Palm, Blue Sky, Bougainvillea

My neighborhood, Los Angeles 2014

Islands and Figs

The sky
on and on,
stone.
The Mediterranean
down the cliff,
stone.
These fields,
rock.
Dead weeds
everywhere.
And the weight
of sun.
In the weeds
an old woman
lifting off
snails.
Near
two trees
of ripe figs.
The heart
never fits
the journey.
Always
one ends
first.

Jack Gilbert

Saturday Soundtrack

This morning when I tried to put on an earring, it was as if the hole in my earlobe had closed up overnight. I kept poking and pushing the thin band of gold wire to no avail so I finally gave it a rest. Later, I tried again and it slipped right through. It made me think of holes in the heart and resistance and mystery and age and surrender.

Someone posted this on Facebook today, and I can't get it out of my head.


Nina Simone: I Want A Little Sugar In My Bowl by ninasimonemusic

Westward Ho

La Brea and Melrose, Los Angeles
May 2014

On the way to my 17th IEP this morning, my eyes leaked tears and I swore to myself as I wiped them away. I won't bore you with the litany of complaints that preceded the tears, many of which are valid and most of which are pathetic, but at La Brea and Melrose, I got into the left turn lane behind a long line of cars and asked for help -- not from God, per se, although I still have vestiges of duty toward that possibility, but rather from the air, the universe, the divine, the whatever. I turned my head to my left and saw what you see above, felt an enormous slap upside the head as they say in the south. Yes, I took that photo while sitting in my car, my head smarting from the force of the blow, waiting through a few red lights, inching along, stripped of impatience, anger, sorrow and panic. Even tears, or tears, even.

That's all I've got for today. The IEP went just fine. When I came home, I lay down on my bed, closed my eyes, thought of other things.

The Self-Cleaning Litter Box Was the Last Straw

That will be the last time I mention or picture cats on the blog. For the record, I do not care about cats, nor do I even like them. I have fond memories of Tigger, my childhood tabby cat, but they're only fond. This afternoon, my friend D texted me this question along with a screen shot of the product in question:

How much money do you make from the self-flushing litter box ads?

Last time I checked, my earnings -- however effortless and passive -- from the old blog were about $101.24, and it seems almost whorish to keep them up. I personally pay no attention at all to ads on others' blogs, and am even offended, often by the overwhelming presence of them on some of those big time blogger blogs. I confess to thinking that maybe one of my posts would somehow go viral, and every click would bring me some cents and before long I'd be buying us all a trip to Bora Bora. Instead, ya'll report on the tedious wait to comment while ads for kitty litter load, and I don't collect a check until my earnings hit $100 which, according to AdSense, hasn't happened since January.

No more ads and no more cats.

Death and Sex, Tigers and Tightrope Walkers

The first dead person I saw was my grandmother in her open coffin when I was twenty-five years old. That doesn't count the shadow of a dead person I might have seen when I was sixteen years old, the flash of blonde hair through the windshield, the eyes, before our cars were irretrievably smashed together. Like I said, I'm not sure that I really saw this or imagined it, afterward, as I recovered. That is another story. I walked up to my grandmother's coffin holding my father's hand tightly. I've never seen a dead person, I said to him, right before we reached his mother and bent over to kiss her cold cheek. I know he wouldn't have said it then, but at some point afterward my father said, How could you never have seen a dead person? I probably saw scores of dead people before I was half your age! That photo above is some dead relative of mine. The little girl, perched on the stool, is my aunt, the woman behind her my grandmother.Perhaps that is my great-grandfather. Evidently, posing with your dead relatives was a common thing in southern Italian culture. And my father apparently posed in much the same way as my aunt, many times during his childhood. They were accustomed to death.

When I show this photo to people, they peer at it and wonder if it's real. Death. We don't like to think about it very often, we do our damn best to avoid it, and when it comes we're shocked, shocked. Sex and death. We're shocked by both. And we certainly don't write about it until we do.

I am an animal today, pacing my cage or circling the tightrope walker above me. She doesn't see me, doesn't remember how she shed her tutu, plunged from the wire, naked, and wriggled into this skin. How do I get back? Where is the Master of Ceremonies? Sometimes we need the proverbial provocation -- the stick, the prod, a crack of the whip, the leap, a roar, talons unsheathed, the naked body devoured or devouring the beast.

Culling

I had to do some culling on my Facebook page this afternoon when a spirited debate got ugly. Can I tell you that I love the back and forth of argument, the challenge of it? I know a lot of you deplore this kind of thing and are much better than me at monitoring the type situation that any fool could see was going to get out of hand. I, on the other hand, have a bit of the fly attracted to shit kind of temperament, and unless it affects me really, really personally, I get a charge taking on anyone. Humor me! My life is often made up of dealing with minutia when it isn't, so when given the chance to sharpen the old tongue -- well -- I leap (backwards on the evolutionary scale, maybe). This exchange was about gun control, though, so the person with whom I was arguing (a self-professed orthodox Christian, I can't help but add) naturally went down the path of liberty and freedom and protection, and somewhere in his poorly executed argument (where he called me intelligent but sadly foolish, a sheeple) assured me that, if necessary, his brave and courageous people would protect mine as we ran away, cowards.

Anywho.

I loved that photo of sheep culling for many reasons, the paramount one being that we really do run in herds, don't we?

Here's a poem, too:

Sheep

The first four leaders had broken knees

The four old dams had broken knees

The flock would start to run, then freeze

The first four leaders had broken knees

‘Why is the flock so docile?’ asked the hawk.

