Fired Up

I'm fired up tonight, in more ways than one. Living in Los Angeles during the great fires of late summer and early fall is just so weird I'm not sure how to describe it. You drive around this city right now, doing all your regular errands, listening to the radio and talking to your friends, all under the most amazing cloud you've ever seen hanging over the mountains to the east, north and west of the city. It's truly incredible -- the juxtaposition of going outside to pick up your slightly damp from the sprinklers morning newspaper while sniffing the air and smelling the acrid carbon, looking to see the horizon and wondering whether any progress has been made over there and then running your finger, lightly, over the plant by the door and wiping up ash, tiny flecks of grey and white, like dandruff on the tip of your finger. When I tell you that the sky looks apocalyptic, I'm not exaggerating. I can't see flames from where I live but I can see the giant mushroom cloud, gray at the bottom like a blanket and then some beige and then the cap of white, fluffy and absolutely still.

So there's that, and the heat. The heat. The dryness of the air and the scratchy throat and lank hair, the persistence of it.

And then I got fired up by one of those chain emails from a friend. This one was about some amendment proposed by Senator Coburn of Oklahoma, the same Senator who held a recent town hall meeting and answered a sobbing caregiver's question with the most inane, out of touch answer one could imagine. The same Senator Coburn who declared a few years ago that "the gays" were the biggest problem facing this country. Oy vey! Not sure why this certain friend would send this thing to me, crazy, liberal, socialist me who believes our country should have universal health coverage, but she did. And I got the email and fired off a reply, sort of regretted it and then said to myself NO! I know what I'm talking about, and it needs to be said.

And now I want you to read my friend and blogger's brilliant piece about said Senator Coburn. I sent the link to the people who were listed on the email, and I hope they read it. I really do. Please, please read it and pass it on. It's most important and it fires me up. Click HERE.

I'll tell you a funny thing that happened today, though, which will calm us all down and make me laugh, again. I was out, walking with Sophie down the street. I was wearing a white linen dress and Birkenstocks. A couple of elderly ladies stopped to talk to me, one of whom is a neighbor that I don't know too well. The other lady wondered who I was. I'm her mother, I said with a laugh. She then said that she thought I was a lovely nurse, taking my charge for a walk. She was struck by how nicely I was talking to the young girl. I don't know why I thought that was funny, being mistaken for a nurse. Despite the fact that I was wearing a white dress, I so do not feel like a nice nurse. I'm a tired mama, wishing I had a nice nurse to help me out.

Sunday Skies

Under smoky skies and the most godawful-looking mushroom cloud that is perched over the mountains to the north and east of my neighborhood, my dearest friends took me to a birthday brunch at Jar. We sat at a wonderful table in a dimly lit room that was blessedly cool. We ordered pink wine and I had a bloody Mary. Some ordered salads and some ordered omelets. I had two pieces of crusty bread spread with pesto and piled with prosciutto and arugula, topped with two fried eggs and shaved Parmesan. Someone ordered a bowl of French fries that were liberally spiked with garlic and salt and came with a tiny dish of homemade ketchup.

I looked around the table at the array of beauty that is my friends. I am filled with gratitude for the lines on their faces because they mark much laughter and many tears. We have sixteen children between us. One lost her mother at a too-early age and suffers from an often debilitating auto-immune disorder, yet wraps me in her arms for the most enveloping hugs one could imagine. One has recovered from breast cancer with an astonishing resilience yet always has time to dazzle with her formidable intellect and uncanny ability to understand. One has a laugh and a heart as big as Texas and another has known me for over thirty years, each of which has been blessed by her intelligence and warmth and support. Another makes me laugh because of her honesty and brutal sense of humor and another is goodness embodied. Real, true beauty, both inside and out.

And, most importantly, everyone loves to eat good food. We ordered butterscotch pudding, chocolate pudding, peach crisp, chocolate cake and banana cream pie for dessert and ate every single bit. And no one talked about their weight (o.k., maybe I did) or that they "shouldn't" or even "couldn't."

I love my friends. Thank you, ladies.

Not So Silent Saturday

On August 29th, 1966, the Beatles performed their last concert in America at Candlestick Park in San Francisco.

There are a gazillion clips of this concert on Youtube, but I liked this one.

Silent Saturday

Not Swans

I drive toward distant clouds and my mother's dying.

The quickened sky is mercury, it slithers
across the horizon. Against that liquid silence,
a V of birds crosses-sudden and silver.

They tilt, becoming white light as they turn, glitter
like shooting stars arcing slow motion out of the abyss,
not falling.
Now they look like chips of flint,
the arrow broken.
I think, This isn't myth-

they are not signs, not souls.
Reaching blue
again, they're ordinary ducks or maybe
Canada geese. Veering away they shoot
into the west, too far for my eyes, aching

as they do.

Never mind what I said
before. Those birds took my breath. I knew what it meant.

"Not Swans" by Susan Ludvigson, from Sweet Confluence: New and Selected Poems. © Louisiana State University Press, 2000.

Gallows Humor

I was trying to clean up my computer archives and found this email that I had sent to a friend over ten years ago and that he had saved and then sent back to me.

