

When all babies cry at birth, never silenced by death.

I dream of the day

When every child wakes from his quiescent slumber.

I dream of the day

When every child comes home from prom night

and no child gets cancer.

I dream of the day when every child grows to be old

And all parents die first. As it should be.

I dream of the day                  

When parents celebrate life, ignorant to any other way.

I dream of the day when others realize how very much it hurts,

and offer unconditional compassion

I dream of the day, when I will hold the little girl I buried in 1994.

This is my American Dream.

I had to surrender, to let go of the reins and allow myself to just be and be broken. And I opened myself to that which cannot be explained or understood within the framework of the material world. I opened myself to the numinous.

I'm reminded, actually, of what Santkeshavadas (सन्त केशवदास) said: 

Go ahead, burn your incense, ring your bells, light your candles and call out to God, but look out! Because God will come and He will put you on his anvil, and He will fire up his forge, and He will beat you and beat you until He turns brass into pure gold.

Yep, on the beat you and beat you part. True that.

The monsoon season is here again. 

Unpredictable just like grief…so the rain fell and fell 

And from the inside of the store, I saw its fury 

I hesitated

Should I wait out the storm? 

But she has taught me not to wait 

And what is wrong with wet hair and sticky clothes? 

And so, with good intentions of running through the lot,

safely to the car

leaving behind the croissants and paper towels, I walked to the door

... And she caught my eye, 

to the left a mother and her little girl 

She was protecting her from the rain 

She removed her coat, kindergarten-yellow 

and held it over her daughter's head 

Maybe she was afraid of wet hair and sticky clothes or pneumonia? 

And they ran through the puddles, and they splashed,  and they laughed. 

And then safely got into their car. 

My mind attacked me as I stood frozen on the sidewalk 

I wasn't expecting the assault ...and my mind rewound to August of 1994 

The monsoons that fell, suddenly like your death 

As I was watching the television 

But it wasn't on 

I rushed to the window and the rain poured like the tears

Panic struck like lightning 

And as any good mother needing to protect her little girl from wet hair, sticky clothes,  

and maybe pneumonia, 

I took what I would need to shelter her from the storm 

A bright blue tarp and a mother's heart for comfort

...

Then, the shovel hidden beneath the gardening tools collecting dust, just like her nursery 
screamed madly, "Take me! Save your little girl!" 

I could not rescue her from the storm that day 

or protect my child as any good mother should 

Her body, surely drenched no splashing, no laughing 

And through the night thoughts of wet hair, sticky clothes, and pneumonia 

haunted and scorned me 

Sleep does not come easily 

For a mother who cannot safeguard her child 

We did not get into our car safely 

I could not deliver her from death.

Grief ceases to be narcissistic at some point, and it matures (we hope) beyond the center. At some point you're sitting in group really listening to the other and not needing to speak your pain.  At some point your story doesn't need to be told over and over again. At some point it is more about the other's pain than your own. At some point your heart will break open to other grieving parents with dissimilar stories. And then, your heart will break open to grieving widows and widowers, and to hungry children, and to the homeless, and to abused animals.

At some point we grow beyond the rather hubristic belief that we can eradicate death, even when anachronistic, and we realize that this moment is all we really have. This moment with our children, our partners, our family, our neighbors, our friends. Death comes too soon for some, eventually for all. What we do in the aftermath of death and loss and trauma for each other is what counts. So alongside the volunteers of the MISS Foundation and academic colleagues who share research interests, I will continue to advocate for social change on behalf of mourners. We need - and deserve - to be treated better by society. So do widows and widowers, so do the homeless, and the hungry, and the abused.  And an open heart of compassion to all others not only helps their heart, it helps your heart. That's what seeing beyond the self, an outwardly turned heart, can do. And this is what will change the world. And this is what will change the world. And this is what will change the world.

Nearly 20 years later, my life is divided into two parts, before her and after her. I am wildly happy and content in my life. But that doesn't mean I don't have grief. I will say it over and over: Just as the sun and the moon exist in the same sky, beauty and grief coexist in the same heart. And that is how it must be, at least for me...

This has become a disproportionately lengthy blog about my then and now. I suspect I'm setting the stage for my two decades without Chey. I decided I would revisit her journal on her 20th year of birth and death. This may well be the segue into that process as her 19th birthday approaches and I reflect, so rarely shared in such intimacy:

I still love and miss Cheyenne very much, yet her life and death has a different meaning today. In the Spring of 2007, I had her body disinterred. I brought her ashes home and placed them in a Japanese butsudan from the Shinto period. I took a small portion of her ashes and used them in a tattoo on my back for her 17^th birthday, an excerpt from St John of the Cross, Dark Night of the Soul: 

The soul still sings in the darkness, telling of the beauty she found there. Daring us not to think that because she endured such anguish and torture, she ran any more the danger of being lost in the night. Nay, in the darkness did she, rather, find herself. 

