Thursday, April 24, 2014

The Lies Imprison, The Truth Liberates...

“Whatever is unnamed, undepicted in images, whatever is omitted from biography, censored in collections of letters, whatever is misnamed as something else, made difficult-to-come-by, whatever is buried in the memory by the collapse of meaning under an inadequate or lying language - this will become, not merely unspoken, but unspeakable.” 

-Adrienne Rich, On Lies, Secrets, and Silence: Selected prose

An Open Letter to Those Who Use Lying Language

Dear fellow clinicians and academics, family and friends, strangers and heroes, 

I grow weary of your lying language. When you speak for me - for my child - do not soften the blow of the words that sufficiently describe the horror.

I did not experience a "situation."

This is not an "unfortunate happenstance."

I need not exclude my child, should I choose not to, in the tally of my children.

My child is not "in a better place".

It is not "easier" to lose a baby than a teenager, nor is it "harder" to lose a teenager than an adult child.

And the death of my baby during birth is not a "pregnancy or reproductive loss". 

Stop your lying language and do not speak for me. I find your prevarications offensive, minimizing, trivializing, and superficial.

The "situation" is actually an unspeakable tragedy.  Call it what it is.

The "unfortunate happenstance" is the trauma that changed my life forever.

If you say I have four children, you are lying. I have five. If I say I have four children, it may be because I do not trust you on such sacred ground. I have the authority to make that choice for myself. You do not.

That "better place" you describe is not better for me as a mother longing to put my arms around my child.

To lose a baby is to lose a child, as valuable and precious as any other child. To lose an adult child is to lose a "baby" as valuable and precious as any younger child. Love and grief are not contingent on the time spent with a child.

And the "pregnancy loss" to which you refer does not - in the least - speak the truth about the death of my plump, 8 pound, ebony haired, olive skinned daughter. I did not lose a pregnancy, and don't you dare say I did. I lost my daughter, my baby girl, all 22" inches of her perfect body.

Your fraudulent language contributes to what Rich calls the "lies, secrets, and silence."

Stop it. Now. 

Do you hear me? 

Take your lying language, write it on a piece of paper, light it aflame, and say farewell to the propaganda and cultural manipulation and death avoidance that has plagued our society far too long. And if you are in our bereaved parent community and you promulgate this language, then you are a part of the problem and an accomplice to a systemic and harmful fairytale that diminishes and devalues all our precious children.

I realize you may not be sophisticated enough to understand this or that you may be uncomfortable with the reality of traumatic death, but I implore you to stop your writing about things which you do not and cannot fathom. Stop using your voice to tell my story. Your words are a prison of deceit, constricting and distorting the authenticity of my sentence of suffering.

It is time for truth.  And the truth shall set us both - and the world - free.

Tuesday, April 1, 2014

Caveat emptor: Beware False Prophets and Distractions

Early grief is terror. Its dark, dank, putrid odor fills our lungs, and traces of its acerbic rancidity remain in our mouths. The torpid way it burns caverns in our brains and claws through the tender of flesh of our hearts makes us wish for something else. Anything else.

We resist being dragged into the belly of the whale, where we await liberation in the vomitus. It is the place where the darkest night is also the longest night.

Why would we not seek to escape such horror?

So, escape we do, at least temporarily. But these temporary distractions do not satiate. They, rather, make us thirst more for the ineffable and they add to our suffering.

We seek relief in drugs. Alcohol. Sex. Gambling. Infidelity. Food. Exercise. Television. Work. Parties. Spirituality.We seek relief in seeking.

Yes, we seek relief even in seeking.

We become enamored with the pursuit of spirituality, meaning, purpose, answers, certainty.  And there are many 'false prophets' (spiritual leaders, gurus, psychiatrists, mental health providers, coaches, even those within the grief community ad nauseum) willing to take your money and promise you what they can never give you: Peace. Happiness. Joy. Love. Relief. And spirituality, meaning, purpose, answers, certainty.

My friend came by this afternoon and told me a story of a spiritual teacher who was "so powerful" that just being in his presence moved people to tears. He healed "many from grief and from a traumatic past."  Of course, there was a significant price to pay for such a healing. And of course, he was so holy that you dared not touch him.

