Saturday, April 18, 2015

A Books & Bakes Chechen Feast

That's what I looked like several hours before last night's Books & Bakes, mainly because Saint Mirtha wasn't there yet to help me and also because what the hell was I thinking when I decided to concoct a Chechen menu?  Here it is:

Moscow Stinger

Eggplant Walnut Dip with Lavash
Sliced Radishes with Yogurt
Dates and Almonds

Yogurt Cream Soup with Herbs

Vegan Stuffed Grape Leaves
Beef Manti
Chechen Peppers and Mushrooms

Halvah Ice Cream
Dark Chocolate Sauce
Salted Peanuts

It was actually not entirely Chechen, but I stuck pretty close to the cuisine of the Caucasus with some Russian and Armenian borrowings. The Moscow Stinger was a very bracing cocktail made of vodka and white creme de menthe, shaken and poured over ice. I ran around Los Angeles visiting several liquor/package stores to find the white creme de menthe. I am being perfectly honest when I say that I have never been to a liquor store in Los Angeles -- not because I'm chaste or a teetotaller, but  -- you know -- any liquor that I drink is usually already at my house and has been there for at least fifteen years or someone brings it to a party. I found a very dusty bottle of the stuff at a place on Melrose and Vine, and it cost $7.99. Frankly, it might have been mouthwash (and I imagine mouthwash costs a hell of a lot more), but the combination of the vodka and that was bracing and very refreshing. We all had a swig or two while eating the eggplant dip and admitted that prior to reading A Constellation of Vital Phenomenoa, none of us had the remotest knowledge of Chechnya beyond the vague wars fought there and the recent brothers who bombed the Boston Marathon. If you haven't read Anthony Marra's novel, you must. It's a novel in which you can get lost -- lots of tragedy and drama and horror -- but it's also a novel of hope and dark humor. You will learn about Chechnya. It does feel a bit odd to be celebrating the food of the region and exulting in Marra's writing, particularly as the events and story described are so brutal and so far removed in any real way from our own. We talked about that, about the presumption and pretension of it, about the relatively pampered lives we live here. There's no getting round that discomfort, I guess, and I don't have any wise words to do so. I am grateful, though, to love like I do the words of others, for my eyes to be opened to places and situations that are different, true, but that also shed light on what it means to be human. 

That's a whole lot of cliche and folderal, though. Here's the food:

Denise wrote a wonderful blog post about last night. Read it here.

Friday, April 17, 2015

Gulliver's Travels

Still Life with CWHO and Frida**

"Absolutely,"  Christie said. "I will crack down and not permit it."

That was the answer Governor Chris Christie gave to a conservative Iowa radio host when asked what he'd do about marijuana if he were to become POTUS. He was referring to the "flaunting of federal law" that is going on in Washington and Colorado. He said a whole bunch of other stuff, too, most of which is not even true.


This whole thing is confusing on so many levels, isn't it? On the one hand, you've got conservatives bemoaning marijuana as the evil weed, a "gateway drug" that leads to debauchery, addiction and moral decline, and on the other hand, you've got conservatives crying out about the evils of government over-reach and grand conspiracies against the people. Then there are conservatives who believe that marijuana is a gift from God thrown up against scientists who believe there isn't enough research. Thrown into all of this are families desperate to try cannabis for their children or themselves as they're suffering from not just epilepsy, but autism and multiple sclerosis and Parkinson's and lupus and cerebral palsy and cancer. You've got Rand Paul supporting the cause, a guy who believes in the supremacy of the individual at any cost, but there's Chris Christie hell-bent on stomping it out. You've got Obama waffling around about the issue, and then you've got -- well -- me. 

I stand for full legalization of marijuana for both recreational and medicinal use. Yeah, and I haven't smoked or ingested the stuff in about thirty years. I went through different gates, too, than the ones referred to by that poor Chris Christie, none of which involved drug or alcohol debauchery.

