Tuesday, July 22, 2014

Rambling on Venice Blvd.

Venice Blvd

I drove out to Santa Monica this afternoon for my annual mammogram. I had gotten a babysitter for Sophie and turned down some plans to meet with a friend for this appointment. I wanted to get it over with, particularly since very recently one of my best friends got diagnosed with breast cancer from a routine mammogram. I know five people who've recently been diagnosed with breast cancer, and at this point, we all know that lightning can strike twice, that bad things happen to even the beleaguered or women like me who have, already, a lot on their plate. Sometimes, I imagine what I'd do if I got a cancer diagnosis, and I can't come up with anything more than well, of course I do, and that's not to evoke pity or even because I'm pessimistic. I think I've just learned to expect that things can go wrong or crazy, in the snap of a finger. Anyway. I hit a bunch of traffic traveling -- it's summer, and so dang beautiful outside. I imagined all the cars were going to the beach. The imaging clinic has free valet parking. I've always been struck by the meticulous care women's clinics take for their patients. It's in stark contrast to the various neurology clinics, even pediatric ones, that I've frequented over the last two decades, where it's like one horror show over the next. I checked into the office, updated my personal history and sat in a chair to wait. A woman in scrubs came out with a clipboard in her hand and called my name. She sat down next to me and told me that the mammogram machine was down, that she was sorry but that I'd have to reschedule. I almost didn't understand what she was saying and might have said What? and then listened when she told me The mammogram machine is down and you'll have to reschedule. There's not much you can do, is there, but sigh and walk up to the receptionist and reschedule your mammogram. Do mammogram machines really go down? Is there only one mammogram machine at this very prestigious imaging clinic? The thought crossed my mind, later, when I was sitting in the godawful west to east traffic that it wouldn't surprise me if a celebrity in need of a mammogram had come in some back way and they'd closed the place down for her. Musing at a standstill in my car on Venice Blvd, the route I'd chosen over the freeway, I told myself that if that thought just sprang into my mind in that moment, apropos of nothing, it must be true. That sort of thing happens in this city, and I'm one of those people that believes if you can conceive of a soul, there must be one. Does that make sense or does it just sound crazy? It's sort of like a psychic hit -- the kind of thought you have like a bolt of lightning, completely irrelevant to the situation at hand. I have them periodically -- you know, when I suddenly know that the guy behind the counter handing me my prints at the photo shop is a pedophile, or the woman standing at my window in the carpool line is going to tell me that she's pregnant. I probably do sound crazy. I sat in traffic on Venice Boulevard at a near-standstill for a really long time, thinking about these things. I also looked out my window and tracked a woman in a blue-spangled robe and head covering. I wondered whether she was Muslim or a nun. There were the sequins, though. She walked faster than my car moved, and at one perfect second, when the car next to me moved forward and a space opened up, I took her picture. She was on her way home, had some flatbread in her bag, would tear a piece off and eat it once she got inside, wait for her son to call. At least I think so, but I'm pretty sure.

Sitting in a Car

All my stories are about the action of grace on a character
who is not very willing to support it,
but most people think of these as
hard, hopeless and brutal.

Flannery O'Connor

Sitting in a car in a flowered dress, I was talking to you as if it were a natural thing, the give and take, the soft laugh, the absence of flesh. There was no talk of being centered, of allowing things to unfold, the kind of Buddha-speak to which those of us who spurn the spiritual gravitate toward as if it will save us. I sort of like the sexism in Updike and Fellini, I offered and I wasn't embarrassed. You listened even as your words tumbled over mine and mine over yours. It occurred to me in my heresy that it was because I sensed vulnerability, there, in the coarse language of Updike, the parade of female flesh in Fellini. You were the one that mentioned O'Connor, those horrific characters, the stories. I have this image in my mind, this character that won't leave me alone, I told you. Remember the scene in "The Graduate" where the mother throws her head back and screams? Yeah, you said, and then you made that noise that she made. She visits me all the time, I said. Not that mother but that woman. She needs a name. She has a helmet of hair. She laughs like that. Throws her head back and laughs maniacally. We had to stop talking. I had to go, get out of my car. There was nothing more than a string of words in that conversation. We aren't most people, hard, hopeless and brutal. There was everything, though, that was soft, of grace. 

