Friday, October 31, 2014

This, again


Happy Halloween!

Some of my favorite photos of Halloweens/costumes past:

Oliver, or Curious George and his friend Tim, or the Man with the Yellow Hat

Sophie and Henry, 1998

Clarke (Clyde), Me (Bonnie) and Audrey (her sweet self), 1979 or 1980

My sister Melissa and I in 1972

Thursday, October 30, 2014

Ruin is formal, consecutive and slow

The Last Bookstore, Los Angeles

Holy Mackerel. I don't think I've ever read this one before, and while I wonder why, how often is it that you read a poem by your favorite poet for the very first time? I'm grateful to have missed it, to read it new.

Crumbling is not an instant's act (1010)

Crumbling is not an instant's Act
A fundamental pause
Dilapidation's processes
Are organized Decays —

'Tis first a Cobweb on the Soul
A Cuticle of Dust
A Borer in the Axis
An Elemental Rust —

Ruin is formal — Devil's work
Consecutive and slow —
Fail in an instant, no man did
Slipping — is Crashe's law —

Emily Dickinson

Jake From State Farm

So, in case you're not on Facebook, I thought I'd entertain you today with this photo of Oliver dressed for Halloween as Jake from State Farm Insurance Company.  I personally had no idea who Jake actually was until the boys showed me the commercial, but apparently, this costume idea and photo was tweeted by someone at Oliver's school (he takes a Science class at a small independent school) and Jake himself answered the tweet. Or re-tweeted. Or twittered. I evidently have a Twitter account, but I have no idea how to use it.

And, yes, the irony of having a child of mine masquerade as an insurance salesman is not lost on me. It's a beautiful thing.

Wednesday, October 29, 2014

The Death of Christmas

The scene at Target this afternoon. All the red-shirted stock people were cheerfully stocking the shelves with Christmas paraphernalia.

I thought I'd prempt the hysterical conservative Christian media and let ya'll know that the death of Christmas is imminent. Now you don't have to wait for Bill O'Reilly to tell you.

Next up on my plate is scouting out public schools to make sure they're slipping in some prayers and saluting the flag.

After that, I might build an enormous effigy of a teacup made out of the hundreds of flyers I've gotten in the mail this week, advertising for some candidate or another, and burn it.

Reader, what are you up to?

The Chariot Has Arrived

After more than seven months of considerable wrangling, Sophie's Medically Necessary Wheelchair Chariot has arrived, and it is a piece of art! We are very excited to have this piece of equipment in the house and loathe, actually, to send it off to her school. On other fronts, we still don't have a wheelchair bus, so we would have to transport it back and forth which will be problematic given its size and sophistication. The alternative is to keep this one at home and bring in her more and very used stroller for school use. She has an adaptive chair at school as well, and given the few hours she spends there, I'm leaning more toward using the wheelchair at home. It even has a tray where we can put toys and her iPad and food. I'm very grateful that this came through -- kudos to Anna and all the hard-working folks at NuMotion who had to make so many phone calls, fill out so many forms and just generally advocate for us over nearly half a year.

On yet another front, there's not much movement, yet, going on in Sophie's intestines. She's resisted the Magnesium Citrate and only mildly responded to the Miralax. I did a little research last night on the Interwebs and had a eureka moment when I read about people using cannabis successfully for things like Crohn's disease and irritable bowel syndrome, when diarrhea is a problem. Then one of my blog friends privately emailed me with the question about cannabis and digestion, and I hypothesized that perhaps over time, the Charlotte's Web has slowed Sophie's already slow digestion. I spoke to the pediatrician about this, and she agreed and suggested that she hasn't been drinking nearly enough, either, to keep things moving, that after a period of time without drinking nearly enough, you almost lose the mechanism that tells you you're thirsty, and then you don't have the impulse to drink and POW -- the cycle begins. It all makes sense to me, now -- she just hasn't been drinking nearly as much, particularly during the last few months when it's been the hottest and driest. That, combined with the decreased mobility (her norm), low tone (her norm), the slowing side effect of cannabis (new) and seizure medications (her norm) got her into a bit of trouble. We've got a plan, now -- Miralax every day for a week or so before reconvening. The plan gives me some peace of mind, but even Oliver said with considerable rue that he regrets how irritated he felt with Sophie over the last few weeks as she moaned and groaned and obstinately resisted drinking and sitting. I hate to say it, but what can you do? If I lived in medieval times, I'd walk with the flagellants, I guess, do some sort of penance for my human weakness. Instead, I'll chalk it up to nineteen years of dealing with other shit (like the procurement of chariots) that has taxed my stamina and made me very, very weary.

Tuesday, October 28, 2014

Our Girl

Sophie took a bit of a walk this afternoon with Carmen, a sight for my sore eyes. She's a hardy one, that Sophalofa. Less so her mother who lay on her back on a bed most of the day, newly traumatized. I'm getting too old for this shit, to tell you the truth.Two glasses of wine a few hours later, some grilled bread with burrata, an artichoke with aioli, a few mussels and some french fries, some catching up with my friend D and I'm back on the bed, ready for sleep, the fresh trauma burned away.

