Recipe for Raw Grief

A grieving mama and her spicy monkey

It's a rare occasion when I admire a celebrity.

Today is one of those days.  Pop star Taylor Swift wrote a beautiful song for our beloved Maya Thompson's spicy monkey, Ronan Sean, called "Ronan." The song is absolutely breathtaking. And not every celebrity is courageous enough to talk about the death of a baby or young child. Simply, it's a topic that most will avoid...

Maya is the same grieving mother I wrote about back in March when my rant about the DSM went viral. Since Ronan's death, Maya has endured 16 months of agony, and has put her grief into action helping to build an infrastructure that will fight neuroblastoma and provide grief support to families in the process of this nightmare.

All the proceeds go toward helping families whose children have cancer. So, please, spend the $1.00 on iTunes and download the gorgeous song, Ronan, and help us to help families.

Six Feet, Three Girls, and Smiles

After working more than 90 hours last week, I decided to take a family day.  Stevie Jo agreed to drive down from NAU for a hike and some mother-daughter time.  She texted me last night.

SJ: Mom, I'm so excited! I made a new friend! She's from Hawaii. You're gonna love her.

Me:  That's great honey! You can certainly bring her with you to Sedona tomorrow!

SJ: I'm going to because she's never been outside Flagstaff! She had never even been outside Hawaii. Wait until she sees Sedona. Sunday I'm taking her to the Grand Canyon.

Me: She'll have so much fun! Can't wait to meet her.

------------------------------------

StevieJo and Deann arrived this morning around 10:30.  We chatted for a few minutes, 

Me:  So how do you like it here?

Deann: Oh, it's incredible! It's like a painting!

Me:  Yes it is! Hawaii is just as beautiful.

Deann: Yes, but in different ways.

Me: I would imagine! Someday we'll go there!

Deann: You'd love it. The beaches are amazing.

Me: Are you a freshman this year?

Deann: Yes, I just turned 18 and I've never left Hawaii.

Me: That's what StevieJo said! Are you scared about being here?

Deann: A little. I was really homesick the first few days, but I'm feeling better now...

and then they went onto the deck with Josh while I made them some drinks.

I looked out the kitchen window and saw them sitting there at the table. They were talking, giggling, and full-on laughing. I smiled.

Then, it hit me.

Wait. What did she just say? I shook my head side to side as if doing so would cause my brain to repeat her words. Must've worked because with great clarity I heard it again: "I just turned 18."

Oh man.

I stood there and watched. Tears filled my eyes. Good, good, good tears. This is what it would look like.  I just watched and watched in awe. It was about as strange a feeling as I've had in a very long time. I'm not sure I can put it to words, so I won't try. But... it was magical.

Deann has a deep love for nature. She loves anthropology and animals. She is spiritual and engaging and her smile is illuminating.  She loves going barefoot (she said one day she'd try my crazy barefoot hiking with me). She loves hippies. She loves sea turtles (for Z) and owls. She even meditates.

And she loves hiking too. So, StevieJo, Deann, and I went for a hike.

Three girls, six feet, and a smile on my face and happy tears on the edge of dispersal for nearly two hours at the tiny glimpse into my alternate-wished-for-reality (yes, of course, that's me, barefooted).

We walked up to the vortex and sat. Just the three girls in order of age.

I could tell StevieJo was feeling it too.  And seeing them together warmed my heart in ways I could never have imagined. I was bathed in immense gratitude for this priceless moment tinged with a dollop of sadness.

But so appreciative.

We came home and played our ritual card game, Spoons, and Deann was wild and fun and loud. She fit right into the place at the table that should have been Chey's. We laughed and laughed and laughed.

I'm uncertain if this is some remuneration for the excruciatingly difficult summer, but this was one of the best days I've had in a very long time.

Thank you... thank you... thank you. Bowing in deep, profound gratitude.

I hope they are friends for a very, very long time.

Cherry Trees in Winter and Too Many Dead Children

Dear Cheyenne,
I haven't written to you publicly for several years. But, it's been a long hard summer.  And something about sending this out to the world feels right.

In many ways, this has been one of the hardest summers in almost a decade.

There are so many reasons why.

Your prom. Graduation. 18th birthday. College. Hit after hit. And then there are the families...

