Thursday, April 30, 2015

On Set

So, I consented to appear with Sophie in a short film being made by a friend. I know what the guy does, and it's beautiful, exciting stuff, but I had no idea that what I was going to do was actually be a part of a real shoot, with lanes blocked off, a large city bus, some extras, a famous assistant director -- the whole shebang. It was cray cray, as The Big O likes to say and terribly interesting.  At one point an older gentleman walked into the set, clearly one of Los Angeles' many homeless persons, and one of the workers politely asked him to walk behind that bench you see in the photo where I'm sitting. The homeless man was super polite and did so, but what struck me as inimitably LAish about the whole thing was when he said quite placidly, OH! I'm sorry. Ya'll are shooting a movie aren't you? as he walked on by. I was basically directed to be myself, a mother with her child sitting at a bus-stop and engaging wordlessly with a young man also waiting on the bus.So, that's what I did, even as I died a tiny death inside when the very large camera, held by the famous assistant director who is also an actor practically hit the tip of my nose. I think it all came out the way it was supposed to, however it was supposed to. The Director was pleased and said I'd done my thing which I believe is be Elizabeth, Sophie's mother who loves her very much. I wheeled Sophie past the set when they were finished with me, loaded her into the car and drove off. It's a big world, Reader, and a strange one.

Wednesday, April 29, 2015

Don't tell anyone, but*

tonight I was filmed by a trio making a documentary about marijuana. I sat in a chair and babbled on for two hours about our experiences and my thoughts on what's going down. The guys and woman were wonderful, and it was really fun, to tell you the truth. When they'd gathered up their lights and cameras and cords and paraphernalia (so cool and interesting!) and left, I felt wired and just this side of anxious (because of all the thoughts and emotions stirred up), but it wasn't until Oliver came screaming down the hall with a glass full of water, Henry chasing after him (evidently upset because Oliver had been throwing ice at his car as he pulled away for lacrosse practice), and the glass went flying and the water went flying and the glass hit the floor as Oliver hit the floor and the glass shattered and everyone was screaming, no one louder than me I'M SO SICK OF YOU GUYS' SHIT! that I poured myself a glass of wine, retreated to my bedroom and told all present parties to not talk to me for the rest of the night and leave me alone. 

*I cursed at my teenaged boys.

Tuesday, April 28, 2015

Washing Up

I woke up heavy-hearted this morning, for obvious reasons. Go for a walk, a dear friend said. What right have I to bear a heavy heart? I wish I were religious, I said.

It feels like drowning sometimes, the silent sinking in to what is otherwise calm and blue, a surface that belies depth and darkness.

While dressing Sophie for school, I gathered her up like a baby in my arms, her long body curled on my lap. She looked into my eyes for a moment and gave me a shore.

Monday, April 27, 2015

Boy Question That Beggars Belief*

(after accompanying me to a store where I bought my own mother a Mother's Day gift)

Wait! Does this mean I'll be having to buy you a gift for Mother's Day until I'm 50 years old?

*You really can't use an expression like beggars belief too often, but the incredulity I felt called for it, especially when The Boy clarified by stating how expensive it would be over all those years. Call me heroic, because he's very much alive

How She Does It

Sophie had a rough day yesterday. Her seizures returned, but while numerous, they were brief and didn't seem to affect her so much. I'm not sure what to think, so I don't. This morning she was fine, except for sitting in a position too long on the floor that throws her knee out of whack so that she can't put weight on it (which is a different issue than the Todd's Paresis which occasionally affects her after a big seizure) until I literally straighten her leg and hear the grotesque pop of it going into place. These are the things that make me strong and cold and capable. I could never do what you do, some people say, and it isolates those of us who do it. Sophie stood up after I popped her knee into place and walked around her room, bent down to pick up a colorful strand of beads, got on with being herself. I don't know how she does it.

Sunday, April 26, 2015


His voice is licked
but his dreams
are the artillery of words loaded
to uncoil our strength.

Michel-Ange Hyppolite (Haitian poet)

I'm not much of a "prayer," but my heart aches for the people of Nepal, and I send them prayers from that ache.  Seeing ancient buildings reduced to piles of sticks, enormous sacred statues tumbled, ashy faces under rubble, the bloodied, torn pants of a woman being carried by others makes us feel wildly helpless.

That compulsion to write what we see. That compulsion to not sully with words what is beyond them.

The Real Work

It may be that when we no longer know what to do
we have come to our real work,

and that when we no longer know which way to go
we have come to our real journey.

The mind that is not baffled is not employed.

The impeded stream is the one that sings.

