Wednesday, May 23, 2012

The Magic Love Bus, purple silk robes, and tears in the wind

"Big girl as she was, 
Laura spread her arms wide to the wind and ran against it. 
She flung herself on the flowery grass and rolled like a colt. 
She lay in the soft, sweet grasses and looked at the great blueness above her 
and the high, pearly clouds sailing in it. 
She was so happy that tears came to her eyes." 

-Laura Ingalls Wilder

It started as a simple walk with Auz, my 90 pound Australian Shepherd, and Frances, my 30 pound rescue dog from Grants, New Mexico. 

All week long, I've felt the grief edging upward, through my innards, heavy- like concrete- filling my lungs, tears stuck like gum in my throat and bubbling up, spilling over into the world.  It's been a month of challenges. Her senior prom. Her upcoming 18th birthday. Her graduation. Tonight.

But dead children don't graduate from high school.  

I'll never see her walk that stage. I'll never walk with her to her dorm room.  I'll never walk her down the aisle. I'll never walk into her arms on this Earth, in this place, in that way.

And, I never walked her to kindergarten. 

So, tonight, I walked the dogs. Around the neighborhood. And the neighborhood kicked my ass. 

It started here. There it was, the Magic Love Bus. Lovolution and peace and sunshine and flowers and all things 60s. 

I smiled.  

"She'd be a neo-hippie," I thought.

And that single thought, combined with the nearly-18-year-old "big girls", spreading their  purple regalia arms wide in celebration, donning gowns and caps full of pomp and circumstance was more than I could take this beautiful senior graduation evening.

The wind blew against my cheeks as I closed my eyes and felt the well of tears overflow. I let them come. I spoke to her in my heart, "I'm so sorry my precious girl. You missed so much of life, I'm so sorry. Please forgive me. I miss you so much." 

The wind blew harder and I pressed against it, slowly, eyes still closed, my tears flying into the wind. The once-dormant grief awakened and took its form, and took my breath, and I bathed in its presence. She, simply, is worth all of this...

She would have laid in soft grasses in awe of the great blueness and pearly clouds above her. Just like her mom. She'd have been so happy that tears would have come to her eyes. Just like her mom.

And she would have loved Laura Ingalls Wilder. 

Just like her mom.

A simple walk. And so much more.


Those looking for the posts on the DSM-5's proposed changes and my vociferous responses:

Related blogs in order order of occurrence:

First DSM blog that went viral
Open letter to the APA opposing the changes
My personal experience with a psychologist pushing medications in acute grief in 1994
Our second letter to the APA in response to them
My most recent frustrations from the perspective of grieving mothers facing Mother's Day 2012

Thursday, May 10, 2012

Bereaved Mothers: The hardest job of all

It's almost Mother's Day of 2012.

A day for mothers. Tall mothers, short mothers, dark-skinned mothers, fair-skinned mothers, funny mothers, serious mothers, mothers with blonde hair and dark hair, curly and straight. Mothers who are emotional and nurturing and mothers who are an Aurelian-brand of stoic. 

Mothers of living children and mothers of dead children. 

There is nothing more painful in this world than facing day after endless day without your child in it. What could possibly be harder? Everything is changed- colors, textures, sounds, feelings. Us. We are changed.

Bereaved mothers look into the mirror and face a stranger. Who is this woman now? This woman without her child? How will she make it through this day, this hour, this moment? 

The truth about being a bereaved mother is that it is exhausting. We cry until our tears become leather. Night after night, we beg God or Jehovah or Yahweh or Allah or Mother Earth for just one more day with our children. We cannot find our keys or our toothbrush or our parked car or our hearts. We strive to uncover the "why" but there are no good answers to those countless questions which taunt us and eventually collect webs in the backs of our minds.

And bereaved motherhood comes with many more sleepless nights than one could imagine as our arms burn to hold our children, our eyes cry out to see them, our ears mislead us toward voices which do not exist, and our legs carry us, repeatedly, toward their empty, lonely rooms.

No, being a mother to a child who died is no easy burden. It is the hardest job of all.