So many, many new families. Really, the past 18 months I've noticed a significant increase in the number of families who have come to us desperately seeking help.  I'm not even sure how we've managed to help so many. It feels a little like the loaf of bread that fed thousands.

Oh, how I wish this didn't happen. How I wish children didn't die. American children, Italian children, Romanian children, German children, Irish children, Latin children, Canadian children, African children, Asian children, Russian children, Australian children, Maori and New Zealander children, Native American children, Arabic children, Indian children, Greek children, Spanish children, Icelandic children, all the children of all the world...

We are all connected. Their children are mine, mine theirs. When one child dies, it affects us all, even through the generations. I know this now, Chey. You taught me this.

Still, there are so many things about child death that I don't understand. Some of the most beautiful families are faced with life's most incomprehensible loss.

A student asked me yesterday how I "handle all the stress" of working with grieving families.

I really believe that the answer to that is through my mindfulness practices. They help me to feel you and remind me that you are with me, you and I are the same. We are one. Remember the first time I hiked barefoot? I felt you with me then. The first time I meditated? Then, too. The kindnesses? All you, sweet girl.

It's taken lots of time (they call it "practice" for a reason) but I've learned to tolerate uncertainty even about the big, unanswerable questions. I've learned to lean into my suffering and the suffering of others. I've learned to willingly turn into the darkness when it calls, not fearlessly yet still with some degree of courage. I've learned that I can truly love strangers and not fear being overtaken by their grief. I've learned that their grief is my grief. I've learned that it is our connectedness and integration that can heal the world. I've learned that if I still my mind, I can hear you...

I know my feet are yours. That we walk together. That all the children who belong to all the families walk together.

And so yesterday I meditated on cherry trees blossoming in winter.

I still cry nearly every day, mostly for us all, and I'm thankful for that. I'm alive.  The beauty and the pain live together in the same house. They, too, are one.

I love you and miss you every second of every day of every week of every month of every year of every decade.

Mama

Spinach Scramble and a Scone

Someone said something very recently that I accepted as incredibly hurtful and dismissive. The result was a long drive in the dark and frequent phone calls to a few beautiful friends to soothe my soul.  I sobbed. And I sobbed. And I sobbed.  And I sobbed.

It's amazing how a single word with just the right inflection can transform a day. Especially when its directed toward someone you love. Especially when that someone is your child. And particularly, when that someone is your dead child.

I grappled with why- why do people say such things? How could someone be so hurtful to another? What would that person have to gain from wounding another person?

But the whys are always met with tinning silence.

This morning, residual feelings of pain bounced up and down in my gut. 

"I get to choose how I accept this," I said to myself.

Still, my intestines felt twisted and past hurtful comments, to which I'd long since said farewell, returned for an invited visit.  But I had no time for wallowing...and,

This morning, I moved my 21-year-old daughter into her new university dorm (note that my 18 year old should have been moving in with her, but she can't because she's dead).  

I arrived a little before the office opened so I went to a coffee shop near campus.  I stood in line ahead of a lovely family with a beautiful, perfect little girl with Down's Syndrome. And she was beautiful and perfect.  Quietly, I bought an anonymous gift card to pay for their breakfast. I sat outside and watched them eat.  They were grateful, I knew. 

This gorgeous little girl kept looking at me, waving and staring, and I wondered if she knew something that I didn't know.

Two decades ago, I probably wouldn't have done something like this. But in 1994, my daughter came into my life and she shattered my heart open, sending seedlings of love and compassion (often through the Kindness Project) into the world. They are not my seeds, they are hers. 

This is who my daughter is... Cheyenne Cacciatore, beloved child, precious daughter, always loved and always missed. As valuable now as she was then and as she will always be. As worthy of dignity and recognition as anyone, dead or alive. And this is her fruition.

Done in loving memory of my own beautiful and perfect girl...

She is my baby, my child.

She is not a "just".

I finished my tea. I smiled and walked to my car, and I cried.

Don't forget to play.

Yesterday, I met with a bereaved person who is also a student.  After about an hour of talking- about all things good, bad, and in between- she said, "You know, you aren't at all what I expected you to be."

"Really?" I said in response.

"Not at all," she firmly reiterated.

"Hmmm," I grinned, "tell me more?"