When only cliches will do

So, I know why Sophie has been so agitated lately, moaning and flinging herself around. She's been in severe pain. After ten hours in the ER yesterday, x-rays, CAT scans, blood draws, urinalysis, morphine, Ativan and much poking and prodding with the suspicion that she had a bowel obstruction, they determined that she had impacted stool. My good friend Moye sat with me for hours in the ER which kept me on my best behavior. Best behavior for me means a tired resigned air when the lab "lost" the blood tubes and they had to come in for more sticks. It means I only gently corrected them from administering a bolus of Benadryl to "calm her down" because Sophie has a paradoxical reaction to Benadryl. I'm devastated that Sophie's been so uncomfortable for so many days, maybe even weeks, but I'm strengthened by the confirmation of my instincts. I just knew something was wrong. It was an exhausting day and night, to say the least, but the nurses and physician assistant were remarkably kind and competent. Today, it's all Magnesium Citrate and enemas. The shit, literally, has hit the fan.

Sunday, October 26, 2014

Women Reading

Source unknown, via The Internets

I'm finishing up Elizabeth Taylor's Angel and would say that it's a slow but beautifully written read whose torpor appeals to me. I've always been a sucker for the slow read, where characters unfold with events as opposed to events unfolding with characters. I think of Trollope, Eliot (George, not T.S.), the Brontes and Austen -- the novels that, when finished, leave you aching not so much from what has happened but more because you'll miss the characters. Here's a little bit of Angel that made me nearly laugh out loud and certainly sigh in admiration:

He thought her extraordinarily placid. He sent for a cab and took her to tea at Gunters; the least he could do, he supposed. She was arch and gay as if she had come to London solely for this treat, and he wondered if she had ever been taken out to tea before; with that moustache, he rather thought not.

I've just begun David Grand's Mount Terminus and will report back at some point if I don't get lost in W.S. Merwin's new book of poetry, The Moon Before Morning.

Reader, what are you reading?

Saturday, October 25, 2014

How Not To Do It

Sophie won't stay still, and when it doesn't make me crazy, it makes me -- crazy. I don't know what to do about anything lately, and every admonition to just breathe, the majority of which come from within, I feel even crazier. Tonight, I fed her dinner in her stroller thinking I'd have more control, but rice and Korean beef went flying and juice dribbled out as she panted and flung her head back and forth and fidgeted and for a moment I wondered if she had Alzheimer's or some sort of brain tumor that was making her do what she's doing, behaving this way, and then I thought that if she had a brain tumor, she'd probably also be vomiting or at least have a headache and then I thought if she had a headache, she'd be in pain, but maybe not because the time her tibia snapped during a seizure, she didn't walk on it, but she didn't cry or feel any pain that we knew. It's all very complicated and it's all absurd and while you might wonder how we do it, I want to say that sometimes we don't do it, and tonight is one of those nights when I wonder who I'd be without this.


With cousins in  Florida, sometime in the late 1960s

The sense of being far away is not something to overcome but to respect and include in loving awareness. This is the way to work with our difficulties, to include them and learn from them. Feelings that seem like adversaries can become our allies when they’re included, and mindfulness offers us nobility and joy as we open to what is present completely.
In fact, there can be something more authentic in the times you feel something’s missing than when you feel satisfied. The more deeply you practice, the more you realize how much there is to learn. Even the self that would judge your experience is not a problem to be fixed, but to be held with compassion as part of the path.
This is a way to keep loving awareness in the center of your life, even when it feels far away. Remember, where you are now is the perfect place to practice. 

Trudy Goodman
Founder and Guiding Teacher of Insight LA
from The Perfect Place to Practice

Friday, October 24, 2014

Japanese Samurai Armor Exhibit for Homeschooling Field Trip

Oliver and I had a Friday field trip this week to the Los Angeles County Museum of Art where we visited an exhibit called Samurai: Japanese Armor. We had studied the samurai last spring in our world history book, so it was a nice complement to what we'd learned. Whether you're into Japanese warriors or not, and I'm actually not, the whole thing was spectacular. Those guys knew how to dress, and the artistry was fantastic. The fact that these elaborate costumes on both man and horse are from as early as the 14th century made the whole thing thrilling.

Reader, what did you do today?

Just Say No

I have no other photos from last night -- the Shebooks reading in Eagle Rock -- than the one above which cracked me up, unless you want one of the great Denise Emanuel Clemen, author of Birthmother, and I about to plant a big smack of a kiss on one another's lips for a mutual friend who couldn't make the event. I'll spare you that sight, though, and just say that the event was wonderful. I'll post the links to the short memoir and fiction of the other writers and mine, so if you're hankering for some awesome writing and have an extra $2.99 lying around, go for it!

