What's Elusive

"The Unicorn"
Los Angeles Metro Bus

Here's the good thing. My old friend Bill Martin has this new show out -- a comedy on Thursday nights called "The Unicorn." I went to UNC with Bill, and he is still the sweet, incredibly funny man I knew more than thirty years ago. Ya'll should watch his show because it's also sweet and very, very funny and we all need funny, right?

Here's the bad thing. I need a lot of funny these days. I am not going to mince words. There's a lot of shit going down in these parts -- most of it unbloggable. I guess I am going to mince words. There's a tremendous amount of hate and rage roiling around me personally. I need all your positive juju and miracle-making, please. The other night I got into my car at 10:30 at night and drove all the way to Venice Beach in my robe and nightgown. I screamed in the car and then listened to Van Morrison sing "And It Stoned Me." I listened to Bob Marley sing "No Woman No Cry." Sophie's fine. The Brothers are good. I am not fine or good. I am digging deep to find my way back to the calm and peace that I know is somewhere within, still.

I love this poem:

Before Winter by Kwame Davis

Birds and Bees

 Yesterday I went to a seminar titled "Empty Nest Syndrome" and learned approximately nothing, but it felt good to sit in a big room with a bunch of goofy parents steeling ourselves for the big good-bye. I don't need anyone telling me that it's all good and right and the way things are supposed to go. I know all that. I haven't fully processed or articulated what it's like to really never have an "empty nest" in the narrowest definition of the term, given my life as a primary caregiver to my beloved Sophie. Life goes on in a sort of eternal present for me and Sophie, even as my sons move forward, and I don't mean this in a bad or heavy kind of way. I will try at some point to write about it, to parse out the peculiarity of maintaining a nest even as my own impulse is to fly away to a new part of life. As they say. I texted a fellow caregiver during the seminar that I was going to drop a bomb on the person leading it by asking whether taking up a new hobby or planning a trip would help the "Never an Empty Nest Syndrome," and my friend texted back, Do it, and I smiled and looked up and let my mind drift to all the years, all the years. I am so damn proud of Oliver, of all he's accomplished and the young man he's become. I'm sad in an existential way that my job raising him is largely over even as I know in my bones that mothering is so deeply embedded, I might as well be one of those orca matriarchs whose sons never leave her. I'm going to tell you a story about something he said the other day in response to us witnessing a terrible motorcycle accident on our drive from Los Angeles to Tucson. Oliver was driving, and I was reading when he yelled out and grabbed me and I looked up to see a guy flipping over and over and a bike in the air and the guy rolling on the road and then we were past and pulled over and I was calling 911 and then Oliver pulled back out on the highway and we were on our way our hearts pumping and both of us exclaiming and repeating over and over what we'd seen and that terrible rush in the body for many minutes before we quieted. You know what's really weird, Mom? Oliver asked, and I said, What? and Oliver said, I noticed that guy a while back on his bike and he had a flag or something on his jacket and I thought he was probably a stupid Trump supporter or gun guy or just an asshole on a bike, but when he went flying through the air,  I saw his shirt go up his back and it was ripped up, his back was all red and I felt bad for him and then I thought that everything in the world is going to be okay because of that, that we feel bad for and care about people, about life. It's about love and that kind of thing.

P.S. Lest you believe my son to have reached some lofty place of magnanimity and compassion, led there by a mother more bodhisattva than human, I'll confess that we decided we wouldn't feel the same way if it'd been Dear Leader who'd been on that motorcycle.

The view from Oliver's penthouse dorm room.

Beloved

The world is in this room. This here's all there is and all there needs to be.

Sethe, from Beloved 

It seems like everyone is mourning the death of Toni Morrison, and I've been tearing up off and on all day thinking of her, of her spirit, her words, her regal presence, her books, what she meant to me my entire adult life, as a reader and a writer and a human being, and then I was thinking of all the people slaughtered over the weekend, of the piles of dead children, of the human stain of racism in our country, of all that we have to do, to fix and how to be. I first saw Toni Morrison at Spelman College in the late 1980s, shortly after Beloved was published, and I sat in a huge auditorium with hundreds of people, mostly African American young women, and before She walked out onto the stage, a group of women played drums, the beat so steady and rhythmical they presaged her voice, her voice with the words, always, that she put on the page. She walked out, probably at the age I am now, and I was struck then by her presence and by the impact she had had on the women in the room. She was their voice. I read nearly every single thing she wrote. The second time I saw her was not too long ago in Los Angeles, in a theater downtown filled with the mix that is Los Angeles, yet when she walked into the room, she was so grand, so regal, her voice so rich and deep with humor and wisdom, all of us so rapt and smiling and nodding our heads that I thought then: she is all of our voices.

