Thursday, September 29, 2016

My BlogRoll and All Links Have Disappeared!

Vintage Candid Mug Shot, 1920s



I have no idea what's going on in mysterious Blogger blogworld, but my beloved blogroll has disappeared from my sidebar and I have no idea how to get to all of your blogs!

Help!

If you know about this problem (and I poked around a bit on Help Forums, so I think many are having it) and know what to do, let me know.

And please, please, please, if you're a regular reader with a blog that you know once sat beautifully on my sidebar, please leave a comment with your blog address so that I can create another list.

Oy vey.

You Are Not Alone


Point Lobos, CA


I don't believe in the power of prayer.  Even if you insist. I do believe in the open-ness of intention. That might sound ridiculous. I held Sophie in my arms this morning and asked for mercy and light. I know that I can't pray for Sophie to be healed, nor for me to know how to fix things, to figure them out. I know that I can be opened to caring for her more fully, more presently, with more resilience and calm. I know that I can gather her in my arms, her limbs wrought from mine, all her limbs. I know that healing is around us, in the air, in the crunch of yellow flowers that litter the lawn, brittle yet bright, despite.

Ask and open to receive.













It doesn't seem fair to weave some words together and fling them out there. Sophie is at school today.  She's not great, but she's at school. I'm taking her to the osteopath this afternoon. I'm surrounding her with wellness in spite of the relentless downturn. That's the way I've done it for two decades. I spoke to Dr. Goldstein this morning, the doctor who helps us with all things cannabis-related. For the first time in weeks, I felt helped. We have a plan. Dr. Goldstein said, You are not alone. I will help you.

Wednesday, September 28, 2016

Ode to



I know, I know, I know, I know. I am barely coming round the mountain these days, much less here on the old blog. I'm writing, though, quite a bit offline, so don't leave me. I might be asking you to buy my book one day. I might also ask you to find me the perfect job -- one that I can do at home while tending to Sophie as she goes through her ups and downs, pays hooky from school, gets hives, has her medications reduced, gets her THC and CBD dosages tinkered with -- you know the drill. I think.

Last night, as evidenced above, I went to the downtown library to hear the magnificent poets Robin Coste Lewis and Sharon Olds read from their books and then have an inspiring conversation with the moderator and writer Louise Steinman (she actually has my dream job as curator of the ALOUD program). I don't even know what to say about how fantastic Robin and Sharon were -- how inspiring and funny and moving and strong. It was one of those nights when I felt exhilarated to live in this city, to be a woman and a writer and feminist. It was especially cleansing after the clusterf*&k Presidential debate the night before.

Good Lord, ya'll. My status update on Facebook got about five million silly "likes" and as many shares and comments, and all I said was:

It makes me want to weep that our first female candidate for President has to debate this colossal piece of shit.

That's all I'll say about that -- oh, except that if you're still "on the fence" or "voting for the lesser of two evils" or any of that balderdash, I hope you spontaneously combust.

I'd post one of the poems that Sharon Olds read aloud last night called Ode to the Clitoris, but I haven't gotten my copy of her new books, so here's one of my favorites from an earlier collection. Prepare yourself.


I Go Back to May 1937

I see them standing at the formal gates of their colleges, 
I see my father strolling out 
under the ochre sandstone arch, the   
red tiles glinting like bent 
plates of blood behind his head, I 
see my mother with a few light books at her hip 
standing at the pillar made of tiny bricks, 
the wrought-iron gate still open behind her, its 
sword-tips aglow in the May air, 
they are about to graduate, they are about to get married,   
they are kids, they are dumb, all they know is they are   
innocent, they would never hurt anybody.   
I want to go up to them and say Stop,   
don’t do it—she’s the wrong woman,   
he’s the wrong man, you are going to do things 
you cannot imagine you would ever do,   
you are going to do bad things to children, 
you are going to suffer in ways you have not heard of, 
you are going to want to die. I want to go 
up to them there in the late May sunlight and say it, 
her hungry pretty face turning to me,   
her pitiful beautiful untouched body, 
his arrogant handsome face turning to me,   
his pitiful beautiful untouched body,   
but I don’t do it. I want to live. I   
take them up like the male and female   
paper dolls and bang them together   
at the hips, like chips of flint, as if to   
strike sparks from them, I say 
Do what you are going to do, and I will tell about it.