Wendell Berry

Saturday, April 25, 2015

Children Are Dying - A Guest Post by Mark Storck*

Raegan and Deb at Disneyland, 2012


Children are dying. I cannot put it any more succinctly than that. Their suffering goes on endlessly. The racking pain from repeated, uncontrollable seizures, the destruction of grey matter from an electrical cyclone in the head, is robbing them of any sort of ‘normal’ future.

As a parent of a child with a debilitating seizure disorder, I can attest to this fact, first hand. It is useless to my child, and millions of others afflicted with seizure disorder, to argue whether it is anecdotal or not…IT IS A FACT…one that very well may, one day, permanently take my child from my arms. It is also a fact, full-spectrum cannabis therapy not only subdues and eliminates some seizures entirely, but also helps to repair the damage caused by repeated seizures. When all other pharmacological efforts have been exhausted, and the side effects of those drugs are literally killing your child before your very eyes, please don’t tell me we can’t use a known, working remedy. I ask you to listen to these “real life” facts, based on thousands of parents now using this amazing and natural medicine and assist us in taking the necessary steps to save my child’s life.

Quoting negative ‘anecdotal’ stories and political propaganda, which have been passed down since the 1930’s, will not give my child relief. I’m not looking to get myself, or my child, high. I am looking to give my child medicine. Every day, I live with the very real fear that this particular seizure could be the one that takes my child’s life. Do you realize the emotional havoc that wreaks on a family? Do you care?

It is an appalling travesty of epic proportions, you require us to publically plead with you for the opportunity and inalienable RIGHT, to save our child’s life. We have been socially castigated, arrested, beaten and humiliated, merely for the sake of a plant that has been used for thousands of years to relieve human suffering. Of which, not one person has EVER died from an overdose. The facts are crystal clear: this is NOT a dangerous drug, it is a plant-based, holistic remedy used for untold millennia, bringing the human condition healing and relief. The influence and power of “Big Pharma” would rather we not have access to this natural healing agent, without their control. This should not be about long-term profits and boardroom tactics. This is a quality of life issue.

What I WILL tell you is: I won’t stop. Neither will the other parents who are now successfully treating their child’s disorder. This movement is gaining steam and whether you want to admit it or not, it IS saving lives!

Thank you.

© Mark D. Storck 2015

* As a rule, I don't post guest posts, but when I read Mark's impassioned words on Facebook, I thought they needed wider coverage. I hope you'll share them.

Saturday Morning West Coast Re-Post

I got nothing. I clicked on one of those LinkWithin thingees at the bottom of my posts yesterday, though, and pulled this up. It made me laugh, and lord knows, I need those.

Saturday, February 11, 2012

Extreme Parenting and Teeth Brushing

After my shower this morning, and while I brushed my teeth, I started thinking about parenting. My father sent me and my sisters the article about how French parents are better parents, and I read it with a sigh and then deleted it. I saw it pop up on Facebook and then on blogs and now it's a book or something and everyone is talking about it and it's making a million dollars while legions of American parents, mainly mothers, are debating again whether they're doing it right or doing it wrong. I'm going out on a limb this morning to say that these debates bore me to no end, in the same way that I'm bored by the agonizing over breast-feeding or Tiger mother parenting or working mothers versus non-working mothers and all the rest of it. I'll admit to possessing one of the ultimate trump cards (parenting a disabled child which makes nearly every other kind of parenting sort of a walk in the park, as they say), but I'll also admit that my parenting Sophie is a walk in the parkcompared to the parenting of the Sophies of Bangladesh, perhaps, or the myriad children all over this country and the world that are far sicker or more involved, and while I know it's all relevant, in some ways it's not. There's perspective for one, and my belief that it's my responsibility to have some. Do I begrudge the writing of another blockbuster book about the parenting tribulations of the upper classes? Am I jealous? These are the things I thought about as I paid special attention to my back molars, dreading the visit to the dentist on Monday and the tut-tutting of the hygienist when she asks whether I've flossed since my last visit. I started thinking about the self-esteem wars -- important for our children to have it or not important? -- and that led to the giving out of trophies for nearly everything and how that sends some parents into a parenting tizzy. What are the repercussions of a child receiving a trophy when he's an abysmal athlete?  That thought segued into my own son Oliver's collection of trophies, half of which are not his, but which he acquired at a yard sale down the street when an unfortunate married couple went through a terrible divorce and divested themselves of nearly everything they owned. You can read about that here. I have one of those electric toothbrushes that buzzes and changes subtly every thirty seconds and while I usually only brush for 23 or so seconds, today with all this heavy thought, I got to the two minute mark and was awarded with an extended vibration and a smiley face on the panel. I thought about that, too, and how here in America, the U, S of A, we're given pats on the back for brushing our teeth for two minutes.