Monday, July 21, 2014

Thoughts and Actions After Leaving Your Heart at LAX

  1. Thought: Does my life have a purpose outside of the beautiful boys and girl that I've brought into the world, the children who order my days and nights?
  2. Thought: What will I do if a missile hits their plane, and it goes down? Will I become a vengeful, crazy woman intent on destruction? Will I be a domestic jihadist, maybe even a conservative? I know this sounds insane, but I'm nothing if not honest. Notice that the above photo is a selfie when the boys landed in Atlanta, so you can disregard any thought of your yellow dog becoming a member of the armed forces. You can tell they were thrilled when I placed my order via text.
  3. Action: Try the new bakery on the way home and around the corner from the empty house. Order an incredible croissant with roasted tomato, bacon and Gruyere and some coffee for there and a Paris-Brest to take home. Sit down at a long table and pour coffee into beautiful mug from a silver carafe. Drink coffee, eat croissant, page through an actual copy of The New York Times, which feels good in the hands but is so filled with horror that you must push it aside. Gaze at the to-go box with Paris-Brest inside. 
  4. Action: Decide that it can't wait and eat Paris-Brest -- all of it.
  5. Thought: Know that some friends would call this taking care of yourself and others' emotional eating. As you lick the insides of the box, where the hazelnut cream is smeared, think I don't give a damn about anything in this moment.
  6. Action: Get home and wander aimlessly about the quiet house, waiting for Sophie to get home from a bike ride with her father. Straighten up boys' room, make beds lovingly, still mournful of their inhabitants' absence. Notice, suddenly, that elder son's clear retainer is lying in the folds of the navy bean-bag chair. 
  7. Thought: I wonder if he's been wearing this thing at all over the last month or so? What the hell? Where is the case? Those $5,000 teeth are probably getting crooked as we speak. Decide to have a few words with the kid as soon as he lands.
  8. Action: Work for a couple of hours on the project that my friend M gave me. I am so grateful for this work, and it's something so worthy that the work is a pleasure.
  9. Action: Make barbecue chicken for a friend in the hospital using the broiler in my 1928 oven for the first time. 
  10. Thought: Who knew the broiler worked and was so great? I've raised three children and never made barbecue chicken with the broiler. What the hey?
  11. Thought: Are we as a culture evolving into persons who will all have breast cancer and autism? It seems that way as five people I know have recently been diagnosed, and I know countless children with autism.
  12. Thought: I don't make a big deal about the womanly cycles, menstruation, or The Change, but really -- I'm nearly 51, and there don't seem to be signs of it, and I definitely don't need to have any more children, and -- let's face it -- buying feminine hygiene products for 38 years is a drag.
  13. Action: Take Sophie for a long walk to fend off the blues which are associated, I guess, with the two boys being gone and #12 above.
  14. Action: Send the elder son a text about the left-behind retainers that were found in the folds of the bean-bag chair.

Reader, tell me what sort of thoughts and actions you're having and doing today.

Disability Services 101

The above photo has nothing to do with this post, but when I googled vintage house call nurse, in hopes of finding something relevant, I came upon a treasure trove of vintage nurse novels with the above as the first. I believe I posted about these books before, perhaps when I admitted to a Harlequin romance book club membership in my very distant past, but they're worth a visit. I'm also partial to Hootenanny Nurse and Nurse Pro Tem, which combines my fear of the intimidating Latin term and love of international romantic intrigue. Check them out yourself, in those vast swathes of free time that we all have!

Anyway, back to our regular programming:

My Australian friend Michelle posted this on her Facebook page as her status update yesterday, and I just loved it so much that I got her permission to post it here.

Thanks, Michelle!

Here's what disability services should look like. When your kid gets diagnosed, after a decent interval for tearing your clothes and wearing sackcloth and ashes, a caring human being comes over to your house. They bring a month's worth of groceries and some clean plates. Also cake and coffee. They say: "hi and welcome. Here is every card or identifier you will need for the next...forever. Here is your disabled parking. Here is the key to those swings in the parks they put in but no one can use. Here is a key to special bathrooms made of gold where fairies change your kid while mixing you cocktails. No, no one else knows about them. Here is every bit of equipment you can get, with all the forms pre-filled because we talked to your doctors and therapists. Make any changes you think are best because you're the one who knows your child and their needs most. Here's some money, because hey, society thanks you for taking care of our weakest citizens for us without making them a burden on an overrun and inadequate public system. Here is ample respite care for both you and the child. And here is a support group and some free marital therapy. Call me anytime. Mind if I put on some of your washing? Why don't you go have a lie down?

Can you even imagine?

Sunday, July 20, 2014

I couldn't call it a day without replacing those raptor-headed women on the previous post with these lovely children

Home from camp for less than 24 hours, Oliver was already outside in our yard, watering the lemons and vegetables. We have a serious drought going on, if you hadn't heard, and we're obeying water restrictions. That's why our lawn looks so awful. I wish I could enlist someone to do a complete overhaul of our front and back yards -- make them drought resistant. Maybe we'll do it ourselves in a grand, homeschool-style effort this fall.