Our lives are a unique juxtaposition between two worlds, life and death and between two states of being: incredible, immeasurable sadness balanced against the will and pressure to live again and find joy.

It is a world where we often have to defend the dignity of our dead, protect their memory, and advocate for our right to feel...

It is a world where we go to bed at night secretly wishing we wouldn't awaken. It is a world where primal mourning takes over our bodies and our hearts feel as if they've been systematically excavated leaving a gaping, open wound in our core. It is a world where we are judged for our tears, and where we fear for the lives of those we love with an unfamiliar panic. It is a world of searching and yearning and pining for far longer than the world would allow, and incessantly seeking reminders of our children in the eyes of other children for a glimpse into what-should-have-been.

It's a wretched and indescribable longing which so many cannot begin to comprehend because they tuck their own children into bed at night, and they hug all their children on Mother's Day, and they are utterly, thankfully ignorant of this experience.

Nothing quenches the longing in our hearts for our children who died. Nothing. And this is how it should be. The place in our hearts- the one which belongs to our beloved child- is theirs and theirs alone. Our duty is to honor that place, to keep it free from detritus and from absorbing the hate of the world.  Our duty is to remember them so their place in our lives is one of beauty, a beauty beyond the material.

Our duty is to love them boldly, wildly, with every part of our being, and to carry their spirit into the world.

This Sunday is a day for mothers. All mothers. So please, this year, remember that bereaved mothers are part of the Mother's Day club.  Please, reach out to one or two and see their child, always loved, always missed. 

They have a much harder job than the mothers who do homework, and dishes, and driving, and all-nighters, and cleaning, and laundry, and cooking- and one which will last until they take their final breath on earth. Perhaps, they are, as mothers go, the most important and hardest working of all.

Your name is upon my lips
your image is in my eye;
the memory of you is in my heart...


This post is dedicated to the many brave and tireless mothers and families of the MISS Foundation I know, admire, and love. Happy and Gentle Mother's Day from my heart to yours.

Sunday, May 6, 2012

DSM5, MDD, and Reliability

In case you've any doubt that the proposed changes to the DSM5 category of Major Depressive Disorder, particularly as it relates to the bereavement exclusion, were wanton and reckless, please read the below commentary.  These are just preliminary and the general research public does not yet have access to those data. But, I - and my concerned colleagues- will publish all the numbers when we can (UPDATE: Reliability numbers here).

Despite all other debates around this issue, these are certainly interesting data... and an outcome of .32 reliability for MDD.

Are you comfortable with that number? I'm not. Not as a researcher, not as a concerned advocate, not as a human being, and certainly not as a bereaved mother. It's getting closer and closer to an organized process of rejecting and remaking this paradigm, thank you Kuhn.  As Chomsky said, it's our duty to "speak the truth and expose lies" particularly when the sources of such have hegemonic power.

Again, please read this commentary from Scientific American writer, Ferris Jabr. And get ready to mobilize.

Related blogs in order order of occurrence:

First DSM blog that went viral
Open letter to the APA opposing the changes
My personal experience with a psychologist pushing medications in acute grief in 1994
Our second letter to the APA in response to them
My most recent frustrations from the perspective of grieving mothers facing Mother's Day 2012

Wednesday, May 2, 2012

The Nobility of Grief. And Weirdness.

She is a mother. She is and remains a mother even though her child die, though all her children die. For at one time she carried the child under her heart. And the child does not go out of her heart ever again. Not even when her child is dead …
Abyssinian noblewoman
Love & Will, Rollo May

Mother's Day 2012 is arriving.  
With its arrival also the heralding of deepened grief and longing for countless bereaved mothers around the world. 
These are mothers who, even decades after the deaths of their children, will weep for their beloved when they are alone- will pace the floors of their homes as their hearts literally ache in their chests- will still negotiate for their children's lives -  will grasp at something, anything in which to believe- and would sacrifice all they are for their children who died.

Grief is not a disease, it is not mental illness, it is not depression. It is, in fact, an expression of love. Grief can only be a disease if love is.