I was going to tell ya'll about the history of marijuana -- how it was used for thousands of years not only as medicine for a host of diseases, but also for textiles and military uniforms and navy ships. It was one of this country's earliest crops and was used for pain, as a sedative, as an anxiety medicine, as an anti-inflammatory, as an anti-epileptic and so forth right up until the 1930s when the Powers That Be conspired to put it under. Those powers were William Randolph Hearst, Andrew Mellon and Charles DuPont. Hearst owned all the timber in the land, as well as the newspapers that needed wood pulp that needed DuPont's bleach to make newsprint and paper. Mellon was not only the head of the biggest oil company in the land but also, conveniently, the Secretary of the U.S. Treasury. Down in Mexico the people were brown and dirty and Less Than, held "up," or down (according to how you see it) as examples of what could go wrong with hemp/marijuana. Hearst's newspapers thus reported the evils of this drug, how it turned people into rapists, thieves, drunken louts, dirty Mexicans. In 1937, The Marihuana Tax Act was passed which destroyed the hemp industry. In 1938, the movie Reefer Madness exploited the image of marijuana as a drug that turned youth into crazy rampaging degenerates. And in 2015 we've got big ole Chris Christie spouting off about the moral dee-cay of our youth.

Well, I did just tell you a bit about the history of one of the world's oldest cultivated crops (12,000 years old, to be exact). 

These are almost Swiftian times, are they not? Gulliver comes to mind and the most clever satire one could imagine. 

Thursday, April 16, 2015

Safe Option for Seizures: Here's Something You All Can Do

A few minutes of your day can help to change things in this crazy old world. Here's what you need to do:

Watch the PSA

Recognize that it's a step forward in the ongoing medical marijuana conflict

Think about what Sophie would be doing if she didn't live in California.*

Think about what I'd be doing if Sophie didn't have CWHO.**

Think about the thousands of children and adults who need to have access to this oil and the right to try it.

Contact your federal representatives and tell them to support H.R. 1635.

Thank you very much.


Elizabeth and Her Tiny Little Mother Mind™


*   Most definitely seizing and drugged up with a higher risk of SUDEP
** Most definitely even more stressed out and ruined by enduring twenty years of watching seizures and giving 22 pharmaceuticals that don't work. Hopeless. I'd like to say that CWHO for Sophie has made me thinner and more beautiful, but that wouldn't be truthful. It has made me smarter, though, and more relaxed and hopeful.

Wednesday, April 15, 2015


Oliver has learned Morse Code, downloaded an app to "do it" and walks around the house communicating with us. The only trouble is that each dot and each dash on the iPad makes the most godawful, annoying sound you can imagine. This afternoon, when Sophie came home from school, he insisted on showing it to her, and I gladly obliged. Yes, I said, go in her room and sit with her and demonstrate. I myself retreated to my own room, closed the door and drew sustenance from the McMansion drill sounds coming from out my back door.

Dot Dot Dot
Dash Dash Dash
Dot Dot Dot.

Paper Flowers

I sit every morning now at my computer with the sound of heavy machinery, including drills, in the background as the workers continue to construct the latest McMansion in the neighborhood. Today, my spark came from a Martha Stewart email in my inbox, instructions on how to construct paper flowers, and I'm compelled to wonder what a life would be like doing so -- stopping, if not to smell them, than to cut and fold and twist into shape, not unlike those guys behind me who are basically just doing their job, not destroying the neighborhood. I haven't felt particularly inspired of late -- too busy with the ghostwriting project, homeschooling and dealing with the unbloggable. I'd like to get back into it, though, wade through paper flowers and machinery and build something of my own.

Tuesday, April 14, 2015


The impulse to separate some groups of people from the category of the human, is, however, a universal one. The enemies we kill in war, the convicted prisoners we lock up for life, even the distant workers who manufacture our clothes and toys -- how could any society function if the full humanity of all these were taken into account? In a decent society there are laws to resist such dehumanization, and institutional and moral forces to protest it. When guards at Rikers Island beat a prisoner to death, or when workers in China making iPhones begin to commit suicide out of despair, we regard these as intolerable evils that must be cured. It is when a society decides that some people deserve to be treated this way -- that it is not just inevitable but right to deprive whole categories of people of their humanity -- that a crime on the scale of K.L. becomes a possibility. It is a crime that has been repeated too many times, in too many places, for us to discuss it with the simple promise of never again.
from The System, by Adam Kirsch in The New Yorker, April 6, 2015 

Oliver and I are speaking this afternoon to a class of fifth grade students at a very exclusive and progressive private school in Los Angeles. The students are studying social injustice and disability, so our talk will be about our experiences with disability. We plan on talking about how people perceive those with disabilities, how the history of disability rights has affected the lives of the disabled and how work continues to be necessary to ensure that all human beings, regardless of their intellectual or physical capabilities are treated with and live a life of dignity. We will, of course, be talking mainly about our own lives with our beloved Sophie -- how her unique and sometimes difficult life has transformed and shaped ours. We'll be talking about #dontstarepaparazzi , too, in the goofy, lighthearted way that sustains us.