‘Yes, why is the flock so docile,’ laughed the dog,

‘The shepherd’s mallet is in his hand,

The shepherd’s hand is on the land,

The flock will start to run, then freeze—

The four old dams have broken knees,’

The dog explained.

The hawk exclaimed:

‘The shepherd leads an easy life!’

‘I know, I know,’ cried the shepherd’s wife,

‘He dresses me out in a narrow skirt

and leaves me home to clean his dirt.

Whenever I try to run, I freeze—

All the old dams have broken knees.’

‘Well, I’m so glad he doesn’t dare

to bring his breaking power to bear

on me,’ said the hawk, flying into the sun;

while the dog warned, in his dog run:

‘Hawk—the shepherd has bought a gun!’

‘Why is the hawk so docile?’ asked the flock,

‘He fell to the ground in a feathery breeze;

He lies in a dumb lump under the trees,

We believe we’d rather have broken knees

Than lose our blood and suddenly freeze

Like him.’

But the oldest dam gave her leg a lick,

And said, ‘Some die slow and some die quick,

A few run away and the rest crawl,

But the shepherd never dies at all—

Damn his soul.

I’d will my wool to the shepherd’s wife

If she could change the shepherd’s life,

But I myself would bring him low

If only, only I knew how.’

Judy Grahn, via Poetry Foundation

Maggie May

My writer friend Maggie May Ethridge has a short memoir published today and available for purchase on the wonderful new website Shebooks. The memoir is called Atmospheric Disturbances: Scenes from a Marriage and is easily downloadable at this link or on Amazon.

I've been reading Maggie's blog Flux Capacitor for many years and given the honest and intimate nature of her writing, I feel almost proprietary in promoting her writing -- surely you've read it and surely you must if you haven't! I've already started Atmospheric Disturbances and find it difficult to put down -- there's something about Maggie's ability to articulate the pain and joy of marriage, of serious mental health issues, of her own identity as a woman, that makes you feel as if you lived right next door and were carrying on a conversation over many years. The book is both intensely erotic and utterly matter of fact, if that makes sense, and I'm certain that no matter the state of your marriage or whether you're married or not, you will find something deep and wise and resonant for you in this memoir.

Oh, and it's $2.99 -- really.

Click here and download it today!














Shebooks is a new online publishing platform working to promote women in publishing -- in case you've been hiding (and reading) under a rock, you might not realize that women are very under-represented in the literary world. They recently launched a subscription program that is incredibly reasonable -- and yours truly will have a short memoir published very soon!

We the people

That's the last bit of sangria that I drank just up the street and around the corner from my house this evening. I sat at a large booth by myself and drank it, along with some mussels, french fries and a grilled artichoke whose leaves I smeared in aioli.

I wish you'd been there.

I've gone all day without sitting here. I've been looking at the jacaranda trees whose purple flowers hang in grape-like clusters. People love to complain about them -- their rotten smell, the mess they make, the sticky layer of them on the sidewalks -- but I think they're fine. I could drink that purple, roll in it naked and glorious. And no, that's not the sangria talking. It's just me, making purple prose.

Oliver and I are exploring the American Revolution, the Constitution of these United States, the amendments to the constitution, all that we the people. To tell you the truth, reviewing it all makes me a little sad. Such glorious ideals, such purple prose, such disconnection from what we have and know today. Money and influence, the triumph of oligarchy -- it seems, in many ways, that the whole democratic "experiment" has gone to shit. I don't even know how to explain these things to Oliver other than to convey that there's much for his generation to do. I have to bite my tongue not to say what I feel, which is more often than not, we're f**ked. 

I hesitated to do so (because it's so de rigeur to be tired of people's postings on social media), but I posted a link on Facebook to an article from the Washington Post that I read  -- an article where Mr. Martinez, the father of one of the victims of Sunday's murder spree in Santa Barbara, angrily denounced politicians and the NRA for their collusion in refusing to pass more stringent gun laws. Martinez was glorious in his grief and righteousness, and I hope that given his military service and criminal justice background, he might knock some sense into these craven people. I feel compelled to join him, to curse and rail at anyone, anyone, who claims owning guns like the ones used by this young man is part of the liberty we are entitled to as citizens of the United States. The misogyny, the mental health debate, the disaffection of our youth --yeah, these are all part of it, but this gun bullshit has got to stop. As Henry said when he heard that my home state of Georgia had passed laws allowing guns into most public places, Sometimes I hate this country, mom. We the people are stupid.

What are ya'll thinking about? Drinking? Posting? Fire them at me -- just not with guns.

Gnaw your crust

Pray for Peace

Pray to whomever you kneel down to:
Jesus nailed to his wooden or plastic cross,
his suffering face bent to kiss you,
Buddha still under the bo tree in scorching heat,
Adonai, Allah. Raise your arms to Mary
that she may lay her palm on our brows,
to Shekinah, Queen of Heaven and Earth,
to Inanna in her stripped descent.

Then pray to the bus driver who takes you to work.
On the bus, pray for everyone riding that bus,
for everyone riding buses all over the world.
Drop some silver and pray.

Waiting in line for the movies, for the ATM,
for your latte and croissant, offer your plea.
Make your eating and drinking a supplication.
Make your slicing of carrots a holy act,
each translucent layer of the onion, a deeper prayer.

To Hawk or Wolf, or the Great Whale, pray.
Bow down to terriers and shepherds and Siamese cats.
Fields of artichokes and elegant strawberries.