Grief is natural, emotional devotion, this is evolution, this is the numinous, this is God's love, this is the ineffable and the ennobling as Frankl would say. Whatever your belief, one thing is indisputable: This is a mother's heart.  And yes, that grief is noble and worthy of our pause and contrition.

Are you willing to believe that love is the strongest thing in the world? It is stronger than hate, stronger than evil, and stronger than death. 
-Henry Van Dyke

I have had many inquiries as to the current status of the American Psychiatric Association's proposed pathologization of normal grief responses (The blog that started it all). They have not yet responded to our second letter.

But I did write a brief autoethnography about my experience with the "mental health" industry as a bereaved mother:

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. 

The abbysisan noblewoman did not know me. Nor you, bereaved mothers around the world. But in a sublime way, she does know us and we her.  We share the wisdom of the ages.  Over time, grief endured becomes compassion expressed. And decades later, our hearts continue to hurt for our beloved children. I would like to share, once again, my Mother's Day manifesto:
Mother’s Day Manifesto

This is my path. It was not a path of my choice, but it is a path I must walk mindfully and with intention. It is a journey through grief that takes time. Every cell in my body aches and longs to be with my beloved child. I may be impatient, distracted, frustrated, and unfocused. I may get angry more easily, or I may seem hopeless. I will shed many, many, many tears. I won’t smile as often as my old self. Smiling hurts now. Most everything hurts some days, even breathing. 

But please, just sit beside me. 
Say nothing. 
Do not offer a cure. 
Or a pill, or a word, or a potion.
Witness my suffering and don't turn away from me.
Please be gentle with me.
Please, self, be gentle with me, too .

I will not ever "get over it" so please don’t urge me down that path. Even if it seems like I am having a good day, maybe I am even able to smile for a moment, the pain is just beneath the surface of my skin. Some days, I feel paralyzed. My chest has a nearly constant sinking pain and sometimes I feel as if I will explode from the grief. This is affecting me as a woman, a mother, a human being. It affects every aspect of me: spiritually, physically, mentally, and emotionally. I barely recognize myself in the mirror anymore.

Remember that grief is as personal to each individual as a fingerprint. Don't tell me how I should or shouldn’t be doing it or that I should or shouldn’t “feel better by now.” Don't tell me what's right or wrong. I'm doing it my way, in my time. If I am to survive this, I must do what is best for me.

Surviving this means seeing life’s meaning change and evolve. What I knew to be true or absolute or real or fair about the world has been challenged so I'm finding my way, moment-to-moment in this new place. Things that once seemed important to me are barely thoughts any longer. I notice life's suffering more- hungry children, the homeless and the destitute, a mother’s harsh voice toward her young child- or an elderly person struggling with the door. There are so many things about the world which I now struggle to understand: Why do children die?

Don’t tell me that “ God has a plan ” for me. This, my friend, is between me and my God. Those platitudes seem far too easy to slip from the mouths of those who tuck their own child into a safe, warm bed at night: Can you begin to imagine your own child, flesh of your flesh, lying lifeless in a casket, when “goodbye” means you’ll never see them on this Earth again? Grieving mothers- and fathers- and grandparents- and siblings won’t wake up one day with everything ’okay’ and life back to normal. I have a new normal now.

Oh, perhaps as time passes, I will discover new meanings and insights about what my child’s death means to me. Perhaps, one day, when I am very, very old, I will say that time has truly helped to heal my broken heart. But always remember that not a second of any minute of any hour of any day passes when I am not aware of the presence of her absence, no matter how many years lurk over my shoulder.

Love never dies.

So this year, on Mother’s Day, don’t forget that I have another one, another child, whose absence, like the sky, is spread over everything (C.S. Lewis).

Don’t forget to say, “How are you really feeling this Mother’s Day?” Don’t forget that even if I have living children, my heart still aches for the one who is absent —for I am never quite complete without my child. And because love is much, much, much bigger than Death.
Never apologize for showing your feelings. When you do, you apologize for the truth.
-Benjamin Disraeli

Wishing all our bereaved mothers, around the world, a gentle Mother's Day, 2012, as we share, in solidarity and community, in your sadness.


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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