Sharon Olds

Sunday, September 25, 2016

Sunday Night

Homeless Encampment, La Brea Blvd., just south of Olympic
Los Angeles, 2016


Sophie's not doing too well, again. I'm not sure what's going on or when it's going to turn or even if it's going to turn. It's not so much seizures (although they're persistent) but more her overall well-being. This feeling I get when I spoon food in her mouth and she's working so hard to chew it. Or maybe she's not working at all. The way her juice comes out the corners of her mouth and drips down her arm. I imagine the sensors in her mouth dulled, struck by lightning, over and over. Some food falls out of her mouth and down the bib and I look away. I have been watching the suffering for a long time. She has been suffering for a long time. I'm not sure whether she actually is suffering or whether I am suffering doing the watching. The lines between us are blurred. I realize that's fucked up. Mea culpa. I forget to abide. I'm not sure when those questions when will it get better? will I figure it out? is it this? is it that? will she know? what should I do? will he know? stopped rising out of my brain. Perhaps I stopped feeding them the yeast of discontent and doggedness. The line between resignation and acceptance is thin and bloody. My tears are still clear. It's all pretty mighty and terrible. Terrible in the Biblical sense. Like awesome. Everything unleavened.

The only thing is to Be Here Now.


Today, my friend Melissa stopped by with her husband Marc. I haven't seen them in ages or even talked to her in while. I had been sitting in Sophie's room, reading a book while she slept fitfully, loaded up with rectal Valium. I'd been crying. A lot. Melissa texted me from outside, so I went out there and gave her a hug. She gave me a tiny silver medallion with a mermaid on it. She had no idea I'd had such a morning, that Sophie had had such a morning. Yet she was there with a mermaid charm. Everything lifted. Poof.







I read this somewhere:

You are my compass
I'm perpetually lost




I love this:






Friday, September 23, 2016

How We Do It, Part LIX



I was all psyched to let ya'll know what happened today when I made my visit to my neighborhood police station, but then this happened, and since I still have a phone call to make to clarify some of the things I learned in a discussion with a peace officer, I'm going to tell ya'll about this instead of that.

It's nothing, really, but just as I was texting with my fellow special needs parent Heather about the soul-killing texts we get from our respective daughters' schools, about their various bodily functions, numbers of seizures, etc. (and god bless the teachers and aides, I'm not dissing them), Sophie's bus pulled up in front of my house. I was in my bedroom and heard the tell-tale squeal of the brakes, but Oliver yelled from the front of the house anyway, MOM! SOPHIE'S BUS IS HERE! I got up from my desk and made my way through my mansion and out the door to the end of the driveway where the bus had parked. It wasn't until I got to the end of the driveway, though, that the door opened, and a tiny little young man climbed down the steps and greeted me. He was, perhaps, twelve years old and dressed in a bus driver's uniform. He held a clipboard.

Hello, he said to me.

Hi there! I said and peered in to see Sophie.

I'm going to need to see some identification, he said.

I looked at him and then around and then behind me, where Oliver stood looking at me. Oliver rolled his eyes.

Excuse me, I said. I'm her mother!

Sophie's bus aide poked his head around and told the Boy Bus Driver that I was indeed her mother.

The Boy Bus Driver said, Oh, you look different and I need to be sure that you are her mother. I'll need an identification. Given that I've thought about gardening in the nude to scare away McMansion buyers and developers, I looked down to double-check my appearance, but I had remembered to wear pants, my white eyelet blouse wasn't as revealing as it could have been, because I'd worn both bra and camisole and with the possible exception of glasses and long hair with a streak of gray at the top, I look much the same as I've looked for the past several years. I'd even venture to say that I look better than I have in the last several years as I'm much happier, but that's basically unbloggable material.

Anywho.

