The belly of our days

A cresting wave, Antigua, a million years ago

Good Lord, ya'll -- I'm hard up for words here at a moon, worn as if it had been a shell. The pink iceberg roses in the backyard are a riot and the oatmeal is crusty in a pot on the stove, interminable boys' laundry is spinning in the washer, and the dog's nails are clipping the floor to distraction, but I'm not really thinking about a damn thing. When I meditated this morning, I read the April 30th entry in Mark Nepo's The Book of Awakening, and I thought you might find it interesting, if not helpful as you go about your day. There's some cliche in there, but like they say, there's a reason for that.

There's a quote from Basho, first:

Whether drifting through life on a boat or climbing toward old age leading a horse, each day is a journey and the journey itself is home.

And then there's a brief story about the writer's immigrant grandmother, and then there's this:

I'm asking you to imagine the life of your spirit on earth as such an immigration, as one constant arrival in a new land. Given this, we must accept that no matter the shore before us, the swell and toss of the sea never ends. When brought to the crest of a swell, we can see as far as eternity and the soul has its perspective, but when in the belly of  those waves, we are, each of us, for the moment, lost. The life of the soul on Earth has us bobbing on a raft of flesh in and out of view of eternity, and the work of the inner pilgrim is to keep eternity in our heart and mind's eye when dropped in the belly of our days.

Then Nepo advises this:

Sit quietly and imagine yourself bobbing safely on the ocean of experience we never stop crossing.

Breathe deeply and imagine each day is a wave.

Enter your own rhythms and feel what kind of wave today is.

If today is cresting, look about you and take in all that you can see of life.

If today is a belly of a day, acknowledge the hardships you are facing.

Breathe slowly and remember that another crest is coming. Bring to mind the last rising, remembering what that enabled you to see. 

"The world is too grand to reshape with babble"

I had nothing but babble today, so instead, a poem that I read in Tricycle magazine.


Sunlight


After days of darkness I didn't understand
a second of yellow sunlight
here and gone through a hold in clouds
as quickly as a flashbulb, an immense
memory of a moment of grace withdrawn.
It is said that we are here but seconds in cosmic
time, twelve and a half billion years,
but who is saying this and why?
In the Salt Lake City airport eight out of ten
were fiddling relentlessly with cell phones.
The world is too grand to reshape with babble.
Outside the hot sun beat down on clumsy metal
birds and an actual ten million year old
crow flew by squawking in bemusement.
We're doubtless as old as our mothers, thousands
of generations waiting for the sunlight.


Jim Harrison

Cake Boys

I drove about 5 miles an hour with the boys in the back seat, keeping a red velvet cake perched on top of a tier. Cupcakes were in the back -- two dozen red velvet and one dozen vanilla with lavender icing. Henry warned me that I could get a ticket from the police if I drove too slowly. I told him to just pay attention to what he was doing and to keep those big fingers out of the icing. At one point, Oliver said This is just like Cake Boss! The cake was safely delivered -- unlike that time which led to this disaster.

I needed a beer afterward, which I drank with some pizza and salad -- a lovely Saturday night.

Los Angeles Riots

Those are some policemen that were eating dinner in a taco joint last night where I sat reading and eating shrimp tacos while Henry was at baseball practice. There was a white guy who looked like Eddie Haskell from Leave it to Beaver, a Korean guy, an Hispanic guy and someone whose ethnic identity was difficult to ascertain. I pretended to be reading something on my phone because I'm sort of afraid of cops in Los Angeles, but I took their picture. Yesterday was the twentieth anniversary of the Los Angeles riots, a terrifically awful day to remember but maybe it's a good thing. Our radio waves were filled with talk about it, and I heard black poets and Korean businessmen talk about the day; I heard Rodney King -- why can't we all get along -- himself reminisce about the routine beating that turned the city into a bonfire. I wasn't living in Los Angeles in 1992, but I have friends who stood on their rooftops in the Hollywood Hills with hoses, anticipating the sparks that might burn it all down. I'm not sure what has changed in the two decades since those horrible four days -- my own kids go to school in the middle of Koreatown where most of the rioting occurred, and as white boys, are nearly minorities now among their Korean, Asian and Hispanic classmates. They don't bat an eye, as the saying goes, about that. I yearn, sometimes, for a simpler life -- somewhere outside of this vast and busy, expensive city -- and then I feel grateful to be in the middle of it, making history in our own small way.

