Thursday, March 23, 2017

Conservator - A Thinly Veiled Horror Story

  1. a person responsible for the repair and preservation of works of art, buildings, or other things of cultural or environmental interest.
    • US
      a guardian or protector.

      "the court does not need to appoint a conservator to handle an incapacitated person's affairs"

I am Sophie's conservator. Every two years, the government checks in on our relationship, which is as it should be, I guess, although the whole process is akin, figuratively, to getting stabbed in the heart. It's the same feeling as listening to the robo calls from Sophie's LAUSD high school that describe the various senior year festivities and activities. Sophie has been a "senior" for over three years, yet she won't be going to college day or career day or military sign-up day or cap and gown ordering day or prom day or -- you understand the drill. If my imagination were a work of art, I'd say that as its conservator, I let things roll, I elaborate, I preserve --

It is what it is, as they say.

Yesterday, a worker from the city came to our house to interview Sophie to make sure that she still needed a conservator.  She was terrified of our dog Valentine, the goofiest poodle on the planet but otherwise a mild enough sort who immediately greeted Sophie. The dog greeted her and the worker greeted Sophie, that is. After she finished asking me a bunch of questions about Sophie's needs and medications and doctors and health history and educational status, she told me that she needed to ask Sophie some questions. I raised my eyebrows. I had kept Sophie home from school for the meeting, and she was sitting in her wheelchair humming. If you're a new reader to the blog, Sophie doesn't hum songs. She makes a steady monotonous sound through closed lips that is at once an expression of agitation (meaning she wants to get up and out of the chair and go outside), of discomfort (of what I have no idea) or perhaps just of a self-stimulating nature that feels good. Depending on my mood or where I am in the caregiver cycle, the sound can make me feel alert to alleviating her discomfort, amused (I have my tolerant side), agitated (okay, CRAZY) or indifferent. Yesterday, I felt amused by Sophie's insistent hum yet my heart throbbed from the ax that the worker had metaphorically thrust into it.

I'm a conservator, a person who guards and protects my adult daughter. I'm also responsible for the repair and preservation of a work of art -- my imagination, I think. A thing of cultural interest.  My writer mind. I listened with amusement to the questions so earnestly asked by this cheerful, bland woman.

Sophie, do you know who you are?

Silence. Hum.

Sophie, do you need an attorney?

Silence. Hum.

Sophie, would you like to vote?

Silence. (I might have interjected here over the hum with my own answer which would be Yes! And hopefully get the asshole and his band of billionaires out of the government!)

We tolerate these things, we conservators.

The worker turned to me, still earnest yet apologetic. We have to ask these questions because there are those who would take advantage of people's disabilities. I told her how much I appreciated that care and attention. I meant it. She stood up, and I stood up and she handed me the paperwork and I put one hand on Sophie's head as the worker said good-bye. Then she said, Plus, you never know! Sophie might wake up one morning and start talking and recover!

Reader, it was then that I removed the ax from my own heart and brought it over the worker's head, cleaving it in two. 

Valentine sniffed around a bit and smiled and Sophie hummed.

Monday, March 20, 2017

March Madness

The Department of Motor Vehicles, Los Angeles. CA 2017

My understanding of what's going on in this country is shrinking, and I find myself opening up articles, reading a few sentences and then sighing in exasperation or grimacing in disgust or taking in breaths to allay anxiety or rolling my eyes heaven-ward in bewilderment.

Are we supposed to understand what's going on?

I hate to say it, but I rely almost exclusively now on acronyms to express myself in this area. WTF?

I remember this quote by the great 18th century satirist, Jonathan Swift:
It is useless to attempt to reason a man out of a thing he was never reasoned into.
I never wonder to see men wicked, but I often wonder to see them not ashamed. 
We're all Gullivers here, methinks.

Sophie went back to school today for the first time in weeks, other than the day I brought her in for her birthday. I don't feel like going over what's been going on because, frankly, I'm so tired of the whole shebang, and I imagine you are, too. Suffice it to say that she's trending better even as we slowly wean her from the hideous benzodiazepine and supplement more aggressively with THC. I'm trending better right along with her because you know where she stops, I begin or where I stop, she begins and it's a fine, fine line. I also got acupuncture from our beloved Dr. Jin.