On another note, I'm currently in the business of just say no, with a sort of twist on Nancy Reagan's ridiculous admonition so many years ago. The twist is that the advocacy is in the field of medical marijuana and getting lawmakers to ease up on the laws. There's a formidable group of women and men who work diligently on all of this, and I've done my best to publicize their efforts here on the blog and on my Facebook page. I was, at one point, one of the designated advocates to work on the issue in California, but this morning I decided to just say no. To be honest, other than writing religiously here about the issue, particularly as it pertains to Sophie, my efforts have been minimal. I am comfortable with what I've shared -- our personal experience -- and believe passionately that every single child in this country should have the same access to a medicine that might help their own child with refractory seizures or other diseases. I also believe that marijuana should be legal -- yes, even the stuff that makes you high. Period. However, I just don't have it in me to do the non-profit foundation stuff anymore. I don't want to be a part of an "army" with all that entails -- the war imagery, the in-fighting, the politics, the politics, the politics. I really don't have it in me. I've told myself that wimping out is my perogative -- after all, I've been doing this for nearly twenty years, and many of the people working on this current "campaign" have very young children, have no inkling of the toll it takes on some people, year after year. I feel that toll, and I'm actually not ashamed to admit to it.

So, I'm just saying no. When I stare at that sign about walls, I think, of course. I am a wall in many ways, very strong and built of peasant stock. Many people lean on me, have leaned on me, continue to lean on me, and that's good. I'm grateful for my strength and grateful that I have the wherewithal to provide support. At a certain point, though, I will fall, and just as I realized very suddenly one day long ago that I was in charge of Sophie and that the medical world was not going to help us, I realize that I am in charge of me and have to minimize some of the leaning. Does that make sense? I'm not saying that I don't want to help anyone anymore. I'm just saying that this campaign is just too much for me right now, and I'm backing out.

Here are the Shebooks links. You can also buy these titles on Amazon!

Elizabeth Aquino Hope for a Sea Change
Denise Emanuel Clemen Birthmother
Laura Fraser The Risotto Guru
Mona Gable Blood Brother
Zoe Rosenfeld Owl in Darkness

Wednesday, October 22, 2014

Cannabis Oil Update -- A Boulder on the Path

As the world shifts its attention from Ebola and reels from the news that another Hollywood celebrity has chosen to butcher her original face for a new one, those of us in the medical marijuana community got a sad email and update from Realm of Caring who had been in the process of removing people off of its many thousands waitlist with the intention of shipping them Charlotte's Web  Hemp Oil. Here's the gist of the email:

Unfortunately, despite the fact that the U.S. imports more hemp foods than any other country, the common association of CBD with high THC cannabis has caused more scrutiny for these hemp products than expected. For example a Minnesota mother may be facing charges for possessing a CBD product which she obtained for her son. Such tragic events, combined with the ever changing legal landscape of hemp/CBD products, have forced us to reconsider all potential ramifications of our previous distribution plans. Simply put: the last thing we want to do is put the families we serve in jeopardy.

As a result, at the strong advice of our legal counsel, we have decided it is in the best interest of both present and future clients, as well as the longevity of the ROC program as a whole, that we hold our distribution plan to higher standards than the conventional hemp industry.

We sincerely apologize to those of you who will be most affected by these changes. We ask for your patience, understanding, and help as we work to educate and comply with federal agencies and to change the laws which block people from safe access to products like Charlotte’s Web. Please know that we are doing everything we can under the circumstances to help as many people as possible.

In a nutshell, even by classifying the high CBD product as hemp, the Stanley Brothers and Realm of Caring are concerned about the risks people who acquire the oil for their children might have in those states that don't have laws like California's and Colorado's. To protect them from possible prosecution, they state that they will be seeking clarification from the appropriate agencies in all 50 states in order to determine the legal accessibility and risks of possession of CBD products. I know many people who were so excited, so uplifted by the prospect of finally getting Charlotte's Web. They have children with epilepsy -- children who have all had uncontrolled epilepsy despite numerous medications and treatments over many years. These are children like Sophie who went nineteen years without significant respite from seizures and the side effects of 22 medications until she tried Charlotte's Web.

This is a complex issue, and I've felt uncomfortable at some of the infighting that sometimes occludes what this whole thing is really about -- our children's quality of life and ability to live to their full potential. I couldn't begin to explain it all here on this blog. The people at Realm of Caring and elsewhere are working incredibly hard to advocate on so many levels, and I am holding my breath that change will come sooner rather than later.

In the meantime, I hope you'll educate yourself about this issue. Here's a great PDF file (I think you can access it, but if not, go to the Realm of Caring website for more information) to read more information about this latest development. Put pressure on your legislators, put pressure on the federal government to help make these changes. It's absolutely critical.

And here's a great story that appears in Time Magazine.

SIG Alert

SIG Alert:

any unplanned event that causes the closing of one lane of traffic for 30 minutes or more

defined by California Highway Patrol and originated in 1955
by Lloyd "Sig" Sigmon

This morning, when it was still dark outside, I texted a friend that I'd be looking for signs today. I didn't mean street signs, but real signs that everything was going to be ok. Then I put on my red dress (see yesterday's post) and got out of bed to fix Henry's breakfast and drive him and the rest of the carpool to school. It's quite a haul to Henry's school -- probably only five or so miles that can take anywhere from twenty minutes to hours, if there's a problem on the 101N. This morning, there was a problem on the 101S, though, which meant my ride home was going to take a looooooooooong time.

