Friday, August 31, 2012

The Extreme Parenting Video Project

Here it is! Finally, here it is!

I've got nothing to say but thank you. Thank you to those beautiful people who sent me their photos. Thank you for always supporting one another. Thank you for helping me to feel deep gratitude for this path that we share. And thank you to Phil Konya for putting the slides together and adding the music.

Now, please watch and be struck by so many beautiful, soulful eyes -- it's the eyes, here, true windows to the soul.

And please share the video, particularly with those who might have just stepped on the path. Let me know if you have any ideas on whom to send it, where to send it, etc.

Thursday, August 30, 2012

I take back my pledge not to donate any money to a political campaign.

Yup. I'm as flip-floppy as Mitt Romney, apparently. After deriding the grotesque amounts of money being swung around this election -- on both sides -- while apparently the country is drowning economically, I listened for one tiny moment to Paul Ryan's speech, noticed how his hairline sort of resembles the evil Coach K's from Duke (maybe not the line but certainly the color, and forgive me, Stephanie, for slamming your beloved alma mater), read that nearly every single news outlet on both sides basically called him a liar and whipped out my beleaguered credit card when invited to do so by the Obama folks. Granted, I only donated $15, which will open up the floodgates of emailed campaign material if not help to tip the election, but I'm officially in. I'm also going to make a giant poster and wave flags next week in Charlotte at the DNC.

Just kidding.

Now, I'm going to take some Vitamin C and feel ever so grateful that I have a sore throat and other indications of a virus, as opposed to what I had imagined earlier in the week when I just didn't feel so good.

Diversion from the Madness

My hair is long enough to wear a ponytail.
Maybe I'll be able to sit on it by the end of the school year.
(Just kidding)

Wednesday, August 29, 2012

I need a title for this post, and make it witty

Don't read any further if you don't want to read about politics.


It's about a million degrees in Los Angeles today, and I've felt kind of queasy for about two weeks for no apparent reason. Evidently there were some more earthquake clusters out in the desert, but I didn't feel anything -- or maybe I did on some deep tissue level. I woke up at three in the morning, worried, for no apparent reason, so I went into the den and found The Husband watching television where he'd been sitting since returning from The Mistress. I chastised him for not taking care of himself and watched him stumble off to Sophie's room, where he lay down beside her and promptly fell asleep. I then went into the kitchen and mopped the floor, ate a Liberte coconut yogurt and climbed back into bed to read a bit of Joanna Brooks' memoir Mormon Girl. I went back to sleep and woke up a couple of hours later to get Sophie ready for school and then drove her to school. I then drove back to my house, did some work for my job at a non-profit, cleaned some more and washed mountains of clothes and then finished another job and took care of my boys and then, and here's the dumb part, wasted entirely too much time in a back and forth conversation on Facebook about Ann and Mitt Romney with a guy I went to high school with and a motley assortment of his friends who I don't know and who don't know me.


Why would I do this other than to satisfy my primitive urge to rant?

I can't tell you, although there's a small part of me that sort of enjoys the back and forth, particularly when it's not personal (my high school friend is always gracious, even if I disagree with everything he says). That part gives me hope.

What irritated the hell out of me, though, were some of the friends' comments which sounded, for the most part, like they were plucked out of the bosom of the Republican birthing machine, maybe even Ann Romney's outstretched arms in her oh-so-red suit (why? why are Republican women always in red?). 

What started the exchange was a fairly innocuous comment by my friend on his FB page about how much he admired Ann Romney for loving America as opposed to hating it like Michelle Obama. I think he might have called her a "class act."

Here was my response:

Ah, yes. Ann Romney: proud working mom who is worth 1/4 of a billion dollars and employs five nannies/maids. Her America is definitely something to be proud of as opposed to the America where my friend Mirtha, a legal citizen, works three jobs to support her family and recently needed my help to file for food stamps and is called lazy by the RNC.

And here was his:

Well that is unfortunate about your friend Elizabeth. Hopefully she can work her way out of her situation. No doubt millions of Americans are hurting. Obviously she has not improved over the last 4 years either. Politics aside, the country has not improved over the past 4 years and we need a dramatic change.