When I think of her, it's no longer as a small child. Rather, she feels ageless and enormous, larger than life. I'm reminded of what the philosopher Lao Tzu said,“Silence is a source of great strength.” 

I’ve always believed that all I needed could be found there, in the silence.  

Cheyenne’s voice is in the silence. 

And I am still listening. 

Thank you for reading. Thank you for your non-judging mind. Thank you for your open heart.

As we near Mother's Day...NASCAR to the rescue!

What an interesting day as we approach Mother's Day 2013.

I got an email today from a grieving mom, formerly from the Arizona group, recently relocated to Kansas and is starting her own MISS Foundation support group there.

It said:

Dr. Cacciatore,

My husband Brian nominated the MISS Foundation for an award from the Jimmie Johnson Foundation. He received a call this morning saying MISS Foundation was chosen as a winner and will receive a $10,000 grant, and an ice cream party sponsored by Blue Bunny, and the MISS Foundation logo will be worn on Jimmie's helmet during a NASCAR race. We are thrilled for this news... As it comes on Brianna's 2nd Birthday.

Jill

This is why our families are so extraordinary, even in their deepest sadness.  It is their precious daughter's birth and death day, and this news came, serendipitously, today.

A few things I want to say about this.

First, it came in honor of Brianna today which I find pretty danged awesome.

Second, I'm in awe that it actually came at all.

You see, the MISS Foundation has applied for countless grants. I'm not kidding here- countless. We are consistently turned down, time after time.  Why? I've heard many excu...uh, reasons, not the least of which is that we aren't "sexy" enough. Huh? Say again please?

That's right. Grantors want "sexy" causes.  And the deaths of babies and children just ain't sexy.

But really, I take issue with this nonsensical postulation.

First, we help - literally - thousands upon thousands of families every year from all socioeconomic classes, all religions and regions, all ages and causes of death, high profile cases and the invisible and marginalized deaths. We help parents, siblings, grandparents, and entire communities. We offer counseling. We advocate for families. We have support programs. We conduct and support research. We educate. No one does all that we do for our families.

Second, people may not want to think about child death. But it affects us all, through generations. That is not an overstatement. What we do not address now, for lack of compassion, training, and awareness (incited by death avoidance)- will come back to bite us in the ass - hard - later. This, I promise. I've seen it enacted over and over in family systems and narratives.  So the death of a child in the community represents a loss for us all, one that will ultimately affect your children, my children, all of us.

Third, yeah, yeah, we're not sexy and no one wants to associate with us. Until they need us. Until it is their employee, or neighbor, or friend. And when it does happen within their circle of perceived safety, who do they call? Yep. But how soon folks forget who helped in the community when it was most needed. Rather, some- many even- go on to support other causes. They needed us, desperately, at those desperate moments, then all too soon forgot who helped and forgot that many who will follow in their footsteps will need help too (I could rant here but I'll withhold). 

Finally, the big secret is that by confronting death- by helping families dealing with life's most tragic sacrifice, we gain as a culture. We gain because we give during the darkest hours of others. And nothing, nothing, nothing can give a philanthropist more value than that. Nothing. Clear? Nothing. Listen, I hate that we need money to do what we do. I really hate it. But the reality is that we do. The breadth and scope of this work can't happen without financial resources. And what we do with our resources has changed lives and aided families.

We have countless binders with handwritten letters and cards from people around the world:

"Thank you for saving my life!"

"You helped our family stay together through our child's death, thank you!"

"We don't know where we'd be without the MISS Foundation."

"When others shunned us, you were there."

"We cannot express our gratitude enough."

"Seriously... you saved us... thank you."

"The help I got from you was help I could not find anywhere. 
I was headed down a path of self-destruction... now I have my life back."

Still, talking about the death of a child and a philanthropist's association with this organization takes courage, and lots of it to support us not only financially but also philosophically. Did you hear? The great NASCAR driver will be proudly wearing our logo on his helmet at a race. That's the epitome of cool.  You see, those who have turned us down don't get it. They'd rather be involved with fixing- curing - preventing. All fine and good. And there are so many worthwhile charities which do that. Death just doesn't give them that warm, fuzzy feeling. And of course, they must then confront the reality that their own child may die. Awful, I know.