Henry and I went to see the movie Boyhood the other evening and then took a bunch of photos on the top of the Arclight Cinemas parking garage. The glorious sunset helped to mitigate the obliteration I felt watching the film. It was incredibly beautiful and interesting, and I haven't gotten around to writing a three-line movie review, but I will. Here's what the sky looked like:

And here's Henry's hand in the sky:

I'm going to miss those boys. They're leaving tomorrow for a trip to my parents' house in Atlanta and then onward to Hilton Head Island. We've been joking all night on when they might catch sight of a person carrying a gun -- legally -- in either state. Good Lord. I will join them for a few days next week, but this house is going to be quiiiiiiiiieeeeettttt, for sure.

Sunday Preaching to the Choir (I hope), Sesame Street and a Poem

One of these things is not like the other
Two of these things are kinda the same
One of these things is not like the other
Now it's time to play our game
Time to play our game:

Women in Dallas, TX protesting the child refugee problem at the border
July, 2014

Hazel Massery, shouting at Elizabeth Eckford, one of the Little Rock Nine over integration
Little Rock High School, 1957

President Franklin Roosevelt on the 50th anniversary of the Statue of Liberty
"To the message of liberty which America sends to all the world, must be added her message of peace."
October 28, 1936

The New Colossus

Not like the brazen giant of Greek fame,
With conquering limbs astride from land to land;
Here at our sea-washed, sunset gates shall stand
A mighty woman with a torch, whose flame
Is the imprisoned lightning, and her name
Mother of Exiles. From her beacon-hand
Glows world-wide welcome; her mild eyes command
The air-bridged harbor that twin cities frame.
“Keep, ancient lands, your storied pomp!” cries she
With silent lips. “Give me your tired, your poor,
Your huddled masses yearning to breathe free,
The wretched refuse of your teeming shore.
Send these, the homeless, tempest-tost to me,
I lift my lamp beside the golden door!”

Emma Lazarus, 1883
 the final lines inscribed on a plaque in the pedestal of the Statue of Liberty and installed in 1903

Saturday, July 19, 2014

The Big O Is Home From Camp!

For one brief, shining moment there was brotherly love.

Then this:

And this:

Henry told him that "the Dodgers SUCK" (Oliver is a Dodgers fanatic). Then Oliver showed us his bulls-eye and made threats.

My son, the sharp shooter.


Sophie has gone back to doing yoga with Limor, who teaches a special kind of yoga for children with special needs. She worked with Sophie for many years, and then we took a break as Sophie's seizures got out of hand, and we never knew if she'd have one or was sleeping one off. A couple of weeks ago, I decided that it was time, so Limor comes once a week and stretches with Sophie, helps her to breathe, sings to her and otherwise works her yoga magic.

If you want to hear more about Yoga for Special Needs and live in southern California, email me and I'll send you on to Limor.

P.S. I went back to yoga this morning, too, and not at the Y. I went to a Kundalini studio different than the one I used to frequent (the one where Russell Brand sort of took over) at the urging of my friend Nancy. It was fantastic. I feel as if a weight has been removed and something opened up. Thank you, Nancy. Thank you, dear body that allows me, still, to stretch and bend and breathe and smile.

Friday, July 18, 2014

"This life is so full of confusion already, there's no need to add chaos to chaos"

A friend of mine posted this clip on Facebook, reminding me of one of my favorite scenes in one of my favorite movies of all time. In this few minutes of film, there's an answer to my confusion over the Mike Kelly exhibit, the insanity in the Middle East and the Ukraine and all the rest of it -- seriously. Oh, and and there's Marcello Mastroianni.

I could possibly make this another #don'tstarepaparazzi post, but I won't

and let her stare right back at you. Sophie does look a bit weary today, these days -- we're still struggling with a lower CBD ratio oil than we'd like, and she's had a seizure or so nearly every day. We really do think and hope that it's the oil, that once she gets the stuff she had a month or so ago, she'll go back to being seizure free for days and weeks at a time. The good people at Realm of Caring are working hard to help us. Our community learned yesterday that a little one with Dravet Syndrome (the same disorder that Charlotte of Charlotte's Web has) died in New York, waiting for the damn medical marijuana political wheels to move in that state. It's hard to not feel angry or impatient or despairing when children are dying for no good reason, anywhere in the world. That kid with the curly hair, lying contorted on a desolate beach, blood pouring out and into the sand. A child, among hundreds, blown up and out of the sky, landing in bits on this sorry, contested earth. You know I'm not a religious person, and I don't believe that there's a divine reason for every single thing. I believe, most often, in the primacy of chaos -- is there a term for that? I guess you can make meaning out of the chaos, make good out of it or gain some wisdom, let the light of Love in, but it's damn hard not to cling, to desire, to crave -- the root of all suffering indeed. When it isn't a bonfire and smoking hot, anger is like tendrils curling around my ear, edging out my nose as I grow older, at the tips of my long fingers where I grip the wheelchair, laid over the widest part of my foot, bearing, daring, even, the whole thing, my body, to take another step.