Call me skeptical, but I ain't buying it. A holy person who can heal suffering but whom you cannot touch? And one who promises to heal just by being in his presence?

Here is what I know about grief, false prophets, and distractions (gosh, how I loathe "lists" and here I am creating one):

1.  No one can "heal" us. No one else has the answers for us. No one can bring back our child or our husband or our parent. There are no drugs, prescription or street, no magic pills or potions, no G-ds or goddesses or divine beings, no short cuts through this. If we do not soon learn this lesson, we will spend many years ping ponging our way through grief, forsaking our authentic self out of fear and the unwillingness to surrender.

2.  If someone promises us a quick remedy through grief, we should engage our inner skeptic. Even if we feel some temporary relief, this state is not likely to 'stick' and any spiritual bypass is likely leading away from transfiguration.  Brass only turns to gold when consumed by fire.

3.  True spiritual leaders are humble servants. They do not expect others to wash their feet for 'healing'. They, rather, wash the feet of others. No one kisses their robes to receive redemption. Rather, they kneel at the sight of a small child or a wounded animal or a leper.

4.  A person who is willing to endure the putrid odor and rancidity of grief, the person who will walk with us into its fire, in our own time and in our way is a rare treasure. We should recognize and honor this person as a touchstone. And realize, too, that one day it will be our turn to help another. This is our sacred duty, and we should never forget this. If we do, we may experience tremendous dissatisfaction in our lives later. Ironically, once the dissatisfaction from this process hits, we may find ourselves distracting yet again.

5. Katherine Porter said, "The past is never where you think you left it." We can run - we can distract - we can lean on false 'prophets' who have built their own lives on the sinking sand, but unless we confront the pain that lies within us, whether dormant or not, we will never have real peace.

6.  Whitman said to dismiss anything that insults our souls. Yes. This. Someone else said that the best way to be deeply spiritual is to be deeply human. Yes. This. Too.

7.  Remember that from which we run is within us. We seek and chase and pursue and grasp all for naught. Both the beauty and the pain and the suffering and the healing are exactly where we are in this precise moment.

I admit I am concerned by all the 'expert' counselors, doctors, spiritual leaders, gurus, coaches- etcetera promising to cure grief, anxiety, or depression. I've even heard one claim to cure grief within 90 days! Another 'expert' charges $35 for a two-minute question, and about $2000 to spend a day in counseling with her. Many of these charlatans hijack others' work- their sagacity, experience, and compassion, claim the teachings as their own, and then charge others for what isn't theirs. I've seen this happen time and time again and it is very naughty.

Medicine has its repugnant maneuvers too: Let's not forget that according to the DSM5, you may be diagnosed with Major Depressive Disorder (a purported mental disorder) after only two weeks following the death of a loved one if you continue to have symptoms. Of course they can ensure you get the "care" you need if you'll just listen to your doctor...

There are so many who are vulnerable and deeply wounded who seek relief from this bottomless pain. I get it. Truly, I do. Beware though: What you so desperately seek is not to be found in a spiritual leader or guru or doctor or in a bottle or a needle or a sex act.

Everything you have to become you is within you.

And only you.

Saturday, March 8, 2014

Where your heart lives...

My parents, especially my father, loved Sedona. Well, everyone loves Sedona. Our family has had a second home here since the 1970s, off and on, and I spent countless weekends, summers, and vacations in the very tiny town of Sedona.

Around here, we have something we call "Sedona fever" wherein tourists buy homes on their first visit and move their families here in a moment of red rock impulse. It's easy to see why, isn't it?

Breathtaking monsoons
Distant red rocks

The magic of Sedona

Not an usual sighting

Since I was a little girl, I've been drawn to Sedona.

It's not a town with night life other than the magnificent stars that shine so brightly you can almost touch their glow. Yeah, I'm a little earth mother anyway and big cities were never my thing.

Playing in the creek, 16 years old

Nonetheless, when I moved here full-time six years ago, I felt I'd come home, and I mean this in a big way.

