I barrelled down the 405 yesterday, heading south to Seal Beach for a day of lacrosse watching. The sky was so blue and so clear you could see the snow on the tops of distant mountains to the east, and the edge of the Pacific dropping off the globe to the west. I had three boys in my car on a Saturday morning -- Henry and two other players -- but no one was talking. I heard a grunt every now and then, though, and turned up the radio. When the phone rang, we all startled, and when Oliver's clear, still-high voice came over the Bluetooth, we winced at its brightness.
Mom? Yes? Where's the lemon costume? Um. In the costume drawer? No, it's not there. In your closet? No! It's not there! Where is it? Well, I have no idea where it is, I said. You'll have to do your lemonade stand without it. Great, he replied, and hung up.
Bruce Springsteen came on the radio for about two seconds before the phone rang again. This time it was The Husband.
Where's the lemon costume? I have no idea, I said.
The Husband and The Big O are frightfully similar in temperament, and I imagined a flurry of feathers, chest-beating, sticks being thrown, the sky perhaps falling.
What the he ---
The phone went quiet and Bruce came back on. I thought about glue for a bit, how I am The Glue, and then I thought about Bruce Springsteen, his arms, and how he plays his guitar, that thing he does, and then I thought about surfers, how watching them makes me warm.
The night before I barrelled down the 405 and took a walk from the field to the ocean, climbed over a rise of sand into blue and then walked back and watched three hours of lacrosse, I had come home from a delightful dinner with three dear friends, my head buzzing just the tiniest bit from one very dirty martini and a bowl full of pasta, to a boy fight. Is there anything more aggravating or tedious than brothers bickering? Men fighting? I don't want this to be a lament against the male species, so let's make everyone an animal and do some anthropomorphizing. The small and stout chicken is incredibly industrious but also likes to peck. He pecks and he pecks and he pecks. He pecks on the ape and he pecks on the cheetah. The ape can't stand the pecking, would rather sit and chew on a blade of grass for the duration. He reaches his big, meaty paw out and swipes the chicken, and the chicken squawks far louder than is warranted and begins to peck and peck on the cheetah who is indolent for the most part and good-natured but at a certain number of pecks, he reaches his huge, lazy paw up and makes the chicken fly. There's a burst of feathers and chicken tears because the cheetah is so terribly advantaged and just so damn gorgeous but a mystery, a deep, primitive mystery. There's a wild animal keeper who happens to walk in, she radiates light, the animals are afraid of her, and they love her, too, neither animal nor human, perhaps a goddess, or maybe just glue, and she plucks a feather from her hair where it has landed after flying off the chicken who pecked on the ape and then on the cheetah. She twirls that feather in her hand and catches the cheetah's eye before he takes off with a lacrosse stick held high, and the ape? The ape with his heart of darkness chews his grass, unfathomable.
I've told ya'll about the new e-book publisher, SheBooks, right? They'll be publishing a bit of my writing in the next few months, but right now, right this instant, they've published my dear friend and writer extraordinaire Brittany Tuttle's (of Vesuvius at Home fame) novella. It's called Stone and Spring, and I have already downloaded it on my Kindle and read about half of it last night before finally having to go to sleep Like everything Brittany writes, it's gorgeous, tight -- lyrical and intense. And like nothing she's ever written (that I've read) or that's been written, maybe, by anyone, it's at once deeply feminine, childlike and just this shy of brutal. I felt, reading the first half or so, like I was unwinding a spool of film -- black and white -- the images transparent and haunting, an undercurrent of violence. But, hey, I'm not even finished with the book. I can't wait for tonight when I'll climb into bed and finish it, come up for air.
I woke up this morning an adolescent, and it feels weird. I conjured groups of staring, pointing girls, a devastating joke from a boy or two, Augustinian self-recrimination, the vestige of Catholic guilt. You're a pirate's dream, he said. A sunken chest! The sheet made a hood over my red fingertips, my nose twitched. I put on the garb of The Cheerful Mother, coaxed my son out of bed, poured coffee and thought about Sophie's birthday tomorrow, the ENT visit today, the dinner later with two dear friends, the thirty-eight years that have passed since eighth grade, how deep the gully, the last nineteen, onward.
They disappeared, which was excellent as I had driven them out of the house and off their electronics with shrewish shrieks. Stop fighting! Go outside! You mean to tell me that you can't figure out anything to do but play with that crap?
You fish-wives know the drill:
To the boys' credit, they picked up a ramp lying in an alley near our house, brought it home and rigged a go-kart on a skateboard. Henry amiably pushed Oliver who actually wore a helmet, and then -- lo and behold -- they put their two heads (knuckle generally comes to mind) and plotted out a real Go-Kart plan, one that will use their own money. Wheels are involved as is paint and wood and numerous trips to the newly opened OSH around the corner.
I feel triumphant. Less like the fishwife shrew and more like I've been tamed -- albeit Liz Taylor-style.
Ya'll, the tentacles of the great and almighty Anthem Blue Cross are still wrapped around me. As some of you know, our relationship is rocky at best, a desolate wasteland, at worst. I have been trying to extricate Sophie from the grasp of the beast for nearly two months -- via telephone, regular mail and then certified mail. I resorted to calling that other beast -- The Bank -- to cancel automatic payments to Anthem. Still, the bills came and today's even had $50 of interest tacked on to the warning that coverage would be terminated after interest and premiums were paid.