My Favorite Ridiculous Self-portrait
Palm Springs, 2011

Any idiot can face a crisis; it's day-to-day living

that wears you out.

Anton Chekov

Onanistic

Reader, I'm going to let you look that word up in the dictionary. I'm not going to tell you why I know it and why it sprang to my English major mind when I walked down the street today and noticed that this -- uh -- flower had appeared seemingly overnight, released in some sort of ecstasy from a spiny plant below.

Holy moley.

Poem in Your Pocket

Today is Poem in Your Pocket day, and I'll hold a copy of Langston Hughes Catch this year. If someone asks, I'll pull it out and read it aloud; otherwise, it'll sit there and sing itself.

CATCH

Big Boy came
Carrying a mermaid
On his shoulders
And the mermaid
Had her tail
Curved 
Beneath his arm


Being a fisher boy,
He'd found a fish
To carry --
Half fish,
Half girl
To marry.


Langston Hughes

Real vs. Bourgeois, Round One

Project Cyclone: Giant computers solve industry's toughest problems and open new, lucrative field for women interested in mathematics
Popular Mechanics, 1955

I'm going to introduce a new series here at a moon, worn as if it had been a shell, where I'll set my mind to parsing out some of the biggest problems in the world. I'm going to do a contrast/compare kind of thing and present a REAL PROBLEM and a BOURGEOIS PROBLEM.


ROUND ONE:


Bourgeois Problem:

This morning, I decided to take a shower and wash my hair for the first time since I got a few highlights put into it last week. I remembered that when your hair has been colored or highlighted, it is, in effect, fragile and perhaps even damaged, so I had bought a new bottle of shampoo to address this. The label specifically cited its efficacy in cleaning and deep-conditioning dry, damaged hair. I stood in the bathroom reading the label and wondered when, exactly, does one's hair turn from being sleek, shiny and healthy to rough, dry and damaged? Is this something I should have already addressed? Why did this happen? I hate that it happened.

Real Problem:

I got an email alert today from the Epilepsy Therapy Project, a wonderful site chock-full of everything you can imagine concerning epilepsy. Today's alert was titled Lamotrigine and Aseptic Meningitis and described the recent findings by the FDA of a strong correlation between the use of Lamictal (brand name of lamotrigine) and aseptic meningitis. Now, Sophie is no longer on Lamictal, although she took that drug for nearly seven years (aged three or so until aged ten!) and didn't develop aseptic meningitis that I know of. But Sophie is on some very new antiepileptic drugs that, I've explained here over and over, I never get used to administering to her. I describe it variously as like giving your child poison, year after year after year with no real expectation that it's giving anything but a modicum of seizure control. The Problem lies in this sentence, at the end of the article: 

This case highlights the importance that we need to continue systemic monitoring of antiepileptic drugs even after they are approved in order to fully understand the adverse effects related to any given medication.

You can read more about the Real Problem here. Is this something I should have already addressed? Why did this happen? I hate that it happened.

Parenting via Frank O'Hara

When I visited City Lights bookstore last weekend in San Francisco, I wandered through the poetry section in near rapture, up the stairs in the ether and gathered a few books to flip through, those I knew and those I had never heard of, thinking how poetry endures, the toil of it, despite. Frank O'Hara's Lunch Poems is a small book to revel in, and this poem one of my favorites:

Ave Maria


Mothers of America


                               let your kids go to the movies!


get them out of the house so they won't know what you're up to


it's true that fresh air is good for the boy


                                                                but what about the soul


that grows in darkness, embossed by silvery images


and when you grow old as grow old you must
                                                                         they won't hate you


they won't criticize you they won't know


                                      they'll be in some glamorous country


they first saw on a Saturday afternoon or playing hookey


they may even be grateful to you


                                                      for their first sexual experience


which only cost you a quarter


                                            and didn't upset the peaceful home


they will know where candy bars come from
                 
                                                     and gratuitous bags of popcorn


as gratuitous as leaving the movie before it's over


with a pleasant stranger whose apartment is in the 
                                                                       Heaven on Earth Bldg