The next year, while out walking one day, I came upon a little cemetery in West Sedona, down a side street behind a U-Haul facility. Never one to resist an old cemetery (surprise, surprise), I wandered in, curiously reading epitaphs of the dead, many of whom were children.

Cemetery in West Sedona

I knew the town I loved so much my entire life was named after Sedona Schnebly, one of the earlier settlers, but I didn't know much else about her.

Sedona Schnebly

And then while walking around in this humble and quite simple cemetery, I chanced upon Sedona's grave. I was so surprised, and I felt a deep connection with her resting place.

Sedona Schnebly's grave

Suddenly, I noticed, just next to hers, another grave. "Pearl A. Schnebly…beloved daughter."

Her precious Pearl

How is it that I never knew the town I so loved all my life was named after one of us, a bereaved mother?

I sat down on the dirt by their graves and tears fell. I wanted to know more so I began to research the lives of Sedona and Pearl Schnebly…

It was 1905, and Sedona's 6-year-old daughter was riding her pony when the unthinkable happened. Sedona was there, helplessly watching as her daughter was dragged. The grief was unbearable.

Sedona used to look out the window of her kitchen onto the grave of little Pearl every day. She was so distraught by her beloved baby's death that they fled Sedona several months later.

The home where Pearl was buried

Sedona Schnebly did not return to the place she so loved until her own burial 45 years later, as requested, beside her precious Pearl, in 1950.

I visit her grave often now, and I talk to Sedona- and to Pearl- and I understand why this is the only place on earth I want to live.


If you're a provider and want some excellent bereavement care training and a chance to see Sedona in person, visit this link.

Friday, January 31, 2014

Everything I need to know about grief I learned from my plants (well, not really) but...

‎"The seed is in the ground. Now may we rest in hope while darkness does its work." Wendell Berry

I have a little spot in my new home, just under the stairs, and I call it my St Francis wall. St Francis is my favorite of all the saints, save San Juan de la Cruz, and I love having a little place in my home to remain conscious of his compassionate axioms.

For about two months, I had some wonderful little plants surrounding my Francis wall. I bought a 'forever sun' lamp which I kept on 24 hours a day (see the light shining from the corner) because this space had no natural lighting at all. 

However, my once-little happy plants began to change. They were not doing well. 

They were sick, obviously, and needed care. I tried variously things over the course of a few weeks… but nothing worked. 

Then, I thought about grief.

"Oh my gosh! Of course!" I thought, "The plants are not getting darkness now at all, are they?"  

I went to the literature and found out that, indeed, plants require darkness for photosynthesis. A carbon reaction reduces CO2 to form carbohydrates and thus to release oxygen. This happens only in the darkness of the night. The darkness is also necessary for photoperiod, the process by which the plant prepares itself for flowering, for blossoming.

Talk about a 'doy' moment of perspicuity. 

When I read about this process for plants, I sat down and cried. Nature, the Great Teacher, thank you, thank you. 

Of course. 

We need the darkness to be whole, to be healthy, to blossom. 

My plant, now, after now being exposed to darkness again looks entirely different.

           ...And so do I.

Wednesday, December 4, 2013

Grief, Holidays, and Connection

Grief does not discriminate, and loss will, eventually, affect us all. And for many who have already suffered loss, the holidays mark a significant and painful reminder of that person’s absence during, what is culturally recognized as, a time of celebration. Often, those mourning the death of a loved one suffer in silence during the holiday, trying very hard to put on their “game face”. 

Yet, for some mourners, this forced inauthenticity may exacerbate their already fragile emotional state, making them feel disconnected from family, friends and other loved ones during the holidays.

So what do we do as mourners when others, all around us, are celebrating? In my nearly two decades of working with and researching the traumatically bereaved I found some things which may help connect us deeply with self, other, and the natural world during what can be a very overwhelming time of year:  

1. Sharing your feelings openly and honestly with others directly may help them to understand. Sometimes, the process of discussing the loved one who died before the gathering begins can relieve the tension others may feel wondering, “Should I talk about this or not?”