Dear David:

> >

> > I have been getting your various messages--telephone and email, etc.

> > Forgive me my delinquency in returning them. Things have been a bit

> > hectic here--even more hectic than usual. About a month ago, Michael

> > was hit by a truck while riding his bicycle to work. He was dragged

> > a little but escaped with a pretty messed up left arm. Eighty

> > stitches but no broken bones or head injuries.

> > About two weeks after it happened, the wound got infected so he was

> > hospitalized and had surgery--a skin graft, etc. He is fine now and

> > back at work, just not cooking until the thing heals. In any case,

> > he was lucky. So, on the day he was hospitalized for infection, I

> > set off for the hospital for a visit with Henry and Sophie. As we

> > were leaving the house, Sophie had one of her famous drop seizures

> > and cracked her head open on the floor. We landed up going to the

> > hospital in an ambulance and SHE got ten stitches in her forehead.

> > Needless to say, I've been a basket case.

> > Henry is fine.

> >

> > How has your life been of late? You know, everyone always says to

> > me, "It could've been worse." My silent reply is, "It could've been

> > a whole lot fucking better."

> >

> > Love,

> > Elizabeth

Vintage

It's my birthday today, and I'm forty-six years old. I'm not one of those people who hates birthdays and fears getting old. I actually am unashamedly really into my birthday, and I'm really into celebrating birthdays, my kids' birthdays, my friends' birthdays -- I just love them. I love presents, both giving AND receiving, and I love birthday cake even more. I love getting the attention, actually, and I love giving it. I really do.

So, last night two dear friends took me out to dinner. I got to the restaurant first, as always, because I'm always, always on time (I'm a Virgo), and was led to my seat by the host, a young, pretty woman dressed in a navy blue and white polka dot dress. It stopped about three inches above her long, smooth legs, buttoned up to her chin and looked amazing and sexy.

I said, I like your dress a lot.

She answered, Thank you! I like your tunic. (And as an aside, I cringe at the word "tunic" -- it just conjures up "matron" or maybe even Maud from "and then there's Maud")

I said, When I was first married many years ago (and blog readers, if you don't know, I have a PAST that included another marriage but that's a whole other story) I had a "going away" dress that looked so much like yours. It was navy and white polka-dot, too.

Looking down at her dress, she answered, Yeah, I love this dress. It's vintage. When I saw it, even though it had a huge stain on the front, I had to have it.

VINTAGE!!!! How perfect is that on the eve of my forty-sixth birthday?

I'm vintage. When my friends came in, we laughed in the way that good, close friends laugh.

And then I ordered a Pim's Cup with ginger beer, cucumber juice and something deliciously limey. I had a salad with baby lettuces and tiny slivers of vegetables and a bowl of homemade papardelle with bolognese. I opened my presents, a tiny book of Emily Dickinson's poetry and a beautiful Indian scarf. We talked and talked for hours, until the waiters began to blow out the candles and move around the chairs and then we walked out into the cool Los Angeles night, warm and full of good food and conversation.

I love birthdays and I might even love being vintage because there's nothing better than "old" friends.

Thank you Emily and Sylvia!

Sadness

Last night, before I went to bed I looked for one last time at my computer (a compulsion) and saw the tiny headline at the top that Ted Kennedy had died. Not sure why, but I started to cry, quietly, at my computer. I'm not the sort of person who cries like this but today, as I flipped through the paper and read his obituary I felt the tears prickling at my eyes, again. There's something about his florid face, his last in the family status, that whole convoluted, tragic history that gets to me. There's the fact of his brain cancer and the terrible seizures that he suffered that I can, of course, relate to. I also feel, in a depressing way, that his death is somehow symbolic of the healthcare reform issue in general. Maybe this is just the goofy way my brain works -- I'm looking for ways to defend myself, to ward off disappointment, to project my own despair over personal financial distress and what I think is right on this huge government undertaking. Or maybe it's because it's sad that someone so huge and so human, who spent his entire life working on issues that are important to little old me, has died. That's it, really.

***Robert Rummel-Hudson has a wonderful tribute to Ted Kennedy and a rebuke to all those who might slam him for his frailties, including a list of the many, many acts and bills that he championed over the forty-plus years of service to our country. Go read it HERE.

Quote and Food

Any concern too small to be turned into a prayer is too small to be made into a burden.

- author unknown

Running errands yesterday, I saw that one of my favorite restaurants, Buddha's Belly, was promoting a Happy Hour from 4:00-7:00 for $4.00. Since The Boys and The Husband were off at a special event, and Sophie was happy at home with a caregiver, I was able to sneak away at 6:00 with my friend D for Happy Hour, probably the first time I've gone to a Happy Hour in oh, twenty-five years or more? I had a mint-mashed mojito, made with some kind of Asian liquor and the smallest bit of sugar. Sipping the drink, we nibbled on a few small plates of food, a strange combination but each was perfect. Sweet potato fries were crisp and red, sprinkled with coarse salt and dipped into a mild ketchup and wasabi-spiked thousand-islandish sauce. We had cold spring rolls, rice paper-wrapped chicken and slivers of vegetables that we dipped into soy and chili sauce. We finished a plate of chicken potstickers that were crisp and floppy all at once, delicious dipped into an acidic soy sauce. I ran my finger around the inside of my glass when I finished the drink, scooping up the crushed mint leaves and licking them off my fingers.