Make the brushing of your hair
a prayer, every strand its own voice,
singing in the choir on your head.
As you wash your face, the water slipping
through your fingers, a prayer: Water,
softest thing on earth, gentleness
that wears away rock.

Making love, of course, is already prayer.
Skin, and open mouths worshiping that skin,
the fragile cases we are poured into.

If you're hungry, pray. If you're tired.
Pray to Gandhi and Dorothy Day.
Shakespeare. Sappho. Sojourner Truth.

When you walk to your car, to the mailbox,
to the video store, let each step
be a prayer that we all keep our legs,
that we do not blow off anyone else's legs.
Or crush their skulls.
And if you are riding on a bicycle
or a skateboard, in a wheelchair, each revolution
of the wheels a prayer as the earth revolves:
less harm, less harm, less harm.

And as you work, typing with a new manicure,
a tiny palm tree painted on one pearlescent nail,
or delivering soda or drawing good blood
into rubber-capped vials, twirling pizzas --

With each breath in, take in the faith of those
who have believed when belief seemed foolish,
who persevered. With each breath out, cherish.

Pull weeds for peace, turn over in your sleep for peace,
feed the birds, each shiny seed
that spills onto the earth, another second of peace.
Wash your dishes, call your mother, drink wine.

Shovel leaves or snow or trash from your sidewalk.
Make a path. Fold a photo of a dead child
around your Visa card. Scoop your holy water
from the gutter. Gnaw your crust.
Mumble along like a crazy person, stumbling
your prayer through the streets.

Ellen Bass

The Fish, The Clouds, The Slipstream

My friends are seeing their first born children graduate from high school this month. They are preparing to take these children to college sometime this summer, and they are, to a one, filled with trepidation, with the bittersweet grief and certainty that in some respects, it's the end. You know where this is going. For a moment this morning, as my writing percolated in my head, as it does, the wonderful phrase what fresh hell is this? flitted through, a cloud, a fish, the slipstream. We are going to a graduation party this afternoon for the oldest child of one of my dearest friends. Sophie would have graduated from high school last May, so this May is the year that the younger children of my friends pass her by. Again. Despite the many years and all the experience under the proverbial belt, despite the strength, thickened even under the armor imposed upon me by circumstance, the return of pain, the pinprick of it (the fish, the clouds, the slipstream) takes my breath away. If I hold it, it grows, so I give it a nod and admire its shimmer, watch it go.

Saturday Three-Line Movie Review

The Immigrant

The reason why I was particularly happy watching this movie was not because it told the sad story of an immigrant from Poland whose luck ran out the moment she hit Ellis Island, but rather because I sipped a fruity draft beer while doing so, having literally run out of the house in the late afternoon to a 21+ theater after punishing both of my sons for -- well -- that has nothing to do with the movie. I love Marion Cotillard's face, and she appears in nearly every single frame of this poignant film, as does her co-star, Joaquin Phoenix who I grew to love after his performance in Her, but that has nothing to do with this movie either. I think the only thing I have left to say is that The Immigrant was beautifully crafted and well-acted but entirely predictable (the sacrifices of our forefathers! the dismal outlook for women! the promise of America dashed!) except for the fuzzy yet brilliant opening shot of the back of Lady Liberty which should have told me right then how it would all turn out.







More 3-Line Movie Reviews

Chef
Cesar Chavez
The Grand Budapest Hotel
Gloria
Labor Day 
Philomena

August: Osage County

Her

American Hustle

One of Those Perfect Poems for Me and My Peeps (especially Denise)

Open Window at Collioure
Henri Matisse
1905

French Chocolates

If you have your health, you have everything
is something that’s said to cheer you up
when you come home early and find your lover
arched over a stranger in a scarlet thong.

Or it could be you lose your job at Happy Nails
because you can’t stop smudging the stars
on those ten teeny American flags.

I don’t begrudge you your extravagant vitality.
May it blossom like a cherry tree. May the petals
of your cardiovascular excellence
and the accordion polka of your lungs
sweeten the mornings of your loneliness.

But for the ill, for you with nerves that fire
like a rusted-out burner on an old barbecue,
with bones brittle as spun sugar,
with a migraine hammering like a blacksmith

in the flaming forge of your skull,
may you be spared from friends who say,
God doesn’t give you more than you can handle
and ask what gifts being sick has brought you.

May they just keep their mouths shut
and give you French chocolates and daffodils
and maybe a small, original Matisse,
say, Open Window, Collioure, so you can look out
at the boats floating on the dappled pink water.

Ellen Bass

Philippe Petit

It's blurry, but that's a photo of Philippe Petit signing a photo of himself (that Oliver had printed out on the computer earlier): To Oliver.  Last night, I took him downtown to our central library to hear the man read from his new book, Creativity, the Perfect Crime. Here's an excerpt from the book:

My attitude as an artist grew out of the realization I'd arrived at from an early age: that my intellectual engagement, my imaginative freedom, had a price, that of the forbidden. Whatever I decided to do, it was not allowed! "Creativity is illegal!" became my byword.

The creator must be an outlaw.

Not a criminal outlaw, but rather a poet who cultivates intellectual rebellion. The difference between a bank job and an illegal high-wire walk is paramount: the aerial crossing does not steal anything; if offers an ephemeral gift, one that delights and inspires.

Despite my outlaw approach -- or because of it -- a network of personal creative principles imperceptibly emerged. Lawlessness doesn't mean lack of method: in fact, the outlaw I became needed method all the more, because I was swimming alone to the island of my dreams. 