near the Williamsburg Bridge
                                oh mothers you will have made the little tykes


so happy because if nobody does pick them up in the movies


they won't know the difference
                                       and if somebody does it'll be sheer gravy


and they'll have been truly entertained either way


instead of hanging around the yard


                                                         or up in their room
                                                                                        hating you


prematurely since you won't have done anything horribly
                                                                                         mean yet


except keeping them from the darker joys
                                                               it's unforgivable the latter


so don't blame me if you won't take this advice


                                                                 and the family breaks up


and your children grow old and blind in front of a TV set


                                                                                             seeing


movies you wouldn't let them see when they were young


Frank O'Hara, 1960

Losing community

Bridge Studio: Jason Schmidt
via NY Times

Another good neighbor friend called me today to break the news that he's moving his family to Irvine. Their only child, a boy exactly Oliver's age, is one of several boys in our neighborhood whose families are either moving up and out into much bigger houses and fancier 'hoods or the opposite: simpler lives in smaller areas. This boy and the other boy live across the street and around the corner, and for the ten years we've lived in this house, our neighborhood has resembled Maybery of Andy Griffith more than a couple of residential streets in an enormous city.

I cried in the car in the parking lot of Trader Joe's when he told me. I cried because it means my boys won't have easy access to neighbors' houses -- the banging of doors as they come in and out -- the tribes on the trampolines and the wars in the front yards. Sure, new people will move in, but relationships take years, and most of these homes are small, starter ones -- I'd anticipate young couples with babies and toddlers moving in, not tweens and teen-agers. The trouble with living in this city -- for us -- is that we are not particularly upwardly mobile and most of the people around us are. People don't blink an eye at spending millions of dollars on homes and hundreds of thousands on private schools. They have the means to sequester themselves behind boxwood walls with pools and media rooms, and settle on sending their children to schools that are in distant neighborhoods. I'd venture to say that they don't live in neighborhoods but in beautiful houses on beautiful streets.

If they don't have the means, they have the sense to move out and beyond to where their lives could be simpler, easier on the foot, the planet and the pocket. I wish they wouldn't, but I understand their choices.

I'm wondering about all of this, feeling sad and not a little trapped. Even if I could afford it, I don't want a bigger house or a fancier neighborhood. I love my house and I love my neighborhood. I don't want my children to go to exclusive private schools in far-away neighborhoods and be surrounded by those who only know huge privilege.

 But I don't want to be left behind, either.

(I loved the photo above from this wonderful article.)

Why I never make the 9:00 am yoga class

Sophie falls asleep while I'm getting her ready for school and putting on her shoes.

Noah, Henry, Black and White and Canadian All Over

Henry and Noah

This is the way my brain works and, perhaps, my soul, if a soul were to work.

There's a whole lot of hoopla in the disability world about what some call mercy killing and others call euthanasia, still others call murder and still others genocide, with the invocation of the Nazi's Action T-4. Most of the hoopla stems from recent stories in the news of mothers who have either killed their children with severe disabilities and themselves or advocate for such killing when they deem the circumstances desperate enough. I'm not going to give you my opinion on all of this outside of my firm belief that while I'm in no position to judge what leads people to such tragic acts, I can certainly hold understanding in my mind and soul for how it happens. And I think I'm sticking to that despite despite, I imagine, people's belief that I'm immoral for doing so.

I read a Canadian blogger today who took a loud stance on this issue and that led me to a few other bloggers (curiously, also Canadian) and lots of condemnation and drawing of parallel lines to being disabled oneself and there was some talk of racism and disability advocacy and very, very righteous anger. I'm no stranger to the righteous anger stance (wince), but this particular topic gives me so much pause that I am, effectively, on pause.

[                                                                             ]

So.

I drove Henry and Noah home from school today and thought I'd ask them about it and see what they thought.

Me: So, guys. I've been reading on the internet about some pretty disturbing stuff and I'd like to hear what you think about it. What do you think of a person who has taken care of her severely disabled child for over thirty years and decides to kill that child and herself because she can't take it anymore? The adult child has very serious issues, including physical suffering and the mother has been doing this for many, many years without the proper support. She is also afraid that when she is unable to do so, her child will not be taken care of properly and might even be put in an institution. We also don't know what her mental state is, whether she's depressed or isolated -- what her upbringing might be -- you know.