Reader, this was definitely a first in the near-twenty years that Sophie's been riding the bus home from school. Granted, she often disembarks from the bus into the welcoming arms of one or two other caregivers or even her father, and bus drivers come and they go, and I can't always keep track of them. I turned to Oliver whose eyes by this time had rolled so far back into his head that I couldn't see them. Oliver is privy to much of the shenanigans and encounters with the LAUSD because I homeschooled him for a couple of years, and he's got a sense of humor as dry as southern California, which is pretty damn parched. He's also got a memory like a steel trap and swears he remembers me screaming at one of the officials from Sophie's middle school back in the early part of the decade when he wasn't even five years old. He said I was pretty scary, and I said, Who me? Bless your heart!

Oliver, go get my wallet, please, I said, and he ran back up the driveway and into our mansion. He came out a few seconds later and handed me my driver's license which I then gave to the Boy Bus Driver. He took a look at it, at me, down at his clipboard and then back at it and at me and back down. He nodded and then proceeded to let down the bus ramp. I caught myself from making some unorthodox crack about how I'd certainly want to meet the woman who'd kidnap Sophie because damn, she'd make the best wife for me, because -- well -- you know. Boy Bus Driver didn't look old enough for that kind of folderol, seemed far too earnest to appreciate the insane gallows humor that keeps me alive.

As the ramp slowly descended to ground level, he made himself look extremely busy and efficient pushing all the buttons and undoing all the straps while Oliver took Sophie's backpack from her aide and slung it over his shoulder. There's still something a tiny bit painful about watching the ramp descend to the sidewalk. Sophie looks disheveled in her wheelchair, and the fact that she can't communicate about her day, about the bus, about the Boy Bus Driver or really, anything, just hits me hard sometimes.

Oliver looked at me, then at Sophie and then at the Boy Bus Driver and said with a straight face, Hey, that's not Sophie. That's not my sister. 

Then we took off, me pushing Sophie up the ramp to our mansion like she was a queen in a chariot, and Oliver holding her backpack stuffed with jewels.

Thursday, September 22, 2016

There is Nothing New Under the Sun and Love is Still a Verb

Russell Simmons


A dear friend wrote me an email, asking me where I'd been on the blog and why I wasn't posting as often as I generally do. I can't really tell you why, other than I feel a bit dumbstruck and distracted by various things in my life (good ones) and by the shitstorm/clusterf*^k of the last few weeks in this country. I don't have anything more to add to what you've already read about the senseless brutality against black people by police officers or about the monster that is running for President of The Disunited States. I have decided to be as vocal as I am wont to be and even went so far as to tell a particularly dense white commenter on a black friend's Facebook page (you know the kind -- the one that says all lives matter and spends an inordinate amount of time making excuses with rhetorical questions) to STFU. I actually told someone to STFU and LISTEN for the first time in my life. I know there are many of you out there who will read that and raise your eyebrows and think that I should be less angry or maybe more tolerant or more Buddhist or Christian or gracious or whatever, but in this case I was not, and I do not regret it for one moment. The person who was doing all the mansplaining asked me another rhetorical question and then bowed out of the discussion. While I don't pretend to know anything at all, nor that I am able to change everything, I do know when we white people are flailing around and making excuses for something that is obvious and plain to see, and I do take seriously the directive of black people who are asking for us to be co-conspirators and not just allies. I agree with my friend and mentor Lidia Yuknavitch, too, who said the following:

well hell, i'm of the mind that we need all the voices, the signatures and protests, i think we need the calm and eloquent voices, i think we need the riots, i think we need the diplomatic nice people who call for balance, i think we need the agitators and rabble rousers and those willing to risk danger, i think we need all the stories and images and yawps and poems. i think we need it all. radical change does not come from one mode, one voice, one way of articulating. radical change comes from a plurality of voices that rise variously and unstoppably and refuse to shut up.

Tomorrow, Oliver and I are going to our neighborhood police station (a couple of officers whom I know personally since I've called them to intervene in the bullshit goings-on at the McMansion built behind my house) and enquire about how they as a station or part of the greater LAPD are working on non-violent conflict resolution. I'm going to tell them that I'm concerned and upset by what's happening in other parts of the country and hope that they are, too. I'm going to ask them what their policy and saturation is regarding body cams. I'm going to tell them, too, that I will be writing about their answers on my blog.

