Happy Chinese New Year!

Last night, Oliver persuaded me to take him downtown to Chinatown to the Midnight Temple Ceremony at Chuan Thien Hau Temple. We were probably two of perhaps ten non-Asians there, and while I didn't utter a word to anyone other than Oliver it was probably one of the greatest two hours of people watching in my own city that I've ever experienced. We ate delicious Chinese rice and shrimp soup handed to us in big styrofoam bowls. We lit incense sticks and carried them into the temple. We looked at the hundreds of offerings -- oranges and gifts and little packages and bags of candies. We watched a terrific Chinese Dragon Dance, and at the end stood on the stairs as literally 500,000 firecrackers were set off, our hands clapped over our ears for what seemed like at least ten minutes of deafening explosions. I had a wonderful time but believe I should get a Mother of the Year award for doing so, especially since we drove home at 12:30 in the morning.

Make-A-Wish Caregiver

Gilles Marini

dedicated to Sandra

I was talking to my friend Sandra last night, checking in on how she's doing. Sandra is the mother of a little boy who contracted a vicious immunological encephalitis when he was two and a half years old that decimated his neurological system. From what I understand, he was a typically developing boy who laughed and played and spoke and ran and jumped, but after a fifteen-month stay in the hospital (yes, 15 MONTHS), he left severely disabled with countless medications as well as an uncertain recovery and future. Sandra, her husband and their son live what I would call an extreme life, where a typical day and night might include battling systems of care and juggling serious medical crises as well as working regular jobs and trying to maintain some sense of normalcy in one's relationships. To people who do extreme parenting, there is often no end in sight. 

I checked in with Sandra because her little boy was going into the hospital again this morning for two surgeries, and I wondered what I could do for her. Sandra has the same sense of humor as I do, which means dark. Very, very dark. I imagine that given the shitty things thrown her family's way, that sense of humor sustains her from madness -- not anger, mind you -- but madness. I don't even think I could do justice to some of the hair-raising stories she has told me -- you'll have to just take me at my word. Madness.

We had a conversation last June about my Brothers and Sisters television show binge, and it was then that she told me about her infatuation with Gilles Marini, the extremely good-looking actor who plays one of the characters on that show. He's so good-looking that when I searched for a photo of him to put up with this post, I didn't even make it extra-large because it seemed almost obscene. When my son Henry began high school, I was excited to share with Sandra the fact that Gilles is a father at the same school, and that I had even sighted him once or twice, most recently at the Christmas tree sale. I know this sounds utterly ridiculous, but I don't care. When you're up all night with a child who is screaming for no apparent reason or waiting to speak to an insurance company for approval of a life-saving medication or juggling the schedules of mediocre nurses who stand you up, or -- god forbid -- trying to do some paid work so you can afford your apartment -- well -- you deserve to hear about your friend's proximity to one of your fantasies. As far as I'm concerned, you can think about or do whatever the hell you want. Whatever gets you through the night, right?

Anywho.

Last night, knowing that there was really nothing I could do to ease Sandra's anxiety or lessen her pain or that of her son, I suggested that I might contact Gilles Marini and ask him whether he'd fly out to the hospital where she's staying and pay her a visit. Sandra said that would make her feel much better, and we laughed like people do online when they don't type LOL (I despise LOL). A few moments later, I had the brilliant idea -- humor my conceited ways, please -- that there should be a Make A Wish Caregiver foundation that granted wishes to the caregivers of ill and disabled children and adults. At this very moment I have three caregiver friends, two of whom are in the hospital with their children for extended stays and one of whom has just left after an extended stay. I have another friend who has been caring for her severely disabled daughter for more than thirty years -- by herself -- and yet another who cares for his young adult daughter by himself. I have countless friends who have been doing this beautiful and extreme caregiving for probably what amounts to hundreds of years if I combined them. Hell, you know from my endless tales here on the old blog that I've been doing the same sort of shit for nearly twenty years! I'm sort of joking about the need for a Make A Wish Caregiver operation -- and sort of not.

Sandra's wish is that Gilles fly out to the hospital where she is bunked down with her recovering son in the PICU. She hopes that he'll give her a tango lesson. Gilles? Are you reading this? Hello?

Readers who are caregivers living the extreme life: what would you wish? Dream big, babies, dream big.