She went on to say that she'd imagined me as a "depressed type", someone who'd be morose and down-trodden given the "serious and tragic nature" of my work.

"Oh?" I said. "And now you feel differently?"

"Well, yes," she continued, "you're rather... don't take this wrong, but..." She hesitated.

There was a long pause.

"Silly, " she continued after another long pause. "Almost childlike or playful or something that I can't quite put my finger on."

"So, you're saying I'm immature?" I smiled.

She apologized, and I said there was absolutely no need as I accepted that as a compliment.

I suppose I am a little immature for my age.  I do love the things children do, and I participate in these activities regularly despite the fact that my children are grown.

I love hiking barefoot. I love walking in hailstorms and getting wet (big) hair. I love playgrounds, particularly hanging upside down on the bars. Teeter-totters rule. Swings are even better. Sometimes I run in the store just because I can. I love to ride on the grocery cart downhill to my car when I'm finished shopping.  I make funny faces in the mirror, and I tease my kids incessantly (much to their chagrin). I start spontaneous 'tag-you're-it-and-you-can't-catch-me-now" games walking down the street with my daughter who calls me "immature"but then plays the game with me. I have an endless supply of immature behaviors in my repertoire of existence.

I even love squishing in the mud with friends' children.

Note: At first, the beautiful four-year-old (who would later join me in the mud party) looked at me like I was mad. I could see her mind working: Uh, mom... is this okay?

Soon after, however, she realized the glory of mud between the toes and joined me on the dark side.

Back to the conversation.

"Well, yes, I am, uh, less than adult-like at times," I admitted without shame. "But I cry too. Everyday as a matter of fact. The tears are never far from the surface... I cry for my child, and for her child and for his child and for their children and for her parents and his partner and for all the hurt and misery and suffering in the world."

She looked at me quietly. "How do you feel so sad and so happy," she asked with deep sincerity.

And I said:

This is what Death gives us: the ability to realize the preciousness of every moment in the world. The preciousness and the destruction. The joy and the sorrow. The beauty and the pain. I am here ever-so-briefly. I want to live life. To live life wildly. And free. To do those things which will enrich the moment without paying mind to what others may think or say about what should and shouldn't be. To surrender to the little girl who longs to play and seek and explore and just be. To cry when tears ask for a gateway, to stand in awe at those tiny spaces of life that are so easy to walk past, to live big- not small. I want color and contrast and silence and music and all of it. And, I am not afraid of life and the pains that it brings.

The masterpiece of this place is that we can have it all, the darkness and the light, and only in that way can we be whole and complete. Remember to mourn. Remember to play.

This is the gift of my dead child.  Though I'd rather have her than park swings or mud pies, this is the gift of my dead child.

And I'm kinda glad that I wasn't what that student expected.

Weep with us...

You will soon forget with whom you laughed. 

 You will never forget with whom you wept. 

 -Khalil Gibran 

Every other year, hundreds of bereaved parents, siblings, grandparents, friends, aunts and uncles join with professionals such as physicians, nurses, social workers, students, funeral directors, EMS workers, psychiatrists, psychologists, and others in community and solidarity. Please join us at the MISS Foundation's 9th Annual International Gathering. Because you cannot cry away this pain. It is unmendable. It can never be all right. Someone is always missing from our family circle. So we come together and remember.

-Healing with creative arts: stone work, poetry, music, dance, performance
-Mindfulness practices: meditation, prayer, stilling the mind, yoga, ecopsychology
-Integrative medicine- physical, emotional,  social, and cognitive well-being
-Results from the Traumatic Experiences and Resiliency Study (TEARS) on parental grief, economics, effects on individuals, families, and society, pharmacological interventions
-Perinatal and pediatric palliative care
-The power of empathy
-Why grief should not be treated as an illness

We explore. We inquire. We provide. We connect. We hold sacred. We give and accept love and comfort. We dance. We even laugh.

We also weep.

Come with us and share. Tell others you know.

You won't forget this experience nor the people with whom you weep.


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--Breakout workshops and preliminary schedule listed here

International Kindness Project Day is tomorrow

International Kindness Project Day. Tomorrow. From anywhere you are.

This project pays YOU. I promise.

RSVP and instructions here https://www.facebook.com/events/258980020840086/

CNN, Grief, and Bereaved Parents

For Erica and her dad and the millions of grieving parents in the U.S. and around the world: 

Our children are changing the world.

