Sunday, November 23, 2014

Books and Bakes

I've been plotting and scheming in my mind for quite some time to establish a sort of reading and eating salon and this weekend, with the help of my sister Jennifer and my friend Moye, I designed my first announcement and put it up on Facebook. Within about 30 minutes, the ten spots were filled, so I added another date and those are just about filled up, too. In case you're in California in January, and particularly in Los Angeles, I'll show you what I advertised, so you can sign up as well! I plan on having these groups twice monthly and envision a lively literary thing where we eat, drink, make merry and discuss some literature, facilitated by me. Part of my life plan is to morph into Gertrude Stein and be surrounded by interesting people all while paying no attention to what I'm wearing or how short my hair is or how monolithic my body and head (literally, as I don't want a big head figuratively). I'd welcome an Alice B. Toklas, too, but it'd be a stretch for me to go all the way, if you know what I mean.


A Literary and Food Salon

January 9th, 2015 from 7 to 10 pm
January 23rd, 2015 from 7 to 10 pm

Strange Pilgrims by Gabriel Garcia Marquez

Are you a lover of literature but stuck in a book group that never really discusses the book? Are you a lover of food but want to cut through the pretension of the foodie world? Do you revel in devouring both beautiful fiction and food, especially when they intersect? Are you looking for a unique gift for your loved ones or yourself? Come join a community of like-minded souls and share your love of literature and food at my first Books & Bakes literary and food salon. Salon size is limited to 10, so rsvp early! A light dinner, drinks and stimulating conversation are included.
$75.00 per person includes facilitated discussion about Strange Pilgrims, related food and alcohol.

Email Elizabeth Aquino at for more information

Saturday, November 22, 2014

Saturday Three-Line Movie Review

Force Majeure

This very dry and very smart black comedy tells the story of a Swedish family on vacation in the French alps, all middle-classy, struggling with the usual weight of children, marriage and middle age until something happens that literally shakes them all up. I don't want to give away the plot, but if you like really smart movies about the constraints of marriage, about wondering what the hell we're all doing, about what we might do during an incipient disaster, about what we're actually made of and the often absurd shackles of bourgeois lifestyles, you will be as entertained and admiring as I. Why do Americans make movies that cost gazillions of dollars yet are never this good?

More 3-Line Movie Reviews

Gone Girl
Saint Vincent

Get on Up
Begin Again
The Immigrant

Cesar Chavez

The Grand Budapest Hotel

Labor Day 

Friday, November 21, 2014

Listening to Ray Bradbury on the Ventura Freeway

There must be something in books, 
something we can’t imagine, to make a woman stay in a burning house; 
there must be something there. You don’t stay for nothing.

Ray Bradbury, Fahrenheit 451 

Since my carpool in the mornings fell through, I've been spending a lot of time in traffic on one of Los Angeles' most notoriously congested highways. The ride to Henry's school is manageable, but the ride back can take more than twice as long, and it's difficult not to feel rage rising up, the rage that is born of rue for choices made. Something about the silence of cars, the endless glint of steel below the bluest of skies tinged pink with a still rising sun, the muffled horns and set faces of the inhabitants makes for desolation, at least for me. Why do I live here? I can't listen to music. I can't listen to the talking heads of commercial radio, nor the droning ones of NPR, and while I've learned to surrender my rage, to breathe deeply through it in a sort of mindful daze, it's been the husky voice of Tim Robbins reading Fahrenheit 451 that's literally erased it, turned frustration and a self-absorbed samsara into -- dare I admit it -- anticipation of more hours spent on the road listening?

Yes. I'll say it. Since I've been listening to the great actor Tim Robbins read the great writer and human being Ray Bradbury's sinister yet beautiful masterpiece Fahrenheit 451, I look forward to getting into my car every morning at 6:45. I spend the first half hour in the passenger seat with my son Henry who is earnestly and quite capably learning how to drive. After I drop him off, I spend the next hour or so, along with millions of other humans, sitting in my sexy white Mazda inching south on the Ventura Freeway, and listening to the riveting story of Guy Montag. I read Fahrenheit 451 a million years ago, and despite a memory like a steel trap, I honestly don't remember it other than the burning books stuff. I don't know if it's the time in my life, my stifled, seeping-out rage, the city I find myself struggling in or just the damn exquisite prose and grim prescience of the story, but listening to this novel is knocking my Birkenstocks off.