What the hey?
The Anthem Computer Man led me through the labyrinthine halls and into a windowless room where I was told that my wait time would be twenty minutes and the sweet, sweet strains of Bach played. I started typing. An Anthem Human Man came on, lo and behold, after twelve minutes and spoke gently. I don't see any letter stating cancellation, he said. Of course you don't, I said good-humoredly. The Anthem Human Man made some gentle entreaty about HIPPO laws (and yes, I know they're not really hippo laws) and I explained that my daughter, the said Sophie, the MEMBER, was my severely disabled daughter and that I spoke for her as she couldn't speak. At all? the Anthem Man asked. That's right, I answered. You'll notice that all communication regarding her account has my name on it as well, I added. He went to check the hippo pond, gentle strains of Bach came through the speaker, I tapped my red fingers, wondered how deep the mud was in the Anthem hippo pond and contemplated the universe.
The Anthem Computer Man is taking care of things right this very moment, as I type. Bach is still playing.
Thank you for your patience, he whispered in his reed-thin voice, and I slithered out from under his arm, the last sucker -- pop.
I need to get back to reading more intensely because it's only through reading that writing flies.
An article in a magazine on the plane about memoir and sex led to an afternoon in a hot apartment in Nashville, being pushed back onto the closet floor, the hems of my dresses brushing his head, my face. A bed is a boat, and we drifted. Another bed, white, in a bungalow on a Caribbean island, and when I opened my eyes, butterflies were a reproach to when I had closed them, angry. Asian whores on your day off. A drive-in movie theater in upstate New York showing a porn film, moans blasting out of speakers twisted. Mosquitoes ate us alive, laughing until we finally rolled up the window. We rolled up the windows, slapped the sluggish, blood splat on my thigh, your shin, screams (the ecstasy) muffled. At one point there were only windows to remember, the one at the end of a black leather couch where I knelt, naked: branches stripped bare under a lead sky tracing the panes. Oh, I forgot. Much earlier, a hotel room, and you, skinny as a pencil -- every part -- quick! planes taking off, a piano, a telephone out of reach, a pulsating flag, stoned.
George Mason University in Fairfax VA has a unique program called the Mason LIFE Program. The Mason LIFE Program is an innovative post-secondary program for young adults with intellectual and developmental disabilities who desire a university experience in a supportive academic environment. Watch the video and share it!
At the Ballard Chittenden locks, Seattle, Washington
This morning, I opened an article in The Washington Post with this title: 'Mommy Lobby' Emerges as a Powerful Advocate for Children. I wouldn't be going out on a limb, here, when I state how demeaning I find this title, much less how inept. First of all, I worked for years as a parent expert with national organizations dedicated to improving the access to and quality of healthcare for children, and as both a leader and collaborator with other parents and a mother of a child with special healthcare needs, I can state with much confidence that most of us don't like to be called mom or mommy by the medical establishment, much less a newspaper. Secondly, the lobby consists of fathers, too, particularly out here in California where single fathers of children with severe epilepsy have served as pioneers for their children and their access to medical marijuana. The fact that this lobby of impassioned parents is reduced to the title mommy lobby underscores some of the most frustrating problems with our hierachical medical/pharmaceutical establishment, particularly the lobby's need to nearly BEG for something to happen.
The rest of the article is informative in parts, but not one single mention of the relative inefficacy of FDA-approved drugs for tens of thousands of children with epilepsy is mentioned. I didn't see a single mention of the combinations of drugs that our children are subjected to, either, their often vicious side effects, and the FACT that many of them have mechanisms of action largely unknown. It would seem, by the article, that mommies are standing in front of legislatures all over the country and begging for lawmakers to help them to save their childrens' lives and their families' quality of life, while other mommies are heroically dropping this scary, unknown substance into their witless children's mouths. Nowhere in the Washington Post article is any sort of acknowledgement or even deference to the grotesque inadequacies of current treatment for refractory epilepsy, the labyrinth that many parents have navigated to get "approved" treatment, the serpentine path from diagnosis to adequate care, nor the enormous expense of the almighty FDA-approved medications that our physicians have, basically, thrown at us after a selection that conjures images of a dart game in a bar.
I don't have any answers to this and feel blessedly grateful that I live here in California, was one of the first people to obtain Charlotte's Web for Sophie and that it has helped her dramatically. I will tell you that I feel increasingly enraged, if not surprised, by the response of the medical establishment and the media to this groundswell. I'm powerful, but I'm not a mommy, and because this is my blog and my platform and not a reasonable place where I have to work rationally in front of the Powers That Be, I'll tell the Washington Post this:
You can start by speaking with veteran parents of the epilepsy world about what they've experienced for decades. You can acknowledge that parents begging for treatment from their legislators is ridiculous. You can stop using phrases like mommy lobby.
Oh, and as the incomparable actor Matthew Mcconaughey's character says in Dallas Buyers' Club (who fought similar battles during the early AIDS years): Fuck alla ya'll.