 

 

I can't express how thrilling it was for me to see this strange and funny man come on the stage. He wore an orange pullover and khaki pants tucked into weird leather boots. He's of medium height and quite muscular for his age, and if you've seen any of the wonderful documentary Man on Wire, you'd recognize his quirky mannerisms and mischievous smile. In fact, he did less reading from his fascinating new book, and more explaining in a thick French accent and demonstrating his own creative processes. He involved the very small audience throughout the performance, asking us to come up with interesting uses for a plastic fork that we were given when we walked in, and even doing some sleight of hand magic tricks. He was utterly charming and subversive in the best way. 

I did find it hard not to stare at him, consumed by the thought this man walked on a wire between the World Trade Center towers. Don't ask me why this has always thrilled me to the point of obsession. I'm not a risk taker. I hate roller coasters and heights make my knees quiver. There's a tightrope walker and trapeze artist in one of my favorite movies, Wim Wenders' Wings of Desire. I often wear a necklace with a tiny medallion on it of a tightrope walker holding that long balance stick. Come to think of it, it might be Petit between the Towers. I guess I could make metaphor with my obsession -- why it resonates so much with me.  I've done that plenty of times even here on this blog. 

The funambulist is a person who walks the wire or dances on the wire, messing with boundaries, balancing dark and light, acknowledging the fine line between them. As the mother of a child with such severe disabilities, who is so utterly dependent upon me, I am a funambulist of sorts, alone and agile. 

But enough of that.

Oliver and I were smitten by Philippe Petit and grateful to live in such a fine city where we had the opportunity to see this great artist in such a small and intimate space, for free. 

He's legit, Oliver declared after meeting Petit and shaking his hand. When we walked out into the softly lit evening city, we felt enchanted.

Sophie and Oliver

I asked Oliver to sit with Sophie this morning while I quickly got ready to take her to school. I heard Oliver talking to Sophie, asking her questions, insistent that she answer yes and no with varying tones. I took these photos as a testament to their conversation.

Cracking Up in the Best Way

to Sandra

Oliver and I made that little bamboo fountain and placed it on a tile table right next to the lavender fields (I say fields because it's sort of incredible how many lavender are growing -- it's actually just a patch). The fountain doesn't have a strong motor, so the sound isn't as loud as I'd like, but it's peaceful and very beautiful and we definitely need peace and beauty around these parts.

You know how everyone likes to bash social media and go on sabbaticals and say how much they hate it and how it's ruining their children, and it's a time suck and all that jazz? I say bullshit. During these trying times, I've never felt more connected to certain people -- some of whom I only know online. If that sounds pathetic to you, know that I have a wide circle of human fleshy friends, and I love each and every one of them. I also have a lot of family, and I love each and -- well -- most of them, too. I am, in fact, a rich person as far as my social life goes. But these people I've met on the internets? I'd like to hope that the feeling is mutual, but those certain someones really do sustain me. After walking a much more chipper Sophie all the way to CVS to pick up her medication, and finding out that they processed it wrong and that our co-pay is huge and it's for one of the drugs that she's just ON and we're trapped to being ON it despite its inefficacy because of the hideous nature of weaning/withdrawal -- well, I walked home crying the whole damn way behind my big purple sunglasses. I had myself a bit of a pity party where I cursed pretty much everything and everyone, including those who think I should welcome Jesus into my life. I had a funeral in my mind for what it means to be alive in the 21st century and beholden to big pharma and capitalism and family and marriage -- well, you get the gist. When I got home, I checked out the website for the upcoming Epilepsy Pipeline Conference that I'm attending in early June, where I'm participating on a panel about medical marijuana, and I saw my name listed alongside the big honchos of neurology and Big Pharma, and all I could think was that I need a title, something to convey my rage and despair and love and pride in this life I'm leading with my children. I thought Elizabeth Aquino, FUCK YOU, might work, and I told one of my friends from the etherworld, and she suggested Elizabeth Aquino, Messenger. That cracked me up because it was so weird, so I countered it with Elizabeth Aquino, Daughter of God and then she said, Elizabeth Aquino, Messenger from God.

And then I cracked up laughing, the thought of me sitting straight-faced on that panel telling my story as a messenger from God. My earlier tears, lately just pricking at my eyes seemingly all day long, retreated, my anguish was stilled, I went and sat outside in the sun, heard trumpets in that water in that little fountain, smelled the lavender in the breeze, all of it, all of it, a message writ large of LOVE.

Vehicle Repairs

That's a sign from the parking lot of the Arclight Cinemas, the very fancy movie theater where I go to see movies when I go to see movies.  I used to joke around with my friend D that one day we'd become bank robbers, and lately I've felt like busting out. Hitting the road, getting the hell out of Dodge, starting over, forgetting the past, to hell with the Zen stuff -- you know, right? Or not. Maybe I'm just sort of simpatico with Sophie, who must feel like peeling off her skin as that drug is eliminated from her system. Wait. Who am I kidding with that presumption? While I battle, often, with the mixed identity thing -- where does Sophie begin and I start or where do I end and she begin? -- she is on her own path, and as much as I like to think I'm in charge, in control, I'm really just walking beside her. Except for when I am forced to make outrageous "choices" and decisions for her general welfare, like putting her on those 21 (yes, I mis-counted, and she's been on 21) drugs despite the sick feeling in my stomach each and every time. There's a lot of f**keroo bonzai to process here, so humor me. I've always had a problem with Authority. Sophie seemed better, today, thank Jesus -- went off to school with a bit of spring in her step. This is to be expected, evidently, the on again off again nature of the waning wean days. We upped the CBD in hopes that it'd help with the detox, so let's see what happens.