It's a little thing, such a small thing, but if we could all grab that veil and keep pulling we just might change things.

#blacklivesmatter

Sunday, September 18, 2016

A Short Erotic Tale From A Nail Salon

The Butterfly House
Pacific Grove, CA

I'm so behind.










I'd had the shiny red gel polish on my nails for over two weeks, found myself curling my fingers under so I couldn't see it. Garish. I'm not a manicured hand kind of person, prefer to use clippers, the blunt. I have large hands, but they're not ungainly. My fingers are long and not too wrinkled. They are dexterous and strong. I feel too self-conscious with polish on them. Gel polish lasts for weeks, but you have to go back to have it removed or risk something dire like your nails peeling off. I can't believe I'm writing about this. It's a process to get the gel polish off, and I was getting impatient as the manicurist dropped acetone on my fingers and wrapped each nail in foil, then scraped the color off and repeated, over and over. There were three of us lined up at the table across from three manicurists. The lady to my immediate left was an Orthodox Jew. She wore a pleated navy skirt, a blouse with a Peter Pan collar, a crew-neck sweater, pale panty hose and flat shoes. She was in her early twenties, yet had a wedding band on her slender finger. She had beautiful eyes with dark long lashes and white skin. The manicurist was buffing her nails, but before each new task, the Orthodox woman asked, What's that for? She exclaimed sweetly over my own red nails, wondered what the process was like and whether she should try it. I told her that I'd done it for a party and enjoyed it for about a week. It doesn't chip, I told her, but I'm sort of creeped out by it now. I told her that sitting for an hour getting it removed was not something I'd probably do again. The lady to the Orthodox woman's left was slumped in her chair, her long black hair scraggly and draped over her shoulder. She had blown up lips, bare of make-up, and they looked painful. Her white face looked like it hurt, and I couldn't tell if she was twenty or fifty years old. She tapped at her phone with whatever hand was free, her nails bitten down to the quick. She groaned every now and then, said she was tired and hung over.  It was late afternoon, the light from the west flooding the room. The sun was going down and, for some, it was apparently time to get ready. For what? I wondered. The manicurist attached what looked to be two-inch plastic nails to the tips of the hung-over lady's fingers, filed them to a point, painted them gray. The two of them then huddled over the woman's phone to look at what I assumed were photos of hands and nails, and then the manicurist brought out a little box of glitter and jewels, proceeded to pick them up with a tiny pair of tweezers and apply them to the lady's daggers. Meanwhile, my own manicurist unwrapped the foil from my finger, lifted the acetone-soaked cotton pad from my fingernail and began scraping the last bits of red still adhering. The Orthodox woman moaned when her manicurist poured lotion on her forearms, stood up and began massaging them. Your skin soft, the manicurist said to the woman. O, you have good hands, the woman said, and she sighed. She had clearly never had her arms massaged in quite that way, I imagined. I smiled at her. The woman at the end waved her glittery gray talons at her manicurist, remarked that on her date the previous night, one had broken in half and fallen off. I wondered briefly if she were a porn star. I felt distracted. I glanced at the woman on my left who was getting another application of lotion on her other forearm, and when the manicurist began her slow kneading of the young woman's white skin, I saw her eyes flutter and roll up and backward. I almost groaned for her but looked down instead at my own hands resting in those of the manicurist, a fine red powder falling from them, each fingernail now naked.




Here's some French love poetry by Andree Chedid:

Preuves de l'amour

Gisement de désirs
Eperon du souffle



L'amour



Recouvre la fêlure
Soulève nos sols


Tisonne nos cendres
Estompe nos voûtes obscures.



Here's the translation:

Proofs of Love

Stratum of desires
Spur of the breath



Love


Recovers the crack
Raises our earths

Stirs our ashes
Blurs our dark vaults.

Monday, September 12, 2016

On Vacation

Otter, Moss Landing
Monterey, CA
Out until Thursday.

Photos of Big Sur, The Henry Miller library, California Condors, Whales, and Otter Crossing to follow at some point when I get up from my position here.

I miss ya'll already.