Silence.

Noah, aged 13, only child: That's so awful. I feel bad for her and the disabled person. I wouldn't do that; I wouldn't kill the child, I couldn't kill him, but it's just so awful.

Henry, aged 13, sibling to a 17 year old with severe disabilities: That's so awful. I feel so bad for that mother. I mean, killing is wrong, but I sort of get it. I don't think I could do it, but I sort of get it. Mom, is this a true story?

Reader, I don't know about you, but these thirteen year old responses spoke more honestly and clearly to me than all the words of the bright, impassioned minds of the internet, those in the trenches and out.

And that's perhaps all I'm going to say about that.

Blueberries stain the floor on Mondays, but it's a new world

William Blake

So far, it's about 11:20 in the am and the refrigerator/freezer has already broken and been fixed by a very nice man; I've mopped the floor where the bag of blueberries fell out as I was emptying the freezer and stained it, two loads of laundry are in and out, Nina Simone is singing her song (thank you twisted knickers), and I've filled out some camp forms for Oliver. Summer is coming, I think, which is a good thing because I'm really tired of pumping these boys of mine up each morning to do their best. Nina Simone says it's a new dawn, it's a new day, it's a new life for me, and I'm feeling good. I'm not sure I feel as good as Nina Simone because I need to do a whole lot of stuff, still, but dragonfly out in the sun you know what I know, but this old world is a new world --

I'm home again in Los Angeles after a perfect weekend in San Francisco and just outside of it. I spent most of the time hanging out at my dear friend Jody's house. I wore my pajamas until noon, and she lay on my bed and we talked and talked. Her husband made delicious coffee. We went to a ridiculously fancy restaurant on Friday night in San Francisco and ate tiny portions of too-rich and fussy food. We went to a beautiful benefit for a school for kids with severe disabilities -- the school where our darling Lueza attended -- and I sat next to Jody and cried when the slide show ended on her soulful face. Despite the sorrow of Lueza's absence, and it was palpable, the love that surrounded that child fills her home still, and I can honestly say that I have not felt so relaxed and happy and at ease in years. Thank you, Jody and Jacek, for your warmth and hospitality, for your beautiful home and for being such steadfast friends.

We woke up this morning and visited Jody's good friend, ate the most amazing homemade biscuits and orange marmalade (honestly, I could have eaten a jar of it) and sat out on a high porch in the hot sunshine, laughing and talking. After that, Jody drove me into the city to my blogger friend Sally's house where the famous Maggie lives, and after listening to Maggie's jokes and chatting a bit in their wonderfully quaint San Francisco home, Sally drove me to City Lights, where I raptured in the poetry room upstairs and purchased a small stack of black and white postcards of poets and a copy of Jack Gilbert's The Dance Most of All.

Sally and I walked to North Beach and ate eggplant parmigiana sandwiches at a corner bar and continued a conversation that lasted all the way through lunch and to the airport several hours later when she dropped me off and we decided that meeting one another was exactly what we had expected and that we'd known each other forever. 


Reader, I've a perfect score on melding my real life and my blogging life as every single blogger I've met personally has been an unequivocal pleasure. I'm awed by this and very, very grateful.

Something noteworthy

I am staying just outside of San Francisco with one of my dearest friends. I have felt so sleepy today that I wondered what was wrong with me. Lassitude.
It's just occurred to me that I've forgotten what it feels like to be relaxed.
I'm relaxed.

Gentle people, with flowers in their hair

Whenever I hear this song, I feel ridiculously teary, and when I watch this video the hair rises up on my arms despite the goofiness of it all and now I'm here -- in San Francisco. I imagine I should have been born ten years earlier and might have danced in the streets with flowers in my hair.

No water, minimal sun and no attention,

yet this old orchid bloomed.

I find that mysterious and hopeful.

Meditations on the Disabled Body

"Physically and psychologically disabled people still aren’t very well accepted in society,” says photographer Denis Darzacq. “And this is a situation that artists have to take care of."

You can read more about this exhibition HERE.