And here is mine:

 it's silly to think that the last four years is why this country is in a recession or that during the last four years we should have somehow snapped our Democratic fingers and fixed all the problems of the world. The Congress has been
 in a deadlock with extreme obstruction for the last four years, with the far right wing of the majority party hell bent on dictating who should marry whom and parsing out the distinctions between rape and forcible rape, while their moderate counterparts flail ineffectually. The Obama administration has disappointed many of us who had hoped for universal healthcare and a serious end to the obscene, lost wars in Iraq and Afghanistan, but it has passed the Affordable Care Act that ensures tens of millions of people and, in my case, guarantees that my daughter can have healthcare despite her pre-existing condition. He also ended state-sanctioned torture, one of the greatest evils ever perpetrated by the United States and something that I am unembarrassed to be ashamed of my country for justifying. When Michelle Obama said that she was ashamed of America, she spoke of its history of slavery and torture and the FACT that nearly a quarter of our children live in poverty. It's disingenuous to smear her as a person who hates America. I know nothing of Ann Romney but have listened to her speak and shrink at her condescension. As for her husband, tell me one thing he says that isn't pat jingoism.
And after that tirade, I'm going back to posting videos of babies.

Which I did. I posted that video of the twin girls dancing while their father played the guitar.

Then I got the notice that a friend of my friend had posted a comment to me:

 The difference in the two parties, is a Republican who starts from nothing makes his way on his own, investing his own time, energy, and money: and a Democrat feels he needs help from a program in order to do the same thing.

I KNOW! I should have let that sad little ball just drop right there. Let those be the last words.

But, no. Think of me, your friend Elizabeth as a sort of fly, lazy in the southern California heat, in the backyard, where the dog has just -- well -- here's what I said:

 Your theory doesn't hold up well given that Romney is decidedly not a self-made man, but Obama most certainly is. Way too simplistic -- 

And then my friend responded, still gracious:

Wait a second Elizabeth... what do you mean Romney's not a self made man?? Its a given he grew up in wealthy household, but have you ever read or heard of the extrordinary success he had at Bain? He started at Bain and Company at age 30, 
later started Bain Capital, then later returned and ran Bain and Company, growing both firms phenomenally. He may have inherited a few million fro papa, but the over $200 million he has is money he made. Yes, he did build it!!
 I don't have this kind of cash just yet, but certainly I'm not bitter that he has it. I congratulate and embrace successful stories like this. This is the kind of mindset we need to grow our ecomony back to prosperity. By doing so, we all, incluidng health insurance for your daughter and job opportunities for your friend, benefit.

And dumb old, fly-like me:

I'd hardly call "inheriting a few million from papa" "starting from nothing." Maybe it is nothing to you, though, and I'd argue that NO ONE makes that much money completely on their own. Read Elizabeth Warren's statements on wealth. Read about the myth of the self-made man.

Are you still with me? Because this is when the attack started by my friend's friend, and not only did it get personal, but it wasn't particularly intelligent.

Obviously, you have never started a small business. I think he started his own successful business before his father died and left him anything. You have a chip on your shoulder about anyone who has been more successful than you. So sorry
 for you. Obama is self made using everyone else's money except his own, hardly self made. That is how he has become president, other people's money, Romney at least has put some of his own money into his campaigns.

Well, bless her heart.

I asked the friend of my friend to not personally attack me when she knew nothing about me. I told her that The Husband and I are actually owners of a small business and that she didn't know what she was talking about when it comes to me. I think I then gave some links to an interesting article I read about the myth of the self-made man and then I stopped. My original friend had some things to say, but I didn't respond and I guess I won't anymore.

Instead, I lay on the bed with Sophie who had just come home from school and I thought about the Alps in Switzerland. I thought about The Husband and me and Sophie and Henry and Oliver with hands entwined and arms outstretched weaving in and out of grass and flowers, the peaks behind us, The Mistress (that business I know nothing about) out of our minds, all of us, weaving in and out and on our way to freedom from flies and bullshit. I know that's just a dream, and I'll be buzzing around again, but doesn't it sound nice?

Now I need a title for this post. I'd love to work the phrase sister wives into it.

Just a hairbeat away,

from breaking mine.

Ya'll Just Entertain Yourselves Here,

instead of arguing over how wonderful that Ann Romney is like I did on Facebook with a high school friend.

Tuesday, August 28, 2012

Tree Pose on a Surfboard

photo: Leroy Grannis via Sixand5

I've written plenty of posts here about my obsession with surfing. No, I have never actually surfed but characteristically, I talk about surfing, my desire to surf and my wish that in my next life I come back as a surfer, a real surfer who does nothing but surf, perhaps earns her living working in a beach shack surf shop and doesn't think too much about anything other than waves and drag (is that a surfing term?), and maybe I'll smoke pot a lot and grow my own, just another plant in my little garden in the front yard of my little house down a side-street, painted pale yellow with a front porch where I'll sit when I'm not surfing and read books but not get carried away with the thinking about books and my friends will visit me and we'll just go surfing together.  I'll meditate, too, right on the beach, blanketed by morning haze and when the haze burns off and the sky blazes through, I'll surf.