2.  Rituals are often very helpful, especially new ones. A few ideas, for example, include lighting a candle and having a moment of silence at the beginning of the holiday meal, asking family members to make a donation to a specific charity in his/her name, setting an empty place at the table for him/her and asking each person to tell their favorite memory, volunteering as a family in his/her memory, buying a gift for a child the same age and donating it, and a craft-making project where family and friends make an ornament in his/her memory. This not only gives others permission to share their feelings but also brings people together by enacting grief.

3.  Connection with a support group in your area can be very helpful.  Empirical research suggests that social support is one of the most important variables in helping grievers cope.  There are many grief groups that meet in person and online. Even social media can be used to help connect grievers to one another.

4.  Get out into nature if weather permits. Take a walk, hike, or just sit outside. If that’s not possible, then bring nature inside. Create an indoor window garden or a Zen sand garden.  When possible, expose yourself to natural sunlight at least a few minutes each day.

5.  Move your body. Exercise, even just walking, can help increase positive emotional states.

6.  Practice intentional solitude using contemplative prayer, silent time, or meditation. Take a few minutes every morning and evening to breathe slowly and deeply, eyes lightly closed. Focus on the stillness if you can. Keep this practice going.

7.  Change your routine. From the small things like changing the music you play when putting up the tree or the meal you eat to leaving town for a planned holiday vacation, novelty can help us cope at difficult times.

8.   If you are spending time with others during the holidays, tell them in advance of your fragility. Let them know that you may leave early (it’s nothing personal toward them), ask them if there is a quiet spot in the house where you can go to be alone if you need it, and tell them the ways in which you’d like them to discuss- or not to discuss- your feelings openly with others.

9.  Give others permission to talk about your precious loved one who died. Tell them what you need. Sometimes, fear gets in the way of others approaching the bereaved.  You can write a letter delineating what you would like. For example, “Dear friends, At this time of year, we are struggling without our daughter, Jane, in our home.  We know it is frightening but we’d like to ask you to talk about her with us and to ask how we are really doing.  We’d like you to remember her in your prayers, and then tell us when you do.  We’d like you to consider a donation to X charity in her name.  Please send us emails rather than calling us.  We find phone calls to be overwhelming right now. We’d appreciate help with meals during the week of Christmas. If you are able to leave a meal at the door, we’d appreciate it.  Our friend, Mary, will be coordinating that for us. Please contact her at XXX-XXXX.  Finally, we love to receive cards so please keep them coming. We love hearing your favorite memories of Jane. Thank you. We are grateful for your support, and will need it for many years to come.”

10.   Finally, give yourself permission to take care of you and your family first. It is okay to turn down invitations to events, to cut back on holiday celebrations and d├ęcor, and to ask for help with child family members who may also be grieving. Eat well, get enough rest when you can, and watch alcohol/drug consumption. Stress, naturally, distracts us from self-care, so you’ll need to be more vigilant during this time of year.

There is no question that, for many, grief and the sense of isolation and loneliness amplifies during holidays.  These 10 simple strategies may help us remain more self-aware, self-compassionate, and feeling more connected to those around us who love us, to our precious one who died, and to a deeper and wounded part of our self. Together, connected, we can get through these dark days.

Monday, November 25, 2013

So, you're in a grateful kinda mood?

It's the time of year when people are counting their blessings, feeling gratitude and love and generosity ooze from their pores.  Unfortunately, for parents whose children have died, being thankful for anything feels challenging. Of course.

If you are one of the fortunate who gets to tuck all your children into bed this holiday season: If you are one of the fortunate who gets to wipe pumpkin pie off all your children's faces: If you are one of the fortunate who gets to enjoy seeing your own family all together: If you are one of the fortunate who has never buried or cremated one of your own children, consider your life deeply fortunate indeed.

You see, every day I meet countless families who are not as fortunate. They do not tuck all their children into bed; they do not get to clean all their messes faces or hear all their excited exclamations or watch them all play and see them all grow.

Children, of all ages, can and do die.

And do you know that when you complain about how tired you are from holiday shopping and you complain about how hard your life is and that your team lost the game and that your child is annoying and you complain about how little sleep you're getting, this hurts us because we wish we could complain about such trivialities.