Sunset Over Ralph's

dedicated to Robert as he recovers and Jeneva as she forges on

When I moved to Los Angeles sixteen years ago, I thought the name Ralph's for a grocery store chain was ridiculous, and I guess I still do. Yesterday -- or maybe it was a couple of days ago, I snapped yet another photo of the sky over Ralph's parking lot, and as I scrolled through those photos in my phone, I thought about how the ordinary and the extraordinary are right here, right now, nearly every moment of every day. Then I thought about the ability to hold contrary thoughts and feelings, how that ability is honed over the years when your life experiences dictate it, and how that ability is so difficult to articulate. I spoke at length this afternoon with a friend who is helping me to get my "book" up and off the shelf where it's languished for years. Our conversation ranged from the intensely personal to pure editorial business, but at some point in it, I tried to convey how my life is at once horrible and perfectly all right. I meant -- or mean -- to say that it's not horrible. It's fine. It's fine even being horrible. When Sophie was a tiny baby, newly diagnosed with her hideous seizure disorder, when we were just stepping onto the path of a very different world, I was taken to an Orthodox Jewish holy man somewhere in the Bronx. I rode in a limo up to the hospital where this holy man was convalescing after suffering a stroke. I walked down a hallway, clutching Sophie to me (she was not even three months old), escorted by a few bearded men and led into a room where a man sat in a wheelchair, his head resting on his shoulder. He had the most piercing eyes I had ever seen, and I had to almost look away. He said a few things to me in Hebrew, and the men who had escorted me translated them to me, words that made me stop cold as they were things that no one, no one at all, should have known in that room. He lay his hand on the baby for a blessing or something, and he looked up at me with his eyes (his head on his shoulder) and he said, She will be all right. Your baby is all right. He gave me an ordinary little medal with a Hebrew symbol on it and told me to pin it to her clothes, near her skin. I did that every day for years, I think, and now I don't remember when I took it off or what I did with it. It doesn't matter, though, because despite everything, Sophie was going to be, she was all right. She is all right, and so am I. Ralph's is a ridiculous name for a grocery store chain, but damn, sunsets sure look as good over Ralph's as they do anywhere else.

A Cure for Everything

The Husband has returned from the mother country with knives and chocolate.

If I Were Lucy,

I'd be in the marmalade sky, with diamonds and tangerine trees, not here, just catching my breath.








Reader, how was your day?

How We Do It, Part XXXIX

I don't really want to write about the messy part of caring for a disabled individual -- the grind of soiled linens, how difficult it is to pull a mattress away from a wall and pull the fitted sheet off, the stains, the smells. I busy myself. I am efficient, my hands deft, my back strong. In my mind, I play with words, how I'll write it. Why will you write it, The Other asks, what's your point? I'll flinch, snap the sheet off the near corner, position Sophie on the floor, away from the wet and the smell. No one likes a confessional, I concede, but I can't help myself. I've cleaned her up, sprinkled powder, pulled up the soft pants, handed her the beads, the jingle bells and walked down the hall with the laundry and the diaper in the bag, my head turned. She probably notices when you grimace, The Other says, and I wince, again. Are you going to write that? As I open the window in the room, I let in air, the words in my mind, then out, sweet motes of tangerine trees. The Other's words scrabble, hoarse, pipe down, go silent, and I busy myself with a match from the box, a tidily decorated matchbox, a whale, a mermaid, la sirena, a house for a stick with a black tip that I strike just so and light to Vetiver and Cardamon, Elysian Garden, Snow Gardenia, Hesperides Grapefruit, Driftwood and Stargazer Lily.

Synchronicity, part 67,431,459

O Me! O Life!

Oh me! Oh life! of the questions of these recurring
Of the endless trains of the faithless, of cities fill'd with the foolish,
Of myself forever reproaching myself, (for who more foolish than I, and who more faithless?)
Of eyes that vainly crave the light, of the objects mean, of the struggle ever renew'd,
Of the poor results of all, of the plodding and sordid crowds I see around me,
Of the empty and useless years of the rest, with the rest me intertwined,
The question, O me! so sad, recurring -- What good amid these, O me, O life?

                                  Answer.
That you are here—that life exists and identity,
That the powerful play goes on, and you may contribute a verse.

Walt Whitman (1819-1892)
from Leaves of Grass (1892)

Mao's Kitchen

A menu hanging on my front door

Popping popcorn, eating a mess of candy and soda, watching Stand by Me (oh, the beauty of that young River Phoenix!) followed by Seinfeld reruns wasn't enough to dispel the gloom around these parts. I've been folding laundry for the masses and mulling over the recent disappointments -- the baseball, the Switzerland trip -- thinking about dreams and resetting and life's purposes and otherwise making mountains out of molehills, allowing boulders to occlude what's beyond. It's like living in the present when the present is as interminable as the future. We're all in the thin of having head colds and grumpy. Sophie is sleeping much of the day, and I'm hard put to understand whether that's a good thing or a bad. I'm still reading The Goldfinch or, rather, slogging through The Goldfinch. I wonder if it's just me, projecting the current soul-less state of the union over here or whether it's just The Goldfinch, but I might need permission to call it a loss (I bought the book instead of downloading) and a day.

Anyone? Anyone?

Her voice on her birthday

portrait of Virginia Woolf by Roger Frye (1917)

This gives me the shivers:




There's this, too:  Literary Jukebox

This thrills me

Pipeline Winter 2013 from Eric Sterman on Vimeo.