Today, I watched this video of the great Jack Kornfield, one of the gurus of mindfulness meditation, and it made me happy so I'll share it with you.

Late August

I have a bit of a hangover this morning from a fancy cocktail and one glass of wine that I drank last night. My stomach is queasy but it could just as well be the tiny earthquakes that have apparently been clustering over the last few days, the rents in the earth altering the air, balance. The sky is a brilliant blue and the bougainvillea is pink. The sycamore leaves are brown and dry, rustling and waiting to drop. The air is hot but the light is turning golden, Los Angeles light in late summer that has no comparison and points to fall, a subtle fall to be sure but it will as soon come as the high heat of September and Santa Ana winds. When I dropped her off at school, I realized that the increase in medicine had not only made Sophie drowsy but lessened her big seizures, and such is the weariness deep inside me that the tears that pricked at my eyes were ones of gratitude for respite and resignation for that dull veil. I will balance these two, the pink and the brown, the heat and the hint of fall, the veil and the relief.

Monday, August 27, 2012

Sunday, August 26, 2012

Loaves and Fishes, Ali Baba's Cave, Barbie and Ken

This is my closet, so small that I call it The Barbie Closet:

Today, on the eve of my 49th birthday and in lieu of doing laundry, I decided to clean it out. Because it only holds as much as Barbie might wear, I do this quite often; in fact, I believe I did a thorough cleaning out just three or four months ago. Astoundingly, I had stacks and stacks of clothing that I haven't worn in years, shoes that were smashed up toward the back, what appeared to be hundreds of wire dry cleaner hangers, crushed up purses and sweater belts rolled into corners. The thought crossed my mind that since it's Sunday, and the eve of my birthday, perhaps the universe was telling me something a la Loaves and Fishes style. Or maybe the Barbie Closet is really Ali Baba's Cave, filled with treasures, so many that a spoiled woman has no idea of the riches inside.

I organized the treasures into bags to be given away, thrown away and worthy of selling. Those worthy of selling will be moved into the back of my car with the other Worthy of Selling items that I culled from the cave three months ago where they will probably travel along with me for another several months.

Whose University of North Carolina letter jacket is this? It's rather small, so I can't imagine it was an old boyfriend's. I believe it belongs to a long ago room-mate who played on the golf team at UNC. I've lost touch with her. Catherine? Are you there? Is this yours?

The hangers are obscuring a pile of clothes that I need to iron. These have been sitting there for almost the entire last half of the summer, another indication that I have too many possessions. The dog is Valentine who is a Standard Poodle and who recently got shaved down because of fleas. God forbid Valentine should stand in an area away from me. Perhaps she's just marveling at the endless amount of fish and loaves that keep coming out of the Barbie closet.

What do you notice in the above photo? Here, I'll zoom in on one side:

To be fair, Ken's closet is located in Henry and Oliver's room, and they are fairly squished together into their own room. But the state of affairs on one side of the room is shameful. I'm not going to tell you who's who and what's what, though, as that would be bad parenting and perhaps suggest that I favor one child over the other. But I'd love it if you guessed.

Sunday Still Life

Tamale Husk on a Corner in Beverly Hills, CA

For your edification, I've arranged a visit to Ms. Moon at The Church of the Batshit Crazy. Please attend.

Saturday, August 25, 2012

56 Million People with Disabilities Live in the United States

Sophie, 2007

I know I read somewhere that this year's election is costing something like 10 gazillion dollars -- all money that goes toward television ads, giant billboards, staffing, plane rides, dinner parties and barbecues and vote-buying, I imagine. Or influence-buying or whatever. And yeah, I know that some of that influence peddling is for causes that I support and believe in. But, whenever I hear the numbers -- from whatever side -- I feel nauseous for obvious reasons that I'm not going to talk about here. When the DNC calls me on the phone, asking for money, I hang up. I have donated absolutely nothing this year to the Obama campaign, NOT because I don't want him to win the election, but rather because I'm making, albeit ineffectually, a tiny little protest about the obscene amounts of money thrown around. I want to be able to say, in my heart, that I haven't contributed to the oligarchy -- at least in any meaningful way.

Allow me to be a bit narrow-minded in this space and pluck one issue out of the ether -- the issue of disability -- and judge the candidates running for President.

Mitt Romney and Paul Ryan's economic and social platforms, particularly Ryan's Medicaid plan, spell disaster for children and adults with disabilities. Nearly every major disability policy expert, as well as non-profit foundation censures the Ryan plan.  I don't pretend to understand the complexities, although when I hear the word "voucher," I imagine myself shopping for healthcare for Sophie in the "free market" which makes me think about poking my eyeballs out with ice-picks. You can read about them (not my eyeballs -- the Ryan Plan and what it means for the disabled) HERE  and HERE.