But guess what? Through history and in perpetuity, a percentage of babies and children die before their parents. We cannot eradicate death, we will not - ever- cure all children from every disease. When we find a cure for X disease, another will supplant it.  Y disease? Same thing. So some children will always precede their parents in death, tragically. And what about those families who don't get a 'miracle' or a 'cure' or just good damn luck? Do we forget and discard them and let them figure out how to navigate a child's death on their own? Nope. We don't.  When the worse possible thing happens in a family, sexy or not, the MISS Foundation is there. Nothing- not homelessness, hunger, joblessness, or disability- can tear a person apart the way a child's death can. Nothing is sadder than this.

And so this work is worthy of recognition, support, and funding so that we can continue to help these families.

Ironically, a fantastic and one-of-a-kind dog toy company in Golden, Colorado, KONG has been one of our sole and very consistent donors. 

Another nonprofit in memory of a spicy little monkey, the Ronan Thompson Foundation, has also helped us immensely. 

And, today, a compassionate family man and NASCAR driver, Jimmie Johnson, stepped up to help where many others have not. And I am personally and professionally grateful beyond words.

So to Jimmie Johnson and his family, I pause- look into your eyes- and bow deeply and slowly for the heroic generosity which will help us continue our valuable work. Really, thank you, on behalf of so many very sad families who have had to say farewell to their beloved babies and children.

And to Brianna- we remember and honor you today. Your life matters, now, then, always.

Special thank you to all the families whose $5, $10, $20, $50, 

and $100 donations have, through the 17 years of our existence, sustained us. 

(Grieving) Mother's Day Manifesto

Because being a bereaved mom is the hardest job of all.
 I wish you all a tender, beautiful Mother's Day filled with love and support.

In Not-So-Loving Memory of the DSM5

The American Psychiatric Associations's soon-to-be-released 5th iteration of the DSM was dealt a fatal blow today by the federal research agency, the National Institute of Mental Health (NIMH).

The agency's director, Tom Insel, announced it's plan to abandon the manual in its future research endeavors, noting it's "weakness is the lack of validity." Thus, the NIMH will be "re-orienting its research away from DSM categories," said Insel.

News has hit the public hard as, just prior to its demise, many esteemed researchers, clinicians, professional organizations, and members of the public rallied to oppose the manuals extreme medicalization of normal human conditions. Several boycotts have already been organized by the American Psychological Association, the Committee to Boycott the DSM5, and grassroots organizations like the MISS Foundation which have a vested interest in ensuring that bereaved parents are not affected by the too-common, over-ambitious diagnoses of mental illness and inappropriate medical intervention for normal grief.

Indeed, Insel is right. Field tests revealed very poor outcomes for the DSM5 in many categories including Major Depressive Disorder (MDD), often mistakenly treated in the bereaved parent population because of common markers which render distinguishing parents' normal enduring and painful grief from MDD a challenge, even for the most experienced clinician.

In fact, particularly in the case of child death, providers are more likely to avoid grieving parents and also experience their own psychological discomfort and vulnerability, further risking a misdiagnosis (Ah, death anxiety and denial of death (thank you Ernest Becker) are alive and well in 21st century America).

Some supporters who are particularly attached to the DSM5 may experience denial, shame, and protracted mourning for the much-revered manual (no worries, there's a pill for that). However, many of us only mourn momentarily and then we will pick ourselves up by our bootstraps and move on with our lives. Just give us two weeks, tops, to get over the loss. We won't ruminate on what we could've done differently to save the DSM5. We won't harbor guilt or shame or self-blame. Our eating and sleeping patterns won't change much in the aftermath of its demise. We won't withdraw socially or ruminate, and we won't feel worthless. No, we will celebrate a life well-lived and bow our heads as we say farewell.

Now, let's hope, in an attempt to find a new object of affection, we don't replace the former love with a new love prematurely in an attempt to fill the empty hole. And let's hope that we don't repeat the same egregious mistakes with the next trend in nosological systems. Let's hope that we can exercise some self-control and not collude with powerful corporations to create illnesses which either do not exist or wherein the 'treatment' is far worse than the purported psychological or behavioral concern.  We need not go down that path again.

We have a long way to go in the way we care for humans in suffering- a very long way to go. But we move mountains one stone - or in the case of the DSM5, one boulder - at a time. While I know that final disposition will be prolonged (this really is an historical moment), I know we are making the right choice to bid the manual adieu.

I, for one, will sleep better tonight knowing the DSM5 is well on its way to the other side.

************************

"Empathy can cause revolution... a revolution in human relationships."