Yes. THC, baby. The psychoactive stuff that I myself have not partaken of since the halcyon days of college at the University of North Carolina at Chapel Hill. If I'd had any idea that I'd be administering a pale green gold oily version of it to my seizing and drug-addled daughter thirty-plus years later, I would have smoked more and studied less. Hell, I would have joined in with something more than tolerance when my boyfriend and his housemates watched the Tar Heels play basketball with the sound turned down and the bootleg Grateful Dead tapes turned up.


If you hear Old Racist Alabama Elf-Man Sessions or Old Up Big Pharma's Ass Georgia Cracker Price make any cracks about medical marijuana being a joke, tell them I'm going to beat the crap out of them in my mind. My tiny little mother mind™ knows few boundaries, is exasperated, disgusted, anxious and bewildered and would love a good red neck upon which to project its conflicts. Just a little March Madness.

Speaking of conflicts and the Tar Heels, did ya'll watch that game yesterday? It was a nail-biter that I watched with my sons and Sophie. March Madness for sure. This is a picture of when we had fallen behind Arizona after an early 17-point lead. I have quite effectively brainwashed my sons to be ardent Carolina basketball fans, and they were nervous wrecks.

Here's a video of the action when things got really tense at the end, right before I began to fold the boys' clean socks into balls, a task that I turned over to them when they were about five and seven years old. So many boring white socks I thought I'd go mad, wrote Virginia Woolf. I thought I was going to have a stroke or a heart attack watching the last few minutes of the game and even folded The Brother's laundry and smoked a few cigarettes in between bong hits.*

Between the not smoking too much THC in college, giving Sophie enough THC to help her brain today and parenting my boys to cheer ardently for a team that I love despite not knowing a damn thing about the sport -- well -- I'm going to humble brag here about my parenting skills. I am bewildered, to say the least.

* Just kidding. Virginia Woolf did not write that.

Sunday, March 19, 2017

R Egret

 I went to the most beautiful park in Orange County yesterday, walked around and took bunches of photos. Oliver rode his bike on the trails, disappearing into the grasses. The rain we had last month has turned everything green, and even the weeds and grasses were chest high. I watched that egret above stalk a lizard for a few minutes, its neck swaying in anticipation. I'm not sure it ever got it. R egret is what I felt. For all the moments gone, unaware.

Hawks were screaming in some kind of mating ritual, and a bunch of men on the other side of middle age were flying remote-controlled airplanes in an empty field. Men and their toys, is what I thought.  I prefer the hawk.

I was texting with a couple of friends today and all agreed that our general Sunday blues were even bluer. One friend suggested that it was the change in the weather, the weird onset of spring. Maybe it's the death of Chuck Berry, another friend suggested. Maybe it's just life in general these days, I think we all agreed.  I remembered the Edna St. Vincent Millay poem that I trundle out every April because it speaks so directly to the feeling, particularly that last line. I think I'll post it a little earlier in honor of climate change.

I do love my dark blue friends.


To what purpose, April, do you return again? 
Beauty is not enough. 
You can no longer quiet me with the redness 
Of little leaves opening stickily. 
I know what I know. 
The sun is hot on my neck as I observe 
The spikes of the crocus. 
The smell of the earth is good. 
It is apparent that there is no death. 
But what does that signify? 
Not only under ground are the brains of men 
Eaten by maggots. 
Life in itself 
Is nothing, 
An empty cup, a flight of uncarpeted stairs. 
It is not enough that yearly, down this hill, 
Comes like an idiot, babbling and strewing flowers. 

Edna St. Vincent Millay

Saturday, March 18, 2017

The Measure of Our Desperation

We've got two choices: resist or cut and run.

Cutting and running is the choice of the privileged and the desperate, so maybe it's more about the measure of our desperation.

Here's a poem:


In our teens we all bought girdles
with rubber knobs to hold up our stockings.
We wiggled into them, our “foundations.”
So many things look absurd from a distance
that people still take seriously,
like whether there's a Heaven for pets.

What ever happened to my girdle?
One day I peeled it off for the last time
and all hell broke loose.

Connie Wanek, from Rival Gardens

I cut and pasted the poem here from The Writer's Almanac this morning after reading someone's post on Facebook. 