In the meantime, buck authority.

Drink all you want in a parking garage.

Loiter with your friends and rotate your tires.

Repair your vehicle.

Hell, exercise your body and your mouth.

Peonies and Benzos

Yeah, I know. Those peonies.

I was all Wallace Stevensy the world is ugly and the people are sad and then I walked into the dining room and saw them. There aren't even words to describe such a sight.

Thank you for your kind words and emails in response to my last post. I did a lot of digging around on the interwebs last night and read a whole lot more about benzodiazepine withdrawal. There wasn't much that I didn't already know, and what I knew was that it's all fucked up. It's insane that these drugs are used at all -- and I mean at ALL, and I know there are a lot of people out there who think a little bit of a benzo can nip anxiety right in the bud. Smoke some pot, people, find another class of prescription mind-numbers, in lieu of popping the benzos.  And when people worry about the amount of THC in marijuana, about not wanting children to get high (as opposed to the real concern that THC at certain levels can exacerbate seizures), or when physicians worry about the long-term cognitive effects of marijuana on the brain -- holy shit. Take a look at what the benzos do and the level of suffering people -- children -- experience when you take them off.

I'm assuming that Sophie is going to have really bad days, off and on, for maybe even more than a year. I'm going to have to push through my rage about this SIT U A SEE OWN, but it's going to be difficult to not constantly compare the clusterf**kery of the current mindset in epileptology to what's been going on with the approved AEDs for all these years. I'm going to keep on banging on my drum, too, until the media takes it upon itself to do some kind of story on what the alternative to medical marijuana has been like for many kids. Like mine. And yours.

Humor my rants for the time being or shut me up with peonies.

Jesus! and the Benzo Wean

The Annunciation

Fra Angelico

Florence, Italy

I've never gotten any comfort from praying to any of the gods, including Jesus. Oh, I take that back. There was a time when I got down regularly on my knees in the middle of the night and plead for mercy. And, yes, I'm aware that faith has little to do with appeals and entreaties being granted or denied. I was raised a Catholic, loved the saints as some little girls love horses. I saw dancing spots in church multiple times, was just about to faint before boredom crept in. I read Simone Weil in college. How many of ye with little faith or a lot of it have read her? I saw the world in a grain of sand or something like that one night about six weeks into my first year in college, lost myself in eternity and bliss, and no, I didn't do drugs. I had a near Stendhal Syndrome-like reaction to the frescoes at San Marco in Florence, Italy, including the several Annunciations of Fra Angelico. That being said, I'm not so much an unbeliever as someone who doesn't believe. In that way.

All of this is to say that I sat by Sophie on her bed tonight and looked out the window as the sun went down. It's day fourteen of a benzo wean, and things are hard. Not as hard as they were in the past, before the cannabis, but they're still hard. Sophie is drooling a lot, and she doesn't want to eat very much. When she does eat, she chews so slowly, if at all, that I feel a frisson of fear that she's developing another round of ESES (and because I don't want to exacerbate this fear, I'm not going to type it as you can do a search on the internets or this old blog and find out plenty). Then I decide that it's the benzo wean, and I feel rage. I've read all the bad things happening to good people stuff, God is beside you, with you, around you, within you. If prayer is breath, the in and the out can tamp down rage, but it's my experience that Jesus doesn't come and take it. So, ye of faith, I don't feel like a good person when I feed Sophie during these times. She holds food in her mouth and slowly, agonizingly moves it around. She lets it fall out. I have to pour liquid down her throat. I am impatient and maybe even mean in my thoughts. There's despair and ruination, and I'm certain Sophie knows this. Maybe not certain, but there's that air that I'm breathing out. It can't be good for her.

Mercy.







Here are the symptoms of withdrawal of benzodiazepines that I took from the website of the NYU Comprehensive Medical Center last night:

An important concern when people with epilepsy take clobazam or other benzodiazepines is the risk of “withdrawal seizures” or increased, repetitive or more severe seizures if the medicine is reduced or stopped. Withdrawal symptoms usually begin upon stopping the medicine and can last for up to 8 to 10 days. Early symptoms might be agitation, anxiety, restlessness or even fast heart rate, though seizures might begin immediately as well. The longer the person has been taking clobazam and the higher the dose, the greater the tolerance and therefore the higher the risk of withdrawal seizures. Even small, gradual dose reductions can temporarily increase seizure activity, but your doctor may suggest these changes since the long-term decrease in effects like drowsiness and depression often makes this worthwhile.

Besides increased seizure activity, other symptoms of withdrawal include:

• drowsiness
• dizziness
• poor coordination
• drooling
• restlessness, aggression, anxiety or agitation

Tell your doctor if you notice any of these symptoms when your dosage is being reduced.

Are there long-term side effects of taking clobazam ?

Clobazam and other benzodiazepines are the medicines that are most likely to cause psychological dependence. When someone takes a benzodiazepine at a certain dosage for more than 2 to 4 weeks, the body (or specifically, the brain's receptors for the neurotransmitter GABA) becomes accustomed to it. Then if a dose is missed or reduced, a withdrawal process starts, characterized by:

• anxiety
• increased heart rate
• tremor
• generally feeling unwell

Taking another pill relieves all of these symptoms, confirming the person's belief that he or she "needs" the medication. This is a very dangerous cycle, since long-term use can cause long-lasting changes in the brain's GABA receptors that lead to significant problems such as impaired cognition, decreased motivation, and depression. In this setting, rapid dose reduction can cause severe symptoms of anxiety, insomnia, and illness, as well as seizures.

