Where You Are

Sculpture Garden, Norton Simon Museum 

I've got a whole month of Sophie days ahead -- no school and no Communicamp this year. It's hard thinking up things to do with her, and there's some rigamarole involved given the stuff I have to schlep. I'm not complaining, but if I were a man I'd do some mansplaining. There are definitely days when I'd rather let her roam around her room, picking up toys to mouth, aimlessly, but those days leave me feeling not so much guilty, but rather inadequate. I know she needs attention and stimulation, but I don't feel like doing it. You don't need to assure me that I'm a good mother and couldn't possibly be with her constantly. You don't need to tell me that no one could possibly do that and do it for twenty years. I know these things. I just feel a bit querulous, and my sense of humor is elusive in the face of -- how do I say it -- the perpetuity of it all. I have this theory about our cellular/genetic makeup -- how as mothers we're made to withstand things like babies screaming for hours and pooping their pants for years, or needing to bathe and feed and entertain them, even when it's boring. Our wiring is beautiful in that we are able to do these things, sometimes very well and sometimes not so well, because we also know, on some deep cellular/genetic level that it isn't forever. Colicky babies eventually stop crying. Every baby eventually sleeps through the night. Toddlers get potty-trained, learn how to talk and eventually play by themselves. Ultimately, if all goes well, they leave you for their own lives.
The thing about caring for a severely disabled child is that the whole paradigm shifts -- we aren't so much wired to endure the necessary level of caregiving but have to figure out how to endure it for -- well -- ever. And no, it might not be forever, literally. Some of us fear that our children will die sooner rather than later. We also fear that they'll die later rather than sooner. Not a day goes by that I don't feel grateful for the time I do have with Sophie. I am skilled at holding paradox -- despair and delight -- cursed and blessed -- gravity and humor.

Equanimity.

At Hedgebrook I had the opportunity to share a bit of my writing with the other residents, and after reading a chapter about the early days of caring for Sophie -- the immense crisis, the hell of it all -- the writer asked for my feelings, for me in the events. Surely you felt something, she asserted, a writer needs to show those feelings, and I felt the tiniest bit defensive. I've been thinking a lot about that feedback and questioning over the last several weeks. I don't articulate myself during crisis, nor do I identify every feeling as it occurs. I am, rather, in it, doing it. When I write it I want that to be conveyed -- not so much the necessary dissociation that occurs but the attention to the present moment that leaves no room for analysis. Lorrie Moore wrote in her story "People Like That Are the Only People Here:"

How can it be described? How can any of it be described? The trip and the story of the trip are always two different things.

 The trip and the story of the trip are always two different things. I'm trying to tie these things together -- the love and the loathing -- the present and the perpetuity -- the trip and the story of the trip -- and convey what it means on a cellular level, when all paradigms have shifted.

I've lost my thread.

I took Sophie to the Norton Simon Museum this afternoon with a friend of mine. I have lived in Los Angeles for eighteen years, yet I'd never been, and it was just fantastic. The museum is very small, but the collection is pretty amazing, and the sculpture garden was gorgeous. My friend and I wandered around and caught up with one another, and Sophie was fairly content, so it turned out to be not just a lovely afternoon but one that assuaged my needling thoughts of inadequacy and caregiver fatigue.

The Mandala of Compassion

This is what I did yesterday morning, and it left me in a sort of daze -- relatively speaking, for me -- the rest of the day and into the night:

Four Tibetan monks were here in Los Angeles, set up in a pretty little room at the Armand Hammer Museum in Westwood, to create over a two-week period what they call the Mandala of Compassion. They create this beautiful piece of art with grains of sand. The sand is colored with natural dyes and each grain is painstakingly placed on a wooden board where the monks have drawn the shape of the mandala.

According to the wonderful brochure, the purpose of the creation of the mandala is to help the viewer generate boundless compassion for all beings. In the Tibetan tradition, mandalas serve as meditational tools and can be seen as reminders of our innate spiritual potential. Mandalas are also considered beneficial even in relationship to the environment in which they are built -- it is thought that the space becomes permeated by spiritual blessings and that these blessings have a stabilizing effect on outer and inner boundaries.

I felt that.