I bought a copy of Wanek's book and hope she doesn't mind that I've put her poem on my blog. Maybe you'll buy a copy of her book, too. 

So many people are throwing around their desire to flee the Disunited States of Amerikkka, Inc., and I get it. I'm a person who rarely feels sick to her stomach in the literal sense of the word and have probably actually vomited only about five times in my entire life, but I've felt more nauseous and fearful over the last few months than I have in the 53 years previous that I've lived on the planet. I wouldn't mind living in a small space along the coast of Costa Rica despite the bugs. I'd move to New Zealand, but traveling that far in a plane with Sophie might be worse than taking the fallout of a nuclear bomb from North Korea. 

You'll have to forgive my dark, tasteless humor if you're new here. 


The thing is, I can't shake my privilege. What about all those who won't be able to cut and run? Are we as desperate as those people who travel thousands of miles through deserts and over barbed wire with only the clothes they're wearing? I'm not. This is as much our country as the fuckers who are ruling it right now. I'm going to have to remain fierce and resist the bullshit, even if the resistance amounts to nothing. If I take the measure of my desperation, I immediately plunge back into the many moments of watching Sophie seize and suffer, of watching my sense of control slip away, vomited up in some intense instant and then flushed down with water, my own face clammy against the cool of the bathroom floor. And still. Do you understand what I'm saying? I'm going to have to remain fierce and resist the bullshit. In this moment, this now, that ends the moments before and begins the moments after and on. 

It all sounds dramatic, maybe too dramatic. Peeling it off and letting all hell break loose sounds better.


*For those who are new, I hate this word and use it sparingly and in jest.

Thursday, March 16, 2017


The birds are singing me back this morning to last year and an apartment filled with slanted light, their song on air through plastic blinds, the drift, a breeze and quiet. I found a Buddha necklace curled in a little box on my dresser, pulled it out and remembered it falling apart, worn by water and too many knots, but I loved it so. The chain is fabric and beaded and fell apart in my hands even now, leaving the medal with its tiny notched saint sitting cross-legged in my palm. I threaded a pink ribbon through it and tied it around my neck. He (she) sits slant in the shallow hollow between clavicles, the suprasternal notch. That sounds like the moon or a star, a hand at my throat, smooth dark places that take touch. I sing words, let go notch. Aster a flower, the n celestial, something with wings, sound in body, shadow and light.

Monday, March 13, 2017

Desert Jewels

I stood and looked to the east and took that picture as the sun rose on Sunday morning near the Salton Sea. I shouted hallelujah in my mind and looked to the west where the moon was going down.

The birds were truly like a chorus, and I whispered hallelujah in my mind. My troubled mind so heavy along with my heart over Sophie's struggles. The photographer of birds who holds my heavy heart with such light hands.

Day after day I think of you as soon as I wake up. Someone has put cries of birds on the air like jewels.
Ann Carson, from Short Talks

I hope you can play that video because it's sublime. I also posted it on Instagram where you can find me at elizabettaa.

I went with C to see the desert bloom, supposedly over-the-top-once-in-a-decade because of the unusual amount of rain we had this winter. The desert didn't disappoint, even though about a million people were doing the same thing. The ground was covered in a carpet of yellows and purples and whites. I took pictures with the fancy lens, but I haven't uploaded them, yet, so here are some from my iPhone.

We met dear Yolie and Tearful in the desert where they're living the boondocking life. It's like a dream both to meet them and see what they're doing. They are a couple with whom I connected many many years ago on the world wide webs. Now we've met in person, and it was an intense collision. We already knew one another. I held onto both of them for a good long time, absorbed their goodness and strength.

These internet friendships are the real thing, people.

This morning I read about the trauma that Syrian children have suffered, have absorbed, will suffer. I read about the people of the Sudan, of Yemen and other countries -- the starving bloated face of a child, the warning that displacement, famine, warfare will bring on the greatest humanitarian crisis since 1945. I looked at the smug faces and read the words of those who rule the plutocracy that is the Disunited States of Amerikkkaa. I felt the dread of what is to come even as I heard my own daughter's sigh into seizure over the baby monitor. I rushed into her again and again and again and all the years of agains. Suffering. The world is so vast, the suffering so enormous, I texted a friend, our efforts to stem it so paltry. If I am charged to care for Sophie and suffer in doing it, I will try to do it with strength and love.