Saturday Three-Line Movie Review

Stephen Frears' beautiful movie Philomena has great open spaces where more is unsaid than said, and the story of the quiet determination and strength of Philomena, an Irish woman looking for the son that was stolen from her as a girl, is at once a testament to living with faith and grappling with overwhelming tragedy. The story is a true one, and it's a harrowing depiction of the cruelness of the Catholic Church, without being a diatribe against it, of the centuries-old suppression of sexuality and of the conflict between dogma and faith. The movie is also hilarious and perfectly charming, beautifully shot, and Dame Judi Dench is a goddess with Steve Coogan her unlikely yet perfect foil.

Other 3-line movie reviews:

August: Osage County

Her

American Hustle

Scorching the retina

It's been a week of heartache and colds, heavy, with a front of humor.

Here's a poem:

Poem Not for My Son

There are things you can't tell
a child -- they'd sit too heavily
upon him, like the crowns
of young royalty:
Tutankhamen holding up
that twelve-pound crust
of gold and emeralds
on his slender neck.

So I gaze at my boy
only when he's sleeping,
when the torrent
won't sweep him off
the cliff, when the beam
won't scorch his retina.

He works out now,
lifting cold black
barbells, his muscles rising
like good bread.

Think of every great thing:
rush of grain
through the elevator shaft,
the crush of water
fathoms down, glaciers
calving, the surge and weight
of tectonic plates. I shut
the door on my love.
Just a faint glow seeping
under the crack.

Ellen Bass

The Beatles, Airport Dreams, the NFL, Medical Marijuana, Vaccinations and Octopi

At the Little Santa Monica-Wilshire Blvd intersection in Beverly Hills, I spotted four men with guitar cases and slyly took their photo and imagined them to be the Beatles, circa 1969, Abbey Road.

I dreamt last night that I was supposed to get on a flight to Morocco but couldn't find my ticket. I wandered down stainless steel hallways and knew that the person to call was my father who came to get me. I keep dreaming about planes and trips that I just miss, airports and hotels and frustrated efforts to get somewhere.

I felt bitter when I read about some spokesperson for the NFL, stating that they would consider "allowing" pro football players to smoke pot if it helped with their concussions and brain injuries. Evidently, football players smoke a lot of pot for pain. I imagine the hurdles to help these men will be minimal -- as compared to the legion of families who are working their asses off to get medical marijuana for their children suffering from devastating uncontrolled epilepsy. Does anyone else see the insanity of a sport/industry that gives people debilitating neurological problems yet commands fanatical attention and earns billions of dollars? I hate the American Football Sports Machine and the reek of money and profit. The smell of bullshit is bitter, bitter, bitter.

I read another anti-anti-vaccination diatribe today on Facebook and jumped in the fray despite the futility of it all. This is what I said in response to a person's comment about the "reckless behavior of those who don't vaccinate:"

Yes, those of us who have a child with a severe refractory seizure disorder because of vaccines live every day recklessly as we change their diapers for twenty years, pick them up from the floor where they lie, seizing, give them medications, scientifically "sound" that cause hideous side effects and mull over questions on whether it would be better for our child to die before us or after -- and then have to read the pablum that the mainstream media presents, pitting crazies against crazies with literally no nuance or attempt to understand the very real fears of many of us. My question to you is whether you believe my daughter's life is a worthy sacrifice for the "greater public good" -- I will pass no judgement if you believe this to be so, but I sure as hell pass judgement on those who never once entertain that THIS is what many of us have to grapple with as we make decisions in our families. And I'd add that the acknowledgement of that would go very far in persuading people to vaccinate -- much further than the incendiary language you use or the facile calling up of superficial goofball celebrities.

Now, don't get me wrong. I am decidedly NOT against vaccinations. I just think people should stop before they call people immoral or reckless and think about how AFRAID many of us are -- AFRAID for good reason. We are afraid and not crazy. How about talking to the legions of parents who allow their young children to play a sport that could very well cause their brains to be jarred against their skulls and, over time, alter the exquisite and beautifully wrought neurons of which they're made.


I'd like to be under the sea
In an octopus' garden in the shade
He'd let us in, knows where we've been
In his octopus' garden in the shade
I'd ask my friends to come and see
An octopus's garden with me
I'd like to be under the sea
In an octopus's garden in the shade
We would be warm below the storm
In our little hideaway beneath the waves
Resting our head on the sea bed
In an octopus's garden near a cave
We would sing and dance around
Because we know we can't be found
I'd like to be under the sea
In an octopus's garden in the shade
We would shout and swim about
The coral that lies beneath the waves
(Lies beneath the ocean waves)
Oh what joy for every girl and boy
Knowing they're happy and they're safe
(happy and they're safe)
We would be so happy you and me
No one there to tell us what to do
I'd like to be under the sea
In an octopus's garden with you
In an octopus's garden with you.
In an octopus's garden with you.