"Highly empathic people get beyond the labels."

Now that's my kinda revolution!

*********************

Note to clinicians: Do not buy the DSM5. You need not spend the hundreds of dollars it will cost on what will soon be an irrelevant book.

Medicalising Grief

I'd like to share a fascinating and critical documentary from the BBC, Medicalising Grief, available to hear online only the next 7 days here

A thought provoking and honest discussion of grief, depression, and the DSM-5 featuring Drs. Jerome Wakefield of NYU, Allen Frances of Duke (emeritus), Gary Greenberg, psychotherapist, Lisa Cosgrove of Harvard, Trish Hill of University of Nebraska-Lincoln, Joanne Cacciatore of Arizona State University, Dana Merkling of MISS Foundation. On a personal note, this comes in the midst of a very painful, traumatic loss of my own.  I was unaware this would be aired today, so I dedicate my own participation in this documentary to the memory of my friend "T" and her grieving children.

I would highly recommend this program for consumers and clinicians alike.  Our gratitude to Matthew Hill, Gemma Newby, and the BBC for their courage in shedding light on this very important topic.

"The Diagnostic and Statistical Manual of Mental Disorders - or DSM - is a book full of lists of symptoms, strange sounding names, codes and guidelines. It's also a book that changes lives. Its champions say it is simply a system of classification, a diagnostic tool. Its critics claim it is more - it decides what is and isn't a disease and that every time a new version is published an increasing number of people are labelled mentally ill.

And for every diagnosis in the DSM, there is a corresponding medical treatment waiting in the wings.

In May 2013, the American Psychiatric Association will publish the latest edition of their DSM and it is likely to cause tension within the American psychiatric establishment.

But why is this medical-looking manual causing such controversy?

Where some say the previous DSM was responsible for pathologising childhood, critics of the new edition will medicalise grief.

Are the intense feelings most people experience after the death of a loved one misery or melancholia? That is the ongoing debate, the result of which will have an impact on millions of people and our understanding of a fundamental human reaction.

In a post-Prozac world, when normal becomes abnormal, medication generally follows. An estimated 8 to 10 million people lose a loved one every year and something like a third to a half of them suffer depressive symptoms for up to a month afterward. How much does the pharmaceutical industry stand to benefit if an extra 5 million people a year are prescribed anti-depressants?

Matthew Hill investigates the DSM, its decisions over what is and is not a mental illness, and the people behind it."

Producer: Gemma Newby

All Ten Miles: Losing a daughter. A mom. A friend.

M looked into my eyes and she knew. Still, I had to tell her. She curled into my lap, knees to her chest, in the back of the car saying "No, no, no, oh my god, no" over and over again. She couldn't catch her breath, and neither could I.  I held her as her tears soaked through my shirt and dripped down my belly. I was silently weeping as I held her. She was like a baby again, all 18 years of her rounded into me, all ten miles to her house to say goodbye to her mom.

_______________________

I met T 10 years ago when she moved across the street. We became fast friends, as they say, sharing holidays together and late nights talking about philosophy, kindness, love, and compassion. In fact, at one point, I almost had her at vegetarianism. "Nah," she said, "I decided it would be an excuse to eat too much junk food."  T brought sunshine into the room with her, and she loved her three children very much. She was almost always happy and optimistic.  A good friend to many, she loved her girl nights with a glass of Chardonnay. Sedona was her favorite place in Arizona and she even volunteered to help the MISS Foundation on a number of occasions. She made the best silly faces for pictures... she always made me laugh. And when she and her former husband filed for divorce, they were graceful, gentle, and cooperative, and they remained close friends for years. I deeply admired the way they cared for one another through the grief of that divorce. In October of 2011, when we had our barefoot walkabout (barefoot hike) she bravely took off her shoes to walk in memory of her sister, a beloved baby, who died 40 years earlier.

Over the course of 10 years, I'd see T through many difficult days and nights, some of them the normal struggles of being a  newly single mom- some of them related to her own existential questioning. Nothing unusual or extraordinary, just very real and very human. When I recently moved from the neighborhood, she'd come visit me in Sedona where we'd hike and sit, quietly, on the majestic red rocks. And on occasion, when I was running early headed into town, we'd meet up at the ol' neighborhood Starbucks where we'd share her triumphs and struggles (she often teased calling me a "friend-a-pist" and "ther-a-friend").

She'd been seeking a spiritual path the past year or so. I'd given her a recommended reading list on mindfulness and self-compassion, and she was so excited about opening her heart to the numinous. The last time I saw her, she was healthy, happy, and doing well tolerating the normal ups and downs of life.