I repeated that over and over and over today.

Perspective as Higher Power, my friend Chris said. Yes. The ongoingness of it all.

Friday, March 10, 2017

Dragon Prayer

I'm really slacking off here on the old a moon, worn as if it had been a shell.  I don't even know where to start. Do I even need to start or start back? Sophie turned 22 years old on the 8th, and there was a bit of celebrating,

but Sophie isn't doing so well.

I had a mini nervous breakdown this week, too, which involved some early morning throwing of the Virgin Mary Oracle and other desperate drama, and that was partly because the Republif*^ks are dismantling our healthcare and partly because I went into the wormhole of Trying to Figure Things Out and have decided that Sophie is suffering from benzodiazepine withdrawal syndrome.  Strangely -- or not --  figuring something out (meaning your intuition is confirmed/affirmed backed by research and science) means an incredible release from fear into calm. The two reasons for my mini nervous breakdown are intricately entwined and can be summed up in three words: Medical Industrial Complex. Normally, I'd explicate, but the rant would be epic and, to tell you the truth, I don't feel like wasting my anger on the screen, and I'm better now, calmer. I'm also too busy fighting with CVS drugstore and Anthem Blue Shield to switch the benzo from tablet to liquid so that I can begin the process of weaning again (I can take away tinier amounts if it's liquid). I think the struggle is similar to Ben Carson going from neurosurgery to housing and development, all while comparing slavery to immigration -- oh, Bless his Neurosurgeon heart. 

You're going to need a pre-auth because this is a narcotic, the earnest pharmacist told me for, perhaps, the five millionth time since Sophie has been on this drug for nine years (the drug should apparently not be taken for more than a few weeks but, hey, let's give it to babies with epilepsy!) I'm also administering a new protocol of THC to help mitigate the horrendous effects of the syndrome and gathering information from the wonderful Dr. Bonni and from my friends in the know because The People in Charge don't know jacksh*^t about marijuana. Speaking of those in the know, the Ass Hole Care Act (AHCA) as proposed by the Chief AH Eddie Munster will be devastating to those with disabilities in particular and not much better for everyone else. It'll be awesome for insurance companies, though, and medical device manufacturers and, I guess, for those yokels out there who think the government has been coming between them and their doctor with the Affordable Care Act (yokels, insurance companies call the shots, not the government but hey, big business, free markets, the glories of unfettered capitalism!)

Oops. I said I wasn't going to rant.

Maybe I should quote a little Jesus.

Blessed are the meek for they shall inherit the earth. (Matthew 5:5)

Then shall he answer them, saying, Verily I say unto you, Inasmuch as ye did it not to one of the least of these, ye did it not to me. (Matthew 25:45)

Bikkhu Boddhi says,  "if we are to close the gap between ideal and actuality—between the envisaged aim of striving and the lived experience of our everyday lives—it is necessary for us to pay greater heed to the task of repetition. "

I think of myself at present as a dragon coming out of a cave. There's vision and hope in the fire coming out of my mouth, and there's also my tail, its scales the glitter of the past, replicated over and over. The blast of fire. Drag. Swish.

Saturday, March 4, 2017

Four Things and a Quote

Pacific Ocean, The Port of Los Angeles, Snow-topped Mountains

He slid further down as it reached his shoulders, in a kind of nirvana not based on freedom from desires but on attainment.
James Salter, from his novel All That Is 


It was a rough week because of Sophie and isn't it usually about Sophie and while I've written here in (on) air for years about these days, these rough days, I came up for it (air) today lying on my back rocking with the boat my face to the sun. The word rock. The word lull. The boat rocks and lulls me, the expanse of gray, a bit of blue. Once we'd passed the lighthouse, the slick seals on the buoys, the drone of the motor and the wind in my face, my hair whipped, I'm whipped, god but I'm always so damn whipped. I held the hand of the man that I love, he gives to me (air) and the whales do that thing with air, the word blow, and we stand there (in air) and wait for the rise of it, the arch of gray over gray (a bit of blue) before it slips back under, last the tail. The word fluke. 