Update

Some of you have expressed concerns about the Book Meme that I posted below. I had nothing to do with this list -- it was sent to me ages ago by I don't remember who. I just thought it would be fun to post it and see how many of these books I'd read. I agree that there's no rhyme or reason to this particular list -- Dan Brown and Jane Austen?

And as for my lack of Harry Potter reading, I can't explain. I've read the first volume and thoroughly enjoyed it, but both boys have no interest in the series. Weird, but true.

Bookworm

Instead of moping around about the stymied healthcare reform and the decimating of a public option and a growing disgust with American politics and well, let's just face it, the country itself, I'm retreating into books. I was tagged with this a while back and send it out to you. And instead of tagging more people, why don't you comment if you feel like it, and let us know how many of these you've read? I'm highlighting the ones I've read in orange. The selection of books is a bizarre mixture of "great" literature and abysmal bestsellerdom --but I guess that's all a matter of opinion, as well. Anyway, if you like lists and you like books, have fun!

Book Meme

Yet another book meme.The BBC believes most people will have read only 6 of the 100 books here. How do your reading habits stack up?

1 Pride and Prejudice - Jane Austen
2 The Lord of the Rings - JRR Tolkien
3 Jane Eyre - Charlotte Bronte
4 Harry Potter series - JK Rowling
5 To Kill a Mockingbird - Harper Lee
6 The Bible
7 Wuthering Heights - Emily Bronte
8 1984 - George Orwell -
9 His Dark Materials - Philip Pullman -
10 Great Expectations - Charles Dickens -
11 Little Women - Louisa M Alcott -
12 Tess of the D’Urbervilles - Thomas Hardy -
13 Catch 22 - Joseph Heller -
14 Complete Works of Shakespeare - (most of them)
15 Rebecca - Daphne Du Maurier -
16 The Hobbit - JRR Tolkien -
17 Birdsong - Sebastian Faulks -
18 Catcher in the Rye - JD Salinger -
19 The Time Traveler’s Wife - Audrey Niffenegger
20 Middlemarch - George Eliot -
21 Gone With The Wind - Margaret Mitchell -
22 The Great Gatsby - F Scott Fitzgerald -
23 Bleak House - Charles Dickens
24 War and Peace - Leo Tolstoy
25 The Hitch Hiker’s Guide to the Galaxy - Douglas Adams -
26 Crime and Punishment - Fyodor Dostoyevsky -
27 Grapes of Wrath - John Steinbeck -
28 Alice in Wonderland - Lewis Carroll -
29 The Wind in the Willows - Kenneth Grahame -
30 Anna Karenina - Leo Tolstoy -
31David Copperfield - Charles Dickens -
32Chronicles of Narnia - CS Lewis -
33Emma-Jane Austen -
34 Persuasion - Jane Austen -
35The Lion, The Witch and The Wardrobe - CS Lewis -
36The Kite Runner - Khaled Hosseini -
37Captain Corelli’s Mandolin - Louis De Bernieres -
38Memoirs of a Geisha - Arthur Golden -
39Winnie the Pooh - AA Milne-
40Animal Farm - George Orwell -
41The Da Vinci Code - Dan Brown -
42One Hundred Years of Solitude - Gabriel Garcia Marquez -
43A Prayer for Owen Meany - John Irving -
44The Woman in White - Wilkie Collins -
45Anne of Green Gables - LM Montgomery -
46Far From The Madding Crowd - Thomas Hardy -
47The Handmaid’s Tale - Margaret Atwood -
48Lord of the Flies - William Golding -
49 Atonement -Ian McEwan -
50Life of Pi - Yann Martel -
51Dune - Frank Herbert -
52Cold Comfort Farm - Stella Gibbons -
53Sense and Sensibility - Jane Austen -
54A Suitable Boy - Vikram Seth
55The Shadow of the Wind - Carlos Ruiz Zafon -
56A Tale Of Two Cities - Charles Dickens -
57Brave New World - Aldous Huxley -
58The Curious Incident of the Dog in the Night - Mark Haddon -
59 Love in the Time of Cholera - Gabriel Garcia Marquez -
60Of Mice and Men - John Steinbeck -
61Lolita - Vladimir Nabokov -
62The Secret History - Donna Tartt -
63The Lovely Bones - Alice Sebold -
64Count of Monte Cristo - Alexandre Dumas -
65On The Road - Jack Kerouac -
66Jude the Obscure - Thomas Hardy -
67Bridget Jones’s Diary - Helen Fielding -
68Midnight’s Children - Salman Rushdie -
69 Moby Dick - Herman Melville -
70Oliver Twist - Charles Dickens -
71Dracula - Bram Stoker -
72The Secret Garden - Frances Hodgson Burnett -
73Notes From A Small Island - Bill Bryson -
74Ulysses - James Joyce
75The Inferno – Dante -
76Swallows and Amazons - Arthur Ransome -
77Germinal - Emile Zola
78Vanity Fair - William Makepeace Thackeray -
79 Posession - AS Byatt -
80A Christmas Carol - Charles Dickens -
81Cloud Atlas - David Mitchell
82The Color Purple - Alice Walker -
83The Remains of the Day - Kazuo Ishiguro -
84Madame Bovary - Gustave Flaubert -
85A Fine Balance - Rohinton Mistry -
86Charlotte’s Web - EB White -
87The Five People You Meet In Heaven - Mitch Albom -
88Adventures of Sherlock Holmes - Sir Arthur Conan Doyle -
89 The Faraway Tree Collection - Enid Blyton -
90 Heart of Darkness - Joseph Conrad -
91 The Little Prince - Antoine De Saint- Exupery -
92 The Wasp Factory - Ian Banks
93 Watership Down - Richard Adams -
94A Confederacy of Dunces - John Kennedy Toole -
95A Town Like Alice - Nevil Shute
96The Three Musketeers - Alexandre Dumas -
97Hamlet - William Shakespeare -
98Charlie and the Chocolate Factory - Roald Dahl -
99 Les Miserables - Victor Hugo -