***Disclosure: Audible gave me a free download of the book but with no obligation to write about or review it. Thank you, Audible, because I know I never would have done so, and I'm grateful to not only avoid the extreme frustration of navigating the highways of Los Angeles, but Bradbury's novel is a work of art that I'd forgotten. For anyone interested, exclusive audio excerpts of these new Audible Studios Bradbury titles are available at

Thursday, November 20, 2014

Sustenance and Salvation

Greg Gray Cloud, being led away from Senate Chambers

Grandfather look at me, I am standing here struggling, 
I am defending Grandmother Earth and I am chasing peace.

Grey Cloud, 
translated from a Lakota unci maka wiwayang wacipi song

I'm not sure who is unmoved, always, by the plight of Native Americans in this country, -- both by their history and their present struggles -- but surely only those with cruel and hard natures. Yesterday's close vote against the Keystone XL pipeline was a relief to those of us who have even the tiniest bit of concern for our environment, and maybe a slap in the face to the oligarchs and plutocrats that hold all the power, and when I read the story of Greg Gray Cloud, arrested for unruly behavior in the Senate Chambers, I felt the tiniest bit of hope in what otherwise is my growing cynicism and disdain for anything pertaining to government and business in our country.  That even Elizabeth Warren (whom I deeply respect and admire) was a tad undone by his chanting gave me a thrill. That Gray Cloud was arrested with a court date in December gives me another one, to tell you the truth -- a diversion, perhaps from the grotesquerie that parades as democracy.

Here's the article and video.  Wica Agli is a group created to bring back traditional masculinity values and to eradicate violence against women and children.  And thanks to Rebecca for posting it!

Wednesday, November 19, 2014

A Comic Interlude

Or is it comical? Who the hell cares, anyway. The play must and does go on, despite my wranglings and tears. At least we don't live in Buffalo where I heard they got more snow in a couple of days than they expected for the entire year.That's some holy shit muttering right there, if not explaining. I wonder how many climate change deniers live up in old Buff A Lo.


Out in the garden today, Oliver was rummaging around the vegetables that are growing like crazy in our one raised bed. We've got lettuce up the wazoo, chard and mint and broccoli and cauliflower and since the sun always shines, and our water restrictions are restricted to grass, the vegetables are way too numerous for our little carbohydrate loving family to consume. Oliver, being the entrepreneur, has ideas to pick, wash and sell for drastically low prices and when I gave him the ok, he set to it. Very quickly he shouted for me to come outside to see all the mushrooms growing under the lettuce and throughout the bed. It's so gross, Mom! he said. Look at how the black stuff is sticking to the bottoms of the leaves! And I, city girl extraordinaire, bent over and looked and sure enough saw a hell of a lot of what I'd call fungus, and like they say, that ain't right. And then like the city girl extraordinaire that I am, I protested Oliver's easy picking up handfuls of the stuff and throwing it into the dirt. Isn't that going to spread the spores? I asked him and then I remembered that I'm the parent, so I told him to stop picking it, to wait until Your Father can check it out, and in the meantime go inside and really wash your hands with hot soap and water. Again, being the city girl extraordinaire, I also told him to rinse it off with the garden hose before you go inside, visions of spores traveling throughout our home, perhaps giving Sophie added insult to her already stressed brain (even more stressed by the recent wean of her Bad Benzo). Oliver obeyed me and went straight to the bathroom. I fiddled around with the papers on my bed and desk, left there earlier when it all got to be too much.

Suddenly, Oliver shouted out, MOM! The mushrooms are doing something to my hands! and my heart sunk or seized in anticipation of skin being flayed or deadly mushroom plague or whatever the hell happens with fungus, and in the same moment I ran to the hallway and Oliver ran out of the bathroom, holding his arms up high, coated with white stuff and I gasped and he burst out laughing and said that I had the most terrified look on my face that he'd ever seen.

Then I beat him halfway to Sunday, went outside, collected the mushrooms, fried them up in some butter, sprinkled them with some sea salt and served them for dinner.