Friday, September 9, 2016

Smells Like Bullshit, Episode 45,678,982



Unless you've been living under a rock (and I've said it before, I understand), you've seen the various articles coming out at least once a day regarding radical price increases of popular pharmaceuticals. Most recently, there's the Epi-Pen story with its handsomely paid CEO, daughter of a Democratic congressman, and today's selection was about pharmaceuticals that treat inflammatory conditions, including arthritis. You can read about that right here and then come back to hear what the tiny little mother™ mind thinks about it all.





(this blank bit of screen has subliminal messaging because I'm a bit of a conspiracy theorist and tremendously biased)













Are you back? I was going to make this a Facebook post but then got carried away enough to realize that my blog was a perfect place to rant a bit, especially because I so rarely do that anymore. That was a joke. I'm thinking aloud here, typing so fast my fingers are a blur (I scored very very high on finger dexterity when I took a comprehensive test back in the last millennium a skill that comes in handy for a number of things that I won't elaborate upon here), but it will help me to get it out of my system so that I can go back to my day with a modicum of sanity. You know, finish the housework, navigate the systems of care for Sophie, coax Henry along the college application process and remain level-headed while shopping at Target for shorts with Oliver.

Anyhoo.


This is mainly what I want to say about the continued clusterf**k that is Big Fantastic Pharma and Big Grandiose Private Health Insuranceland or The Big Big Medical Industrial Government Complex (I sound a little like Drumpf now, don't I?) as far as it relates to Medical Marijuana World. When this rant's finished, I'm going to fix it ALL. It's going to be GREAT.

Along with the EpiPen and arthritis drugs, epilepsy drugs have long fluctuated wildly in price -- a single dose of ACTH, the steroid routinely given to those with infantile spasms cost $154 when we gave it to Sophie back in the late 1990s. I believe it's upward of $16, 000 now, and that's not because of inflation. That's because of the mumbo-jumbo Big Pharma puts out -- you know -- the high cost of research, rising costs, blah, blah, blah, etc. Diastat, or rectal valium, an emergency medication that is now in generic form, has cost me as much as $1200 A DOSE and as little as $7.50. Long-time readers of a moon worn as if it had been a shell might remember my Drug Mule series when I chronicled what happened to the price of clobazam and how I gamed the system. I'll refresh you:

1. Called Frisium, clobazam was not FDA-approved when we first started using it. I paid out of pocket for it for many years, purchasing from a London pharmacy through a NYC pharmacy. Cost: $150 for a month supply. So, manageable.

2. Approved by the FDA and renamed Onfi, it was not covered under my Insurance Company's formulary and was priced at $1800 for a one month supply, 1/2 of which I was subject to, so that's $900.

3.  I was no longer able to get Frisium but located a pharmacy in Canada that sold clobazam (remember Onfi, Frisium and clobazam are all the same drug and close cousins to Klonopin, one of the most heavily prescribed drugs in the US of Opiate Addicts) for $60. It became illegal to ship the drug across the Border, so two friends of mine in the Movie Industry, on location, picked it up and ferried it back to me. This was legal -- well, sort of -- but not sustainable, and in lieu of flying up to Vancouver every three months (I contemplated doing this and making a little vacay out of it), I turned next to:

4. A non-profit organization on the east coast that helps people with certain conditions get drugs for free or at a reduced price. I should add here that the Magnanimous Manufacturer of Onfi offered to give me a coupon for 12 months that would have taken $50 off the $900 co-pay (similar to the Epi-Pen CEO's magnanimity in lieu of reducing her $5 trillion salary). The non-profit PAID FOR THE ENTIRE CO-PAY which was like manna from heaven. I just had to swallow the small amount of vomit in the back of my throat when I found out that the non-profit was largely underwritten by the Magnanimous Manufacturer of Onfi and GOT A HUGE TAX WRITE-OFF for their charity to folks like us.

Are you following this because those four points were really just illustrative and an aside. Here's what I want to say today, in reference to that New York Times article linked above:


Guess what else is a potent anti-inflammatory?

I'll give you a hint: The DEA recently confirmed its status as a Schedule 1 drug, along with heroin and cocaine, meaning it has no medicinal value and can't be studied except under the most draconian of regulations.

Are you following me?