Now one of the most popular news stories online, thank you Olivia and thank you CNN.

http://www.cnn.com/2012/07/24/health/grief-leave/index.html

The Invisible People

Think occasionally of the suffering of which you spare yourself the sight.

-Albert Schweitzer

I don't often talk about the ways in which I choose to help others, strangers or not, but today I decided I needed to blog for two reasons: First, July 27 is International Kindness Project Day and I hope to inspire you to participate. You can download free kindness cards here!  Second, I'm blogging in honor of the "invisible" but beautiful people I met...

I spent a few days out of town, meeting colleagues (one of whom is a dear friend, Ira Israel, producer of a beautiful video on mindfulness).  I was on their turf, a small but buzzing beach town abounding with sidewalk cafes, designer boutiques, wine bars, and visitors from around the world.

And juxtaposed in stark, ironic contrast were the hungry people who lined the streets.

I cannot imagine what it feels like to live on the streets. I cannot know what it is to feel hunger or to rely on the pity or mercy or fear of others for survival.  I cannot begin to comprehend being invisible to thousands upon thousands who walk past me. I just cannot imagine.

I wanted to do more than give them money. I wanted to spend some time with them. So I offered to buy many of them lunch or breakfast or coffee or juice. 

There was Mary, a well-educated woman with a Masters degree from Columbia- now living on the streets and trying to deal with an alcohol problem that began with her father's early death.  She let me buy her a bottle of mango-peach juice which would ease her stomach ache.  People stared at us in line. I wondered what her life was like, no one seeing her but everyone staring at her.  We talked about pain and its effects and how we self-medicate grief.

There was Tom, a man who lost his job and his home and his family.  He'd been craving a specific burger from his favorite restaurant for months but didn't have enough money to buy one.  I spent 20 minutes with him as he devoured it, repeating his gratitude between bites. 

There was another man, I didn't get his name, but I bought him a huge cup of vanilla bean ice cream slathered with caramel, nuts, strawberries, and whipped cream. 

There was Moni. Moni had been through so much in her long life. She was struck by an impaired driver and, without insurance, went deep into debt and became addicted to pain medications after the accident. In a wheelchair, she sat on the corner with Sheila, her dusty red poodle, the only "thing in the world who loves" her.  I sat on the curb next to her and talked to her. Then, bought her a cup of coffee and a scone from Starbucks.  She said as I left, "Thank you. Thank you so much for the food. But mostly, thank you for your kind heart."  

And then there was Doug. 

I met Doug as I was walking with one of my other colleagues rather swiftly down the street. I wasn't paying attention as I was trying to hurry for a meeting.  I heard some muffled words from behind me. "What was that?" I asked my colleague.  "He asked for money," she said.  Knowing we were rushed, I kept walking. I got to the stoplight and turned to see him. As we started to cross, I said, "I have to go back."  I turned around, and she gladly followed me.

As I approached, he sat humbly broken on the bench, his head hung, hair and beard filthy and disheveled.  His nails were long, blackened from petrified dirt. He held a single, grungy, rolled up towel under his arm. He didn't have a sign. He merely asked, ever-so-quietly, as people passed, "Can you help me? I'm a veteran."  I walked up to him and smiled.  He had the most piercingly blue eyes I'd ever seen.  They nearly glowed.

"May I buy you lunch?" I asked. He looked confused. "Me?" he asked. "Sure, thank you so much," he said.

We went into Quizno's and ordered lunch.  An extra-large sandwich. Chips. A drink. An oatmeal cookie.  We talked. I asked his name and his eyes welled with tears. I bought him a gift card for Quizno's so he could have lunch and dinner the rest of the week. He kept thanking me, over and over. He was hungry and he was thirsty and he was lonely. His only possessions were a single towel upon which to lay his head at night and a few items of clothing.

I looked into his sad, grateful blue eyes and said farewell, and I could not stop my tears as I walked away.  

As I walked about a block down the street, now late for my meeting, I saw an Old Navy store. I went in and bought a few shirts, a jacket, some clean socks, and a backpack to carry things.  I went back to Doug's bench, where he sits mostly invisible to the world, and I handed him the bag. "I wish I could do more right now, but here are some things that might help you on your journey," I said.  