“For each of the two years that Paul Ryan has been chair of the House budget committee, he’s produced budgets that we’ve opposed,” said Katy Neas, senior vice president for government relations at Easter Seals. “The pick of Paul Ryan gives people another opportunity to look at the policies that he and the other candidates have proposed.”
The website  has good discussions about disability and politics, if you want to explore the issue further.

President Obama recently met with a group of youth with disabilities to discuss the needs of the community. While there was no one there with a severe disability, like Sophie, the issues addressed -- unemployment, inequality, access, inclusion, healthcare and medication -- were met by the President with seeming sincerity and seriousness. Aside from the Affordable Care Act, which is far from ideal but makes inroads for those with disabilities, it remains to be seen what progress will be made. Something tells me that true awareness and empathy for the most vulnerable in our country is a great step forward.

I'm waiting anxiously as are 56 million others in this great country.

Saturday Southern Comfort Awesome

Who wants to hear about Romney, Ryan, rape and Rand?

Who wants to listen to Odetta sing Hit or Miss?

You just know it's only going to get crazier until November, and we're all going to have to bear it. You know I'm going to be posting some political stuff, here and there -- particularly when it crosses the path of disability -- but right now, I'm going to post this video that my brother-in-law sent me last night.

I just gotta be me.

Friday, August 24, 2012

Crazy Old Lady in the Dylan's Candy Bar

Our local outdoor shopping mall just opened a Dylan's Candy Bar. I was suckered into going by my sons, the resident Candy Hounds.

It was a nightmare of epic proportions for a person like me.

Extremely loud show tunes were playing -- Julie Andrews singing Mary Poppins stuff; Shirley Temple singing On the Good Ship Lollipop. It was so outrageously loud and frenetic that I I froze in place, right by a giant display of Dots. I began to weep.

Just kidding. I felt like weeping, though, and instead morphed into a crazy old lady. I stood at the register with my sons, ringing up their bags of candy and could hardly hear the cashier over the cacophony. I told her, in a loud voice, that they should turn the music down!, that it was making me crazy! She looked at me and nodded. I might have said I can't imagine working in a place like this!

I've got to get out of here, I muttered and didn't notice how the boys were inching away from me.

When we walked outside into the blessed, relative silence, I felt such relief that I wept profusely again.

Just kidding.

Mom! You were so rude! Oliver said.

Yeah, you were just embarrassing, Henry added.

I acted surprised -- and not a little hurt -- and then I realized and acknowledged that I actually was -- rude and embarrassing. I realized, too, that I'm not too far away from being one of those old ladies at Fairway in New York City who tell people jesus christ! hurry up and then bash them with their shopping carts.

Next Blog, Planting Rue and Thomas Hardy

Common rue

Do ya'll ever click on the Next Blog tab at the top of your page on Blogger? I just started doing it, and you know what? Every single time I do, the "next blog" is a hard-core Catholic one or evangelical Christian one. Names like Jesus Fever, Got Bible?, Stampin Sisters in Christ, Christian Apparel -- I'm not talking run of the mill fervor, either, but some scary stuff. Guns and God. Is it retribution? Is it a message for me? Is it a warning?

Am I digging my grave?

 Am I planting rue?

Will I rue?

Answer me, Sue.

"Ah, are you digging on my grave,
            My loved one? — planting rue?"
— "No: yesterday he went to wed
One of the brightest wealth has bred.
'It cannot hurt her now,' he said,
            'That I should not be true.'" 

"Then who is digging on my grave,
            My nearest dearest kin?"
— "Ah, no: they sit and think, 'What use!
What good will planting flowers produce?
No tendance of her mound can loose
            Her spirit from Death's gin.'" 

"But someone digs upon my grave?
            My enemy? — prodding sly?"
— "Nay: when she heard you had passed the Gate
That shuts on all flesh soon or late,
She thought you no more worth her hate,
            And cares not where you lie. 

"Then, who is digging on my grave?
            Say — since I have not guessed!"
— "O it is I, my mistress dear,
Your little dog , who still lives near,
And much I hope my movements here
            Have not disturbed your rest?" 

"Ah yes! You dig upon my grave…
            Why flashed it not to me
That one true heart was left behind!
What feeling do we ever find
To equal among human kind
            A dog's fidelity!" 