I'm no conspiracy theorist, but I suspect Big Pharma is getting their ducks (or dicks) in a row as they scramble to research and develop their own cannabis concoctions. The fact that we can grow it ourselves and make our own medicine means no money for The Big Guns, so we must all be subject to the scare tactics of Big Government and Big Private Entities. Free enterprise, baby. Capitalism, baby. Let the Market Do Its Thing, baby.

Us? THC, baby.







P.S.
While we're smelling the bullshit, if you have arthritis and live in a state where you can get some, try cannabis. It's a potent anti-inflammatory. I am not a doctor, though, and have only a tiny little mother mind™so please consult yours and don't sue me.


Tuesday, September 6, 2016

THC, Baby

Sophie in West End apartment, New York City
1997


The tiny little mother mind™in concert with several other tiny little mother minds™ thought that a small amount of THC, given during a particularly prolonged cluster of myoclonic jerks that might and probably would have culminated in a large and violent generalized tonic-clonic, might do some good.




Mark this space.















I'm going to admit that my hesitation in typing out anything positive is borne of a centuries old superstition that probably exists in most cultures and certainly exists in the southern Italian ones of which I am a descendent. By uttering something positive, I will jinx it and something bad will happen next. I think it might be called Murphy's Law for the WASPs among you. In modern times this might be called being a control freak or maybe even narcissistic and certainly egotistical and self-absorbed -- as if my every action and thought could influence the outcome, good or bad, or that it's all about me. That I don't believe I can jinx the good by typing out the bad is evident in the number of "bad" posts I have on this here blog, but remember my tiny, little mother mind™ and cut me some slack.

I know nothing and I'd bank on you knowing nothing, too, at least as far as why the hell Sophie's brain is so damn dysfunctional. I feel like I have to mark the positive, though, if I'm going to truly live in the present and be optimistic and cheerful (as per my I Ching reading).

Anyway, I gave her a little blip of THC during the cluster, and do you know that the seizures stopped? It wasn't immediate, and an argument could easily be made that they would have stopped eventually. That wasn't even the mind-blowing part, to tell you the truth. What happened was that the veil over her eyes was lifted and she looked clearly at me and smiled. She kept smiling, too, for the next few hours, off and on. She also had no clamminess and stopped drooling. Clamminess and drooling are two things that strangely literally break me. It's like they're superficial manifestations of the whole damn clusterf**k, and I feel broken, literally broken, when Sophie is clammy or drools excessively. I just know that she's deeply miserable and uncomfortable. After the couple of drops of THC, though, she looked brighter and definitely happier. Her palms were dry, and she stopped drooling. She seemed really, really comfortable.

Was she stoned? Perhaps a little bit, but that's okay.

THC, baby.

I write a lot on here about the effects of Sophie's seizures on me and our family, and I might not often convey how anguished I feel about the effects of them on her. I'm thinking of it, though, all the time. While there's a certain amount of dissociation for me which I imagine is a survival technique, the border between Sophie and me is very thin, a scrim, really. I believe that comes from the two of us being a kind of extreme parent and daughter. Sophie is completely and utterly dependent on me in the same way that she was as an infant. She's also powerfully herself, imbued with an evident grace and intelligence that people have remarked upon her entire life. This doesn't mean that our identities are blurred as much as it means they are fluid. That relationship is one that I know other mothers and sons/daughters like us struggle with -- it's the cause of much anguish, of marriages and family relationships broken, but it's also something precious and wondrous and rare.

I gave Sophie a bit more THC again later in the weekend, and the same thing happened. I might be on to something, and despite my superstitious nature, I'm going to keep you posted. Don't forget that we are on the frontline of this medical cannabis revolution and that the Powers That Be are taking their sweet time, mired in politics, money and party lines (we need more research). It's harrowing, but we on the frontline have to not only tinker with dosages and tweak products and strains but do it without the approval and sometimes with the indifference of those Powers That Be. Just the other day at The Neurologist's office, after suggesting for the 5 millionth time that I consider the VNS, The Neurologist said, I know you really only like to do the natural thing, though. It was tiny, but it was a sting, and given how difficult and complex this whole medical cannabis journey has been, I couldn't help but feel the great extent of my tiny little mother mind.™ The Powers That Be are going to do things in the way that they've always done them, though, so in the absence of real partnership, we're going to do it on our own. It's highly individualized. Ironically, though, the scrim between Sophie and me is probably the single most powerful help I get when I'm faced with crisis, and it works both ways. I know when she's comfortable, and I know when she's not.