Rest in peace and power, Toni Morrison. Thank you.


This is the time for every artist in every genre to do what he or she does loudly and consistently. It doesn't matter to me what your position is. You've got to keep asserting the complexity and the originality of life, and the multiplicity of it, and the facets of it. This is about being a complex human being in the world, not about finding a villain. This is no time for anything else than the best that you've got.

Toni Morrison, in an interview with writer Pam Houston, Oprah Magazine,  2003

Aiyana

Photograph by Carl Jackson
cbjphoto.com
Facebook page

This morning I quoted a Haitian proverb that I remembered reading way back in an article about the great physician Paul Farmer.

Dey mon, gen mon (beyond mountains, there are mountains)

It became the title of a book by Tracy Kidder about Farmer and his work in Haiti. I was talking to Carl, the Bird Photographer that I love, who is currently in Houston helping in some of the clean-up going on there after the terrible hurricane two weeks ago. It is, as you can imagine, nearly insurmountable work.

Some interpret the proverb as meaning there are inexhaustible opportunities. Others say that surmounting obstacles gives you a better view of the next.

I am so grateful to Carl and his friends for doing this work, these acts of love.

As I type this, it's only been an hour or so since a young girl, one of our beautiful and close-knit epilepsy and cannabis community here in southern California, was rolled into surgery to remove her organs for donation to those who need them. Aiyana was admitted to the hospital a few days ago and put on life support, her brain unresponsive, perhaps from a seizure or some other hideous complication of the rare disorder she had suffered from her entire short life. She was a radiant child, her mother a goddess. We are all bereft to lose her and know her mother's and siblings' heartbreak, yet are also filled with the most encompassing kind of love that you can imagine, the kind that comes from witnessing and abiding with suffering and unconditional love.

So many obstacles, yet love is endless.

Dey mon, gen mon

Three Comments, Plus

Sometimes I can't get out from under sorrow. An oppressive blanket that I just can't kick off. Otherwise, it lies under me, a mattress on which my strong straight back rests.

Silly metaphors.


I.

Anger first, then sorrow, my friend Mary texted me this morning.



II.

No rocket science, especially about the med community overall. Pharm feeds off and feeds it, now it wants the lion's share of a thing that sadly everyone else worked so hard to prove was the right thing all along. They will of course fuck it up, wrote my friend Ken in response to my most recent posts.



III.

The unwillingness to have a conversation is shocking to me. This is how our previous two docs functioned. They didn't want to hear anything from us and didn't entertain the thought that how the body functions or doesn't on the most basic biochemical levels might contribute to seizures. Or even tell us that they didn't believe that was an issue.

So my question to myself is why continue seeing neurologists at all? It seems to be the wrong tool for the job at this point, like going to an auto mechanic to treat cancer. But we're told that we have to because it's irresponsible not to have one. But is it? We've learned on our own how to wean as safely as possible. We've learned from experience that extra [drug] and not rescue benzos best stop her clusters. But I still worry, always worry, that as EVERYONE says, we can't go it alone because they're DOCTORS and they know things and we're not. But I'm not sure doctor means what people thinks it means at all. It sure as hell doesn't mean critical thinking or curious mind, wrote my friend Chris from across the country in an email I got this morning.



The gentle advice of my friend Moye, my sweet sister Jennifer's concern, the Bird Photographer's embrace, the raucous laughter of my friend Debra, and the arrival of Saint Mirtha conspire against the immediacy of sorrow. They, and the three comments that fell into my lap this morning, peeled the blanket back.

Thank them.

I am always trying to string moments together to make a strand that will last, something to hang around my neck, but I'm thinking that I must acknowledge moments as only moments. There's no end to the stringing, otherwise. So many sounds. Sorrow. Samsara. Surrender.