Disability/Healthcare Systems Equations in The Greatest Country On Earth

One arbitrary Medi-Cal denial form from months ago that isn't really a denial but more a shifting of benefits from one agency to another, yet neither agency knows which one

Call all these numbers. Be told to call back. Call another number. Be told a different number. Be told another number. Get through to recording. Be told that when your Medi-Cal identification has letters, in addition to numbers, this is what you do: Press *. Press key that has letter on it. Press number 1,2,3,4, for whatever position that letter might be, press rest of numbers and repeat previous instructions if another letter occurs, press #. Make mistake. Hang up. Start over. Get through and speak with telephone operator who can't help. Get new number.

The BIG FILE CABINET with twenty years worth of paperwork, roughly representing above factors times twenty (for years)

A tear-stained woman, clutching a mala in her teeth who has decided to let it rest for a bit since no one has answered her question.

Monday, November 17, 2014

Shouting for Help

I missed two days of posting, probably for the first time in six years, but it felt right to take a break, and just watch lacrosse for two days. It was a fine weekend, albeit exhausting, and while not a real sports mother, I've grown to like watching my son play lacrosse. Since the games are only one hour, there's no time to feel bored, and the venue for the tournament was beautiful, albeit a repurposing of a landfill. The skies were big with dragon clouds, Bob Dylan's song on repeat in my head, and since I know few people on Henry's team, I was left largely to myself.


I heard this over and over, shouted in hoarse, deep man-boy voices during the games.


I heard that, too, in even deeper and louder shouts from the coaches on the sidelines.

The boys -- young men, really -- scramble to help one another, seem to know implicitly who needs help, when and how much. The game is often a violent one, and when too violent, yellow flags fly, a boy is sent off the field to kneel in contrition for however many seconds the umpire assigns, after those seconds pass, he stands up and runs back out to join in chasing that small, hard white ball, scooping it up, passing it to another boy whose position is to race toward the net, aim toward it through the phalanx of players helping out their goalie.

Get ready because other than dragon clouds and only knowing careless love, being alone on a lacrosse field for two days under the wide blue sky calls for more introspection and possibly, even, a strained metaphor from the likes of non-athletic me.

It struck me that shouting for help and ordering help during a lacrosse game is completely acceptable, but that many of us who care for kids with disabilities or our aged parents for years and even decades,  or those with chronic illnesses themselves, rarely ask for help, much less shout for it. Many of us, when we do ask for help, do so reluctantly, whether it's for money, for relief, for an open ear or arms to hold us. The longer you go, the more difficult it is to recognize your need for help and to ask for it. I'd venture to say, too, that most people don't even realize that we might need help, probably because we don't ask for it, or because they think we've got it all down, at this point.  I believe that in the absence of crisis, people feel a sort of compassion fatigue when it comes down to dealing with people like us. I confess to feeling a gnawing resentment about this and a quiet acceptance. Both feelings -- resentment and acceptance -- come and go, the one small, hard and painful, much like the lacrosse ball, the other majestic in its breadth, much like the clouds and that sky and the lonely path ahead.

Maybe it's time to start shouting. Maybe it's time for you, too, to shout for help. Maybe it's time for you to shout for others to help. Maybe it's time for you to help.

Friday, November 14, 2014


I know there's a metaphor somewhere in that photo of a little knothole in the Ventura Pier that I took last weekend, but I just haven't been able to think of one. Let me know if you have any ideas.

I'm getting ready to drive down to Orange County with the boys. Henry has a lacrosse tournament over the weekend, so I'll be -- what is it called? -- stateside, with my book, some knitting and my best pretend sports-Mom look. I'll keep you posted.

I know I have a lot of readers who are writers, and I wanted to tell you about a very cool opportunity you have to contribute to a wonderful cause and get a languishing manuscript read and critiqued by a famous writer. My alma mater, Caregifted (the organization founded by the MacArthur Genius grant winner, poet Heather McHugh) that sent me the amazing one-week, all-expenses paid trip to Victoria in June of 2013, will benefit from all the proceeds of this fabulous event/opportunity. Seriously, ya'll. Some of the writers donating their time to read YOUR manuscript are

Rae Armantrout, Mary Jo Bang, Robin Black, Matt Bell, Janet Burroway, Ron Carlson, Alexander Chee, Billy Collins, Nicholas Delbanco, Mark Doty, Cornelius Eady, Therese A. Fowler, Daisy Fried, Linda Gregerson, Mark Halliday, Matthea Harvey, Tony Hoagland, Major Jackson, Ben Lerner, Philip Levine, Thomas Lux, Rebecca Makkai, Michael Martone, Elizabeth McCracken, Joyelle McSweeney, Eileen Myles, Lucia Perillo, Joanna Rakoff, Roger Rosenblatt, Natalie Serber, Brenda Shaughnessy, Rebecca Wells, Joe Wenderoth, Hilma Wolitzer, Laura van den Berg, Dean Young, and Matthew Zapruder.