"Mistress, I dug upon your grave
            To bury a bone, in case
I should be hungry near this spot
When passing on my daily trot.
I am sorry, but I quite forgot
            It was your resting place."

Thomas Hardy (1840-1928)

If you're on Blogger, tell me what happens when you click "Next Blog."

Thursday, August 23, 2012

Guerrilla Pothole Gardener

Doesn't this brighten your day?

Boys, Girls, The Military, Illusions and a Must-Read by Chris Hedges

Trench warfare, World War I

The disillusionment comes swiftly. It is not the war of the movies. It is not the glory promised by the recruiters. The mythology fed to you by the church, the press, the school, the state, and the entertainment industry is exposed as a lie. We are not a virtuous nation. God has not blessed America. Victory is not assured. And we can be as evil, even more evil, than those we oppose. War is venal, noisy, frightening, and dirty. The military is a vast bureaucratic machine fueled by hyper-masculine fantasies and arcane and mind-numbing rules. War is always about betrayal—betrayal of the young by the old, of idealists by cynics, and of soldiers and Marines by politicians.
                                             -- Chris Hedges 

You know when the big war holidays come around -- Memorial Day, Veterans' Day, etc. etc.? Those of us who oppose war and shrink from glorifying it in any way, also shrink from expressing our true opinions of it -- how difficult it is to "honor soldiers," pay respect to those who have given us "the ultimate sacrifice" -- because we will (and often are) called unpatriotic, miserable, and ungrateful. I have been called all of these, even by members of my own family, so I generally post a poem or two written by Wilfred Owen, one of the young artists of World War I who not only spoke eloquently of the war he experienced but actually died in the trenches fighting. I've gotten into "trouble" on this blog expressing my opinion of war, my reluctance to pay homage to those who fight it, my struggles and conflicts regarding young men and women who offer themselves up to either kill or be killed and sometimes both. I have a long list of comments, all from Anonymous, who denounce my pacifist leanings, and some have said terrible things about my Swiss husband and even our children. I have a relative who works in a branch of the services who told me recently, quite sarcastically and casually, that he would continue to "be on the watch," guarding me as I ungratefully lived my otherwise carefree life, taking advantage of those, like himself, living a higher purpose. And while I might roll my eyes at the censure (who in the hell does he think is paying his salary?), I balk at the vast distance between those like me and those like him. I wish it weren't so.

War comes wrapped in patriotic slogans; calls for sacrifice, honor, and heroism; and promises of glory. It comes wrapped in the claims of divine providence. It is what a grateful nation asks of its children. It is what is right and just. It is waged to make the nation and the world a better place, to cleanse evil. War is touted as the ultimate test of manhood, where the young can find out what they are made of. From a distance it seems noble. It gives us comrades and power and a chance to play a bit part in the great drama of history. It promises to give us identities as warriors, patriots, as long as we go along with the myth, the one the war-makers need to wage wars and the defense contractors need to increase their profits.

But up close war is a soulless void. War is about barbarity, perversion, and pain. Human decency and tenderness are crushed, and people become objects to use or kill. The noise, the stench, the fear, the scenes of eviscerated bodies and bloated corpses, the cries of the wounded all combine to spin those in combat into another universe. In this moral void, naïvely blessed by secular and religious institutions at home, the hypocrisy of our social conventions, our strict adherence to moral precepts, becomes stark. War, for all its horror, has the power to strip away the trivial and the banal, the empty chatter and foolish obsessions that fill our days. It might let us see, although the cost is tremendous.

When I went to Washington, D.C. last spring with my two sons, I realized that much of the city is built around memorials to war, to violence, to honoring those who have either killed in defense or perished for freedom or been burned or tortured or otherwise obliterated for ideals. I know, such is life, and I'm not going to pretend that I have any answers. I tromped around and exclaimed at the beauty of the monuments, the history of the brave and the great sentiments, even as I shrank at the horror of it all.  My son Oliver, now eleven, has always been a bit star-struck by soldiering, and given his lack of enthusiasm for school, I get nervous, every now and then, that one day he might want to join the military. Last spring, when the Armed Forces took over a section of the parking lot of Sophie's large, public high school, populated primarily by the disadvantaged and minorities, with their trailers and tents and cheerful pamphlets, I felt nauseous. Cool! Oliver said, when he saw the recruiters, spanky shiny in their stiff uniforms. Awesome! It helps that The Husband is utterly and completely anti-war and also has a cool disdain for American jingoism, but every parent knows that our influence on our children is haphazard at best. For all I know, Oliver (much like his mother -- ahem --) might completely buck our system, vote conservative and become a general.