Retreat

I am feeling the effects of my recent trip to Yosemite with The Boys. I feel rested, calm, as if a salve has been placed on my soul. It was only three days away but perhaps the thin, clear air and the cold water did it.

Silent Saturday

Yosemite, 2009

The Wish to Be Generous

All that I serve will die, all my delights,

the flesh kindled from my flesh, garden and field,

the silent lilies standing in the woods,

the woods, the hill, the whole earth, all

will burn in man's evil, or dwindle

in its own age. Let the world bring on me

the sleep of darkness without stars, so I may know

my little light taken from me into the seed

of the beginning and the end, so I may bow

to mystery, and take my stand on the earth

like a tree in a field, passing without haste

or regret toward what will be, my life

a patient willing descent into the grass.

--Wendell Berry

Back and at Hopeful Parents

I'm over at HOPEFUL PARENTS today.

A little later, I'll post about the trip to Yosemite.

Stay tuned, because it might be the only post where I'm actually, positively, and totally relaxed.

Really!

Miles to Go

When Sophie was diagnosed with infantile spasms at three months of age, I knew absolutely nothing. Nothing about babies. Nothing about epilepsy. Nothing about vaccinations. Nothing about doctors or hospitals or seizures or illness or drugs or death.

Perhaps it had been a charmed life; but that's beside the point.

The new path travelled through hospitals, and along it we visited neurologists and contemplated brain surgery and tried drug after drug after drug. Sophie blew up on steroids and developed ulcers all over her face. She developed pseudo-tumor cerebri, a rare side-effect of weaning her from steroids that only resolved after SIX lumbar punctures. She was five months old. Sophie screamed, often, during her first six months of life, for twenty-three out of twenty-four hours. She screamed many times until her mouth opened into an O and a rasp came out. We doled out minuscule portions of food, enduring her moans of frustration and hunger as she circled her room, like a caged tiger. I fought with insurance companies and dissolved into tears and shouts and curses as obstacles were thrown my way. And still we dragged ourselves down this path, listening to what we were told, doing what we thought good parents did. Our advisers were sometimes kind and sometimes not. They were often wise and more often not. They were valiant in their efforts and careless in their decisions.

Many angels appeared on the path, took Sophie into their arms and healed parts of her until it was time to travel away again. For this I was grateful and grew strong and filled with faith.

We often beat through thickets and got lost under dense canopies. I scraped the bark of trees until my fingers were bloodied, reached and climbed until the canopy opened up into sky. And always, always, the path cleared, grew straight when it veered away from the regular road. As trite as this analogy might sound, it is our Truth, and I've struggled through the same thickets of dense under and overgrowth in my brain, dendrites and neurons and connections that almost make it and I understand! and then something is broken or explodes and the old patterns fire and I am thrust back into darkness. Into doubt and confusion when what I know is that I must crouch and wait.

Andrew Weil's book Spontaneous Healing might have been the first passageway out, that ripped me off that path and set me on a different one, the path that I travel daily with my Sophie and her two brothers. And while I have occasionally veered off it and back on to the other, more travelled and perilous one, I have found that this other path has led to healing. The healing of Sophie, of me and of my family.

That book led me to seek out alternative and integrative care and to look on medicine and healing and curing in new and different ways.

And now, as the health care reform debate rages on and on and what seems simple to me appears chaotic and terrible to others, I find myself plunged into a sort of despair, again, about what it all means. And then I read this deceptively simple post by Dr. Weil, and it all came flooding back.

I urge you to read it HERE.

In the meantime, I'm going back out to weed.

Yosemite

I'm off to Yosemite, one of the most beautiful places on earth, for a few days with The Boys (the little ones).

See you soon.

