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.

What's Louder Than a Jack-Hammer?

The machine used to tamp down dirt in the trench.

The Plumbing Troubles are in their closing days, folks, as the workers are currently moving the dirt from The Pyramids in the Backyard, wheelbarrow by wheelbarrow and shovel by shovel, back to its home. The noise from The Machine that Compacts the Dirt is astoundingly loud, even as I sit here typing. Every bit of me is jiggling, and I can only hope I'll lose weight if I sit here long enough. God forbid I should actually wield a shovel or push a wheelbarrow myself.