My blogger friend Chrissy of Silver Fin of Hope sent me the link to this article, and when I scrolled through the photographs I was both drawn in by their intent and beauty and then repelled by an intimation of exploitation. I still haven't parsed out that intimation -- was it because I wondered if the souls that were photographed were truly aware of themselves or were, rather, revealed by the photographer? 


What do you think?

I

Nellie washed my hair, gently, in the salon sink this afternoon. She ran rough fingers over my temples and backwards toward the crown. She put a plump arm under my neck and lifted it up to get the hair out from under, and I imagined her thinking This head is so heavy, this girl's head so heavy, what's in this girl's head, as the water rinsed it all away.

Thank you all for your kind comments on my posts, lately. I love you madly.

You might not get this, unless you do

This morning, I pulled the strap of my sandal through the buckle, tight, and felt the muscle memory of a day spent walking in D.C., a blister forming on the bottom of my heel, the endless mall and museums, looking up and around and nodding, the rubbing a nagging, forgotten when I pulled it off that night and remembered a week later when I pushed the white bubble, the wrinkled skin a fingerprint over contained water. This morning, I pulled the strap of my sandal through the buckle, tight, and felt the muscle memory of a day spent walking, out of a hospital on York Avenue in September, the air cold, the scarves wrapped tight around necks and heads, eyes squinting with wind tears and the gray sky, the brisk life around me oblivious to what lay in the hospital behind me, my baby, my baby, pseudo-tumor cerebri they said, shaking their heads at the rarity. A complication from weaning steroids. It will resolve, they said, as they stuck their needles into her bowed spine, screaming, pulling the fluid out, relieving the pressure that I'd found, myself, a fingerprint over contained water on the top of her head, the fontanel bulge.

Last Call

You might have seen this video a while back:




For the last two years I've said here and elsewhere that I'm going to make a video of still photos of YOU, parents of children with special healthcare needs and your wise words to yourself, THE DAY BEFORE YOU KNEW YOUR CHILD'S DIAGNOSIS. These words can be simple, complex, dark, light, positive, negative, funny, serious or everything all at once. I'm going to set the photos to music and hope it'll be helpful to new parents as well as inspiring. I imagine it'll be a healing testament for all of us.

Well, I've got a bunch of photos that make my heart sing and move me to tears, but I need more. Here's what you can do:

1. Write down on a piece of white paper or poster-board advice that you would give to yourself, that long ago self, when your child was diagnosed.
2. Have someone take a picture of you holding the poster
3. Email me the picture at elsophie AT gmail DOT com
4. If you want to send more than one, feel free. I'll use them all.
5. Spread the word to your friends. MEN, please participate!
6. I'm setting a goal of finishing this by May 15th, so please help me and send yours in (if you haven't already!) as soon as possible.

An Unprecedented Walk

I took one today, on the beach in Santa Monica. By myself. Unprecedented, as I can't remember the last time I did that by myself. I was reminded, again, why I wouldn't live anywhere else. I snapped some photos from my cell phone, but I did it blindly, squinting into the sun.

The man in the photo below was about a hundred years old and very, very tan. He was wearing a sort of exercise loincloth and was very, very fit.

 I wish I were a surfer. I know I've said that before. Next best is looking at surfers shower and walk off the beach with their boards. I took this over my shoulder, because I was embarrassed to turn around and do it.

Here's a photo for my male readers (Single Dad? Ken? -- don't say I don't think about you) -- and perhaps some of my female ones. Girls in tiny bikinis play volleyball in the middle of a Tuesday morning. I'd love to be able to wear a tiny bikini, but I have no desire to play volleyball.

I thought about a lot of things as I walked from Ocean Park north to the Pier -- how I'm going to arrange everyone's schedule so that I can go out of town this weekend, how I can find another good job to do from home, how I'm going to make exercise a priority so that I don't end up like so many old people do, failing early from lack of activity. I felt the edges of resentment, the clip of it. I took some deep breaths, too, and stared out at the sparkling water, a yellow parachute with a tiny man strapped to it, suspended over the blue. The light was so golden and the sky so wide that I imagined a cartoon of a tiny stick figured woman walking along the boardwalk when a giant mushroom cloud explosion ignites in the background and she throws her arms up and into the sky. The caption reads They'll all be all right.