The Husband, disturbed by what he sees in our sons' starry-eyed view of soldiers, guns and blow-em-up escapades,  brought home a recent article in Boston Review written by the Pulitzer prize-winning correspondent Chris Hedges. It's called War is Betrayal: Persistent Myths of Combat. Hedges writes in simple, powerful language that from as far back as The Iliad, the allure of combat is a trap, a ploy, an old, dirty game of deception in which the powerful, who do not go to war, promise a mirage to those who do.

The Husband is going to have Henry, my older son, read it, and then discuss it with Oliver, too. I figure that, at best, it'll begin to help balance out the bullshit that they've already been exposed to, and we'll hopefully steer them toward a different sort of service in the world, recognizing that yes, this is part of life, but we won't kill to make it better.

Read the whole article here.

Happy Birthday, Sistah!

Me, Our Mother, My Little Sister, Melissa

Wednesday, August 22, 2012

Team Sophie the Mermaid and the Epilepsy Run/Walk

After a year-long sabbatical where I wanted nothing to do with epilepsy and raising money to end epilepsy, I pulled myself up by my bootstraps (Republicans, love me!) and signed up to be Team Captain for this year's End Epilepsy Walk/Run. I'm forming my team now -- and some of you have already gotten notified and have generously donated -- but I'll provide links to it at a later date.

Today, I want to highlight one of my dearest blogger friends, artist Kim from Art in Red Wagons and Words On Paper Scraps. Kim has graciously created a special section in her etsy shop called Team Sophie and is donating a portion of her proceeds to our cause!

If you haven't visited Kim before and want to see some extraordinary drawing, painting and crafting, as well as beautiful writing and over-the-top gorgeous photography of the Pacific Northwest, you need to hop on over there. If you're so inclined, purchase one of those darling shells with the mermaids, keep it in your purse or pocket and help Sophie and all those like her.

Here's the link to the shop:  Etsy Team Sophie
Here's the link to join our team and/or make a donation:

Summer Reading

When you hate to read, dress like a sumo wrestler.

Tuesday, August 21, 2012

Two Things, Pathologizing and Mythologizing

Starry Night by Vincent Van Gogh

This morning as I got Sophie ready for school, and the usual happened, I thought that I cannot write about any of this -- again. I thought that I am beginning to sound like the broken record that plays a seizure soundtrack. I thought that even my post about my newest health insurance and anti-epileptic medication woes is repetitive, incredibly repetitive except for the number of photos that depict me as tired, so tired, with seemingly fat fingers. I haven't included many photos of myself in posts, and when I look at these I see the toll, the toll. 

I thought that you could probably troll through the more than two thousand posts that I've written over the past four years and find only three or so topics that I've written about, maybe even two. As I pulled away from Sophie's school, I watched as one of the aides, a wonderful man in a straw hat, bent over Sophie and gently spoke with her and I felt overcome. Tears pricked my eyes and they were not just from the seemingly endless depths of sadness but also ones of gratitude, that people like this exist, that they help to make my daughter's life a good one. I wasn't going to write about this, though, another track on the endless loop.

 But then I got home and read Lisa's comment about the significance of the red dragon in Taoist philosophy. Here it is on my recent Dragon Mom post:

At the risk of sounding like a complete wacko, just wanted to share some of my latest discoveries with you since they seem to have an interesting relevence to your experience. 
The Tao is a Chinese philosophy (not the religion) that discusses the principles of yin and yang energy. These are opposing life energies that rely on one another to define themselves. 
The Yin is sometimes represented as a green dragon, it is the inactive, intuitive, female energy (or perhaps mermaid-like?) The Yang energy is sometimes represented by a red dragon. It is the active, action-based, masculine energy that is necessary to balance the Yin.
A dragon swallowing its tale is an image used to represent the Yin Yang philosophy of the continuous cycles of life. 
The red dragon is also used sometimes to represent Sheng Qi a type of inner energy that Taoists use to fight disease and promote long life. Just thought this reading and symbolism had an interesting connection to your dragon vision..for whatever it is worth...wishing you and Sophie much peace always.

I am very familiar with Taoist principles and philosophy having studied it quite a bit in my college years, but I had never heard about the significance of the red dragon. When I had that vision of myself as a fuming dragon, sitting on the side of Sophie's bed as she seized and began to write about it, I thought, too, of the inimitable art of William Blake, the great nineteenth century poet, and I remembered that somewhere in his vast archive there was a painting of a woman and a dragon, and sure enough there it was: The Great Red Dragon and Woman Clothed by the Sun. Lisa's comment, read at just the right moment, reminded me again of the great power of synchronicity, that, perhaps, there are no coincidences. I am just swallowing my tail, at times, living over and over my life, but I am also red with fire, fighting this godawful disease and helping Sophie to live a better, longer life.