And do you know that when you avoid us, as if we are lepers from whom you must avert your gaze, when we are treated as if our children are forgotten and we are somehow doing grief wrong because - well, yes, as a matter of fact - we are still sad, this hurts us. Walking past our aisle at the grocery store to avoid running into us hurts. Saying "Hi, how are you?" as if nothing happened- that hurts.

So, the attitudes toward bereaved parents are a microcosm of society at large: If we pretend children don't die, then our own children won't die. This is a lie, perpetuated by a death and grief avoidant culture, that harms bereaved parents and families. Organizations like the MISS Foundation provide an invaluable service to grieving families. Yet, the MISS Foundation has tremendous trouble securing funding for our priceless, life-saving services. Grantors say they don't like our cause much. They say we aren't "sexy" enough. Oh, right. Yes, the deaths of babies and children is about as "unsexy" as you get. But damned right when someone in the community needs us everyone is calling.

So this holiday season, if you really want to help, sit next to a bereaved parent and listen to the story of their precious child who died. Buy them an ornament and make a donation in their child's name. Tell your company to make a tax deductible donation to the MISS Foundation so that we can continue to do the job that no one else in society wants to do.

And be grateful, grateful, grateful that tonight, your child will slip into golden slumber, in your home, in her bed, and that in the morning she will put her arms around your neck and say, "I love you mommy" or "I love you daddy."

Not all parents get to do that.

How privileged you are to count those moments, first, in your blessings.

Sunday, November 3, 2013

Weeping Deeply

If you haven't wept deeply, you haven't begun to meditate.
-Ajahn Chah

So, my little retreat center opened in Sedona officially with a grief-zazen day this past Saturday. Beautifully broken grieving people of all ages filled the room from early 20s and older who lost their Beloveds very recently and some years ago.

First, we lit a candle in honor of all our precious ones gone too soon.

We introduced ourselves.

Then, we sat in the stillness, meditating, praying, and holding space for grief.

The first sit was about 25 minutes long, and we opened with some Rilke. We paused between sits to weep, to listen, to share, to invoke poetry and prose:

We sat together in and out of meditation for hours. And, the hearts, oh the broken shattered pieces of hearts, the tears shed in the room... truly sacred ground.

And then, something truly amazing happened. As we ended, each person spoke the Beloved's name to the sound of the bell, and a young man, Evan, big brother to beautiful Blake who died at 19 of cancer, approached Lisa, mother of beautiful Michael Angelo, who died at age 12 in 2000 and Michael who just died this year at age 19.  He told her that, as she spoke Michael Angelo's name, he recognized his name... then he suddenly remembered a note one of his friends posted on Facebook a few months earlier. This was the post:

Wow. Wow.

Yes. Evan's friend was the recipient of a Kindness Project committed by Michael & Anthony's mom in Phoenix, Arizona, a city of millions. And these families- as strangers- were now meeting in the same room, together, touched by compassion of three young men who died far too soon.  The Kindness Project (here) - which I officially started in early 1996 - had brought two strangers together in a way I could never have imagined.  We were all stunned.

And not only that, but Sarah, the recipient who posted the kindness committed to her, paid it forward, so Michael Angelo's love kept going and going in the world.

This is my tribe. It's a sad, brokenhearted, despairing tribe.  And I believe, as Rabbi Mendel of Kotzk said, "there is nothing more whole than a broken heart."


I offer pause and deep bows to these Beloved ones, gone far too soon:

Michael Angelo

Head over to the Kindness Project Facebook page to stay in touch here

Sunday, September 22, 2013

Selah: Pause, reflect, find meaning

April 17-20, 2014
in Sedona, Arizona
join us for a remarkable time
of communion with self, other, and grief.

Selah (Cacciatore, 2012) is a mindfulness-guided path 
through grief that recognizes several foci: 
self, self and other, and other. 

The term selah itself derives from the Hebrew word celah
noted in the book of Psalms to remind the reader to pause, reflect, and contemplate meaning.

The idea is to cultivate an authentic, tolerant, 
and enriching relationship between mourners and their grief, 
one that unites their suffering in pause, reflection, and meaning, 
and mourners find their own path in their own way and in their own time. 


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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