A Study in Pink

Sophie looked exceptionally pretty last night in her pink tee-shirt and fabulous new headband. Henry and I tried for minutes to get a really good picture, one where she looked right at the camera. A few times she gave us her soulful gaze but not before the shutter opened and closed. She would have none of it.

After looking at the series, though, I think it's fine the way it is. No frills, nothing fancy or technically exemplary -- just pretty and pink.

Now I Will Count to Twelve

Oliver, in sunlight, October 2010

KEEPING QUIET

Now we will count to twelve

and we will all keep still.

This one time upon the earth,

let's not speak any language,

let's stop for one second,

and not move our arms so much.

It would be a delicious moment,

without hurry, without locomotives,

all of us would be together

in a sudden uneasiness.

The fishermen in the cold sea

would do no harm to the whales

and the peasant gathering salt

would look at his torn hands.

Those who prepare green wars,

wars of gas, wars of fire,

victories without survivors,

would put on clean clothing

and would walk alongside their brothers

in the shade, without doing a thing.

What I want shouldn't be confused

with final inactivity:

life alone is what matters,

I want nothing to do with death.

If we weren't unanimous

about keeping our lives so much in motion,

if we could do nothing for once,

perhaps a great silence would

interrupt this sadness,

this never understanding ourselves

and threatening ourselves with death,

perhaps the earth is teaching us

when everything seems to be dead

and then everything is alive.

Now I will count to twelve

and you keep quiet and I'll go.

Pablo Neruda

translated by Stephen Mitchell

Tiger Mom, Mormon Mom, Indian Chief,

French Mom, 

Working Mom, 

Georgia O'Keefe**

Dark Flower - Georgia O'Keefe

I'm bored and annoyed, again. And I've got a few more hates.

I'm loathe to even post about it here, knowing that I'm just contributing more muck to the overall muckiness of it, but a few people have asked, so I'll say a few words and then I'll desist.

I'm bored and annoyed by the latest mommy war -- you know, the one about Hillary Rosen taking a swipe at Ann Romney by saying she's never worked a day in her life and then Romney snapping back that she raised five children and that's work enough or something to that effect. And now all the blowhards have jumped in and everyone is freaking out on both sides, people are outraged and insulted, the Catholic Church is throwing a conniption that Rosen is a lesbian mother (horrors!) and therefore in no position to speak for mothers, and poor Ann Romney who has triumphed over breast cancer and struggles with multiple sclerosis, not to mention a complete Ken-doll of a husband is caught in her very first political crossfire. No one's even paying attention to the apparent fact that Secret Service agents have been frolicking with prostitutes in Columbia which has, apparently, affected the serious economic talks The President is supposed to be having, and once again the news that consumes Americans is -- well -- just plain dumb.

I've had short and terse tirades about most of the other mommy wars -- the Tiger Mother thing and then the French Mother thing, and I've always found the whole Working Mother versus Non-working Mother thing an enormous yawn. I get even more bored when the whiners step in and say something to the effect of why can't we all just get along? and expect that just because we share the same sex chromosome we're somehow irrevocably bonded as women and shouldn't argue but support one another, recognize what we have in common, etc. etc. ad nauseum. Don't get me wrong, Reader. I'm grateful to the legion of women who have paved the way to my equality, to my ability to speak my mind, vote, choose whether or not I will bear children and have a shot at doing a job that used to be denied to my sex. I guess the main reason why it all bores me to tears is because I'm a mother in an extra-special sub-category of mothers -- the extreme mothers -- and because I'm also a mother to some typical kids, I can justifiably say that the problems of the aforementioned (the Tigers, the French, the working, the non-working, the lesbians, the Mormons) are ridiculous in comparison. And for all you psycho-babblers out there, I'm perfectly aware that I could perhaps be projecting, except that I'm not.

I hate the word mommy except when it's used by very young children, and I hate even more the words mommy war.


I think it's all manufactured outrage, and I wish everyone would just shut up and move on (including myself).

**Just a little ditty that I sang to myself while I tapped out this post. O'Keefe was the only word I could think of to rhyme with chief, and then I remembered that she never had any children but painted a lot of vagina flowers, so it all seemed to fit. Humor me.