Where else do you read about The Beatles, Beverly Hills, the NFL, vaccinations and marijuana and have it all tied up in a neat little package?

Boy Conversation Number 3,456,792 and The Biebs

Not long ago, Oliver lectured me on how I need to stop lecturing. This morning, as I navigated the city on my hollow steed, my trusty sidekick beside me, he began to tell me that one of his best friends recently acquired some more electronic gadgets. His best friend is an only child and is one of those kids that has the latest in literally everything you can imagine, a source of great conflict for Oliver. My boy is at once incredibly materialistic with dreams of being a billionaire and preternaturally sensitive to what really matters. I told him so. Sadly, I didn't heed the no-lecture warning and launched into one of my best -- a treatise on conflict and envy and filling up one's soul with things and emptiness and that's when Justin Bieber stepped in. You know, I said (or droned, to Oliver), having too many things and too much money is really confusing for a lot of people. Like Justin Bieber, for instance. Since I had my hands on my steed and my eyes on the road, I didn't notice whether Oliver was rolling his eyes or even awake. I heard last night that The Biebs was arrested for drag racing his Lamborghini, and he was drunk! Just the word Lamborghini perked Oliver out of his dolor, and I realized I had his attention, so the lecture continued. That kid just got too much money and fame too fast, and just look at him now. He's too young and he can't handle it. Oliver, who is as conflicted about The Biebs (outwardly revolted by him as liking him would align him with teeny bopper girls, inwardly admiring, I imagine) as he is about his friends' possessions, said with disgust, Mom, Justin Bieber is a gangster, now. Like, he's a bad person. I said, Well, he's so young and just can't handle everything. Oliver said, Mom! He's not young! He's like twenty-four! You don't know anything!

I wish I could say that I dug in my heels, urged my steed forward and continued my lecture, but I felt haggard and old and needed to stop to rest.

Breaking News: Mixing it Up

No, it's not another miracle. Henry did not actually make the varsity baseball team, hence the confusion; Oliver did not get picked up by private jet and taken to Switzerland to join his father; Sophie did not stop seizing entirely and start quoting my favorite poems, and I did not get a request from Javier Bardem to have a child with him as he decided Penelope Cruz is too thin.

The Captain and Tennille are getting divorced.

In lieu of becoming a Bourgeois Dirge Blogger, I thought I'd write a series of stupid posts and chronicle things like Lifetime television movies (hence, the Gabby Gifford story) or My Celebrity Memories.

My memory of the Captain and Tennille is, of course, the same as yours if you're of a certain age. The photo above is my fifth grade school picture -- or maybe sixth grade -- circa 1975 or 1976. I have vivid and exciting memories of lying on my side in bed on a Sunday morning, listening to Kasey Kasim's Top 40, thrilled when Love Will Keep Us Together came on as the number one song, week after week. I can see their album in my mind's eye at the front of the stack of albums resting on my green shag carpeting, just below my stereo with the smoky gray lid. I remember like it was yesterday when a group of us on the neighborhood subdivision swim team, went to Six Flags Over Georgia and listened to them the whole way there and back. That was the same trip that we were disciplined by park officials after throwing ice and soda over the sky buckets onto the heads of people below (I had no hand in this other than being in the group that did such outlandish things, which became a sort of pattern for me being the good girl with the wild friends and boyfriends).

Anyhoo.

I might have gotten chill bumps when I heard Muskrat Love, listened to Do That To Me One More Time while chewing on a Sugar Daddy and reading a Harlequin Romance novel. Have I ever told you that despite being quite well-read, I went through a period in my tweens and early teens when I was a member of a Harlequin Romance Novel club? Yes, sirreee Bob.

I told you the Dirge Blog was being replaced by a half-assed TMZ replicant that uses expressions like Yes, sirree Bob and Anyhoo. 

Back to the Captain and Toni. Yes, they're getting divorced, evidently after 39 years of marriage. The Captain is 71 years old and reportedly didn't see it coming. Good lord, Daryl (has the name Daryl come back, yet?)! I hope they both find happiness apart. I also learned that the couple were discovered by Neil Diamond, no less, in Burbank and that Daryl and I share the same birthday! Just the day, obviously.

I believe my life has come full circle. When I lay on my back with my big head-phones, my Hollie Hobbie necklace dangling down my turtleneck, listening to the Captain and his big-toothed lady, Burbank was like another planet, and now I live just down the road!

Yes, Siree Bob!

Why?

Why did someone make a movie about this girl? Is she a figure skater?

Why did Oliver's passport sit at the post office for one week after being delivered there?

Why did Mickey, the post lady with whom I talked, tell me how sad this was for Oliver but that there might be a hidden reason that I landed up with my baby at home? There's always a reason for these things, she said.