Two men in a donut shop drinking coffee and eating crullers. You know what war is? the older white one asked the younger black one. The other man knew it wasn't a question for him to answer. He waited. It's the failure of imagination, the man answered.


I read this somewhere and wrote it down, without attribution. I'm sorry for that. Birding is a way of heightened, finely tuned seeing.


Labels. I pulled into a crowded gas station at sunset tonight in San Pedro, made room for a man leaving. Your lights! I said. Thank you, baby, he said. He was bald. He was black. The woman at the tank next to me was cleaning garbage out of her car. She wore a head scarf. She was Muslim. A man walked up to her and remarked on her scarf. Insulted her. He was bald. He was Hispanic. I said Knock it off. He looked at me, cocked his head and walked away.  She nodded her head, got into her car and drove away. I have long dark hair. I am white.

Wednesday, March 1, 2017

This Side of the Grave

We've got to keep writing and making art.

I'm really trying to hold on to hope. Heaney's The Cure at Troy has sustained me for decades, and this morning I'm typing out the part I love right here, by memory:

Human beings suffer,
They torture one another,
They get hurt and get hard.
No poem or play or song
Can fully right a wrong
Inflicted and endured

The innocent in gaols
Beat on their bars together
A hunger-striker's father
Stands in the graveyard dumb.
The police widow in veils
Faints at the funeral home.

History says, Don't hope
On this side of the grave.
But then, once in a lifetime
The longed-for tidal wave
Of justice can rise up,
And hope and history rhyme.

So hope for a great sea-change
On the far side of revenge.
Believe that a further shore
Is reachable from here.
Believe in miracles
And cures and healing wells.

Call miracle self-healing:
The utter, self-revealing
Double-take of feeling.
If there's fire on the mountain
Or lightning and storm
And a god speaks from the sky

That means someone is hearing
The outcry and the birth-cry
Of new life at its term.
It means once in a lifetime
That justice can rise up
And hope and history rhyme.

I feel not a little despair.

Did you see the thin lips of the men who canvassed the crowd, pushed through ahead of him last night as he walked in and then, again, walked out?

Struck last night during the presidential address by a memory of working with women who had been abused by their husbands, by the ways abusers show recalcitrance, how the cycle continues. His dark imposition on the world. The two behind him. I cried during his convention speech and cried again during the inaugural one. Last night I watched the widow turn her face up to the sky as he droned on and the glamorous daughter looked on and all the people cried. No tears from me. I choked on bile. I thought about the great war machine that all presidents turn on, the tyranny of the ultimate sacrifice, of valuing soldiers' lives more than those they kill. Samsara, illusion, delusion. Maya, the illusion or appearance of the phenomenal world.

This morning I see that the attorney general will not be supporting those states who have legalized marijuana, that he will, indeed, be marshaling forces to come down hard. He's got federal law to enforce and federal law pre-empts state law. I'm going to persist in believing in miracles and cures and healing wells even as prisons continue to fill and children die and the sheep are driven over the cliff.

I'm going swimming today, may a further shore be reachable.

Monday, February 27, 2017

Published in Mom Egg Review

So after a number of years of submitting my writing sporadically and getting summarily rejected, the wonderful journal Mom Egg Review accepted a short bit of prose and is publishing it in their print edition in April. I hope ya'll will support this small press and order a copy -- they are available now. The other work in the issue is brilliant, and I'm proud to be a part of it again (they published a piece of mine several years ago).

Here are the deets:

Mom Egg Review Vol. 15 is a unique literary collection about motherhood. MER is about being a mother in its many varieties; it is also about being a daughter, worker, partner, artist, a member of cultures and communities; MER explores how these identities can collide and coexist. We publish work with ideas, exciting use of language, and strong creative energy. Our writers consider the body, work, family and societal roles, sex, local and global crises, and making art. The stories and poems -- intelligent, irreverent, lyrical, funny, sharp -- cast light on the multifaceted life experience of motherhood, and out from it.

You can read more about MER and find additional features, book reviews, interviews, submissions info and more at

The issue launches this April, but copies are available now. As a contributor, I can invite friends and family to purchase copies at a discount MER community rate of $15 (cover price is $18). Click the link for more info or if you would like to order a copy for yourself or as a gift.