You can read more about it here.

Reader, what are your weekend plans? Do you have a metaphor for my photo of the greeny sea through knotty pine?

Thursday, November 13, 2014

Raging Against the Machine in Little Tokyo with Howard Zinn's American Voices

The evening began in Little Tokyo, downtown, where Oliver and I went and slurped noodles. He had some sort of beef bowl, and I had seared tuna with a spicy wasabi dressing. Afterward, we walked over to the Aratani Theater, a small but classy joint where I've seen Toni Morrison and other literati. Some of you might remember that as part of our homeschool curriculum, Oliver and I are making our way through the young people's version of the great radical Howard Zinn's controversial People's History.  In a nutshell, Zinn writes American history from the point of view of the exploited as opposed to the "great" leaders, statesmen and warriors. The book has been suppressed over the years, bemoaned by the religious and patriotic right, but Oliver and I are finding it compelling reading, as well as overwhelming and sobering. Tonight's show had actors reading original texts of some of these people in American history -- familiar names like Sojourner Truth and Harriet Tubman, Malcolm X and Naomi Klein, and then ones less so like poet Marge Piercy, union activists and labor leaders.

An 1880 speech by the women's suffragette and populist Mary Elizabeth Lease who cried out against the excesses of Wall Street was weirdly prescient and brought down the house. The folk musician Joe Henry sang a Bob Dylan tune, and Tom Morello of Rage Against the Machine sang Springsteen's Ghost of Tom Joad. Can I just tell you that while I recognized the name Rage Against the Machine, I didn't know Tom Morello from Mr. Morell, my eighth grade English teacher? Ya'll, I'm a believer after hearing this guy's voice and guitar-playing and just overall -- well -- passion. I might have even jumped up and down at the end during a rousing rendition of This Land is My Land when he told us to do so.

Oliver, who earlier expressed his reluctance to sit through all of these performances was completely jacked up when John Kresinski of The Office walked onstage, and don't tell him I told you, but I think he was smitten by Kerry Washington. Aside from feeling energized by the wisdom and spirit of these voices of our distant and near past, I left, too, feeling sober and not a little depressed at how little has changed, how we seem to be moving backward, again, in this country, involved in endless wars, rallying to deport and demonize the immigrants who do the bulk of work, taking away women's reproductive freedom, shooting men of color or throwing them in jail and allowing those who brought the country to its economic knees to walk free, their pockets newly padded, buying elections and driving an ever greater wedge between those who have and those who have not. For a few glorious hours tonight, though, I looked around and saw people of every age, shape and color, and the sight of my boy's smiling face and shining eyes made me feel a tiny bit hopeful.

After-School Conversations

I caught Sophie lying like this and listening to Eva Cassidy singing Imagine.  Still life with cup and purple ball.

Imagine all the people living life in peace

I caught these guys in their version of conversation, responding to my own shout from the living room. Here's how it went:


HENRY! What's the deal with you leaving your socks in the living room at night when you take them off? THERE ARE AT LEAST THREE PAIRS LYING ON THE FLOOR AND YOU NEED TO CUT THAT OUT!


Oh, yeah. Ha ha ha ha ha. Ok, MOM! 

OLIVER (interrupting):

Yeah, Henry, you're such a pig! You leave your boxers in the bathroom every morning after your shower. I like to pee on them!







You can't just pee on my clothes! You can't even say that you did!



Five minutes later.


See you later, Mom. We're riding our bikes up to the video store.