Why did Mickey not get on my nerves despite her cloying cliches?

Why am I eating entirely too many donuts these days?

Why is Sophie's nose so stopped up? Is it a cold? Did her nose break when she fell on it over a month ago? Is she allergic to the marijuana plant?

Why do we carry worry when there's nothing, literally nothing, to be gained?

Why have I not gone to a yoga class in a year?

Why am I not flush?

Why am I so lush? (too many donuts)

Why can't I throw out the stack of New Yorkers that I have still not read?

Why did I dream of myself the other night as pregnant at fifty, milling through a party where other women carried shopping bags filled with guacamole that they insisted were their own babies?

Why can I not get Bruce Springsteen's Thunder Road out of my head, and why do I still remember La Marseillaise, the French national anthem as well as Robert Frost's Two Roads Diverged in a Wood both of which I memorized in seventh grade for my batty old French teacher, Madame Marie Smith, but not my one true love's middle name?

...
Le jour de gloire est arrive. 
Contre nous de la tyrannie
L'etandart sanglant est leve

Aux armes, mes citoyens!
Formez vos bataillons!
Marchons! Marchons!
Qu'un sang impur!
Abreuve nos sillons!

I have no idea what I'm doing today

or what I'm thinking or how I'm going to do it.

What's happening in your parts? Not pants.

What to do when you're not in Switzerland**

photo by J. Werndorf

Go boogie boarding at Zuma Beach in Malibu with your friends. Warm air, cold water -- gratitude.

photo by J. Werndorf

**The weather in Swissland is evidently cold, rainy, foggy and no snow.

Musings on Martin Luther King Day

That's a photo of people lined up to leave Los Angeles for a civil rights march in Alabama. It was 1965, and they were going to join Dr. King for a "Negro vote" march. I look at these photos and think of myself in 1965, a little white two-year old girl. I wonder whether I might have climbed onto that bus were I an adult. I hope so.

My awe of the man and what he did and what he said and what he accomplished never lessens.

When people claim that violence is sometimes necessary to achieve some goal or another, I think not really. Not at all. Martin Luther King is testament to that.

Bourgeois Bleak House

If it weren't for Marcello Mastroianni, waiting for me on the leopard skin couch in my mind, you might not hear from me, again. On Friday night, Henry's dreams of playing on his high school baseball team were dashed when he didn't make it. You know he's perfect in every way -- my Henry -- don't you? All the cliches of broken hearts and your children as your heart walking around wouldn't do justice to the baseball broken heart. Parenting is not for the faint of heart is not a crock of shit.The man-child lay on my bed and told me that he had wanted to buy me a beach house when he went pro. I might have murmured something, but I watched his words float up to the ceiling, the beach, the house, the pro, a dream, and I turned away so he wouldn't see my heart fly through a broken window and into the arms of the man laying concrete over the dirt on the side of my house. Saturday was a day to get through, and we did. Today was the day that Oliver and his father were to leave for Switzerland, and Oliver's passport didn't come in the mail on Saturday. We hoped that the old passport and the receipt and tracking number would suffice, but at the airport it didn't, and we made the frenzied decision that The Husband would go to Switzerland to see his very aged mother and Oliver would climb back into the car and come home. We ate Pringles in the car and opened the Swedish Fish and ate them, too. We pulled up into the driveway and walked into the house, joined the baseball-disappointed, and the girl sleeping off seizures (two days now with none!), pulled a nice, black bourgeois cover over the roof and down the sides and here we sit, baseball-travestied, disappointed, medical-marijuanaed and matriarch-heavy.

Full Moons and Fires and Seizures, Oh My! Oh, and Earthquakes!

Downtown Los Angeles, 1/16/14
photo via thewire.sheknows.com

No sooner had the ink dried on the two-week proclamation of Sophie being seizure-free for two entire weeks, then I received a text from her teacher at school that one occurred. That was Wednesday afternoon, and yesterday was a bust -- many seizures all day long, the subsequent clamminess and then the combined out-of-it-ness and agitation.

Small sigh.

The sigh is small because Sophie went two weeks without a seizure! I'm going to attribute the breakthroughs to the full moon, the fires burning just outside Los Angeles (the picture above, although not mine, is what most of us saw all day yesterday and then,late in the afternoon, smelled), the incredibly dry air, Santa Ana winds, small earthquakes (so far) and Oliver's Cold That Sophie Might Be Catching.

Medium sigh.

In the meantime, my record of meeting bloggers in person and adoring them stands as perfect. Christy Shake of Calvin's Story was in town and stayed with us last night. She is as lovely in person as she is a beautiful writer online, and I felt as if we were old friends. We talked and talked, ate a delicious dinner at a Korean small plate place in Beverly Hills -- tiny Brussels sprouts, roasted with tiny dried prunes, zucchini and peppers, a seafood pancake with salty dipping sauce, a salad of avocado, tiny figs, crispy rice and pomegranate dressing, and whole grain pot stickers with chicken -- and then talked some more back at our house before going to sleep. I am so grateful for these online relationships that morph into real-life ones.