Was this my sign?

I surrender to traffic, to tell you the truth (but do complain about it a lot). It doesn't make me angry as much as it makes me feel entirely weak, whimpery and ineffectual. At best, my mind wanders into the realm of -- well -- I don't know where it wanders. I think of nothing. You won't find me in a state of road rage other than an occasional derisional word I'll direct toward the weaving BMW driver (why, why do all BMW drivers act so cocky?), and this morning was no different. Once I heard on the radio the dreaded SIG Alert words, I decided that I'd take Ventura Blvd home and listen to Mary Shelley's Frankenstein, but since everything today was going to be significant, a sign, I felt repelled by the reader's placid English voice and realized that I didn't want to think about horror and the creations we've wrought on this earth (because everything just is) even as brilliant metaphor. I pulled into a Jon's parking lot to download some Pema Chodron. Her name popped into my head, so I took that as a sign. I thought I had chosen a book, but it turned out to be a seminar that she taught, and my mind wandered to the sound of her sweet voice and gentle laugh as I meandered down Ventura and then into Hollywood. 

Be compassionate and kind toward all beings and particularly yourself, Pema said. I closed off that line of traffic in my head that's bogged down, stuck and afraid, and felt my heart open up right there in my red dress in my sexy white Mazda on Ventura Blvd. 

Tuesday, October 21, 2014


The Cure

Lying around all day
with some strange new deep blue
weekend funk, I'm not really asleep
when my sister calls
to say she's just hung up
from talking with Aunt Bertha
who is 89 and ill but managing
to take care of Uncle Frank
who is completely bed ridden.
Aunt Bert says
it's snowing there in Arkansas,
on Catfish Lane, and she hasn't been
able to walk out to their mailbox.
She's been suffering
from a bad case of the mulleygrubs.
The cure for the mulleygrubs,
she tells my sister,
is to get up and bake a cake.
If that doesn't do it, put on a red dress.

Ginger Andrews

Monday, October 20, 2014

Fragmented Iconoclast

Weird, right? These new phones are a marvel. I am not an iPhone lady, but I am a Samsung Galaxy lady, and Oliver showed me how to turn a plain old photo into a stylized creation. I don't know what you call this, and it's not even an app, but the possibilities are endless, and I wasted a good bit of time twiddling around with different settings today. Maybe it wasn't really wasted time, though. I also taught Oliver about grammar (subjects and predicates), read him some history (the relationship between women fighting for their rights in the eighteenth century with the abolitionists) and listened to some Johnny Tremain, as we drove around the city. Yeah, remember old Johnny Tremain? I read it in eighth grade, too, and while I didn't exactly love it, I remember it, and there's comfort for both Oliver and me that he's reading something at "grade level," for what that's worth. This homeschool thing is a lark most of the time -- I wish everyone would take a jab at it and help me to dispel some of the illusions about it -- or delusions that you have to spend $40,000 a year for your kid to learn. But back to the wasting of time (not money). I confess to being bored out of my mind whenever I see one of those posts or news clips about how technology is killing our children or how we're being sucked into the internets, forswearing all social connections. Or the end of books or film or Buffalo sandals and appropriate underwear. I'm sure there are plenty of folks out there who have troubles with monitoring their screen usage (and I'm not above yelling at Henry, in particular, to put that thing down!). just as there are those that watch too much porn or drink too many glasses of wine or smoke too much pot, but let's face it. The things are here to stay, and rather than freaking out about them or instituting those unplugged rules, why doesn't everyone just relax? I have this theory that as technology pioneers, we are really just caught in the slipstream of where we're going. Does that make sense? We can't see that far ahead.

What Are You Doing This Thursday Evening?

Los Angeles! Come to our Shebooks Shebang! 
This Thursday. 
Shebooks Party and Reading

October 23

7:30 - 10 pm

Admission: $5

Center for the Arts, Eagle Rock
2225 Colorado Boulevard
Los Angeles, CA 90041

The night will feature drinks, music and readings from Shebooks authors:

Elizabeth Aquino
Denise Emanuel Clemen
Laura Fraser
Mona Gable
Zoe Rosenfeld

Sunday, October 19, 2014

Shooting into the light

That time we lived in the old evangelical church with the full-immersion baptismal font right in the middle of the living room. Was there a painting on it, some fake tile or the rivers of Babylon? The altar was a kitchen, but we rarely cooked, and the only thing I remember is a microwave dinging when your spinach from the can warmed through, a pale slice of cheese melted on top. I think there was an old television, but we didn't have cable, and besides for Jeopardy and Star Trek, it was never turned on. The front doors -- it was a church -- opened to a vestibule and off that was an office where your shuffle was silenced by fake fur on the floor and all four walls. Or was it brown shag carpeting? You took your spinach in there and wrote on some giant early computer. It's funny, but I don't remember the bathroom at all. I think it was off the closet which was big for closets. I lined up my business clothes along the back wall, my pumps below. The bedroom was right there, to the left, the bed a boat where we drifted in and out with the tides. The back door, too. I think it was off  the bathroom that I can't remember, and just across the cement path, where those Laotians with the beautiful babies lived in a concrete outer house, the smells of something cooking that didn't seem right.