Wednesday, November 12, 2014

Landing on Comets

Today I learned that a space craft has landed on a comet for the first time. That's a photo of the event. Meanwhile back on earth, we got a sort of explanation, possibly, for Sophie's "drop foot" or increasingly strange gait pattern. Yesterday was the Quarterly Trip to the Neurologist, and despite Sophie's recent digestion troubles, she was in fine form, alert, smiling, seizure-free and fairly animated. The Neurologist was delighted and suggested that the prolonged use of the particular anti-epileptics have probably, over time, caused the problems. She informed me that both Vimpat and Onfi are troublesome, and she really, really wants us to continue to wean the Onfi. This can only spell improved efficacy with the cannabis, as most reports indicate those off of benzos in particular see the best results. She was delighted as well that the cannabis was helping her so much, remarked on how good she looked and agreed that more testing -- an EEG -- wasn't necessary. We made a plan to begin another wean this week and will keep it at that level for a month before moving to the next. I have written out on a piece of paper four months worth of weans (1 teensy tinesy bit, hopefully, a month) which is a start but not complete. The Neurologist told the grim story of one of her patients who got into too much trouble at the end and continues to take a tiny bit. She suggested that this might be the case for Sophie, too, given how long she's been on the drug and how much she's taken. Lovely. Maybe I'll get a chance to ride a comet in celebration of The Removal of the Benzo. The Neurologist also threw some alarming fact about bone marrow and one of the drugs into the conversation which I filed away to mull over later. Lovelier. I told her about the weird stepping motion Sophie makes and how I'd wondered whether she had Parkinson's or Multiple Sclerosis, two of the diseases that I saw on the internets that correlated with drop foot. I asked her this question in my best casual, yet rueful and ironic way (because -- really -- I wouldn't be entirely surprised to learn of some new catastrophe and when your child is nonverbal, who the hell knows ever what's going on? That spacecraft that landed on the Comet is called Rosetta, which makes me think of those language programs which then makes me think of how we can't figure out what someone like Sophie is thinking or feeling and wouldn't that be wonderful if there could be a Rosetta for the nonverbal?


The Neurologist, after observing Sophie walk believes it to be just plain old weakness, exacerbated by her constant crossing legs and a possible injury around the knee. She wrote me a prescription for physical therapy, so next on the agenda is perhaps a fracas with the insurance company over whether this is absolutely medically necessary (can't she just use the wheelchair? I imagine the agent asking over the telephone). Before I do that, though, I'll take her to the private physical therapist for a little assessment that will cost me about three trillion dollars and get some advice from her on where to go In the Healthnet Network for regular physical therapy. Remember you conservative and anti-Affordable Care Act freaks and repealers: You don't want no government coming between you and your doctor!


All in all, it was a good visit to the place of CONQUEST (see my post about irony, written years ago) -- surely not as spectacular as a spacecraft landing on a comet, but who am I to think our little problemos have a speck of significance in this grand universe?

Tuesday, November 11, 2014

The Pee Pocket and Its Relevance to My Blog and An Exit Off The 405

Not a day goes by that I don't get some kind of marketing query from some misguided person or company who thinks my blog is somehow influential enough to warrant me posting about the object or invention or service they have to sell. I'm not influential enough, apparently, to convince neurologists to stop prevaricating about the effect of cannabis on refractory epilepsy, but damn if this might be the place to make THE PEE POCKET  best-seller. In the query email, I was told that THE PEE POCKET is geared toward athletes, travelers, the elderly, parents of young girls, pregnancy and -- oh, yeah, here's why they found me in the search engine -- the disabled.

Here's a picture of THE PEE POCKET:

You can use it while you're standing up ya'll! Seriously, if this product excites you, go on over to the site and learn more.  I was almost tempted to show it to The Brothers before I came to my senses, but it did make me remember all the times I drove back and forth from Los Angeles to San Diego with Baby Sophie in the back of a rental car to visit the osteopath. That was in the waning days of the last millenium when I lived in New York City but did these six-week stays in southern California by myself with the baby -- sometimes in a motel, sometimes with friends or relatives. I actually drove the highways by myself with Sophie in the back seat, at night! We had no phones, then, ya'll! No GPS! Sophie was a sickly thing back then and even when a toddler couldn't walk or do much of anything. She was so drugged up and irritable that she also never slept (neither did I), even in the car (neither did I). When I had to go to the bathroom, I had to carry her in with me, and one time I had an overwhelming urge to pee and pulled off the highway on some dark, godforsaken exit where I quickly realized that I wouldn't make it to the bathroom by the time I unbuckled the sleeping (finally!) child from the carseat, made my way to the bathroom, unzipped my own fly, pulled down my jeans -- well, you know the drill -- not to mention the pitch dark, the flickering flourescents, the whole south LA scene at a dark highway exit. How I could have used THE PEE POCKET in that moment! Instead, I grabbed Sophie's bottle, dumped out the contents, which was probably the nasty, thick ketogenic formula we were trying at the time, and proceeded to pee right inside of it. I'm not going to tell you how it all turned out, because this is not that kind of blog. Suffice it to say that I tossed it out the window into a metal garbage can and scratched off in my Focus and back onto The 405.