THC, baby.

Sunday, September 4, 2016

Calculated Waiting: On Consulting Chinese Oracles




I'm pretty sure most people think me crazy to regularly and confidently consult the I Ching for answers when I am stumped by life's assault. I say assault because that's what it feels like, sometimes. Life. The seizure life. Epilepsy life. I've delved into the Chinese oracle for just about thirty years, ever since I took Chinese literature and language classes in college and learned to ask a question, throw the coins and interpret the answer using my copy of Wilhelm and Bayne's Book of Changes. I also use R. L. Wing's The I Ching Workbook to clarify and simplify the reading. The workbook says in its introduction that

the search for a solution to the mystery underlying the constant motion and change in the universe has spawned both the science of physics and the earlier science of metaphysics. Physics attempts to express mathematically the physical laws dominating the universe. Metaphysics attempts to express mathematically the effects of these physical laws on human affairs...
The tao literally means the way or gate through which all things move. To move with the tao is to be in a state that Christianity refers to as "grace." The Chinese philosophers were fond of comparing taoist behavior with that of water: It flows onward always. It penetrates crevices, it wears down resistance, it stops to fill deep places and then flows on. Always it holds to its true nature and always it flows with the forces in the cosmos.
Although the tao implies the path of least resistance, it is often a very difficult path to accept and follow. In following the tao, the individual can find his place in the cosmos and harmonize with it. At this point he can exercise true free will as he makes real decisions based upon real possibilities. Here "The Book of Change" can illuminate the individual by revealing immediate tendencies in the cosmos.

So what does all of this mean to me? Well, even after twenty-two years, I find myself in a sort of suppressed panic (it used to be overt) when Sophie goes through downturns like she seems to be in now. I won't belabor how difficult it is to watch her have more and bigger seizures than she's had in years. I feel terrible for her and, as always, helpless to fix things, figure them out. I call all my wisest friends, do what I call my Grand Rounds, and pick their brains. I lie next to Sophie and place my hand over her head and allow myself to go absolutely still and calm. I imagine some kind of innate healing power in my fingers, not mine but rather the universe's, and I coax it out. I know on some level, though, that there is no fixing or figuring and that I have to find this small and still part of myself where, if I abide there, with that, something will unfold. I wait.

This has always been true for me.

Today, I asked the I Ching how I should do this, how I should remember this place, this small still part and how I should get there. I rolled the coins six times and drew out the fifth hexagram.


Called Hsu, the upper trigram is water over heaven, and the lower trigram is fire over lake. The translation of Hsu is Calculated Waiting.

Have I lost you? I don't have the time or inclination to really explain all of this to you, but know that the principle of synchronicity (which the great psychologist C.J. Jung explains in the forward to the Wilhelm/Baynes edition) is at work once again. If you are skeptical, so be it, but I gently suggest you try it for yourself and see what happens.

Here are a few lines that jumped out at me from the reading that I take quite seriously:

A period of CALCULATED WAITING must pass before the cosmos can address itself to your needs. Many areas are undergoing significant change. 
That which you desire is caught in this change. In essence, it is a dangerous time, since the elements involved are not directly under your control. You may be facing some kind of threat or awaiting the outcome of a decision that could greatly affect you. If you worry about it you will grow inwardly confused and succumb to chaos and fear. You will waste valuable energy through agitation. When the time does come to act, your judgement may be impaired.
In order to attain your aim, you must wait to act until circumstances are in your favor. Inwardly bide your time and nourish and strengthen yourself for the future. Through careful observation attempt to see things without illusions or fears. Face the facts. If you are aware of your shortcomings and advantages, you will know what to do when the time comes. Ultimately you will meet with success.
The time of CALCULATED WAITING will put your confidence to a test. It is now that you must make a show of confidence. Do not express your doubts about the past or the future. Indulge totally in the present. Keep your thoughts and words on a positive note and maintain an assured and cheerful attitude.  