Don't stop submitting your work. It's been my experience that if you keep doggedly submitting, eventually someone out there will take a chance and publish your work. As for writing, it goes without saying that you keep at it anyway.

Tuesday, February 21, 2017

and she shouted, "Bravo!"

Girl on the Flying Trapeze, 1936 Julia Thecla

her ethereal and sensuous portrayal of dreams, fairytales, and planetary realms were extraordinary explorations of alternative social orders.
DePaul University Art Museum, describing Julia Thecla 

I watched Wings of Desire the other night on a bed in a dark hotel room for the thousandth time, had forgotten the black and white film turning to color every now and then. We are black and white yet both see color, now and then, but this was after and one of us dreamt (him) and the other knew every word (her). Now and then. The German faces, the wide smile, the tilted head, the closed eyes. There's something spiritual in the library's murmurs, the way the angels walk among books, heads bowed over them. Wings on a bronze statue, a wall that divides Berlin. An angel lays his head on the man's shoulder, yet the man jumps over anyway and the angel screams. The desire for life. The woman on the flying trapeze, how later she shrugs out of her robe, her back, sinuous. The desire for love, to love. Even before I swung above the crowd myself, then, I was told you've an amazing back. I've a memory like a trap. I remember every word. You've an amazing back, he said. Now. Twice I've been told, then and now.

This morning Sophie groaned in her sleep before dawn, and I ran into her while she seized. It was a violent one and I was smacked in the face by one of her arms. I bent over her, gathering the limbs, what flies. I've walked the rope and swung on the trapeze, so many little people below. My back is strong. It never hurts. I don't feel gentle toward the situation in some moments. I don't feel gentle toward her. It's where I leave off and she begins and there's a space there filled with nothing. When I gathered her in my arms, limp now (then), a pieta, I did cry. And cry. And cry. And cry. She was spent and it cost me tears which are, in comparison, nothing.

The dog barked once and a package was thrown through the slot of the front door, made a thump. I left Sophie to go and pick it up, a small but heavy box from Seattle. Inside, a heavy book, The Complete Poems of Anna Akhmatova, translated by Judith Hemschemeyer. A pink Post-it over the crook of the poet's nose:

Dearest Adorable --
Reach for this
volume when
you most need
to counteract
the crazy.

❤️️  Leslie  xo

Yes, I took it as sign.
The signified and the signifier.

I seem to myself, as in a dream,
An accidental guest in this dreadful body. (Anna Akhmatova)

Several hours later, with no prompt from me, I received a picture of a painting on my phone, a girl on a trapeze, awkward yet strong.

I am thinking of you, she said (Tanya, my friend, not the girl). I asked her (Tanya, not the girl), Who painted this? 

Julia Thecla, Tanya said, I love her. 

Thecla is a forgotten Chicago painter of the 1930s and 1940s, in the school of magical realism. I did not know her.

Magical realism, a literary genre to which I have been drawn (then) -- Marquez, Borgia, Allende -- is also a genre of art, I learn (now). There are details (Sophie's groan, her bed, the seizure, her arms, my back, my tears, her limp body) that are real and then something strange, unbelievable  (the thump, the package, the Akhmatova, the note, the painting, the girl on the trapeze, ), through a hole in the door, via air.

I fly through the air with the greatest of ease

Monday, February 20, 2017

It Never Rains in Southern California

Well, I guess I should say Happy President's Day!

I posted the following on my Facebook page for an Andy Warhol fifteen minutes and then decided to take it down because it's so vile. Someone I know asked me whether it was real. Yes, it's real. It's true and not alternative fact. It's a transcript of 45's comments from ten years ago, and even as I acknowledge my role as contributor to ugliness, it bears repeating because we're all responsible on some level. I still can't believe that 45 now represents all of us on the world stage.

Let's move on.