Whew. Like I said the other day, Cast my memory back there, Lord. Sometimes I'm overcome.

Monday, November 10, 2014

Cannabis Update Number 3,876,342 with a Profanity Warning

If you haven't noticed, I've retreated from the frenzy that is the medical marijuana/cannabis/hemp world. I told you a few weeks ago that I gave up my advocacy "position" due to exhaustion, burn-out and some other personal things. Sophie continues to take Charlotte's Web three times a day, and we still wait for the higher ratio oil that gave her the best seizure freedom. While not seizure-free, she is dramatically better than she was a little over a year ago, and as soon as her intestinal situation is completely stable, we plan on continuing the drug wean. Meanwhile, thanks to those who are not exhausted and burnt out, the fight for access to cannabis oil rages on. I watched the video below with great interest as several of my friends appear in it, but every time a physician came on, no matter how respected, my heart sunk. The arguments against this oil are, to me, bullshit, through and through, and it makes me almost sick to my stomach to hear them.

Ironically, the longer I live in this world of refractory epilepsy, the more seizures I've seen, the more drugs I've given Sophie and the more I observe their side effects and utter inefficacy, the more suspicious I become of the pronouncements of these estimable doctors, their condescension and obduracy regarding cannabis. I don't believe cannabis is a miracle. I don't believe it's a cure or know enough about it to call it a cure, but to argue against these children having the chance to try it, is unethical. Just the other day, a reader sent me an email expressing her desire to try cannabis for her nineteen year old son who is currently on four anti-epileptic drugs and still seizing hundreds of times a day. She told me that she didn't want her son to get high, and she told me that her neurologist did not approve of her trying the oil until more evidence came in. Her neurologist told her wrong information, and her neurologist works at Emory University. I'd say, good Lord! or even Holy Shit!, except that it so doesn't surprise me.

I don't mean to attack the medical world in its entirety. Obviously many truly do hold to heart the tenets of their profession and are beautiful professional healers. Plenty of doctors, including Sophie's, are incredibly sensitive and supportive. Many, too, are open-minded and curious. The rest of them? Well, let's just say that at my vantage point -- earned in twenty years -- I've learned to quite defiantly raise my eyebrows at best, and at worst, think: f**k 'em (another reason why it's probably best that I advocate here on my personal blog and not march into and out of political offices or worse, neurology departments, to beg for their mercy). I imagine that I'm a bit of a pariah in the World of Diplomatic Neurology. Again, at this point -- twenty years in -- I actually don't give a damn. I know that's a difficult stance to take on when you're new to this horrific game, and I can't actually advise people to do the same, but I can state, quite firmly the following things:

* If your child has refractory epilepsy, you have nothing to lose in trying cannabis oil.
* If your child is on multiple drugs and still seizing, the drugs are not working. It's not the moon, an impending virus, the fake candle fumes, your relationship with your spouse or family dynamics. When drugs work, seizures stop.
* If your child is on multiple drugs and still seizing, and your neurologist tells you to add another one, that's unethical. In twenty years, I have never met a single child with refractory epilepsy whose parents have found a magic pill to control his or her seizures for the long term without side effects.
*I have met many children who have tried upwards of twenty drugs with no success whose parents then back off so many drugs, accept the increased seizures and better quality of life, try cannabis and see its positive effects.
* That is our experience (above), and it's a travesty that just because I live in California where the product is available and legal, we get the relief.

Whew. I got that off my chest.

I can't seem to embed the video/documentary attached to this very informative article in TIME, but here's the link:

Pot Kids


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