Do you need a sweet laugh?  Read John Hodgman's New Yorker essay"Downton Abbey" With Cats  for a grand one.

What I look like when I'm on hold with Anthem Blue Cross during its death throes

So, a while back I posted what I look like while I'm on the phone with Anthem Blue Cross and eating a breadstick instead of smoking a cigarette. You can refresh your memory here. Today, I tried for the fifth time to contact Anthem in order to remove the automatic withdrawal of Sophie's premium from our checking account. I'll remind you that the evil and disastrous Affordable Care Act (that's sarcasm, there) enabled us to finally add Sophie to our health plan, and in doing so we are getting an entirely new health insurance plan with  entirely better benefits with an entirely different company for an entirely better price. Sophie used to have her own plan, an abysmal one, whose premium had been jacked up over 100% over the last few years and was diligently removed from our checking account by Anthem each month. The rest of our family had a separate individual policy with Anthem, equally as abysmal with an even greater rate of jacked-up premium, and we paid that one by check each month.

Anyhoo.

I've been trying to cancel the automatic withdrawal of Sophie's payment for weeks and have not been able to get through to a customer "service" agent. When I was connected to a human service agent -- ONCE -- I was sent on one of those hellish odysseys through the windowless warrens of Anthem and finally landed behind door number 6,345,876 and told to hold. Again.  The picture above was taken during that hold time, and in lieu of a bread stick, I kept a pen in my mouth and rolled its smooth, cold chartreuseness in my mouth while listening to many, many bars of a requiem that I imagined was for the death throes of Anthem and its connection to my family. My normal appreciation for classical music reached a breaking point, though, and when a voice finally broke into some seventeenth century dirge, it told me that due to the Affordable Care Act, we are unable to help you with your problem. Please call back at another time. In lieu of chewing on pens or smoking bread sticks, I went for the rectal Valium that Anthem has so kindly allowed us to purchase at a reasonable price.

Just kidding. That would have been an unauthorized usage of a powerful narcotic. We prefer weed over here.






To make a long story short, I have contacted my bank and put a stop to the automatic withdrawals that way. On February 1st, when the new policy goes into effect, I will be walking through the streets of Los Angeles with a burning blue cross. If anyone would like to join me, please do. There will be bread sticks and rectal Valium.

Driving Through Hollywood To Get to The 101 To Get to Sherman Oaks on a Weekday Afternoon

Insanity from the Past and Some Things Never Change Except, Perhaps, Seizures

Christmas, 2004

I'm cleaning and organizing today like a madwoman. Oliver is feeling under the weather, so after plying him with homemade soup and juice, I've let him vegetate in front of the television, gone through all the books and crap in my bedroom/office and tried to make sense of the universe. In going through some papers, I came upon this beginnings of an essay, written on October 3, 2004. I believe it was a writing workshop essay, the result of the prompt Write yourself through a difficult situation. 

Ten years later, I think it might provide some hilarity on your otherwise humdrum Wednesday. Feel free to laugh AT and with me.

I am walking our new puppy, Valentine, around the block. I'm training her to be an assistance dog, and said matter-of-factly, this sounds like an amazing idea. However, the training will take two years -- two years of driving to San Diego and back three times a month. I have a nine year old daughter with severe handicaps, a six year old son who has just begun kindergarten, and a three year old son who is currently raging through life.

Now I have a dog.

I was never a dog person; in fact, it's something about which I've always felt guilty. Because I don't get all warm when I see a dog or enjoy talking about dog antics or even like petting a panting, squirming dog, I somehow have a character flaw. Isn't there a saying, "Never trust a person who doesn't like animals?" But I have a dog, now, and I tell myself that the end -- a devoted animal who will sleep with Sophie and alert me when she has seizures -- will be well worth the conflicted feelings. As I walk her around the block, I'm thinking "is this 'a difficult situation' to write through?" How do I write through this as a difficult situation?

When I get back to the house, I go into Sophie's room. My husband Michael is sleeping soundly next to her. He has served the assistance dog role now for over five years because I am a psychotic wreck in the night. She is sitting up in bed, cross-legged in the corner. Sophie's bed is a mattress and box-spring on the floor and she sleeps against the wall. I unfold her legs and pull her to the edge of the bed, to make it easier to slip her pajama bottoms off and change her diaper. She is always soaked in the morning. She is nine and a half years old. Is this a difficult situation?

Michael, who on school days is aggravatingly slow, has practically leaped out of bed and is now very busy getting ready to rush off to work. It's a Sunday, and he hasn't had a day off in over a week. He's a chef and he has to go. I am angry and the day looms ahead of me empty in its Sundayness. 