After reading Lisa's comment, I read Verna Wilder's:

I am always so moved by your posts, and when you use Blake's images, I know I'm in for a powerful experience. I love what Lisa shared about the Tao and dragon energy. I heard Jean Houston speak once about mythologizing our lives instead of pathologizing our lives. You mythologize, you and your mermaid daughter and the deep poetry in your heart, your dear dragon heart. You show us how it's done, and your words tear me apart and put me back together again. I appreciate you more than I can say.

Mythologizing is nearly effortless for me, and I had always thought it made me more wack-a-doodle than healthy. I'm going to think otherwise, now, even on this day of seizures and tears and gentle, bent-over heads and whispering, kind words.

I don't have more to say but would, rather, put my hands together in a prayer-like pose and bow my head to you, Lisa, and to you, Verna and to all of you.

To you.

A Read-Along Picture Book with Drugs

Today, I went to Rite-Aid to pick up Sophie's prescription for Onfi, also known as Clobazam. I used to get the drug from a pharmacy in New York City that got it from Canada or Germany. I used to pay $150 or so for a six week supply. I paid in cash because Onfi, or Frisium, as it used to be called, was NOT covered by the United States Federal Drug Administration. Sophie's neurologist faxed a prescription for the drug to a pharmacy in New York City that waved some sort of magic wand and flew me the drug after I'd charged it. It was all legal.

Clobazam or Frisium, the way it used to be packaged

Clobazam or Onfi, the way it's now packaged

In January of 2012, the FDA approved the use of Clobazam. Manufactured by Hoechst, the drug Frisium is manufactured now by Lundbeck and was renamed Onfi. It was immediately available at my local Rite-Aid.

Great! I thought. Now Sophie's private insurance plan will cover it.

Sort of:

Sophie has her own medical insurance, administered by Anthem Blue Cross. It's an individual policy, and she has Medi-Cal as a secondary policy. Her premiums have increased over 75% in the four years she's been on this policy. The drug deductible is $250 and co-pays for most medications run about $30.

Onfi is not on Anthem's formulary and therefore is reimbursed at a lower rate than Vimpat -- let's say -- which costs $30 per month as a co-payment. It appears that Onfi costs $990.99 for a one month supply, approximately $890.99 more than it did in 2011 when I bought it from another country. Anthem Blue Cross is picking up $600.75 of that cost. Medi-Cal will not cover any of it. I have a coupon from Lundbeck that gives me $50.00 off for 12 months, leaving me a balance of $340.24. 

Here's the picture, again:

 Do you follow me?

This is actually not me but Ellen Burstyn in the frightening movie about drug addiction Requiem for a Dream.

Good. Let's move on.

Last time this happened to us was with the drug Vimpat, an anti-epileptic that was also recently added to the arsenal of drugs used by those with epilepsy. It took me approximately two months to file a grievance, call the Epilepsy Foundation of Greater Los Angeles (thank you, EFGLA!), wrangle a letter from my swamped neurologist attesting to the medical necessity of the drug, in case we were just fucking around with new drugs and Sophie and then finally my assemblyman who had some sort of pull with the insurance commissioner who then must have made a call to Anthem, because one day when I went in to pick up Sophie's Vimpat, the pharmacist told me that the cost was $30, not $425 like I had been paying up until that moment.

I honestly don't have fat fingers, although they look very fat here.

This is the sort of thing I think about when I hear the other side claim that they don't want the government coming between me and my doctor. 

Let's move on.

 I've been paying/charging $340.24 for the Onfi since January because I made an initial attempt to persuade Anthem to add it to the formulary, was promptly stonewalled and then I just -- well -- gave up. 

Even Dragon Mothers can't do it all, all the time.

Sometimes, it's all too much.

Today, after paying for the Onfi at the Rite-Aid, I felt the old surge of righteousness, and when I drove home, I got on the phone and called Anthem to inquire whether they suggest I go through the whole process again. I was put on hold, listening to Journey for approximately seventeen minutes.

The clerk who finally answered the phone tapped away on his computer for many minutes and confirmed that, no, the drug Onfi is not on the formulary and won't be until Lundbeck the manufacturer lets their patent expire.

My similarities to Ellen's character's look abound.

I thought, why would the drug manufacturer charge me $150 in cash when the drug came from Canada or Europe but now charge $990.99 in the United States, have Anthem eat $600 of that and charge me the rest and then give out $50 coupons to be used for only one year?

I said, Oh.