Saturday, October 18, 2014


Of all the photos I took tonight of Henry and his beautiful date to the homecoming dance, I think this was my favorite. There's a story behind it about last minute hysteria, white shirts that were too small, a neighbor jumping in to give him another one, its starched cuffs and cufflinks (new to Henry), and  the white wrist corsage for his date in a plastic box. I looked at that boy there and practically burst with love for him -- not because he's so damn good-looking but because he's so all grown up and beautiful yet still my little Henry-boy.

Saturday Three-Line Movie Review

Gone Girl

I confess that I'm one of the few people in the universe that didn't unequivocally love the book (but rather thought it was one of the more hateful things I'd read in years) and had no intention of seeing the movie, but I was persuaded to do so when the alternatives were to attend a high school football game, hang out in the Valley or watch Dracula: The Truth Untold, so you can imagine my desperation and low expectations. Despite the visual candy that is Ben Affleck and Rosamund Pike, I maintain that just like the novel, the movie is a slick and soul-less creation with no sympathetic characters that made me long for the halycon days of real thrillers and intimate portraits of marriage and lust, not to mention a hot shower. When my children texted me about two hours in that the football game had ended, I gratefully clambered over the rapt audience and left the theater, missing not only Ben Affleck's supposedly glorious netherparts, but also, evidently, and as usual for me, the depressing cultural zeitgeist in this, the two thousand and fifteenth year of our lord.

More 3-Line Movie Reviews

Saint Vincent

Get on Up
Begin Again
The Immigrant

Cesar Chavez

The Grand Budapest Hotel

Labor Day 

Friday, October 17, 2014

Go Whoopie, Paige Figi and Joel Stanley!

Watch the link from this morning's The View, here.

What can you do to help us? ABC wasn't allowed to talk about "the politics," of medical marijuana, but many of us are working hard to get a bill passed in the United States Congress. Titled HR5226, the bill amends the Controlled Substances Act to exclude therapeutic hemp and cannabidiol from the definition of marijuana. The bill does not impose additional restrictions on those states who have already legislated the use of cannabis and is an incremental approach to provide relief to those suffering from ailments and diseases that could benefit from CBD oil and therapeutic hemp like epilepsy, severe seizure disorders and other neurological impairments.

By moving the non-psychoactive supplements into a separate category, this bill will not only provide quicker access to patients, but will allow these safe supplements to be produced on a mass scale under agricultural regulations while keeping the price affordable for patients.

It simply makes no sense to keep these products, which have no potential for abuse, lumped in with psychoactive compounds that are, and likely will be for a long time if not forever, strictly regulated.

You can write your congressman or woman and ask them to support HR 5226 -- The Charlotte's Web Medical Hemp Act 2014.

From a California mother and advocate:

This is what prompted HB105. We recognized the many needs beyond epilepsy. We did our best. Our best made us the first state in the country to pass this type of hemp bill. Now, we're asking the US to do the same via HR5226. Both Congressman Stewart and Bishop have co-sponsored along with some 30+ other Congressmen. Send a respectful email to your Congressman asking him or her to co-sponsor HR5226.
The bill is brilliant. All the it does is separate the definition of hemp from marijuana based on THC levels and removes CBD, a natural derivative of the cannabis plant which doesn't produce a high, removes both from scheduled drugs.

Thursday, October 16, 2014

Around whom I spin

I've been worried about Sophie lately. Maybe the word lately is superfluous. I have worried about Sophie and worry about Sophie perhaps all the time, but lately I've been worried about Sophie. She has some strange behaviors that are subtly different than any she's had before. She rotates her right ankle a lot, almost collapses it onto its side. She contracts her right arm a lot, too, and flings out her right leg. She seems uncomfortable or maybe not. I don't really know what she's feeling. She has less seizures of course, because of the Charlotte's Web, but we're still waiting to get the higher ratio oil that really stops them. Until then, we've compromised and are not weaning any more Onfi. She goes on liquid fasts periodically now and just refuses to drink. I don't know what that's all about, so I basically force it into her -- take the little plastic thing that makes it a sippee cup out of the lid and tilt it into her mouth. She is very resistant to a lot of things and only seems happy and content when she's in her room, alone. She lies on her bed or sits cross-legged on the floor and fiddles with beads and baby toys. Don't tell me that this is what teenagers do, because it's not. I think, at best, that her brain is not so preoccupied with seizures so she's more aware of her surroundings, and the sensory input might be almost too much for her. She might be blocking it out, stilling the chaos. Again, I have no idea. When she arches her back and refuses to sit in a chair, I wonder if she's in pain or whether she's developing behavior problems. I hate this kind of worrying. I've said it before. It's the little things, sometimes, that do me in, make me crazy. If I ever do run away to Bora Bora, it won't be because of Sophie's epilepsy or the fact that she will never be normal. It will be something simple that breaks me, a link on my twenty year old tale that like a Christmas light on a string just goes out and brings down the whole strand.