He looked directly in my eyes and smiled, and I realized that the gratitude he'd been expressing wasn't for the clothes or the socks or the food or the drink.  He was grateful that we had seen him. He was thankful that, even for a moment in his day, someone cared.  

"Thank you so much Joanne," he said, "you made my day."

"No, thank you Doug," I said, "you made mine."

We looked at each other and I wished him well. 

This time, we both had tears in our eyes at the parting.  And for just a single moment, we saved one another.

Please, think of the suffering in the world. Think of those less fortunate. Even for a moment, help make the world a gentler, more beautiful place in whatever way makes most sense for you. See those who are  poor, or grieving, or struggling, or hungry for food or to be seen by another. 

There is no gift like it. For the other and for your self.

_______________________________________

Please join us for International Kindness Project Day here and spread the word.

Happy Birthday to the woman who wore peach nail polish

...slightly faded peach nail polish on both hands...

That is what the autopsy report read. It came last week. Finally. After 11 years. I wept, and the heaviness of grief took hold of my throat.

I remember her peach nail polish. She loved peach. I hated it.  She loved fur coats. I detested them. She ate meat for every meal. I became a vegetarian at age 7.  She loved fine dining and elegant ballroom gowns. I loved eating veggie burgers at hippie joints and wore mostly white tanks and torn jeans.  She kept an impeccably clean home. My children's toys were impossible to keep in the toy box and I adored their crayon-drawn photos of "me and mommy" on my walls.  She felt breasts were not for public consumption, and all my babies had anytime-access to my breasts for years after birth.

We could not possibly have been more different.

Today is my dead mother's birthday.

She died far too young, far too suddenly, and far too traumatically. I watched them resuscitating her in the emergency room at my favorite hospital in town. Slow motioned chaos, confusion, fear, desperation. I wasn't ready for her to die yet. We had to come to an agreement, first, on our many disagreements. It was Halloween night.

For four long days, she lived on machines, tubes delivering her means of survival.  Until we said no more.

There is a time in all our lives when we realize that this very moment in which we exist is a game-changer. I would never get to tell her that I was sorry we didn't understand each other in the way a mother and daughter should. She would never get to tell me how proud she felt seeing me graduate, the first in our family to complete college and go on to graduate studies to eventually become "Dr. Cacciatore."  I wonder, often, what she'd have thought of that.  We never had a chance to agree to disagree about eating animals, and feeding the poor, and breastfeeding, and fur coats.

I love and miss my beautiful mother very much.  With all our differences and disagreements and frustrations, I love and miss her. I hope she is with Chey, wherever that is... I hope.

And oh, the things I would do and say now if only I could...

Josephine Cacciatore- Happy Birthday to you. Happy Birthday to you. I love you with all my heart and I miss you and my children miss you too.  I wish you could've seen them grow up.

I wish you could've seen me grow up too.

Your daughter,
Joya

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

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...

-Rumi

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.

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.

Source: blogs.scientificamerican.com via Joanne on Pinterest

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

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:

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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.

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Call it weird - call it abnormal- or call it mental illness. Whatever label you so choose to assign to the nobility of grief, this label will not be our truth.

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.

Sermon on the Mount

Sermon on the Mount

All day long, I ascended step by
     step, toward the mountain top
The path, flat and steep, rising and falling, smooth
     and jagged, moving carefully between life and death and rebirth.
I climbed for no other reason than
to empty myself into the only church that calls me by name. The place
where God lives
     in the pink verbena, troping toward the sun,
     the yellow evening primrose waiting for the moon,
     the decaying agave corpses, and the cottonwoods
     hollowed by fire.
The trees offered the sermon from the book of Job:
     The earth will teach you of God.
Mourning doves led the choir, in exhortation:
     do not move too
     swiftly or you shall miss the timeless secrets.
The wind and the reptiles and the sage juniper spoke their wisdom:
     Pause and hold. Do not pass. Wait, listen, be still.
     Stand in awe, bow in humility, 
     they counseled.
I ascended step by
     careful step, toward the mountain top.
Reverence met me there.
And like my dead child, and yours,
     the earth was my great teacher.

-April 29, 2012

If you are looking for the posts on the DSM5 controversy, see below:

A personal story of loss and depression 

Ethics and the DSM 5