Friday, April 24, 2015

Dispatch from the Armenian Centennial March in Los Angeles on the Corner of My Street

Looking north toward the Hollywood hills, I had never seen it quieter in the seventeen years I've lived in Los Angeles.

It was positively deserted and definitely eerie looking south.

People were trickling in, probably from Glendale, the second largest city behind Los Angeles of people claiming to be of Armenian descent. The Greater Los Angeles area claims over 40% of the nearly 400,000 Americans of Armenian descent. They form the largest community in the Armenian diaspora after Armenians in Russia.

I'm not Armenian, and today I am grateful perhaps not to be Turkish, and other than a brief spat with a group of men throwing their cigarette butts onto the sidewalk (I told them to knock it off and respect the neighborhood, they told me that someone would pick it up and that they were bringing money to the neighborhood),  I enjoyed the spectacle today. There's really not much more exhilarating than a massive peaceful protest march.

Finding a Still Space in a Mad, Mad World

I had an interesting discussion with the doctor who helps us dose cannabis and monitor Sophie's progress on the oil. We spoke a bit about the obduracy of Certain Neurologists. She agrees that it's a real and maddening, frustrating puzzle and also believes that the deeply wired ethic of the field demands a sort of ego superiority over the patient and definitely over the parent of the patient. When I try to look back in an unbiased way at the many encounters I've had over the years with neurologists from all over the country, I am really struck by the negative similarities that go way beyond what we might have once called bad bedside manner. I've agonized over my biases -- am I too angry? too stubborn? too opinionated? too too? I wonder whether the neurology field attracts a certain kind of personality or whether the personality is affected by the field -- a kind of chicken or egg coming first conundrum. We all grew up hearing the expression It isn't brain surgery, after all! to describe even the most herculean task in comparison to what is perceived as the most difficult branch of medicine. Yet, there's this arrogance that reveals itself in the cannabis revolution as a cover for what might just be a nearly primitive fear or shame, a tail-between-the-legs kind of running away when the dog isn't chained to a post, lunging and barking. This morning as I contemplated the universe, I nearly laughed aloud at an article in the paper describing the creation of an atomic clock so precise that it won't lose or gain a single second in 15 billion years -- roughly the age of our universe. Get me one of those.

Yesterday, Sophie didn't have a single seizure -- not even a small one.

Thursday, April 23, 2015

The Greatest Healthcare System on Earth, Part 5,346,789,340

a scene from Brazil, the 1985 Terry Gilliam flick whose brilliant scenes prefigured my life by 3 decades

I opened an Explanation of Benefits online this afternoon and noticed that the cost of the bloodwork (ordered by Sophie's doctor to check whether or not she had an anemia  or something worse problem) was not covered by Assurant, our new insurer. I had specifically looked up and found an In Network Lab, which, according to my insurance company acumen, means there would be no charge.  On the Explanation of Benefits page, under the Remarks column, were the numbers

1001, *0204

I followed the little asterisks down the screen to the explanation for these groupings and read:

0204: This service/equipment/drug is not covered under the patient's current benefit plan.
1001: This type of service is not covered under the plan. Please refer to the certificate.

Oy vey, ya'll. You know what that means, right?

I called Assurance, was put on hold and then finally spoke at length to one of their people. She was patient -- I'd say robotically so -- and kept putting me on hold to research your problem. She came back to say that there were several problems involving erroneous coding from The Provider that neccessitate my calling The Provider, asking her to change the coding on the original prescription, then calling the lab to authorize said changes, then have the lab issue a corrected claim to the insurance company, and then for me to mainline some heroin. 

The Assurant agent also told me this:

We do not cover venipuncture.

I said, But you do cover bloodwork?

The Assurant Agent said, Yes, but we do not cover the venipuncture service.

In other words, I pay private insurance so that Sophie's blood may be analyzed in a lab for possible horrible diseases, but that private insurance will not pay for the means to remove the blood.

Help me Rhonda.

When the Moment, Much Less the Day is Everything

I watched Sonjay Gupta's third segment of Weed the other night on CNN and was struck in particular by what the wife of a soldier being treated for PTSD said about the possible long-term risks of using medical marijuana. I'm paraphrasing here, but I remember her saying she had her husband back. She said that he had his life back. She mentioned that 22 soldiers commit suicide each day in this country. She stated that even if they were to find something negative about the use in five or ten years, they would have had life NOW. 