Identity is Fluid

So, this is a picture of me and newborn Sophie in March of 1995. I found it this morning when I was rummaging around in a drawer on my desk. It was precisely twenty-two years ago and less than three months from the day that life as I knew it would begin to unravel. As a friend put it: BTSHTF.*

When I see these old photos of The Time Before, I can't help but peer at them in a sort of writerly self-absorbed searching for the meaning of the whole clusterfu**k that we call life kind of way. I'm constantly wrestling with identity --what it is, exactly, that makes us who we were, who we are, what makes us human. I can remember who that young woman in the picture was if I think hard enough, and lately my life's strange and beautiful circumstances have reminded me of her, too --  but I believe we hold some kind of essence that is constant even in inconstancy, if that makes sense. I will go out on the proverbial limb here to include Sophie as well. That baby I'm holding was very different from the baby that was diagnosed with infantile spasms a couple of months later. I remember thinking in the months that followed that I'd been given a new baby, so violent were the expectations up-ended. Bless my sweet heart. I don't remember when I realized that Sophie's essence was intact, but today, twenty-two years later, I'm thinking about how identity is fluid, and it leaks out of the eyes and down the face from some kind of deep dark well.

 I toured a facility for developmentally disabled adults this afternoon. The place was a sort of Bleak House and fulfilled my expectations for such a place, even if I entered it with the usual dumb hope whose source shares room with fathomless sorrow. I was going to write a quasi-bitter post about the sheer physical ugliness of the facility, how many adults were crammed into tiny rooms with no windows or decoration or flooring or soft surfaces, how we determined that Sophie's toileting needs could not be accommodated as there was no changing table in the restroom, and how when I voiced my objections to that, I was reminded that perhaps the Senior Care facility down the road was a better fit for my daughter. How old are the people in that facility? I asked. Around 45-80 years, but we have some younger ones, the director told me with a straight face, even as she took the machete hanging on the stucco wall and slashed my chest. Reader, these people were kind and industrious, I swear.

Identity, you remember, can be fluid.

At worst, the seventeen minutes I spent at the facility was a kind of Monty Python scene of absurdity with tinges of Ingmar Bergman and the careening humanity of Fellini. Know that places like this are where WE AS A CULTURE HAVE CONSIGNED OUR FELLOW HUMANS WITH DEVELOPMENTAL DISABILITIES, at least those who aren't from wealthy families (and I mean wealthy, as in rich as shit). These are the places that WE AS A CULTURE LEAVE TO POLITICIANS TO FUND, TO HACK AWAY AND MARGINALIZE. At best, visiting Bleak House was the sort of experience that has helped to define me as a person and a writer, however self-absorbed.

I lifted my head from the steering wheel after crying there for a moment or two and realized that it'd be interesting to take a photo twenty-two years ATSHTF.** If identity is fluid, it is here, leaking out of the eyes and down the face from some kind of deep dark well.

Identity is fluid. Essence is intact.
























  *Before The Shit Hit The Fan
**After The Shit Hit The Fan

The Landlocked Life

Weeki Wachi Springs

This morning I met Moye at a neighborhood pastry place for a belated birthday breakfast. She stuck a candle in the bunch of hair that I had pinned to the top of my head, and then we lit it and I burst into flames and disappeared. Just kidding. Well, that wasn't funny, really. We actually sat down and drank delicious coffee, ate this incredible concoction of bread, exotic sauteed mushrooms and eggs and shared some divine confection -- a cannelle, I think it was, all crispy caramelized on the outside and eggy soft in the center. We talked about our children and shared some memories of our high school years (we grew up together in Atlanta!) and we laughed together like we always do. She gave me a beautiful bracelet/necklace that I promptly wrapped around my wrist and a wonderful little book of poetry called Poems of the American South from the Everyman's Library Pocket Poets series. She wrote a beautiful inscription inside in her inimitable gorgeous handwriting, drawing my attention to the poems inside that include mermaids, Tar Heels and tender mercies. Thank you, Moye, for your years of friendship, for your sense of humor, your support, your beauty and your inspired art.


September 11th is always a sombre day -- isn't it? Our minds inevitably go back to where we were and how we heard and how we led our lives in those days following. There's a tyranny to sorrow, isn't there? What we are almost required to feel or remember? I'm always struck, on this day, by the strange paradox of the Never Forget communal imperative juxtaposed with the get over it mentality we place on individual loss. It's something I think about, particularly in regard to my friends who've lost a child or suffered some other big loss. There's a tyranny to sorrow, isn't there -- or at least a manufactured order to it.