Thursday, July 17, 2014

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.

when poetry falls into your lap like treasure

when you have forgotten Sunday: the love story

—And when you have forgotten the bright bedclothes on a Wednesday and a Saturday,
And most especially when you have forgotten Sunday—
When you have forgotten Sunday halves in bed,
Or me sitting on the front-room radiator in the limping afternoon
Looking off down the long street
To nowhere,
Hugged by my plain old wrapper of no-expectation
And nothing-I-have-to-do and I’m-happy-why?
And if-Monday-never-had-to-come—
When you have forgotten that, I say,
And how you swore, if somebody beeped the bell,
And how my heart played hopscotch if the telephone rang;
And how we finally went in to Sunday dinner,
That is to say, went across the front room floor to the ink-spotted table in the southwest corner
To Sunday dinner, which was always chicken and noodles
Or chicken and rice
And salad and rye bread and tea
And chocolate chip cookies—
I say, when you have forgotten that,
When you have forgotten my little presentiment
That the war would be over before they got to you;
And how we finally undressed and whipped out the light and flowed into bed,
And lay loose-limbed for a moment in the week-end
Bright bedclothes,
Then gently folded into each other—
When you have, I say, forgotten all that,
Then you may tell,
Then I may believe
You have forgotten me well.

Gwendolyn Brooks

Can you even believe how beautiful and evocative that poem is? You can listen to it here:

Wednesday, July 16, 2014

What you look like after doing a 5 minute radio interview about cannabis

Not sad anymore, right?

Seriously, I just drank a glass of wine and ate a bowl of pasta with ground lamb, zucchini, olives and feta cheese. I ate it alone as Sophie is sleeping, and Henry is at a lacrosse practice in the far reaches of the city with his father. If I were toast, you could slather me with butter and homemade apricot jam. But I'm just me, and I just got off the phone with Bruce Kelly, the radio guy at The National Marijuana News. I'm not sure if you can listen to it or whether it was broadcast live, but I basically told Sophie's story which you've heard a million times. The site looks very interesting, though, so check it out. Evidently, the Bible Belt folks are very into this particular radio show. It touts itself as being unbiased, and from a cursory look, it does seem so, but I have really never listened to a 24-hour radio show, much less spoken on one, so give it a look and tell me what you think. One thing I do know, toast or toasted aside -- being on this medical marijuana journey has thrown me in bed with some of the most unlikely companions. I've met evangelical Christians, Armenian Orthodox Christians, atheists, pagans, conspiracy theorists who believe the government is capable of altering the weather, and die-hard Obamaphiles. There are people lying right next to me who believe that God has delivered this weed to us. I am grateful that they have not only let me into their bed, but also don't expect me to believe like them. In some cases, we have absolutely nothing in common except for our belief that marijuana needs to be rescheduled and studied, but most importantly made accessible to our children with refractory seizure disorders and other diseases. If someone had told me even two years ago that I'd be talking on a radio show about Sophie's dramatic reduction in seizures, and that I'm in this group of people many of whom have beliefs in general that are directly contrary to my own, I would have thrown my head back and laughed one of those maniacal laughs I periodically imagine myself doing.

I am humbled by this, by our ability to accept one another and work together to improve the lives of our own children and others' children. It can make anything seem possible, can't it? Well, please don't ask me to vote Republican or look kindly on Hobby Lobby's plan to build a museum to the Bible in Washington, D.C. -- I do have my limits.

Are you okay?

Gilroy, CA

That was the message I got, over and over, via text and email and comments on the blog right after I posted that photo of myself that I agree, in retrospect, looks sad. How wonderful this blogging community is -- how loved and cared for and watched over we are, each to the other.

I am okay.

I really do need to go back to yoga, though, and plan on doing so this Saturday. Why is it that we drop the things we know we need to do, let them slide, get lazy, forget the essentials and are then sort of freaked out when we go back, knock ourselves upside the head -- why, why am I so dumb to have let this go? Maybe I should speak for myself -- maybe you are diligently chanting and exercising, releasing stress hormones, doing positive affirmations and a gratitude journal practice, having sex twice a day or twice a week (twice a year?) and don't know what the heck I'm talking about. I've instituted another news black-out -- this one prompted by all the mayhem and insanity in Israel (and don't ask me to defend Israel's "right to protect itself" or Hamas' insane rocket launching because I think it's all, all madness) and then the plight of the Central American children in Texas and California (how vile are the people that "want America back?" or who claim we can't accept these children). I sound like a doddering liberal fool, don't I? We're all so ineffectual, aren't we -- all talk and rant and rave as if it will change one bit of what goes on in this crazy world.

I don't have any answers but only opinions and that doesn't get anyone anywhere. But I'm okay, so thank you for asking.


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