In many of these cases, very gradual reduction of the benzodiazepine (often over many months or years) can lead to a dramatic improvement in attention, concentration, memory, and mood without worsening the seizures, insomnia, or anxiety for which the medication was originally prescribed. This gradual reduction must be performed under the guidance of a doctor.

- See more at: http://epilepsy.med.nyu.edu/treatment/medications/clobazam#sthash.MEK6WErd.dpuf

Peonies and Peeps

So the heat wave in Los Angeles has broken, and the breeze rustling the palms is decidedly cooler. It's glorious outside, which is a good thing because I'm off to yet another baseball game. After I dropped Oliver off for his pre-game practice, I lowered the windows in my sexy Mazda and cranked up my song du jour, the Byrd's Here Without You, those harmonies, the memories it stirs up, what ties us to another.

It's all a big, fat mystery. We're mules with burdens and impossibly free.







P.S. My peeps: I changed my comment form to a pop-up window. Please let me know if that helps the situation.

Divine Comedy

Dante in Doubt by Salvador Dali

illustration from Dante's Divine Comedy 

What else is there to do on a Monday morning but begin again? I sit on Sophie's bed and listen to her breathe. I hear the men working across the street, ripping down a house only to build it back up. Our new toilet is like a throne, higher than the one before. You're all shrinking, Henry commented to me and to my friend. Why are we so insistent on being tall? I hear a rustle in the palms in my backyard and watch two hummingbirds quarrel. I remember to breathe in to calm myself and to breathe out and smile. I doubt the existence of anything but that.

A New Tradition: Sunday Selfie

Bad-Ass

Perhaps, Defeated Ass

Cry Uncle Ass

(fleeing the ship momentarily for dinner with girlfriends. Wish you were here.)

The Post-Trader Joe's Life

This happened:

That's what happened while I innocently meandered the aisles of the store, planning on the shrimp and vegetable stir-fry I was going to make, and texting a friend about how I was ready to drive off the rails. While I purchased a bag of cinnamon and apple "fries," I was also wondering if the reason why my derailment seems imminent is because I haven't visited Dr. Jin in more than six months. Maybe it's just a matter of balance and some herbs, I thought, heroically. Yes, heroically.

Back to the window.

Henry was doing his usual lacrosse practice of throwing the lacrosse ball against the side of the house (above the window) over and over and catching it. Except for this time when the ball crashed through the window and shattered glass flew everywhere in the dining/homeschool/cluttered room, including all over Oliver who was preparing his lemonade stand:

He evidently cried for a moment in shock and fear (which was, I'm certain, resoundingly mocked by his older brother), but he's laughing in that photo because the first photo was snapped with Valentine in the background, peeing, and as I'm slightly frazzled and mad (in the unbalanced sense of the word, not angry) from walking in on the shattered glass scene, a very grumpy chef, an ineffectual Teenager trying to clean up the larger glass, and a seizing daughter who appears to be acting much as she always does right after I declare that she's doing just fine weaning from her benzo,  I began to chant:

Milk, milk, 
Lemonade,
Round the corner,
...

Perhaps that's inappropriate and not the best way to market The Entrepreneur's wares.

Especially given this a few yards away from his stand:

Yesterday, we had to have a new one installed and where else does one put the old one? I am wondering whether it could be a planter or even one of those charming little libraries that dot the suburbs -- I've been dying to make one.

I have thus cleaned up glass, vigorously vacuumed all the rooms of the house (because why not while I'm at it?), bathed my seizing daughter while musing about the cost of redoing the bathroom so that it'd be safer to give her a bath (which moved into how am I going to do this? how am I going to do this?), put Sophie's seizing self safely in her chair post-bath, put the groceries away and trimmed the peonies that I bought in a reckless moment at the store, thinking that peonies might keep the train on the rails, peeked in on The Teenager to make sure that he's studying for finals and not playing games.

 My thoughts have progressed from how I'm ready to drive off the rails to a bemused wondering about the extraordinary life I'm living as a quite ordinary person.  And it's just too much, sometimes. Too, too much.

Saturday Three-Line Movie Review

Chef

So, if you're into food and really good music, sweet-looking children, the ubiquitous Scarlett Johannson and the tattooed, disheveled,and very sexy Jon Favreau, by all means you will enjoy Chef, a light-hearted look at what it means to be a chef in this day of tweeting, celebrity reality shows and the all-consuming nature of the industry itself. As the wife of a chef and a former professional cook, though, I'll also add that you need to believe that chefs are really just sweet and lovable under their crazy exteriors, and that redemption lies in food trucks and doing what you love. Oh,  and I'm Sofia Vergara.





Other 3-Line Movie Reviews:

Cesar Chavez
The Grand Budapest Hotel
Gloria
Labor Day 
Philomena

August: Osage County

Her

American Hustle

An Open Letter to Councilman Tom LaBonge and Carolyn Ramsey, Chief of Staff

Dear Mr.LaBonge,

I am writing you this letter in an emotional state and understand quite clearly that writing anything in an emotional state is often not the wisest course of action when one is trying to get something done. However, as a mother of a severely disabled young adult and two active teen-aged boys, I get things done regardless of emotion. Today, for perhaps the hundredth thousandth time, I took my daughter for a stroll up to a neighborhood restaurant on La Brea. We live in the Hancock Park Adj. neighborhood, a neighborhood of near-one hundred year old modest California bungalows housing diverse families, the elderly and, in our case, a disabled nineteen year old.