On Saturday night, I attended the first meeting of our local Indivisible group. We're called Active Empathy, and we're intent on active resistance to not just 45 but also to the extreme right Republicans in power whose agenda doesn't represent us or -- in some cases -- the majority of people in this country, in addition to its undoing progress to protect our environment and ensure equal access to our healthcare and threatening our first amendment rights. I'd have to make this a Faulknerian sentence if I kept typing everything that's under threat, but our intentions include flipping the legislature with methodical action. The group that attended the first meeting was diverse in age, race, religion, sex and sexuality, a mini-Los Angeles. We introduced ourselves and told the others what issues we were most interested or concerned. The range was wide. Some tears were shed and some expressed anger. Many attendees are originally from the "flyover" states and perfectly aware that not everyone who lives in those states condones some of the more egregious behavior of 45 or the conservative platform. Many expressed the need to be self-aware, to at least acknowledge our part in further dividing the country with our anger and sometimes condescension. Others had more of a screw that attitude, believing it is going to take the adoption of Tea Party tactics to be most effective. Here's the beautiful logo created by one of the founders of the group. Active Empathy is the name that's above the following:

We're not a moderate group, which brings me to the other thing I wanted to write about, and that's the personal war I have going on in my tiny little mother mind.™ I generally use the tiny little mother mind™ expression to describe the relationship between me and the Powers That Be in Neurologyland, how over decades I've learned just how hegemony works. The analogy has some use here, too. What does it mean to be educated? What does it mean to be an elitist? When did the open derision of intellect become acceptable? What does it mean to be moderate? Why is moderation a virtue? Why is moving to the center a goal? Is that a construct or something truly admirable? Are there certain principles that should not be compromised? What convictions do I have that are immoveable? I don't have the answers. I have a tiny little mother mind™ and some gut instincts, though, that have served me well and that I have to constantly be vigilant to honoring. To help me with this, I've been reading Hannah Arendt's The Origins of Totalitarianism, and it's startling and fairly easy to draw parallels to what's going on today. I'm reminded of my instincts and of honoring them, how difficult it is to do so when I also have to deal with emotions, with a patriarchal culture and values that are more authoritarian than inclusive. There's a good discussion of Arendt's work here, including this choice passage:

“What convinces masses are not facts, and not even invented facts, but only the consistency of the system of which they are presumably part . . . Totalitarian propaganda thrives on this escape from reality into fiction . . . [and] can outrageously insult common sense only where common sense has lost its validity.”

It's exhausting, isn't it?

Let's move on.

I saw the extraordinary documentary about James Baldwin called I am not your Negro. Everyone should watch it and the documentary 13. They're both antidotes to the superficial bullshit that reigns in this country. It rained off and on all weekend here in southern California. Everything is green, so green. I've been reading Ann Patchett's novel Commonwealth and love it. I told a good friend that I haven't been able to get into a novel in a long time, that I remain half in and half out, that that was worrying me because reading novels has been really the only constant in my life (that's NOT hyperbole). I'm in Patchett's story -- totally in. The man I love brought me pink roses, and the boys I love showed me how to take pictures with my new iPhone so that the background is blurred out. How wonderful is that! Here's a picture of the roses using this clever technique and one of the cinnamon bread I baked. The boys I loved showed me the scratch and sniff technique on the phone, too. Just kidding. That IS hyperbole.

Reader, what did you do this weekend?

Friday, February 17, 2017

The Struggle

After rain

Trump's grand and vulgar self-absorption is inviting all of us to examine our own selfishness. His ignorance calls us to attend to our own blind spots. The fears that he stokes and the isolation he promotes goad us to be braver, more generous.
James S. Gordon, founder of The Center for Mind-Body Medicine 

The whipsaw of anger and sitting in stillness.

A long time ago Sophie began to seize and I began to resist.

A long time ago I placed the baby in the middle of the bed while she screamed and got into the shower, turned on the water and crouched there under it. The word drown covers both the sound and my life, in those moments.

A long time ago I also rocked my baby and recited a mantra as she screamed for hours and hours. I've written that sentence, juggling those words, over and over for the last two decades. Sometimes I write more than twenty years. A while back I wrote over ten years ago. 

While the baby screamed I recited the words of Thich Naht Hanh over and over, aloud.  Breathing in I calm myself, breathing out I smile.

When I feel most angry I sit with it feeling its flood. Lately, I go to water, swim back and forth, fluid and cutting.

Anger both cuts out the noise and is the noise. It is both distraction and diversion and the means to focus and sharpen.

Sophie and her seizures prepared me for resistance and for anger.