Before they work on the mandala, the monks foster their intention with puja, which is the act of worship, including prayer and meditation. Puja is intended to bring to the mind the qualities of the Buddha of Compassion, and for over an hour, I participated with the monks by sitting in silence on a mat in the room while they chanted, prayed and played the most wonderful instruments. I felt restless only once or twice during the hour and was, at other times, filled with a deep peace and calm that I have rarely felt even during my own meditation practice. The most memorable part of the hour was during the actual chanting when one of the monks with the deepest baritone made what seemed to me a sound like a swarm of bees, thrumming. It was as if my whole body was filled with this rolling, elemental sound, and it felt both incredibly grounding and ethereal. The monks' faces were at once calm and filled with light and humor. One had a twinkle in his eye.

Afterward, the monks got ready for their work on the mandala, and I stayed for a short time and watched them. The sand is dispersed onto the blueprint through a copper funnel instrument called a zangpur. 

The mandala that these monks have chosen to make represents Chenrezig, who is the embodiment of the compassion of all Buddhas combined. She is known by different names in different parts of Buddhist Asia, and the familiar one for me is Kuan-yin. Quan-Yin, how I've always seen it spelled and whose form hangs in my own house, is known, too, as the goddess of mercy.

I can't express how much this all means to me, particularly now. I am just so grateful to have experienced it.

This weekend, when the mandala is completed and the last grain of sand is placed, the entire sand painting will be wiped away and swept up as a display of impermanence. The lamas will bring the collected sand to the ocean with museum visitors and offer it as a blessing.

Mercy, impermanence, compassion -- the vast ocean, waves and tides and blue light and dark depths -- gratitude, peace, calm.

Mike Kelly and Henry

Can I just tell you that my son Henry is the easiest kid to hang around with in the universe? He's been bugging me for months to take him to the Mike Kelly exhibit downtown at MOCA, not because he's some modern art aficionado, but because his much-respected art teacher from school recommended it. I know nothing about Mike Kelly and agreed with the caveat that we'd stop for lunch. Henry ordered a burger and fries, and I had three Blue Point oysters and two pieces of toast with tomatoes and burrata. Then we walked over to MOCA and were basically assaulted by Mike Kelly.

The above photo was in a part of the massive exhibit where photography was allowed, and it was really one of the only pieces of art that I "understood" and -- let's be honest -- liked. Do you know Mike Kelly? Evidently he's extraordinary, and the sheer amount of art, coupled with so many mediums (painting, sculpture, video) was certainly awe-inspiring, but most of it was utterly obscure for the likes of me, disturbing and downright overwhelming. At one point, I read a description of his installation of resin replicas of Superman's city, admittedly pretty cool, but what stood out on that little wall plaque were the words Sylvia Plath, and that was because they were the only ones I understood. I don't even like Sylvia Plath, but, god, I was grateful for her familiarity in that moment. I stood in front of a giant video screen and watched a little boy sitting in a barber's chair get his mouth smeared with shaving cream while the barber said things like Do you want a pussy mouth? while a pink-lipsticked effeminate man looked on, smiling like a clown. I tried to be open-minded, read the accompanying description in the hope of getting it, pushed away my horror and breathed. Do you think it's true that great art is disturbing? I'm not sure about that, but what I do know is that I glanced at Henry, and we did some telepathy and walked away. I longed for Oliver to be around to say something cogent like this is creepy and I could do this! and I hate museums! and art is stupid! -- but he's still shooting rifles and toasting marshmallows at camp. You know those guards that stand silently in museum rooms? I felt drawn to them, actually -- wondered whether they were quietly going insane with this exhibit. I smiled like a kind and sympathetic grandmother at them.

We wandered through rooms where you could barely hear, much less think, because of recorded screaming and industrial screeching and whining, and between the cacophony and the giant penises and poster art of people screwing -- well -- I was ready to get the hell out of Dodge. I will say that the corridor of paintings of great philosophers with quotes about criminality and art was pretty spectacular, and I learned that Kelly made a stipulation that this installation must culminate with a painting by a local criminal and that there must also be two boxes for donations to victims' rights groups.

We made our way out into the blinding sunshine and walked back to our car, stopping at a Japanese tea shop where I bought a coffee milk tea and tried to right my head on my body so that I could drive home. I told Henry that I either had a bad oyster or Mike Kelly made me feel queasy, and when he asked whether he could drive home (did I tell you that he has his learners' permit?), I said that I couldn't take any more harrowing, mind-bending experience for the day.