Sunday, April 12, 2015

Thinking About

Today is the day that ended with me getting my boys back, and I'm glad about that. I puttered around today, cleaning up, organizing my crap, reading some magazine articles, researching Chechen food for the salon on Friday and mulling over the fate of the universe, albeit the universe of my own tiny little mother mind.This would include my observations about the first episode of Wolf Hall on Masterpiece Theater (no, I did not read the book, but so far so good) or rather the period that is depicted (16th century King Henry the 8th/Catholic Church/Church of England and all those shenanigans) and how really ridiculous most men look in history when they're striving for power and territory and keeping down the women-folk and the poor. I'm in, though, particularly as the actor who plays Cromwell bears a striking resemblance, even in that sixteenth century get-up, to Dr. Paul Weston, the shrink from In Treatment with whom I carried on an affair, at least in my tiny little mother mind.

I also had an interesting conversation with a mother who is very active in the movement to defeat the proposed bill here in California that would make every single vaccination mandatory for every single child in the state unless they have a medical exemption or else they will not be allowed to go to public school. I definitely do not support this bill for various reasons, some of which are kind of, sort of, connected to even the patriarchal values that were demonstrated even farther back than old Henry the 8th and his ignorance that it was his mighty sperm that lacked the necessary Y to give him an heir. Basically, that is the fact that I'm not going to let the government or the medical world force me to do anything to my children that I believe will hurt them. That led to me thinking about my instincts (which work quite beautifully, most of the time, with my tiny little mother mind) and how they tell me that, really, we're on the edge here in 2015, with the dregs of allopathic medicine. Apparently, the libertarian Rand Paul, whom I loathe because I just don't gel with the libertarian aesthetic (or lack of one) or the cult of individualism that it espouses, is probably the best bet to keep out government over-reach (we can throw in medical marijuana, too, here), but it's just the way the guy frames it all that makes me sick, and that's because he sort of denies women's issues in an incredibly patronizing way.


Where was I?

Where are you?

We just had one of those very big jolts of an earthquake which evidently registered 3.5 on the old Richter scale and which I'm realizing is probably the reason why Sophie has had a terrible day with lots of seizures, jitteriness, clamminess and otherwise uncharacteristic behavior. I'm certain she senses these things or feels quite exquisitely the subtle changes of the planet. You see? I've brought things right round to the universe and my tiny little mother mind's mulling over its fate.

Saturday, April 11, 2015

Saturday Three-Line Movie Review

While We're Young

I am definitely a decade too old to truly appreciate this funny, light-hearted and sometimes ridiculous movie, but there were moments when I thought the director Noah Baumbach skated right toward brilliance and then backed off and kept with the smart, slick and predictable observations of a media-saturated, self-involved, privileged urban lifestyle. The movie grapples with some big cultural ideas, and despite my own aversion to both Ben Stiller (way too self-conscious bordering on obnoxious) and Adam Driver (unfair, admittedly, due to my dislike of that other show), their acting was so good and the story line so convincing that I found myself actually pulling for Ben Stiller's character for maybe the first time in --- forever. Other than that, the thought crossed my mind that Noah Baumbach might be too close to the culture he observes to really make an incisive statement about it, hence the skating analogy, but then I thought Fellini sure could do it and did it in La Dolce Vita, so -- well -- I'm old and glad to be just an observer rather than a participant.

More 3-Line Movie Reviews


Force Majeur 
Gone Girl
Saint Vincent

Get on Up
Begin Again
The Immigrant

Cesar Chavez

The Grand Budapest Hotel

Labor Day 

Friday, April 10, 2015

Obvious Things About Caregiving, Insanity and Cognitive Decline

Me, in my declining memory years

There's a story making its rounds today titled Disability Caregiving May Lead to Memory Decline in Moms.

Sigh. Go on and read it, especially the parts where they talk about dads, except that for them they use the word fathers.***

Feminist language sigh.

It reminds me of another story -- years ago -- that demonstrated that providing care to a family member with a chronic illness or disability is not associated with increased risk of death in most cases, but may instead be associated with modest survival benefits for the caregivers. That one was titled Caregivers Live Longer, Study Says, and it was in the American Journal of Epidemiology. I wrote about it here.