Heart of Darkness

There aren't many phrases used as often as Conrad's "heart of darkness," but this morning I was drawn to a story in salon.com, (admittedly an often inflammatory journal) despite myself, about the leadership of America's nuns. I wrote not too long ago about a story I'd read of how the Vatican seeks to limit the work/power of its more "liberal" nuns, particularly those who are American. I wrote that in the context of my own struggle with Catholicism, the pull of tradition and custom and the push toward something more enlightened and gentle and true to my own instincts. I wrote then that this conflict has nothing to do with faith and everything to do with religion or the deadening of faith that I believe often comes with espousing a religion, and, in particular, Catholicism. The article today discussed the leadership of America's nuns and their refusal to listen to the survivors of sexual abuse by nuns. It's a dirty story, a horrible story, and my initial reaction was I don't need to read this or write about it or even think about it. But I read it through my reservations and then clicked off the site and deleted the email from my inbox.

And drove my boys over to Krispy Kreme for donuts.

Returning to my computer, I opened another article -- this one, ironically, about William Golding, the author of The Lord of the Flies. It appears that the estimable writer (now dead) admitted to an attempted rape of a young woman when he was only eighteen years old. Later, as a young teacher, he often pitted boys against one another, Lord of the Flies-style, to observe them as they struggled with freedom.

Fueled by sugar and maybe even sickened by it, I feel compelled to write this post if only to muse about it, to parse it around in my mind and perhaps to provoke response. Is there only one response to such obvious amorality? Evidently not, since victims of "nun abuse" have yet to receive justice or even an ear. Those of us who are Catholics, even if we are cafeteria-style Catholics, often plug our ears, purse our lips, move through this stuff blindly. William Golding won a Nobel Prize in Literature; his novel is taught the world over and I know that I use the expression "lord of the flies" almost idly as I watch my own two boys play wildly and without restraint, bare-chested with sticks and plastic guns. I'll continue to do so, I imagine, and enjoy discussing the novel when my sons read it one day.

Yesterday, I opened up the blog of Stephanie Nielsen to see a photo of her, cradled in her husband's arms. It's the first photo of her, revealed at the one-year anniversary of her terrible plane accident that left her burned over 85% of her body, including her entire face. The photo was initially so difficult to see that I literally gasped and began to weep. But this woman's courageous eyes looked up and out and into anyone who saw. And what those eyes see and what these eyes see was love. Just love, only love and all of love.

I'm not sure what all this means, exactly, whether the timing of my reading these stories means anything at all. I have no judgement, at least nothing that I can think out and declare. I can only present them and intimate what resides the deepest. And I think that might be Love.

Click HERE for the Salon.com article

Click HERE for the NY Times article

Sunday Laugh

My Son Olivette

Glory

Rene at fruityfantastica posted this today.

I think it's glorious.

Screamin' Saturday

I woke up with a cold. I was so irritable that after yelling at the boys about all the crap that is EVERYWHERE IN THIS HOUSE, I had to apologize, and Henry hugged me and said that he understood and I was always irritable when I was sick.

When I went on Facebook I noticed that someone had commented after a comment of mine on someone's post. The post was something from Newsweek about the five biggest myths in healthcare reform. I had said something to the order of finally, a bit of sanity in all the insanity (because the article proceeded to dismantle some of the more outrageous claims of the far right regarding health care reform) and then I made a sharp-tongued remark about the photo of the screaming white man that went with the article. I think I said something like and aren't screaming angry white men sort of retro? Anyway, if I've lost you or you're not well-versed in Facebook, someone commented right after me, still about this article, but more about MY remark. And this person (whom I do not know) just typed SYFP for his comment.

SYFP

Now, even though I'm well-versed in Facebook and have actually gotten into a couple of other snafus, I admit to not knowing what those letters stood for, so I went on google and learned that SYFP meant: SHUT YOUR FAT PIEHOLE.

I had that old queasy feeling in my stomach -- the one that bears witness to my conflicts. To being a very opinionated, intelligent woman who isn't afraid to speak her mind but who is also, down deep, a tad bit insecure and eager to please, to be considered gentle and good and certainly not a woman with a FP.

When I recovered, I commented right below those letters that I thought they were quite apropros of my earlier comment about angry, screaming white men.

And then I took my quivering self right out of cyberland and went to a class on How to Cut Your Kid's Hair. I wanted to cancel the class -- what was I thinking, anyway? But I had already paid for it, so I took a shower and dragged myself over there. It was actually fun, and Oliver got a pretty good cut, if I do say so myself.

Poetry Friday

A CLOSE CALL

Dusk and the sea is thus and so. The cat

from two fields away crossing through the grapes.

It is so quiet I can hear the air

in the canebrake. The blond wheat darkens.

The glaze is gone from the bay and the heat lets go.

They have not lit the lamp at the other farm yet

and all at once I feel lonely. What a surprise.

But the air stills, the heat comes back

and I think I am all right again.

from Refusing Heaven

poems by Jack Gilbert

Slogans

Claire sent me this and I just HAD to post it, given yesterday's rant. Thank you, Claire.