This living in the present moment thing is part of our popular culture, expressed in mindfulness meditation and in most conventional religions. We are urged to seize the moment, take each day as it comes, one day at a time and so forth. For those of us with children with special needs, particularly older ones who are and will remain utterly dependent upon us for the rest of their or our lives, this is something piercing and gets to the root of just how we cope. It's also an imperative when your child is at risk of sudden death or even an inevitable early death. Sophie, as you know, had been seizing hundreds of times a day for most of her nineteen years when we began using cannabis oil. She is nonverbal, needs assistance walking, is fed like a baby, wears diapers, has either her father or me sleep with her every night and has to have a padded bedroom so she doesn't hurt herself. When the seizures slowed down and then stopped for the most part, our family's life was so radically changed that we really didn't talk about it for a very long time. We still don't, really. I've thought about "long term effects" of using cannabis oil, and these thoughts are really no different than the ones I've had about the 22 pharmaceuticals she's been on as well. My fallback coping skill is a grim and dogged sense of humor, and there have been moments -- and minutes and hours and days and weeks and now one and a half years -- when I've wondered if Sophie was going to grow a Bob Marley-esque tumor in her brain. Please humor me and don't gasp too loudly. Like the wife of the soldier with PTSD, though, I believe that these largely seizure-free days and weeks and months and maybe even years, when Sophie is alert and sleeping well, when she doesn't do a face plant into her dinner every night or smash her head into the floor or the dresser in her room, are worth it.

That's what living in the moment is for someone like me.

My Italian grandmother, whom I've written of here quite often, was a deeply religious woman and also deeply suspicious. I don't know the expression but think there is one for someone who doesn't like to speak of anything positive because of the chance to jinx it. We're fiddling around with Sophie's cannabis oil, trying something new, and this morning for the first time in a very long time, she didn't have a seizure when she woke up. Rather than perpetuate superstition, I'm going to seize this moment and this day and exult in it.

Wednesday, April 22, 2015

Snappy Answers to Stupid Questions* and Some Observations**


(The well-meaning stranger)

What's wrong with your daughter?

She has a rare form of epilepsy.

Can't they give her something for that?

What a great idea! I'm going to call the doctor first thing!

(The man popping peanuts at a cocktail party)

Does your daughter feel love?

No, but she does feel hate, and you'd better move out of the way because she's a really good shot.

(The social worker doing a conservator interview)

Does Mom let Sophie make her own decisions regarding her sexuality and marriage?

No!  I've already arranged for her to be married to my oldest gay friend so that she can get some decent health insurance benefits!

(The Neurologist standing in hallway of hospital)

Have you thought about the drug choices I gave you as the next treatment for Sophie?

Yes, and I think I'm going for the one that can cause aplastic anemia instead of the one that causes blindness, and I'm not sure whether the other one is right for a six month old. Doesn't it have pretty bad long-term cognitive side effects?

Well, what's a few points drop in IQ really matter?

Probably not much in her case since she's already told me how to construct a bomb and blow up your office!



We live in a country that likes to drop bombs, both literal and figurative, and then clean things up and rebuild afterward. This observation pertains to wars (Iraq), vaccination "science," cancer treatment, pharmaceutical companies, the medical-industrial complex, the tobacco industry, fast food companies, anti-obesity efforts, etc.


When you engage with A Neurologist, you have to do a certain amount of suspending your belief that these are people with advanced degrees and therefore able to make intelligent inferences that don't involve their egos or ties with certain pharmaceutical companies.

(in response to SB277 passing through committee)

I'm interested to know if the California government plans on chasing down those families who choose to delay or decline vaccinations for their children and themselves. Will they carry syringes as they run after us? Will all public places be verboten for those of us who refuse to get a mandatory flu shot? Will herd immunity be strengthened? I saw a pig fly the other day.


Obduracy and control go hand in hand.


On Friday I will be attending my 17th Individualized Education Plan for Sophie, and other than expressing my gratitude to her teacher and aide, I don't give a shit what happens in it. I plan on bringing donuts and, perhaps, a flask of bourbon. I will, as usual, wear a leotard and do my customary tightrope walk routine.***

*All questions are factual. Answers were inside my tiny little mother mind.™

**All observations are from my tiny little mother mind™ and should only be construed as opinion, except for the first part of Number 5 about gratitude and not giving a shit. Those are facts.