I do believe this is another time for my favorite vintage photo of all time:

The efficient clerk from Anthem told me to file a grievance, the form for which he would send me via email.

Is there anything else I can do for you today? he said.

Uh, no thank you, I said.

to be continued at some later date

Monday, August 20, 2012

Who loves ya?

So what I think these comments do underscore is why we shouldn't have a bunch of politicians, a majority of whom are men, making health care decisions on behalf of women.
-- President Barack Obama, on recent comments by Republican Representative Todd Akin about rape 

Yeah, yeah, I know Obama making this statement so publicly is about politics, but when Truth is stated, it bears repeating. Over and over and over and over. In this case, I'm grateful for the extrapolation from the POTUS.

Although these particular comments have led Governor Romney and other Republicans to distance themselves, I think the underlying notion that we should be making decisions on behalf of women for their health care decisions, or qualifying forcible rape versus non-forcible rape, I think those are broader issues,

Now, I'm going to mull, again, over those who would support Akin's candidacy at this point. And then, I'm going to venture toward wondering why any woman would vote for a Romney/Ryan ticket. Looking on the bright side, I imagine my brain will get a good enough work-out to ward off dementia.

Akin was Paul Ryan’s co-sponsor on a House bill just last year banning the use of federal funds for abortion except in cases of “forcible rape.” This term seemed laughably redundant since all rape, by definition, is forced. But this redefinition of rape was deceptively sinister. Statutory rapists often use coercion but not physical force. If the measure had passed, a 13-year-old emotionally manipulated into having sex with an older friend or relative would no longer be able to use Medicaid to terminate a resulting pregnancy. Nor would her parents be able to use their tax-exempt health savings fund.
from The Danger of Laughing at Todd Akin by Ilyse Hogue in The Nation 

Dragon Mother

detail from William Blake's The Great Red Dragon and Woman Clothed by the Sun

It's still summer in Los Angeles even though Sophie has gone back to school. It's hot here, like it always is in August and September, and when I got up with Sophie and started feeding her breakfast, she had one of those big seizures at the table, and while I tried to stop it, it didn't stop so I picked her up, angrily, and first sat on the stool but felt squeezed there and couldn't protect her jerking arms and legs so I lifted her up and me up and rushed down the hallway to her room feeling like one of those mothers you read about who lift up cars off their dying children. That is exactly what I felt like but I wasn't fueled by love but by anger and it rose up so strong in me that when I put Sophie on her bed and rolled her to the side I felt steam coming out of my ears so I plopped down beside her, my back to her and breathed in and out like a dragon. A dragon mother with a scaly interfering tail and breath like fire, late summer fire in Los Angeles, ignited by the tiniest of embers that burns slow until it catches just right and the whole place is up in flames.

Sunday, August 19, 2012


Questions about too many birds -- Random Poetry Sunday with Music

Listen to this while reading the following poem:

A Question about Birds

I am going to sit on a rock near some water
or on a slope of grass
under a high ceiling of white clouds,

and I am going to stop talking
so I can wander around in that spot
the way John James Audubon might have wandered

through a forest of speckled sunlight,
stopping now and then to lean
against an elm, mop his brow,

and listen to the songs of birds.
Did he wonder, as I often do,
how they regard the songs of other species?

Would it be like listening to the Chinese
merchants at an outdoor market?
Or do all the birds perfectly understand one another?

Or is that nervous chittering
I often hear from the upper branches
the sound of some tireless little translator?

Billy Collins, from his collection horoscopes from the dead

Saturday, August 18, 2012

The Nineteenth Amendment

Alice Paul and National Women's Party - August 18, 1920

We can put aside acrimony today toward those who might relegate women's role to the backseat of history and even desire to keep them there (ahem -- Ann Romney**) and just revel in the extraordinary achievement of those women who protested, fought, starved themselves and ultimately won the right to vote. On August 18th, 1920, Congress ratified the 19th Amendment. Thank you, ladies.

The right of citizens of the United States to vote shall not be denied or abridged by the United States or by any State on account of sex. Congress shall have power to enforce this article by appropriate legislation.

**The article referenced was satire. I'm taking the liberty, though, of imagining that Ann would have had utter disdain for anyone as radical as a suffragette.

Who knew Italy was in my back yard?

Last night, my dear friend D showed me the canals of Venice. Despite having visited them a thousand years ago in Italy, I had not done so for the fourteen years I've lived in Los Angeles. It was quiet and pretty, a tad shabby but utterly charming -- not unlike Venice in some ways and profoundly unlike Venice in most -- but I declared that if I couldn't ever live there, I would have to visit a lover there before I died, and hopefully he'd take me out in the yellow gondola.


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