Switch out "our schools" with "HEALTHCARE," add an "s" to "get" and

Perhaps simplistic, but it's the principle, right? And for all you lurkers out there, I KNOW there's someone who totally, utterly disagrees. I'd love less of a one-sided discussion (and that's not dissing those who are dear to my heart AND mind who comment regularly!).

Bring it on (without packing guns or being disruptive -ahem...)

2 Cents

I had a million thoughts today, as I was running down the road trying to loosen my load.

Actually, I drove all over the city, dropping off and picking up my children from their various summer activities and, in the case of Sophie, school. And while I drove I listened to a CD that my dear friend Shannon gave me by a Buddhist woman named Pema Chodron (the tape is in the car and I can't remember the name of the book that this Buddhist nun wrote and read). She has a soft, strong voice that is alluring really in its gentleness, but like all things aural, I get distracted and my mind wanders and then I'm not listening to it at all. So then I switched over to a cheesy commercial radio station where, God Bless, they were playing entire sides of albums from the seventies. So then I got really happy and felt so goofy because I happened to know every single word of an album by Bad Company and I actually sang along. The DJ then played the whole side of the first album from Woodstock and I was in heaven, especially when Richie Haven started singing. And so it went until I got sort of tired of all that music and noise so I switched it off and went back to thinking.

I've been a little caught up in the healthcare debate crap and even went to my congresswoman's office yesterday to tell her how important healthcare reform is to me and my family. There's a part of me that wants to believe it's my civic duty and that my opinion actually matters in this battered democracy of ours. And then there's a part of me that thinks it's all bullshit and why am I bothering because the stranglehold of the medical/industrial complex is just too enormous, and that doesn't even go into the absurdities of the populace, those eggheads that are crying socialism, etc. etc. And then there's the embarrassed part of me that thinks Americans are really just a fat, lazy group of people who are constantly complaining (myself included) when we, in fact, live better than 7/8ths of the world's population and have a yawning idea of entitlement that is downright...embarrassing, like I said. But the fact that I spend tens of thousands of dollars in health insurance and still have to argue every single time a claim is made for anything related to Sophie, knowing that her chart in BlueCrossLand is probably marked with a giant, red dollar sign with a slash mark through it and we're probably one step away or so from her being denied health insurance of any kind or, worse, bankruptcy and the feeling of being trapped in more than ways than one, well then I think it's worth it to fight. And the fact that the care we receive is often astonishingly bad, that I can go to a pharmacy and get the wrong drug or go into a hospital room and find someone else's urine in a cup on the radiator, or that gazillions of dollars are spent and made on medicines that actually create illness, well, it's right: To ask for, to demand reform.

So, to my "free market" friends, those who espouse it above all, I want to ask why we can't take the free market and all notions of it out of this healthcare debate. I know that sounds completely nutty and I admit to knowing absolutely nothing about economics. But I think it's more of an ethical issue, no? In a country as rich and powerful as ours we can't afford to provide equal access to healthcare to all of our citizens? I think that's nonsense. And I think it has everything to do with morality and nothing to do with capitalism/socialism. If free market enterprise (or however you say it) were good for everything, we might say that slavery should be governed by the market, too.

I pulled into the parking lot over at the baseball field and waited in the car for Henry's camp to be finished. I opened a new copy of the magazine The Sun and read a fascinating article about hallucinogenics, namely LSD, and the work that was done in psychoanalytics using this substance. And that made me think of Richie Haven again and sometimes I feel like a motherless child.

So that's my two cents.

Stage Mother

I'm raising two boys who will always call southern California HOME. That's weird and wonderful to me given my east coast upbringing. I've written before about my surfing thing. You can read about it here.

I still haven't gone, but I'm getting inspired.

Look at this boy of mine, last weekend. His first time surfing and he's shining!

Shining

We're so used to seeing and living with uncontrolled seizures that when they happen after a period of not-happening, it's remarkable. This past Saturday Sophie did have a big seizure and another one on Sunday. She had gone almost three weeks without one, the longest time in well over a year. We had even had a few days last week where she had no seizures whatsoever. I'm disappointed a bit -- who wouldn't be? -- but I had sort of expected it or at least put up some defenses in the event that it happened. My general philosophy, the belief that sustains me, is this too shall change, and change it did. But the great period without has reignited my hope that we will one day see longer and longer periods without them.

But back to my original thought: today, Monday, Sophie was significantly slower and duller than she had been last week. She was more Sophie-like -- the Sophie that has evolved over the years as the seizures have ravaged her. If you look at photos of her as a little girl, there is still a sparkly light in her eyes and a tipsy smile. I've posted many photos of my beautiful girl and I think all who have seen her and them can attest to the soul bursting out, but I wouldn't call her expression light or sparkly. Last week, Sophie was busy and more alive -- in that light sort of way that stares down at me from our hallway where many photos are posted of the three children through the years.

Today she is moving more slowly and her face looks a bit fallen. I don't think it's my imagination. What I realize is how much her personality is defined by those seizures and how heroic she is to get up every day and just live. It's as if she is buried under layers and layers of muck on these days -- and because these days have been happening so often, days into weeks into months into years, we've all gotten used to that. When she -- and we -- had a respite, she shone.