As you can see in the above photo, taken one block from my house, many of the curbs are NOT cut away to provide access for those using wheelchairs. I have lived in this neighborhood for nearly eighteen years, and on this particular street for fourteen. Curb cuts are random in our neighborhood and have been for years, despite repeated calls and inquiries about getting it done. Is there a method to the madness of how these things are done?

It's one thing to struggle with a stroller and a small child up and down these curbs -- I would say that in that case, it's a convenience to have the cuts. However, maneuvering an 80-pound individual in a 75 pound vehicle up and down, in some cases, an 8-inch curb is near impossible. A person with disabilities in a wheelchair would probably find it impossible to do so. The alternative, which I do regularly, is to walk in the street and just take my chances that the cars in both directions will give me room, that someone parked on the side of the road won't open his car door into my daughter or that the person driving fast in his luxury vehicle won't honk his horn and make an obscene gesture while I do my best to stay out of his way. Get out of the road! he cried, today, as I struggled over potholes and dodged those prickly seedpods that litter the streets this time of year.

Hence, my emotion. I thought, today, that the construction just down the street, the herculean Subway to the Sea Project, will probably happen faster, and we've been told that the work there will be completed in ten years. I sure hope that when I'm nearing sixty years old and can hop a train at the end of my street to ride to the beach that I'll be able to get my near-thirty year old daughter there, too.

Please, Mr. LaBonge, get it done. Get the dang curb cuts put in throughout the neighborhood, not just randomly (particularly in the -- ahem -- richer parts of the neighborhood, where I've noted they have been completed for years).

Please, get it done.

Respectfully, your constituent who voted for you,

Elizabeth Aquino
Los Angeles

Dispatch from the Revolution: Cannabis Update

Sophie continues to do remarkably well after nearly four months on Charlotte's Web. She goes weeks without any truly discernible seizures (she used to have from 1-5 tonic-clonic episodes and many partial complex/absence a day), and the breakthrough ones are mild and short. She has no more clusters of myoclonic seizures (they used to happen several times a day and lasted, sometimes, for 45 minutes or more). We have done three weans of her Onfi, the benzo that she's been on for six years. We've reduced the drug very slowly, about 33%, and the difficulties she had formerly, whenever we weaned a benzo, have just not happened. Yes, she's had some "bad" days when she appears uncomfortable and agitated. She has had some mild withdrawal seizures on around the tenth day of the wean, but for the most part she is good, and I attribute that good to the presence of cannabis in her system.

I listened to a podcast the other day of Dr. Orrin Devinsky from NYU. He was quite positive about cannabis and epilepsy, albeit cautious, and seemed far more understanding of families' desperation and desire to obtain the medicine for their children with refractory seizures than he was a few months ago when he wrote an Op-Ed in The New York Times. He even went so far as to state how "promising" the treatment looked. The Epilepsy Foundation of America has been surprisingly supportive of families (part of its charter and mission, after all), so I feel hopeful, too, about that. I type all of this, though, with reservation, because I also sense a growing rift between neurologists (The American Epilepsy Society), who remain obdurate and arrogant, and families, and this rift is sensed as a rumble, a muttering, an antagonism inherent, it seems, in the industry (because let's face it, medicine as it's practiced in this country is as much if not more an industry than a healing art), despite all the efforts for "family-centered care." I've heard of neurologists, still, completely disdainful of this therapy, towing the party line of testing, testing, testing, with a couple arrogant dismissals of "anecdotal" evidence.  And I've heard from several people whose neurologists are downright abusive, going so far as to call some parents uncompliant and reporting them to "authorities," making it difficult to get traditional medications for their daughter and other horror stories.

Anywho.

Here's Sophie's story -- call it anecdotal or call it Truth. It makes no difference to me what you think, what they think.

I know it's truth.

Sophie never had a day free of multiple seizures for the first nineteen years of her life and was subject to all manner of approved double-blind tested placebo controlled and studied drugs. Many of these drugs were not approved for use in children under the age of seventeen and most were not studied for long term use in combination with multiple other drugs. She was on nineteen different medications, was evaluated for surgery, had two six month trials of the ketogenic diet. She suffered from serious side effects from nearly every medication and endured considerable suffering when medications were withdrawn because of inefficacy (including one rare complication called pseudo-tumor cerebri -- look it up, not for the faint of heart). She took medications to mitigate side effects, went through several periods of anorexia and sat for hundreds of hours with an IV drip of immunoglobulin. She began taking Charlotte's Web in late December of 2014 and within a few weeks of treatment had periods of seizure free days for the first time in her life. Side effects noted were smiling, alertness and relaxation. When we knew things were looking "up," we began a slow process of weaning her from one of the two powerful anti-epileptic drugs that she's been on for years (and only on for years because we were afraid to withdraw them and put her through that shit). So far, she's off more than 30% of a powerful narcotic and continues to have large stretches of time free of debilitating tonic-clonic seizures, partial complex seizures and myoclonic clusters. We have not used Diastat, the Big Gun, in months. We will continue to slowly withdraw the benzo and then, hopefully, the Vimpat. If she continues to do well, the world is our oyster, no? Or is it the pearl?

How's that for anecdote?