I was going to post a poem on this somber day of Adam Zagajewski's -- a poem that I've posted before that I think is entirely appropriate, but instead I'll give you the link and post the mermaid poem from the book that Moye gave me.

It's all we can do, really.

Try to Praise the Mutilated World by Adam Zagajewski



My First Mermaid

I
In Florida, where these things happen,
we stopped at the last roadside attraction.

In a small theater decorated with mold,
behind a curtain sagging like seaweed,

a wall of glass held back a wall of water.
And there, in the springs, a woman in a bikini top

and Lycra fish tail held an air hose to her lips
like a microphone. What was she waiting for?

Into the great open bowl of the springs
a few fish drifted. They looked at the two of us.

They shook their heads and their bodies rippled.
Air bubbles shimmered in the filtered sun,

each a silver O racing to the surface to break.
We'd missed the day an unscripted underwater blimp

of a manatee wobbled into view. The gray, whiskered lard
of a sea cow or the young woman who sang --

lip-synched, rather -- some forgettable song,
her lipstick waterproof: which was the real mermaid?

II.
Given the weight of the water, nothing happens fast
to a mermaid, whether it's love or loss.

Not like the landlocked life, I wanted to warn her.
But here came a prince in street clothes,

trying to think thoughts that were heavy enough
to make himself sink to her level. His shirt ballooned,

a man turned not to a merman but a manatee.
Yet, in the small eternity it took for him

to grasp her greasy flipper, for her to find
his more awkward human ankle, and then

for them to turn, head over each other's heels --
a ring rolling away, too beautiful to catch --

they lived happily ever after.
Until one of them had to stop for breath.

Debora Greger (1949-)

How We Do It: Part XLV

There's a lot of crying going on behind the green sunglasses, and this morning there was crying without them. The morning was gray in the way of June gloom, and I had just dropped Sophie off at her summer school location, a middle school in the heart of Hollywood that I had visited many years ago when I was looking for a middle school for her. It's an ugly school -- maybe one of the ugliest schools you'll see in this part of Los Angeles, and I remember crying when I left it the first time. I had dragged Sophie out of bed this morning, fed and dressed her, something we are generally loathe to do before she's ready. On Saturday I got a notice from the school that if she didn't "show up," she would not be eligible for the four weeks of the summer program. It was a threatening letter in the way letters from the Los Angeles Unified School District are threatening. They are bland. They are mediocre. This is the sort of thing that frightens me -- the bland, the mediocre. I need something to do with Sophie for a few hours every day. I can't pay for everything. There are groups of mostly boys and young men in clumps at the entrance. I know some of them from Sophie's regular school. One young man screams wildly, flaps his arms and runs around in circles. When I pushed Sophie's chair into the tiny elevator to take her onto the second floor of the ugly building, I couldn't help but wonder what would happen in the event of an earthquake. I couldn't help but wonder why they would put disabled children into classrooms on the second floor. I remembered the room I was shown so many years ago at this same school, a trailer across a giant concrete courtyard, not a speck of green in sight. Condensation from the uniform cleaning factory across the street fell on my arm, and when I worriedly asked the aide what it was from, she told me that she thought it was bleach. When it gets too heavy, we bring the kids inside.That was a long time ago, but I couldn't help but remember it during the ride up the elevator. The doors opened, and I pushed Sophie into a bleak room whose windows were covered with landscape posters. The fluorescent lights blinked, and Mr. G introduced himself. He asked me what Sophie's problems were, and I told him. When Sophie's aide M walked into the room, I felt a rush of relief, but I still felt terrible leaving Sophie in such a place. Remember. I need something to do with Sophie for a few hours every day. I can't pay for everything. I can't give her a nicer life. There is nothing for these kids to do. They are, evidently, not worth it. The legion of disadvantaged kids that go to these schools, these ugly, impoverished schools, are not worth it. I don't know how they do it. I know how I do it. I drop my daughter off. I leave her with a beloved aide and strange Mr. G on the second floor of a building in a room that has no sunlight. I walk down the stairs and out the door and get into my car and drive off. I cry, openly, without sunglasses and don't care at the stoplights. All the way home. When I get there, I go into Sophie's purple room and make her bed. The sun is out now. I'll do my thing. I'll wait for her to get home at 1:00 and try to make it up to her.