And what that's done is give me a renewed compassion for her and for those difficult times.

And when these difficult times pass, I will be sure to be grateful for the light.

A Meant Prayer

A Summer Night
by Kate Barnes

A summer night. The moon's face,
almost full now, comes and goes
through clouds. I can't see
any stars, but a late firefly
still flicks his green lamp on and off
by the fence.
In this light
that is more illusion
than light, I think of things
I can't make out: milkweed opening
its millions of flowerets, their heavy heads
smelling like dark honey in the night's
darkness; day lilies
crowding the ditch, their blossoms
closed tight; birds asleep with their small legs
locked on twigs; deer stealing
into the uncut hay; and the young bay mare
kneeling down in the pasture, composing herself
to rest, as rounded and strong
as a meant prayer.

by Kate Barnes, from Kneeling Orion.

Clarion

Glad Day or The Dance of Albion - William Blake, c.1794

I'm ready to type these words in a normal size and font.

Sophie has not had a "big" seizure in over two weeks. The last two days she hasn't had a single seizure all day.

That's right.

And now I'm going out on a limb and stating:

Sophie is taking a homeopathic remedy and the homeopathic remedy is helping her dramatically.

Except for a brief period of about four years on the same homeopathic remedy, you must know that Sophie has had uncontrolled seizures her entire life.

This is no coincidence and I will repeat:

The homeopathic remedy is dramatically reducing Sophie's seizures.

The thing is, when I tell people this they get nervous. They don't believe me. Really, they'll say. What else has changed for her? I know that if I were to take her tomorrow to The Neurologist, she would shake her head and not quite believe. It's been my experience that doctors, for the most part, don't seem to care at all about this sort of thing. Even my family can't quite wrap their brains around this possibility. That something alternative is helping Sophie in a very concrete way.

Before we started this new dose of oleum jecoris aselli, Sophie was having around 1-5 huge seizures a day. She had countless clusters of small ones. She was very dopey, tired or wired. She was extremely thin. I feared for her life.

So I will repeat this: we are less than two months into the remedy and she has gone over two weeks with NO big seizures. The smaller seizures happen in the morning, when she wakes up, and for the last few days, they have been minimal.

These are the drugs that Sophie has been on during the last fourteen years:

ACTH

Prednisone

Mysoline

Nitrazepam

Phenobarbitol

Depakote

Depakene

Klonopin

Clobazam

Zonegran

Lamictal

Vigabatrin

Topamax

Diastat

IvIg (technically not a drug, but a treatment)

Ketogenic Diet (not a drug but a treatment)

Felbatol

Keppra

Banzel

Not a single drug helped Sophie in any significant way. Almost all had significant side effects, including irritability, depression, anorexia, increased seizures, sleeplessness, ataxia, somnolence, extreme constipation, pain.

Wouldn't you think someone, somewhere -- some kind of professional, a neurologist, perhaps, would be interested? Come running?

They won't. And it makes me too tired to even explain why I know this.

Sophie might have a big seizure tonight or she might not. I have no idea what the future will bring. But what I do know is that she is dramatically better right now. The boys think she's gone wild, such is her energy and enthusiasm. She's been pulling everything down from shelves in her room. She is knocking over baskets of toys, reaching inside them and throwing them around. She is looking us in the eyes insistently. She doesn't know what to do with herself, the self that lies deep within, stifled and smothered and exhausted by seizures. I am trying to imagine her brain, free and wild and beautiful.

It is, quite literally

MIND BLOWING.

Discoveries

I've discovered (well, not really discovered because one of my favorite bloggers, Claire, told me about it) a blog that is fantastic. If you're not too buried in reading blogs and want to add one to your list, click

HERE.

Thursday Rant

The good news: The Husband's MRI was negative. Looks like some lifestyle changes are in order as stress rears its ugly head and takes over. Thank God.

The bad news: No bad news, actually, just a Thursday RANT.

Why the hell is it a right to bear arms in our country but not to have access to affordable health care?

I know this is one of those questions that people won't ever agree upon (like why will people pay $1.25 for a can of chemical and/or sugar-laden soda but not $3.00 for one dozen farm-raised, organic eggs?), but I feel the cleansing, urgent need to state my feelings:

I want the government, the government of The United States of America, the most powerful, wealthiest government in the world (perhaps the history of the world?), the government OF THE PEOPLE, BY THE PEOPLE, FOR THE PEOPLE, to ensure that every single American citizen has medical insurance that's affordable. No compromise, no dithering around, no catering to Big Pharm and the whole medical-industrial complex, no tail between the legs at those who cry "Socialism!", no compromise, no concessions. Just do it and do it quickly.

And one more thing: the cash for clunkers thing. What the hell? People are being rewarded with cash for turning in their monstrous, gas-guzzling vehicles after twenty-plus years of being warned how horrible these cars are? After mocking untold numbers of people who were "green" when being so wasn't "hip?" It's all about the money, in the end, and it makes me sick.

And now I'm going to read some poetry.