Armageddon and Cake

Salted Caramel Cake

I made one yesterday from a recipe in a magazine. It called for 8 yolks and 4 eggs, nearly four cups of sugar and 1/2 pound of salted butter for the cake alone. The icing was three cups of brown sugar and two cups of confectioner's sugar and more than a pound of salted butter. It had five layers with more than a cup of icing between each layer. I know -- that's not even sort of gross.  I felt guilty making it, especially given that it was for a crowd of fifty-somethings. I guess there's a case to be made that given the fires just to the south, the crude oil spillage in a nearby neighborhood (where, evidently an above-ground pipe burst and crude oil was knee-deep in some places), the outrageously dry and hot conditions here, the insistence by many that global warming is a liberal hoax, the Clippers fiasco, the rumors of Beyonce and Jay-Z having trouble -- well, why the hell not eat Salted Caramel Cake? And throw some rose petals on top that you've plucked off a wilting rosebush as a final devil-may-care gesture.

Let us eat cake.

Brother "Conversation," No. 457***

The Brothers were instructed to make dinner -- cook the chicken for the tacos and dispense the sides -- salsa, grated cheese, shredded lettuce, refried beans. Oliver is a Master Griller (I'm not joking), and Henry - well -- he always looks glamorous. When faced with the plastic top covering the container of salsa, this conversation ensued. Add in irony and humor, because that was the general tone.

Henry: Mom, how do I open the salsa?

Me: Henry, you get a small knife and pierce through that plastic and then peel it off.

Henry: I'm gonna starve in college, right?

Oliver: Henry, you're so bad in the kitchen.

Henry: Oliver, shut up or I'll kill you.

***The word "conversation" in quotes is intentional.

The Distance Between Things

I dabbed a bit of ointment for canker sores on the white flesh of Sophie's inner lip this morning while she groaned and squirmed. I had to hold her down almost roughly, and that reminded me of holding her down years ago when we stuck those needles in her leg that delivered the drug that was supposed to stop her seizures but didn't. I gave her an Advil for the pain and forced liquid down her throat. These things are harder to do than you think. Later, as I sipped my coffee in a yellow cup, I watched through the still wavy panes of glass in the dining room a bird hustle out of the bougainvillea that grows wild through the cracks of the rickety fence that we share with the neighbors. Tears leaked from my eyes because I was thinking of those shots we gave her and our growing trepidation that the reason why she seized was because of those shots we had given her one month before, the shots that were supposed to guard her from terrible diseases. We could never be sure. Henry was our next baby, and you must understand that we couldn't give him those shots because we were afraid. Maybe you don't understand, and I understand that. Why would you? A tiny plastic figurine in your cocktail sits perfectly in the sea glass some kind person gathered on the beaches in the Pacific Northwest. I will take Henry to the doctor in less than a month, and we will begin to give him those shots, and I will still be afraid. There's only a small distance from a yellow cup of coffee to that kind of fear, a drowning. You should understand. Fear is flung off with anger only sometimes and usually it's rue that dispels it. What if Henry had a seizure following his shots, my mind said next. Would you write a post on it and call out those who had mocked you and others like you? It's a short distance from The Mermaid in her glass dome to Dante's Inferno, right behind her.







***I've decided to drop the comment feature for this post, because to tell you the truth, I don't want to read them. Thank you for your patience.

It's hot

When you're squinting even in sunglasses and the temperature's in the triple digits, when the wind is blowing hot and dry and you're feeling angry for no reason, it's time for something to happen. In the south you'd lie down someplace cool or in the shade, sweat beading on your neck. Languor. Out here, in the desert, you bare your skin and feel flayed. You want to make trouble, kick up some dust, strip the steam out of steamy, expose yourself. Even the crows are silent, leaving you to murder.

A Dinner Invitation for Realm of Caring and Access to Cannabis with Updated Links!

OK, folks. You asked, and I'm here to deliver. Each of you has been a part of this very long and crazy journey to find something, anything, to help Sophie's seizures. Many of you have been reading this blog when I began what I then jokingly referred to as my Drug Mule days -- the beginnings of my research and then slow process of obtaining cannabis for Sophie. I know most, if not all, of you held your breath when we were one of the fortunate few families to obtain Charlotte's Web, and all (well, maybe not all because I know there are many dubious neurologists out there!) of you rejoiced when Sophie's seizures began to diminish and then completely stopped for weeks at a time.

Realm of Caring is the non-profit foundation, headed by Ray Mirzabegian and a myriad of volunteers, who have made this all possible -- for Sophie and for the few (very few) others who had the great good fortune to see success with Charlotte's Web. Did you know that there are currently over 800 families on Realm of Caring's waiting list. That's right. 800 families are literally waiting for possible seizure freedom and, in some cases, it's a matter of life or death. Even this past weekend, a young girl whose parents were instrumental in getting the conservative Wisconsin legislature to pass a bill making medical marijuana legal, died in her sleep, and this is happening all over the country.

Here's what you can do. You can click on this link and either buy a ticket to the upcoming fundraiser or make a donation. The purchase of your tickets and any donation are tax-deductible and will help fund a Charlotte's web grow which will provide medicinal oil to 800 children currently on the California waiting list and give them an opportunity to grow, improve and enjoy their lives as well as their families.

Here's the link again:

http:www.ticketor.com/stage1production

Here's a link to make a donation of any kind to Realm of Caring.

Do it, please -- any amount. Do it for Sophie and the hundreds of children like her.

And please let me know if you buy a ticket and plan on coming to the event, because we for sure can sit together!