Today, though, it was a little thing that made Bora Bora just another island in the South Pacific. Sophie's teacher sent me that photo, with this text:

Nice time for Sophie during the earthquake drill. Nice, soft turf and soil. She got to walk without physical support in the sunshine for a while. Of course I was right there. But I couldn't resist the urge to snap a happy picture of her in a rare moment of liberation.

Stuff like that makes me want to stick around. I am going to face it. She is the person around whom I spin.

Angry Yoga and Unexpected Salvation

Thank you, dear Michelle.

Wednesday, October 15, 2014

High Time, About Time, Good Time

The Shepard Fairey mural at the end of the Trader Joe's Alley
La Brea and 2nd

Sophie's wheelchair approval went through, and the chariot has been ordered. Since it began its journey to us back in April, I have no idea when it'll land, but hopefully before Sophie demands some new and more exotic transport.

It's high time.

We're still waiting on paperwork for the ambulatory EEG, and I'd be lying if I told you that I haven't put much effort into making that happen because -- well -- I'm tired of doing it.

Good time.

Right now, I'm patiently coaxing fluids into Sophie as she is on some sort of liquid fast. I have no idea what that's all about, would like to imagine she's protesting some injustice somewhere in the world, but in the meantime, you do what you have to do. That means lying on my side and putting the sippee cup to her lips every ten seconds and then pulling it away before she throws it away.

If I did, it'd be a good time for a high time.

Reader, how was your day?

Mexican House Envy

via AD

You'll find me here today.

It's part of my news black-out as of 9:23 am, Pacific Time.

At least in my mind.

Tuesday, October 14, 2014

Broccoli and Autism and Seizures, Oh My

Carlsbad, CA 1997

Sulforaphane is believed to prompt a cellular stress response in the body much like a fever does when a person is ill. Researchers said they were inspired to try the treatment after hearing anecdotally from families that fevers seemed to trigger improvements in autism symptoms.“We believe that this may be preliminary evidence for the first treatment for autism that improves symptoms by apparently correcting some of the underlying cellular problems,” said Paul Talalay of Johns Hopkins University School of Medicine, a co-author of the study.

That quote is lifted out of an article that I read today with the title Autism Symptoms Eased By Broccoli Extract, Study Finds. Despite reading it on my Disability Scoop digest, I almost thought it to be a joke, but I clicked anyway and was blown away, especially by the sentences I've highlighted about high fevers. I have probably written about it here before, but in case I haven't, Sophie has always had a near-complete cessation of seizures during periods of high fever. In the days leading up to illness, she might have increased seizure activity, but once the fever begins, they nearly always have stopped. She doesn't really get sick like that anymore, though, so I'd forgotten about it. I do remember that we'd joke about instigating a treatment of provoked fever as an anti-epileptic. She is markedly calmer and more relaxed then, too, and while we've always attributed that to fatigue or a symptom of the fever/illness itself, the cessation of seizures (as opposed to exacerbation, like most people with epilepsy) is remarkable. No one has ever responded to that observation, though -- at least not her doctors.


I have also heard of the improvement in behaviors that some people with severe autism experience during fever, and I know that while Sophie has never been technically diagnosed with autism, the two diseases share many characteristics and many people with autism will also experience seizures at some point in their life. Anyway, this article is fascinating, and I'm thinking about finding some broccoli extract and adding that to The Regime.

Here's the link.

Monday, October 13, 2014

Marlon Brando and April

Our neighborhood "art" -- Lenin and Madame Mao
La Brea and 4th

It's late, and I wasn't going to write anything at all, but the back door is open and the screen door is letting in some cool air and finally the air-conditioner doesn't need to be on and over crickets chirping, I hear a man screaming the name APRIL! APRIL! APRIL! over and over. I wondered for a split second whether it was a homeless person on La Brea but prefer the hope that it's some Stanley Kowalski, or better yet, Marlon Brando in a tight white tee-shirt yelling April's name with his beautiful mouth.

On my walk this morning,

I only looked up for a moment, but a key was hanging from a high branch. I will take it as a sign that I can open a door somewhere. I also saw the most perfect pink rose with one drop of dew on it, and a line of little black plastic bags of dog poop, all neatly tied with a bow.

Sunday, October 12, 2014

How Not to Figure Things Out

dedicated to Mary, Tanya, Heather and my Mom

It occurred to me the other day that I'm not going to figure things out. I probably use that expression many times a day in various forms -- I can't figure it out, You'll figure it out, Figure it out! I need to figure it out, Just figure it out! -- and certainly popular culture is filled with tips on how to do it or on how other people have done it. I can figure out a math problem or how to work my new phone or what to do about Oliver's schooling or how to help Henry navigate high school, but there's no figuring out the really big life things. I'm not saying that things just happen without effort and thought, but it's a rare big life thing that is figured out in the sense that one comes to an answer in a direct way. Does this make sense? Because there's a lot that is unbloggable now in my life, I might sound vague, but what I can draw an analogy to is my early years with Sophie, right after she was diagnosed and probably for the next ten years or so when I was always trying to figure things out. This meant many active hours of brain anguish, of being on all the time, in the event I'd miss something. When I say that, I mean it quite literally. I spent conscious and unconscious hours worried that if I didn't do something or think something or research something or talk to someone about something, I'd miss the chance to fix Sophie. In other words, I would miss figuring things out. I remember with an almost PTSD-like intensity the cover of a Time Magazine article about child development and the brain, how at age three, a window shut on language. I believe that has been debunked since then as we've discovered the brain's capacity for amazing feats of regeneration, but the sound of that window slamming haunted me for years. I spent a lot of time trying to figure things out before that window slammed and well afterward.