Let Your Waters Wash Down

I have nothing to report, still waiting but not so anxious, today. I've a feeling it's nothing and my instincts are generally pretty sound. Thanks for all your thoughts and prayers. And in keeping with my inner Italian peasant (click HERE), I'm happy to report that Sophie went the entire day without a seizure.

That's right.

This video, like the movie, is dated and goofy but I do love it. And the song is PERFECTION and fits my mood exactly.

The river flows, it flows to the sea
Wherever that river goes that's where I want to be
Flow river flow, let your waters wash down
Take me from this road to some       other town
All he wanted was to be free
And that's the way it turned out to be
Flow river flow, let your waters wash down
Take me from this road to some other town
BRIDGE:
Flow river flow, past the shady trees
Go river go, go to the sea
Flow      to the sea
The river flows, it flows to the sea
Wherever it goes that's where I want to be
Flow river flow, let your waters wash down
Take me from this road to some other town

Waiting

I spent most of the day corralling anxiety. This time for The Husband who woke up one morning last week with double vision and what he calls a "numb mouth." He went to the doctor yesterday who basically said that it "could be any number of things or nothing." He ordered an MRI for today.

So, we're waiting.

And feeling a teensy, tinesy bit anxious.

I took the boys to a free comic book workshop this afternoon in a Los Angeles neighborhood that I don't know very well. If it weren't for the dark cloud hanging over my head, I would have been in heaven. The boys were in their class and I had two hours to kill. Right next door was an amazing, perfect little bookstore and cafe. The kind of bookstore that you don't see anymore -- small and crowded and filled with weird selections as well as used stuff, gifts, ephemera, etc. There were chairs to sit on, and stacks of books by the chairs. In the children's section, I found this:

This was a childhood favorite, and I haven't seen it in years. I bought it for $6.99, a giant iced Americano and a plate of cured salmon, slices of baguette toasted and cream cheese. I sat outside with my book of laughs and listened to Bob Dylan, wafting through the store and over all those books and right into my heart. They even played Love Minus Zero. I once had to pick my favorite love song of the millenia for a Y2K party, and that was what I picked. There's something about hearing a favorite song arbitrarily that fills me with joy.

In spite of the waiting.

Twisted

I know that I said just yesterday that I was recently back from our vacation and didn't know where to start and how to begin. I have no intention of blogging about the vacation because it was just that: a vacation. Full of family and beach and goofy child antics and aggravating family rigamarole. Perhaps I'll post a picture every day and let them speak for themselves. Or perhaps posting a photo will inspire a word or two, a paragraph or something.

Hitting the ground running is always the experience when I return here from any time away. I write this with a sigh, because it's always a given. And this morning was no different. I woke up and fed Sophie her breakfast. After that she proceeded to have a particularly violent bout of seizures and when I managed to bring her to the living room couch I had to practically lie on her as her arms and legs shot out and kicked and her spine twisted and arched and she threw her head back and groaned. It was as if she were possessed and at one point I yelled out, Stop it, goddamnitt! a word that I never use but this felt right in that moment. The other trouble was that Oliver was with me in the living room, sorting through all the crap in his backpack from the plane, and when I cursed he probably looked up and at me and saw what was happening. He's particularly emotional right now, melancholy about leaving Hilton Head, so he came over to me where I was sitting, half-lying on Sophie and he put his arms around me and started to cry. And then I started to cry, too. He said I hate Sophie's seizures and cried even harder when I agreed. I said I'm sorry that you have to experience all of this, I'm so sorry. I know how sad and hard it is and I'm so sorry. We cried together for a little bit and during that time I reassured him that we had to just be strong, that all would be well, that we loved Sophie no matter what and that we were a strong family it was all right to be sad and angry sometimes because we would feel better again, too.

And then all the seizures stopped and we got ready to take Sophie to school.

On the way, I had the burnt eyelid feeling from crying and I started feeling just the tiniest bit of resentment at other people's lives. How simple and easy they were or seemed. I felt this for just a small moment but just before the usual anger seeped in, I realized something quite different, like a twist in my psyche. I thought how difficult all of life is and can be for just about everyone. I thought that my family's life was just more difficult right now than others might be and that anger wasn't really the right emotion. I realized that I could feel compassion and understanding toward other lives and other's problems and actually not discount them, even if they were about something radically different than my own. And if I were to let go of resentment and anger I should then claim more compassion for myself and my family. I could acknowledge, then, that YES this life we lead is so damn difficult, horrible, really, a lot of the time. Of course I feel depressed a lot of the time and irritable and worried. I realized that in feeling anger and resentment toward what I had perceived as other people's lack of worries also made me less accepting of my own troubles. I feel guilty a lot of the time for not coping in the way I think I should be coping. In judging people's problems as trivial (compared to mine), I judge my own as trivial compared to others. And that makes me feel even worse.

Does any of this make sense?

I think I mean to say that a real twist in my psyche occurred randomly this morning as I drove in my car to Sophie's school.

The twist was a sort of DNA-like thing: overwhelming sadness, depression, anger, resentment, judgement, compassion, understanding became as one in a sort of Eureka moment.