The writing ends abruptly there but prompted me to search for the following photo of Sophie, the dog and me, dressed in pink poodle skirts for a Halloween extravaganza in San Diego, a required event for Dog Assistance Training. Please feel free to laugh AT me (especially my hideous, hideous hair) and WITH me. What the hell was I thinking?

Postscript:

Ha Ha Ha Ha! The assistance dog became the family dog after four months of me ferrying myself and my three young children and THE DOG down to San Diego for a three times a month 6 hour training session. Don't ask me how I managed to do this for four months.  Evidently, I lost my mind which included shearing off my hair and wearing poodle skirts. I couldn't handle being the Alpha Dog and soon allowed Valentine to run around willy nilly with my little boys. Today, I'm still out of my mind, but my hair is longer, I wear only jeans and long-sleeved tee-shirts and, occasionally, a burka. Valentine is still adorable, but she sure as hell is not a seizure dog and provides basically no services other than unbridled enthusiasm and an annoying, insatiable need to be loved. Henry is now fifteen years old and well out of kindergarten, impossibly handsome and still the sweetest person on the planet. Oliver is now twelve years old, home-schooled and still raging through life. Michael, or The Husband, still sleeps with Sophie and works all the time. Now eighteen years old, Sophie still sits cross-legged on the bed and needs to be changed. Up until two weeks ago, she still had seizures every day, all day.

As of today, she's two weeks seizure free.

 

I've posted this before***

Religious Consolation

One size fits all. The shape or coloration

of the god or high heaven matters less

than that there is one, somehow, somewhere, hearing

the hasty prayer and chalking up the mite

the widow brings to the temple,  A child

alone with horrid verities cries out

for there to be a limit, a warm wall

whose stones give back an answer, however faint.

Strange, the extravagance of it—who needs

those eighteen-armed black Kalis, those musty saints

whose bones and bleeding wounds appall good taste,

those joss sticks, houris, gilded Buddhas, books

Moroni etched in tedious detail?

We do; we need more worlds. This one will fail.

John Updike

***a sort of companion piece to my post Sunday Morning the other day where I muse on faith, gods and humans.

This happened, part eight

The Great Pyramids are shrinking and Oliver picked oranges from the orange tree.

Sophie hit the two week mark of no seizures.















I just wanted to slip that in there.

Blur

I think I missed posting yesterday for the first time in years. That's an appropriately blurry picture above of Oliver at a place called Sky High which I drove to yesterday morning in the far reaches of the southland. It's a warehouse with about a thousand places to jump on trampolines and into ball pits, and it smells like disinfectant and would probably otherwise be a nightmarish place of children, germs, athletic people and bad music, but since it was a Monday morning, it was completely empty and Oliver ran around by himself for nearly two hours. Four or five tiny children with beleaguered parents trailing them jumped up and down on the trampolines, and at one point a young couple came in together and exercised which made me feel guilty for one tiny moment that I wasn't doing the same, but I recovered in the next moment and continued reading The Goldfinch in my Shiatsu massage chair. I periodically responded to Oliver's requests to watch him, and periodically wondered about the vast differences in people (namely, how an exercise date at a gigantic trampoline place is appealing to anyone), and continued to bury my head in the book, grateful that I don't have to attract anyone based on my love of exercise or be subject to a person who would suggest it as a fun thing to do.

Anyhoo.

I didn't post yesterday because I had no original thoughts, drove approximately 524 miles back and forth into the valley and beyond with the trip to Sky High and then Henry's school and then back to Henry's school for his baseball tryouts, with a trip to the mall and some unbloggable events that left me breathing deeply in my head, a cheerful smile on my face as I bantered with The Brothers and made them dinner, a Golden Globish performance, best actor for comedy and drama. Smoking hot, and not from exercise of any kind whatsoever.

Sunday morning

Complacencies of the peignoir, and late
Coffee and oranges in a sunny chair
And the green freedom of a cockatoo
Upon a rug mingle to dissipate
The holy hush of ancient sacrifice.
She dreams a little, and she feels the dark
Encroachment of that old catastrophe,

from Sunday Morning by Wallace Stevens

Along with the verses of W.B. Yeats' Adam's Curse from which I titled this blog, the above verse is one of my very favorite in the English language. I can't think or say the words Sunday morning without thinking complacencies of the peignoir, and the rest just rolls off my tongue, shimmering. I imagine I first read the poem, which is part of Wallace Stevens' collection Harmonium, inspired in part by the boy I loved who scratched Stevens' words on bits of paper and left them lying around. To Iris, he wrote once on a slip of paper and the cryptic To the Carolinas. The square of paper lay on my pillow. I feverishly flipped through my Wallace Stevens The Collected Poems and found that poem. The pine tree sweetens my body. The white iris beautifies me, I read.

Poetry floats and it makes a shape into which I've often stepped to make a life.