When I sat down to write this morning, I looked at the collection you see in the photo and realized that I'd made a sort of shrine, and that gazing often blankly at these things helps me to center myself and channel all the energies I have in me and outside of me to create and to write. There's a card there at the back that a blogger friend who's become one of my best friends sent me. There's a little jade statue of the Buddha, and a tiny tin of holy dirt from a shrine in New Mexico that my friend Tanya brought me. There's a bit of driftwood from the beach in Victoria where I spent a week last year, a week given to me by Heather McHugh and her organization Caregifted. There's a little house behind it with the words A house without books is like a room without windows. These objects sit on a box of postcards from Penguin that replicate one hundred book covers, and in front is a glass coaster that my mother gave me years ago with a sweet saying. I always feel joy and content when I write, to tell you the truth, and that's true for both online and off-line writing, but particularly so when I sit in a sort of reverence and allow it to just happen. I hesitate to use the word channeling for all its over-used weight, but I'm not sure what else to call the release of fingers on keys, the rush of language and words falling into place. I'm not figuring things out, though, and it's not about me.

I get a lot of emails and telephone calls from people with little children who are new on the path of disability or epilepsy. I'm always struck by their bravery and by their sense of urgency as much as by their anguish. I recognize all of their emotions because I've had them or continue to have them. When I cast my memory back to my own early days with Sophie, I remember the visceral details of trying to figure things out, but I don't remember much of who I was or how it happened, or even how I did it. I want to say, sometimes, you won't figure things out, but even twenty years later, I don't have the wisdom -- or presumption -- to do so.

If I could, I'd tell them how not to figure things out, but I haven't figured that out either, other than to treat with reverence and love this place inside of me that persists in opening to possibility.

Saturday, October 11, 2014

Saturday Three-Line Movie Review

Saint Vincent

The only reason I'd even mention the movie Gone Girl here is not because I went to see the movie (and I won't because I hated, really hated the book), but because I want to prove that I'm not some kind of reactionary or pretentious contrarian. I really can't get enough of Bill Murray and realize that you probably can't, nor can you or you or you. Bill Murray in Saint Vincent is Saint Vincent, the supporting cast, brilliant little planets to his sun, and me (and you and you and you) bathed in light for having watched the show.

More 3-Line Movie Reviews

Get on Up

Begin Again
The Immigrant

Cesar Chavez

The Grand Budapest Hotel

Labor Day 

Friday, October 10, 2014

Dispatch from the Verizon Store

I know I'm late to the game, but Chipotle's disposable drink cups are printed with Cultivating Thought Author Series, and while I read about it somewhere a while back and thought it sounded pretty ridiculous, I have to say that it sure came in handy today after the second hour of standing on my feet at the Verizon store where the Young Verizon Clerks worked at a glacial pace to upgrade the four phones that our family owns. I'm not complaining or anything because how can one complain about owning four smart phones without sounding like a privileged jerk? But really -- how did we get to a world where you can wait for hours at a Verizon store for your smart phones to be updated and also read a bit of Toni Morrison and Malcolm Gladwell's writing on the back of a paper cup? The stories are even illustrated, albeit awkwardly, as you have to turn the cup around to really see the drawing. Some first world problems might even be negative number world problems, they're so lame. Gladwell's story on my cup was a little memoir called Two Minute Barn Raising, and it made me laugh out loud and then sigh, sated by the glory of words and those who wield them so beautifully. I'm almost tempted to type it out right here, but who knows what sort of copyright laws I'd be violating if I did so. I wonder if writers are paid for every paper cup read or are they paid a set fee? Do they write something special just for the cup or do they pull something short out of their archives? I didn't get a chance to read the Toni Morrison because Oliver threw it away before I realized that there was something good to read on the cups, and that made me feel a tiny bit guilty. I might keep the Malcolm Gladwell cup on my desk for a few days, though, to make up for it. I would have liked to see a David Sedaris story on a cup, though, or even an Annie Lamott, and when I exclaimed over how great it was to have something to read while we were waiting, The Brothers looked at one another and rolled their eyes. There's not much I can do or say that doesn't substantiate their belief that I am an insufferable loser -- an old one, at that. I won't let on that I feel superior to them in my preference for great writing on paper cups over shiny smartphones that take foreeeeeeeeever to set up.

