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.

Wink, #2

We shelter in ourselves an angel
whom we constantly shock.

Jean Cocteau

Those who restrain desire do so
because theirs is weak enough
to be restrained.

William Blake




At the doughnut shop, I waited in line to buy a sesame bagel, toasted, with cream cheese, bacon and tomato.

A woman in an arm brace, the kind used for carpal tunnel syndrome, sat at a small table with an autistic man. He ate a powdered donut with jelly oozing out, and she played with three figs on a napkin.

The young man in front of me had a tattoo on his arm that read I Do The Wrong Things For The Right Reasons.

I might begin a How We Do It post with these lines that I heard Lorrie Moore say that night I went to hear her read:

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.

Lorrie Moore, again

Lorrie Moore has a new collection of short stories out called Bark, and I headed down to the Los Angeles Central Library to hear her read tonight. You might remember the last time I went to hear her, when her novel came out ten years after I had discovered her in the New Yorker and how I had a wonderful encounter with her when I asked her a simple question after she read and then conversed with Michael Silverblatt -- but just now I searched and searched and couldn't find the post, so now I'm thinking that I never wrote about it. Oh. I don't feel like doing so right now-- just take my word that we had an encounter. That she spoke to me, directly, and blew me away. I did write a post last August called Group Therapy that does a reasonable job explaining just how much this writer means to me, so you can read that if you'd like.

So, it's been fifteen years since Moore published a collection of short stories, and I've just begun delving in. I'm a reader who keeps an anticipated book sitting by my bedside for weeks as a sort of tantalizing confection that I need to put off before devouring.  Bark is like that, so I read one story at a time and then put it down. It's a ritual.Tonight she read one of the new short stories in her beautiful, melodious voice and then conversed a bit with the playwright Brighde Mullins. It was an amazing short story, filled with her mordant wit and keen observation and then the tenderest of endings. God, I love a good short story. The conversation between the two writers was a bit slow, but I didn't care. Like David Sedaris, Lorrie Moore is someone who I honestly believe would be my friend if she only knew me.

Group Therapy

group therapy on The Bob Newhart Show

Who in the special needs world doesn't hate group therapy at a certain part of the proverbial "journey?" Is there anything worse than listening to people from different tribes drone on and on about their experiences coping with whatever messed up situation has befallen them? Is it just me that would rather hash it out, ad nauseum, only to those in my tribe -- especially when things really fall apart? You know: misery loves company, et al. I'll always remember the zing of recognition I felt when I read People Like That are the Only People Here: Canonical Babbling in Peed-Onk, the great short story by Lorrie Moore that I carried, crumpled in my purse, for many years as I trudged around New York City with Baby Sophie. 

A beginning, an end: there seems to be neither. The whole thing is like a cloud that just lands and everywhere inside it is full of rain.

The first person I met back in those days was my friend Jody whose daughter Lueza had suffered a traumatic brain injury at birth. We participated for a bit in a local support group for mothers of children with severe "issues," but it was our shared sense of dark humor that bound us together. During the dark days pre-internet, it was Jody who told me about a newsletter called "Mothers From Hell" -- a sort of antidote to "Welcome to Holland." She was (and is) the sort of friend who Moore so perfectly described in her short story in one of my favorite passages:

She loves her friends, especially loves them for coming,

since there are times they all fight and don't speak for weeks. Is

this friendship? For now and here, it must do and is, and is, she

swears it is. For one, they never offer impromptu spiritual lectures

about death, how it is part of life, its natural ebb and flow,

how we all must accept that, or other such utterances that make

her want to scratch out some eyes. Like true friends, they take

no hardy or elegant stance loosely choreographed from some

broad perspective. They get right in there and mutter "Jesus

Christ!" and shake their heads. Plus, they are the only people

who not only will laugh at her stupid jokes but offer up stupid

ones of their own. What do you get when you cross Tiny Tim with a

pit bull? A child's illness is a strain on the mind. They know

how to laugh in a fluty, desperate way-unlike the people who

are more her husband's friends and who seem just to deepen

their sorrowful gazes, nodding their heads with Sympathy.

How exiling and estranging are everybody's Sympathetic

Expressions! When anyone laughs, she thinks, Okay! Hooray: a

buddy. In disaster as in show business.

So, I'm back for less than twelve hours, and Sophie is having one of her days. She's already had five giant seizures, and I've had to pull out the Diastat and administer it. She's going to miss her first day of Communicamp, and I'm going to spend the better part of the day probably worrying that this is it, the beginning of the end. That's what I do on days like this, that and laundry.

Pulling through is what people do around here. There is a

kind of bravery in.their lives that isn't bravery at all. It is automatic,

unflinching, a mix of man and machine, consuming and

unquestionable obligation meeting illness move for move in a

giant even-steven game of chess--an unending round of something

that looks like shadowboxing, though between love and

death, which is the shadow? "Everyone admires us for our

courage," says one man. "They have no idea what they're talking

about."

I'm not in a support group, anymore, at least not like the olden days, but I do have you. And you and you. I'm grateful for that.

Take Notes. In the end, you suffer alone. But at the beginning

you suffer with a whole lot of others.

***All excerpts are from Lorrie Moore's short story. You can read the whole thing HERE.

Books

I'm finishing up John Updike's self-professed "favorite book I've written" The Centaur. It's weird, weird, weird and very wonderful. I bought a second edition for $22.00 at a fabulous bookstore in Venice (that's Beach, not Italy), so it has that crinkly cover and smells good. I've come to John Updike and fallen in love late in life, I think, for someone who considers herself pretty damn well-read. The novels of Updike that I've read are so of their time, of the social mores of the forties through the seventies, and the awful banality of work and marriage, the onset of corporate culture and concomitant loss of identity. Some would say they're misogynistic in tone and the women aren't completely fleshed out, but I'm seduced by the language, the old-fashioned style of it, the craft and industry that appears effortless. There's a hardness to the male intellect in these books that I'm drawn to right now in my life -- but...

when I'm finished I'm dashing out to Chevalier's (see my sidebar for the link) to pick up a copy of Lorrie Moore's new novel, the first in eleven years! I came to Lorrie Moore when I lived in New York City and read her short story "People Like That Are the Only People Here: Canonical Babbling in Peed Onk" in The New Yorker. Sophie had already been diagnosed when I read it, a story of a small boy who has cancer and the wry, devastated voice of his mother telling it, and I was so taken by it that I ripped it out of the magazine and carried it around with me for years. It became a touchstone of sorts, something that I referred to over and over as I navigated our own treacherous journey. It sits, now, in a folder in my file cabinet, dog-eared and thin, the file marked "Important Articles." The short story went on to win an O.Henry prize, I believe, and then appeared in Moore's last published book Birds of America. The new novel is something I can happily (albeit nerdily) say that I've anticipated for a long time!

All this....just because. It's not ALL FIRES, ALL HELLFIRE and ALL GO TO HELL around here ALL THE TIME!