Sophie is dozing this morning, off and on, and as we move into week two of seizure freedom, I think how ill-equipped I am -- perhaps we all are -- to express gratitude, particularly as a non-religious person. I refuse to believe in an active God who has the whole wide world in his hands, who metes out justice to the wicked, or who has a divine and inscrutable plan that accounts for even extreme poverty, suffering children, devastating weather, rape, or epidemics. This lack of faith in an all-knowing god, or a universe that is anything other than constantly changing and chaotic, has prompted me to wonder if a more appropriate response to the despair I've often felt at Sophie's condition would be to go into the street, rip at my clothes and my hair and wail. In a similar way, I refuse to credit an active god with the miracle that is Sophie's two weeks of seizure freedom. I feel a modicum of guilt with that confession, a product, I suppose, of my Catholic upbringing and all the "religious" people that I know who so earnestly pray for me and for Sophie. While I am grateful for the intention, I admit to shirking, inwardly, when people say Thank God! or Praise the Lord! in response to Sophie's break from seizures. In a way, I would like to believe that God had a hand in this, because then I could crawl on my knees to Mecca in ecstasy or perhaps to a shrine. My response could be the dramatic opposite of the ranting and raving despair I conjured before. I could go to church every single day and kneel in adoration and gratitude, as opposed to feeling almost shell-shocked that a good day follows another good day and then another and another.

Here's what I believe. I believe these two weeks were gained, as it were, by my own dogged persistence to obtain CBD for her, by The Husband's backbreaking labor to make the money to buy it for her, by the efforts of the farmers who are growing it for her, and the individuals who have worked to bottle it and get it to us legally. I believe these two weeks were gained by the power of the internet to connect those of us seeking help for our children with epilepsy and by the glorious and chaotic bounty that the universe holds for us, even in spite of our very alive-ness. I believe in coffee and oranges and complacencies as much as dark things around the corner. I believe in the implacable sun.

Saturday Three Line Movie Review

I have read reams and reams of southern gothic fiction, and August: Osage County fits right there squarely in that genre, with over the top drama, family dysfunction, alcoholism, incest and painful humor. That being said, I find southern gothic fiction somewhat tiresome, with the exception of Flannery O'Connor's short stories, and William Faulkner and Carson McCullers' novels, and this wasn't written by O'Connor, Faulkner or McCullers. I was also aware every single moment of this sweeping and somewhat entertaining film that Julia Roberts and Meryl Streep were in the cast and that they were ACTING.

"take black sorrow and make surcease"

Why Isn't It All More Marked

Why isn't it all
more marked,
why isn't every wall
graffitied, every park tree
stripped like the
stark limbs
in the house of
the chimpanzees?
Why is there bark
left? Why do people
cling to their
shortening shrifts
like rafts? So
silent.
Not why people are;
why not more violent?
We must be
so absorbent.
We must be
almost crystals,
almost all some
neutralizing chemical
that really does
clarify and bring peace,
take black sorrow
and make surcease.

Kay Ryan

Happiness is red

I don't know why this photo is so red-toned -- perhaps the light bounced off of Sophie's red pajama top -- but lying with Sophie on her bed tonight was such a strange and quietly wonderful experience that I was compelled to photograph her face, smiling. Sophie's face has lost most of the affect it once had, presumably due to eighteen plus years of drugs and seizures. She rarely smiles and never laughs or cries. Her eyes are expressive, but her brow is generally furrowed and she's at once "out of it" and intensely distant. When other parents or caregivers of the severely disabled talk about how happy their child is despite his or her issues, I wince. I can't honestly say whether Sophie is happy or whether she is even capable of what we think of as happiness. I think she is often content, and I know what intrigues and interests her -- she has an ineffable gentleness and remarkable grace that exude from her tiny frame -- but it's been many, many years since she's showed happiness in the form of laughing or smiling. I was typing at my computer, and she was walking around her room, when I heard what sounded like a chuckle. Henry heard it, too, and he came out of his room at the same time as I walked out of mine. We both wondered what was up, thought she was having a seizure (she hasn't had one in over a week!) and realized that she was lying on her bed, softly laughing. Smiling. When we sat down next to her, her eyes followed us, met our own eyes, and she chuckled again and smiled. It went on for many minutes, and while I thought it might be a type seizure, I wasn't entirely certain. Gelastic seizures are usually far creepier, the smile more a grimace, the laugh a cackle. Is she stoned? Henry asked, and I wondered. She's at the bottom of her first bottle of Charlotte's Web -- there's inconsistency in the dosing, you have to shake the tincture vigorously. It's possible that there's more THC at the bottom than CBD. Who the hell knows? Whatever was happening in her brain in those minutes, though, was good, I thought. I took a photo. Happiness is red. She fell asleep, eventually, her head in my lap, her amazing curls laid across the bed. She breathed slowly and peacefully.

I think she was happy.