I don't have a title for this post

If you'll forgive the possibly distasteful metaphor, I feel as if I'm in an iron lung. I need air and movement. The interminable construction site that is my street and the surrounding area fills the air with whine and hum and hammering -- perhaps also a metaphor for my own complaining, So here's some gratitude: the only part of my garden that isn't dead and brown is the path leading to the side yard where we keep the garbage cans, and that little sliver is just gorgeous. Here's a photo, no filter:

Here's a close-up of the purple flowers on the left:

And that's bougainvillea that is squeezing through on the upper right -- no one planted it, but it's determined to flower there. I noticed yesterday as I drove through Beverly Hills that they'd finally stopped watering the median on Burton Way. It's a wide expanse of green flanked by some ultra fancy hotels and shops, and I always found it irritating to see sun-illuminated sprinklers watering at any time of the day. I guess the fancy folk have decided to join the hoi polloi and endure dead grass in the name of conservation. Hallelujah. I sure wish it'd rain. I wonder when the rain dances begin -- didn't Governor Rick Perry of Texas declare a state-wide Pray for Rain day? I'm in if it works, although I'd prefer some kind of dance, too.

What are you reading? I'm reading a very interesting and good novel by the English author Elizabeth Taylor. The book is called Angel, and is not just beautifully written but weird in just the right way. One of the friends I visited in Chicago the other weekend, probably one of the most well-read people I know, recommended it. I hadn't ever heard of that Elizabeth Taylor, and while this friend doesn't know me all that well, he apparently knows me well enough to have suggested something that I really, really like.

Evidently, I need air, movement and inspiration because this post is going nowhere. The only thing I can possibly say for it is that life here at a moon, worn as if it had been a shell is an ongoing conversation. I'd love to hear your thoughts. What are you reading? What are you listening to? Is it raining where you live? Every time you hear the word ISIS, do you think of on the fifth day of May, like I do?

Thursday, October 9, 2014

The Perks of Blogging and Living in Hollywood ***

So, if you blog regularly you might get some pretty weird marketing emails in your inbox. Evidently, many people live off of their blogs or at least collect tidy sums from them. In the early days, I responded to a few and got some pretty beautiful Le Creuset pots and pans in the most amazing turquoise. That was worth reviewing weird products like sweat wipes for your adolescent and inserting links to barstool companies. I used to put ads on my blog, too, through the nightmarish mom's blog metropolis, but let's face it -- they're obnoxious and made me feel ashamed to participate in the grosser elements of our culture. Let's not even talk about the phrase mommy blogger. My blog is named after a line in a Yeats' poem, for goodness sake, and I slapped that name on it over six years ago because I didn't know what the hell I was doing. It couldn't be any more ponderous or even, arguably, pretentious, but c'est la vie for a moon, worn as if it had been a shell. I removed all ads from my blog a long time ago, and I just like it so much better. All me, all the time -- like Faye up there, after her big win. I sure didn't think that I'd attract some of the things I happen to attract now. Today, I received -- for the second time -- an appeal that I think you might enjoy.

My name is XXXXXX, and I am a producer for a major network here in Los Angeles.  I saw that you ran the popular Elizabeth Aquino blog and I wanted to see if you or any of your friends would like to be a part of our new TV series. Please see the verbiage below:


Are you and your family terrified of going to the doctor?
Are you afraid of what you’ll uncover?
Are you hiding symptoms from each other… and even yourself?

A MAJOR BROADCAST NETWORK and TWOFOUR AMERICA are now casting families for a radical experiment! This new and exciting show will help change your life and uncover all the things that might be lurking under the surface … ultimately improving your health, happiness, and your life forever - not just for yourself, but for the whole family.

We are looking for families in the greater Los Angeles area who are ready to undergo this transformative experience and face their doctor fears once and for all.

Families of all shapes and sizes are welcome, but families must include children and/or teens.

Good lord, ya'll. Should I respond? Maybe I'll do so in another post.

Elizabeth, of the popular Elizabeth Aquino blog

*** In case you don't understand this post or are visiting for the first time, think of the word irony.

What We Make

photographer: Alain Delorme

I was thinking about diamonds and the world's biggest necklace. 

Bob Dylan

I was thinking about how so much of our life consists of stories that we make up, word by word, sentence by sentence, paragraph by paragraph, page by page. Days and then years go by in the telling. At worst, we lie to ourselves through story, believing it. At best, we are wildly creative in our elaboration.

I was thinking about how so much of life itself is a house of cards -- at least the life of humans -- everything stacked precariously, both ill- and well-intentioned, with nothing, really, at the base. If I cast my mind back to the days when I worked for a retail brokerage firm in Nashville, Tennessee, I felt that house of cards tremble when the stock market crashed in 1987, the grim faces of my work colleagues, the quiet and stifled panic. I looked across the huge room where we all sat behind glass walls that ringed the perimeter, can see as if it were yesterday, the face of a young man whose name I've long since forgotten, his bowed head in his hands. Marriage is a house of cards whose base is sometimes nothing more than a piece of paper. Men who love men and women who love women have added their own cards, and every time a card is added, the whole pile seems about to collapse. Dissolution is another card. The fragility of it all makes me tremble.

I was thinking about the Ebola epidemic in Africa, how the crazies are already blaming Obama for letting it in. I'm not sure why some things induce such panic (Ebola) and other things are pushed aside, even denied (climate change). 

I was thinking of how we make up stories, card by card, and fuel our illusions.


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