The peace that came was not something to work on, that I worked on but was, rather, imposed.

The story of the angel and Jacob, wrestling on a hill.

A little East of Jordan (145)

A little East of Jordan, 
Evangelists record, 
A Gymnast and an Angel 
Did wrestle long and hard – 

Till morning touching mountain – 
And Jacob, waxing strong, 
The Angel begged permission 
To Breakfast – to return! 

Not so, said cunning Jacob! 
"I will not let thee go 
Except thou bless me" – Stranger! 
The which acceded to – 

Light swung the silver fleeces 
"Peniel" Hills beyond, 
And the bewildered Gymnast 
Found he had worsted God!

Emily Dickinson

Gaugin, The Vision After the Sermon (Jacob wrestling with the Angel), 1888

Monday, February 13, 2017

Heartbreak Open

It's heartbreak that those of us who experience it rarely share, such is the pain. Our children with severe intellectual disabilities, while valued as part of their family and school communities (and often not even there) have few independent friendships and little to no opportunities for social interaction other than the times arranged with -- yes -- those people who are actually paid to be companions or to put on social programs and acitivities. There's a scene in the Caregifted documentary Undersung in which I ne of the caregivers, Ramona, says very quietly that she is resigned to always having to pay someone to interact with her autistic son. It's a moment in the film where I sort of stop and sit still, paralyzed yet intensely aware that I am really only made of bits and pieces, shattered.

Despite loving aides at school, a kick-ass teacher and group of students she has practically grown up with, Sophie has few friends outside of her family and the two women who have helped care for her over the years. Ok. She has none. I have largely given up on outside people, including friends and family, to take that kind of interest in her. Although bitterness occasionally rears up, I'm more inclined to understanding and accepting it, choosing to confide in my peers, other mothers and fathers who are long-time caregivers. I am pretty much resigned, like Ramona, to arrange and pay for Sophie to have companionship. She will be aging out of the school system this spring, and the nagging worry of what might come next is just that -- a nagging worry. I foresee a huge transition in my mind and soul, even if I do find a good day program for Sophie. It will be the next great twisted milestone in a long line of them, the chain of them, the tail of the dragon.


We live, I think,  in what I sense is the break of the heart, not out of choice but of necessity, and it's not the disability that we mourn, the differences of our children. They are complete and whole even in their brokenness. If disability is a construct, our heartbreak is for those who would persist in looking away, whether it's the culture or the persons within it -- you and you and me -- leaving our children isolated, looked on at best with kindness and at worst not at all.

During these tumultuous times, when it seems that the whole sane world is struggling to WOKE, I've found a new friend, a woman who is intent on her own young daughters being woke as well. I've known her for a long time but really only as an acquaintance, so when she asked me whether her daughters could possibly spend time with Sophie, I confess I rolled my eyes inwardly. I might have put bitterness aside, but I can still be cynical, and whether that's a defense mechanism or not, it's hard and well-earned. I did not expect anything to come of it. My friend's girls are eleven and fifteen years old, committed ballerinas and breathtakingly beautiful. They have clear eyes and when they first came over, they spoke openly to me, asking questions and observing Sophie in her room. They were sort of unbelieveably magnificent, if I can say that.

I'll say this, too: They have been spending time with Sophie, have come to our house on Sunday morning and spent time with her.

Yesterday, Sophie had a big seizure in the early hours before dawn. She had an amazing run of more than a month without any to speak of, so I guess it was time. Resignation. Acceptance. The girls had planned to come over, but I texted my new friend to tell her that it might not be a good time. This new friend is brash and funny and persistent, to say the least. She literally insisted that her daughter could sit with Sophie as she rested and give me a break. I took a breath and gave in. Sircey came over, walked into Sophie's room where she lay recovering from the seizure, went to the bookshelf and pulled down James and the Giant Peach. She sat down on the floor next to the bed and began reading to her. She read more than fourteen chapters in a quiet voice, adapted to Sophie sitting up by sitting next to her and continued to read.

 I only poked my head in every few minutes to check on them and eventually stepped into the shower where I cried a bit, my tears diluted by the water streaming down my face and over my breasts, under which my heart with its scars, that break where we live, became a channel for them, a pathway down, a pool, an ocean under my feet.


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