*** More observations on what happens at this meeting are forthcoming.

Monday, April 20, 2015

On the Road with Disability Education

Many of you contacted me about a follow-up after I posted about a presentation that Oliver and I did for a group of fifth graders at a very exclusive private school here in Los Angeles. Last night, I saw my friend who had arranged the whole thing, and she told me that she and the other teachers were very moved by our presentation. She suggested that Oliver and I go on the road to do our thing, and I have to admit that the idea appeals to me. Oliver, of course, is gung ho, so maybe we'll make it into a homeschool community service project. I am still so utterly grateful for this opportunity as it turned into one of the most moving experiences that I've ever had, particularly as I did it with Oliver.

In a nutshell, we faced about fifty-five young boys and girls and four of their teachers, as well as the director of the elementary school. Looking out over the sea of little faces, a diverse group that belied their probable very well-to-do backgrounds (and celebrity parents), I basically launched into a discussion about what it's like to have a daughter who is disabled from seizures and how our culture makes her an other. Oliver sat next to me in a matching rocking chair and easily added in his own observations and experiences. We talked a lot about social injustice, and I emphasized my belief that persons with cognitive disabilities are at the bottom of the totem pole, still, in a world that sometimes very inadequately strives to afford dignity to every person regardless of their sex, sexual orientation, race and religion. We talked about the word retarded, how difficult it is to combat its use. I told them that I still have friends who use it, and how every time they do, I wince and feel defensive about saying something. Oliver told them to stand up and stay cool when they hear the word, that they can tell their friends to knock it off and use a different word.

I told them, too, about my #dontstarepaparazzi movement, and I even showed them one of my shots that I'd taken. We told them that pain doesn't come always from the person with disabilities but rather the culture and the people within it that exclude, fear and pity them. I shared stories of walking with Oliver when he was younger, how he noticed people staring and how angry it made him, that he'd tell me he wanted to kick those people in the legs, Mommy! This part of the discussion garnered a lot of laughs, but I think it also had the biggest impact on them. I welcomed questions, even as I spoke, and I was almost immediately peppered with them. One girl asked what they should do when they see someone with disabilities, and Oliver said smiling and saying hello always works. Then we joked again about Oliver asking me one day, after enduring the stares of a group of kids who were way too old to be doing so, whether he could have PTP. You might remember what this stands for, and the kids in this class laughed out loud when I told them.

One little girl got to the edge of deep emotion when she told me that after a recent outing to an accessible playground where the kids were buddied up with children with disabilities, she felt uncomfortable and sad and couldn't stop crying. I gently told her that being emotional and uncomfortable is normal, that our fears of difference can be overcome. Oliver pointed out that when he first visited Sophie's high school special education classroom he, too, was uncomfortable, but that when he accepted the kids and grew to know them, he realized that there was nothing to fear. We also pointed out that both Henry and Oliver don't feel sorry for Sophie or think she's scary or strange. She's a part of our family and not other. I said that we hated the seizures and felt terrible for her when she had them, but they weren't what made her a human being and that she wasn't to be pitied but, rather, celebrated. 

I emphasized that people with cognitive disabilities have much to offer the world and that while we might feel good when we do community service with them or interact in superficial ways, as we grow more intimate with people of difference, we realize that they are teaching us and have a far bigger impact on us than we might on them.That led to a discussion about what I called disability porn, the type messaging we see on Facebook and in the media and on the internet that masks exclusion and discrimination by somehow celebrating triumph over disability. I pointed out that we can admire and be moved by stories of people overcoming adversity, but that this type messaging sometimes excludes a vast number of people who might never overcome, might not ever talk, might always be very sick or deformed or even die from their disabilities and that they, too, should be honored and celebrated because they are alive and have dignity as full human beings. I read to them the story I had published in an anthology about visiting a very eminent doctor at UCLA, how he was teaching his students on the day we visited and how he gestured toward Sophie in her wheelchair and called her a disaster in front of all of his students, even as I and Sophie sat there in the office. When I looked up, the teachers and students had tears in their eyes, but we discussed for a good amount of time what makes us human and how we might advance inclusion and social justice for people with disabilities, even those that are invisible.

When we were finished, several of the children came up to us and asked the sweetest of questions, often beginning them with the words I have a connection to make. They would then tell me of a cousin with autism or an aunt in a wheelchair or a brother also named Henry, and there was a moment when I wanted to gather up all of these privileged children in my very soft and strong arms and just hug all the hope and promise into me, letting all bias go, including my own.

Sunday, April 19, 2015

Talking with Boys, Part 759

Henry, your face looks wonderful! Your skin is all cleared up!

See, I told you Mom. Picking at it constantly works.

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.


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