Both articles were in a pretty decent disability aggregator website called Disability Scoop whose digest I receive once or twice a week in my inbox. 

Can I be honest? 

Studies annoy me and seem, sometimes, like a giant waste of time and money. Take a good look at me and any number of my comrades in arms (except perhaps for the everything is a blessing and everything has a meaning and is part of God's plan people), and it's pretty clear that we have a hard road to hoe. Do we really need to be studied before getting some help from the Powers That Be? I read about memory decline in "moms" who do the majority of caregiving and think, no shit, Sherlock.  And given that my comrades-in-arms are also some of the strongest, most kick-ass REAL tiger women on the planet, I think no shit, Sherlock, when I hear that we live longer than "normal" folk.

As far as the new study goes, maybe losing your memory in a long, long life ain't such a bad deal, anyway.

Right, Moms?

***Before you get your boxers or tightie whities in a wad, I know there are plenty of dads -- or fathers -- out there doing the primary caregiving of their disabled children. This post doesn't include or exclude you.

Advocacy for The Werc Shop (with correction**)

Jeffrey Raber, PhD, founder of The Werc Shop in Pasadena
via LinkedIn

Read this:

Leading Medical Marijuana Lab Raided in Pasadena

And this, particularly the comments of Dr. Raber toward the end of the article:

Parents in World of Children's Cannabis Fear, Desire Regulations

Here's the letter I wrote in support of Dr. Raber. If you live in California and would like to help us vouch for Dr. Raber, please email me and let me know.

April 9, 2015

To: City of Pasadena

My name is Elizabeth Aquino, and I am the mother of a twenty year old young woman who has severe and uncontrolled epilepsy as well as developmental disabilities. After a lifetime of seizures and over twenty medications that failed to help her, Sophie now experiences 90% fewer seizures and innumerable favorable side effects with Charlotte’s Web cannabis oil. As you can imagine, our journey toward this success has been extremely difficult, and we rely completely now on the integrity of the cannabis product to ensure that our daughter continues to do well.

I understand that this week, The Werc Shop was raided and that the owners, including Dr. Jeffrey Raber, were arrested. I am dismayed not only because we, as well as hundreds of other families with children like ours, depend upon Raber’s excellent business to test and insure that the product we are using has the highest standards, but also because I have had the pleasure of meeting Dr. Raber at a benefit dinner and found him to be a man of integrity, humility and great character.

I’m not sure if those in authority have any idea of what sort of service The Werc Shop provides and or how high its standards and integrity are. The cannabis medicine that we are giving our daughter MUST be pure and its potency and profile described. Dr. Raber’s work at The Werc Shop is essential for my daughter’s medicine, for our community and for anyone desiring this life-saving medicine.

I am a long-time healthcare advocate and have worked on the boards of several national non-profit foundations, including the Epilepsy Foundation of Greater Los Angeles. I have been an expert parent and family advocate for children’s healthcare organizations, including the National Institute for Children’s Healthcare Quality. I am concerned and outraged that Dr. Raber has been arrested and believe him to be falsely implicated. I hope that these charges will be dismissed immediately and that The Werc Shop can return to doing what it does so professionally and so well: ensure that the medicine we get for our children is pure.

Thank you for your attention to this matter.

Elizabeth Aquino

**An earlier post of my letter included someone else as owner of the shop. I have corrected my letter to include Dr. Raber only. The cited article has his colleagues names.

Thursday, April 9, 2015

Beach Evening Seizures

It was fun for a bit, but I'm not sure what happened for another bit because Sophie had a bunch of seizures. Was it the THCa? Was it the last dregs in the bottle of CBD? Too much THC, perhaps? The seizures kept coming, unusually. They were very small -- which is also unusual, but constant. I didn't feel worried, though, which is unusual. We're skipping a dose of the CBD and perhaps stopping the THCa. Big sighs all around for a day that's done. Tomorrow is another day, as they say.

When the Boys Are Gone

That's a poppy that I saw on a walk this morning. It looks as if there's an entire universe in there, doesn't it?

Sophie just got home from school. The boys are on the east coast. It's horribly quiet in the house and hardly peaceful. I'd call it desolate. I rarely complain about my boys for a reason, and that reason is because I adore having them around and they're amazing sons. I'm going to put Sophie in the car and drive west to the ocean. Maybe we'll walk a bit in the sand and watch the sun begin to go down. Maybe we'll eat some french fries at Perry's By the Sea before heading home.

What are ya'll up to?


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