Staycation, Day Two

Henry and Oliver are on spring break this week, and we have no plans. Sophie is back in school. We're sleeping in when we can and hanging out for the most part. Today, we took a trip downtown on the metro for a visit to Little Tokyo, or Japantown.

We got out of the train at beautiful Union Station and then walked a few blocks to a tiny restaurant that served typical Japanese ramen, teriyaki and tempura.

Then we wandered into and out of little stores, filled with Japanese stuff, both traditional and hip. I've never really "gotten" the modern Japanese culture -- anime, Hello Kitty, metrosexual fashions -- but I did like these glasses:

Dang. I should have bought them.

After browsing through many of these stores and arguing with Oliver over his desire to own a Japanese saw (they're so cool, Mom, and they cut wood so much better!), we made our way to the Japanese-American Museum. Oliver's disappointment was transformed by an interesting Los Angeles Dodgers baseball exhibit that demonstrated the integration of African American, Japanese and other minority players on the team. I feigned interest, relieved that they were largely silent and, for once, united in their mutual love of baseball.

We then walked upstairs and saw an incredible Japanese tattoo exhibit called Perseverance. 

I was bowled over by the beauty and artistry of the tattoos.

Remember when I said that I was going to get one when I turned 50 last August? Hmmmmmmm.

Day Five of Slogging Out the Gratitude

So, the jack hammer is still going, Sophie had a super ugly big seizure this morning that caused some tension among the members of our tribe, and my house looks so much like a Christmas store that I've decided to put on my Santa apron instead of clothes and surrender. Despite these problems, though -- and with the exception of the seizure, they are first world problems which is a problem unto itself -- I'm slogging out the gratitude alongside my friend Jeneva, and today I'm grateful to live in Los Angeles and down the street from the Los Angeles County Museum of Art (LACMA). I put Sophie in her wheelchair and walked there this afternoon, strolled around the magnificent Alexander Calder exhibit and then stood and gazed quietly at some of the most beautiful photography one could possibly imagine from every era in the history of photography. I'm grateful for art, much of which I don't understand or have little knowledge, but speaks to me just the same, invigorates my eye and calms my soul.

• I'm grateful for my strong and healthy constitution.

• I'm grateful for the card that Ms. Moon sent me of the Airstream trailer on the beach that now graces my blog and that is testament to our friendship.
• I'm grateful for the opportunity to go to the movies on a Saturday afternoon, especially when it's a perfect movie about love, longing, regret and is directed by and stars Ralph Fiennes.
• I'm grateful for my perfect score of loving bloggers in person as well as on the page and for getting to personally meet one of my favorites today, Brittany Tuttle.
• I'm grateful to live in Los Angeles and down the street from LACMA, and I'm grateful for art that invigorates my eye and calms my soul.

In lieu of lighting a bonfire

in the middle of the freshly mowed and Febrezed rug in The Brothers' room and thereby making my point about the effects of constant fighting, bickering, punching and disrespect between them, I put Sophie in her wheelchair and walked to the Los Angeles County Museum of Art (LACMA). It was a glorious and hot walk under jacaranda trees, and when we got there I got tickets to the Stanley Kubrick exhibit and was promptly blown away from all thought of boys and bickering and household tasks. Sophie and I wandered in and out of rooms devoted to each of Kubrick's films, and whether you're a fan or not, the experience of seeing the art of making a film was breath-taking and terribly interesting.

I'm a sucker for looking at this stuff -- the writing of the film-maker -- the notes and scratchings, the whole process -- even if it is behind glass and sort of goofy, displayed in a museum.

It's weird to look at the iconic typewriter that Jack Nicholson's character typed on (especially after my frustrating morning with The Brothers and the bonfire that wasn't):

All work and no play makes me a dull --

I skirted the Clockwork Orange room:

but was mesmerized by a guy in bright orange pants and a blue hat outside of it:

I have a mixed relationship with Kubrick films --

I'm enamored with some: Lolita, Barry Lyndon, Dr. Strangelove, The Shining

and really hate some others: A Clockwork Orange, Full Metal Jacket, Eyes Wide Shut. I can tell you, though, when and where I was when I saw each one.

By the time I walked home, I had cooled off, and instead of lighting a bonfire, I dumped clean clothes from the dryer in the middle of their room and walked out, eyes wide shut.