But about five weeks ago, life became tough for her.  I gave her some names and numbers of some local therapists for some "real" therapy. She was self-employed and couldn't afford insurance, so she was concerned about the cost. I stressed to her the importance of getting help from someone she could see every week in a therapeutic relationship. When we hung up the phone, she seemed hopeful, and we committed to reconnecting for our Starbucks meeting in a few weeks.  I texted her a few weeks ago but she was out of town so couldn't meet for coffee. I texted her again last Friday:

I said, "Hey T-mama, hows about java this am?"

She said, "So sorry Jojo, I don't feel well at all. Another time?"

I said, "Oh, no good sickies?"

She said, "Yeah."

I said, "No problem, feel better xo"

That was my last contact with T.

What I didn't know was that a few weeks earlier she was out of state where she'd seen a physician who prescribed multiple psychiatric medications to stabilize her.

But what I learned yesterday was that she seems to have destabilized. Our other friends said that when she returned from out of state, she spiraled downward into a vortex of strange and highly uncharacteristic behaviors:  social withdrawal - very unusual for T because she was very attached to and reliant upon her small circle of friends, anhedonia, fear, anxiety, akathisia, and even deeper into despair. She was even fearful to see her children. Her former husband said he'd never seen her like this in their many years together.

The descriptions of her behavior do not reflect the friend I've known over the past decade.

On Tuesday at 4:30pm, I got a disturbing call from her former husband. I heard the message. I remember exactly where I was standing. I shook my head. I replayed the message. It was hard to hear. I walked outside and played it again. "What? What? What?" Over and over in my head.

I called him back and rushed out the door to the streets of the old neighborhood where so many wonderful memories had been held all these years. I pulled up to T's house. AR van. Investigators. Cops. He ran over to me and we held each other and cried. We waited until after midnight in the cold desert air, not dressed for such conditions, floating in and out of our bodies. It was nothing short of a nightmare. And the children- they didn't know yet. They are so young, oh so young to lose their mother, only 12, 13, and 18. Our hearts were breaking right there on the streets of the old neighborhood.

We made a conjoint decision to tell M, the eldest child, first. But her former husband wasn't allowed to leave the scene.  So D and I went to pick her up, telling her something happened. And ten miles of that drive was nothing short of excruciating. Her beautiful daughter, her flower, folded up into my arms, quivering. It brings me to tears again now as I type this.

M is brave, like her mother. She asked if she could wait to see her mom leave into the van. I asked, "Are you sure you want to do that sweetie?" She insisted. So we waited hours until they wheeled T out on the gurney, covered in a thick black blanket. M put her head gently on her mama's body and my arms held this precious grieving child as she sobbed. They were patient with us as M wept for quite awhile. When she was ready, she took a deep breath, put her head into my chest, and cried more as they put T into the van.

We went back to her former husband's house very late where we then had to tell her younger children. Words can't describe it here, so I wont even try. None of us in that house slept all night. The meeting with the funeral home is today, at one of the few places where we'd entrust T.  And I saw her parents, children, siblings, and her closest friends mourn and weep and anguish over this huge, irremediable loss...

What words are there for something like this? We are left with many, many more questions than answers. This is not T. In the many years we've all known her, she had never been like this. And so I have very strong feelings about all of this, including anger. She did not take her own life: T would not. She was killed by broken medical, mental health, and insurance systems that fail to provide real support and aid to those who are suffering.

But that is for another time. The time for tears is now. And this, writing her story, is the beginning of my own therapy, my own way to remember and honor her through all the pain. Wherever she is, she's with her beloved big sister now.

T, thank you for hiking barefoot with me. I miss you already. We all miss you already. We will do our best to take good care of your babies.


Thank you to T's family for asking me and allowing me the tragic privilege to tell her story.

*Please note:  I will be taking a few days. If you call or email, please be patient with response time. Thank you*

My Medical Utopia

In my Utopia. 

Add Doctor: "Tell me about your life. How are you doing?" Puts prescription pad away and engages in deep, empathic listening. 

Oh, and yes, in my utopia, the doctor also meditates twice a day, avoids processed foods, eats organic, spends more time in nature, and doesn't watch TV.  In addition to that, this same doctor is comfortable approaching the suffering of another, is aware of his or her own emotional reactions to death and grief, and is willing to take the time to just sit with an open heart and listen.

What are the chances that if the medical system operated this way, we'd save lives, hearts, money, and time?

"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.

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

Etiology:
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.

Symptoms:
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.

Treatment:
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.