They also give me a kind of preternatural peace.


 
 

 
 
 

Thursday, September 1, 2016

Tending My Three Chickens

The Unknown Level of Dante's Hell: The Neurology Clinic


I couldn't possibly not mark The Quarterly $475 Reflex Check with The Neurologist, could I, even though the one yesterday was generally pretty unremarkable? I took the requisite photo in the Conquest waiting area, where I get my usual chuckles. For new readers, I loathe the medical/war metaphor in all its forms, and the fact that big, generous financial donors get their name on the wall as latter day conquistadores just basically brings out the cynic in me.

Anyhoo.*

The big hair in the nest-like foreground of the photo above, where we stood in line to check in, is indeed Sophie's. She sat impatiently for quite some time, humming and shifting and drawing disapproving stares despite the fact that not many people hanging out at the Neurology Clinic at a major Los Angeles clinic are -- well -- free of all disease and affliction. I noted some quick look and look-aways, some look and look and look and look and looks (#don'tstarepaparazzi), some kind yet pitying looks and then, thank the abundant universe, a look and a smile and a hello! The Neurology Clinic is actually a pleasant place in that the people who work there are kind and efficient, and Sophie's Neurologist takes a whole lot of time with us and is sensitive to nearly all my needs and desires. Yesterday she even asked me if I had Caregiver Burnout, and as a response I spontaneously combusted leaving behind only the dark stain of my toes in the footbeds of my pale blue metallic Birkenstocks. That The Neurologist can't and hasn't ever really helped Sophie's seizures is just a matter for me to file away in the giant cabinet of my tiny little mother mind™ and try to remain sane in this, the twenty-second year of refractory epilepsy. Let's face it, though, hanging out for a couple of hours talking about seizures and The Mysterious Apocalyptic Friday Last Week, as well as the goddamn vagal nerve stimulator (always brought up by doc, always dismissed by me), the amount of rescue rectal valium we should try in the future, and a wait at the lab to get blood drawn, followed by an hour through Los Angeles traffic, is not an afternoon from which I can draw some jolly insight. Humor me if I sound resentful.

Here's what I'm grateful for: the fact that Sophie has recovered quite nicely from The Mysterious Apocalyptic Friday last week, and that when I get home I have my two very delightful teenaged boys with whom to laugh, converse and enjoy.

Here's something funny.

The Brothers have been extremely helpful to me the last couple of months. I bought a small gas grill at the hardware store, and they've both been terrific at preparing chicken or steak or peaches or zucchini on it, much to my delight because I hate grilling. What they're not so good at, though, is dinner conversation. There's generally a lot of bickering about who does what to whom, and I honestly don't remember even a minute or two in what seems like years that anything truly interesting or stimulating was shared. I know some of ya'll think I'm a saint, but some of you know my true colors, and I have had moments at the dinner table listening to them where I fantasize about pushing back my stool, standing up and announcing that I'm leaving. For good. That I can't take the idiocy any longer, that I need to discuss Russian literature, or The Wire, or the subtle sexism directed at Clinton. Even as I fantasize, though, Oliver comments upon the chicken that Henry has grilled that night:

My bicep would be easier to cut into than this chicken.

Henry answers:

You're an idiot.



Sophie hums, picks up her cup, drinks by herself and then flings it across the room, even as I'm on my way out the door.















*I despise colloquialisms like anyhoo but enjoying using them in jest. This is an approved message for new readers.

Wednesday, August 31, 2016

When We'll All Go Together

Channel Islands




And I will build my love a tower
At the foot of yonder mountain
And visit by the hour
From a lonely wooden tower


Van Morrison, from Purple Heather

That summer when I was still a girl, more offering than sacrifice, the boy I loved lived in an apartment in a suburb called Druid Hills. Putty colored buildings, mosquito-thick air, Georgia green, no Celtic magicians but a couch in a room where I lay while he took a shower, the sound of water behind the summertime has gone and the leaves are gently turning. I've always loved that song, will you go and we'll all go together. Solitude, the intense loneliness of new love, the piano chords singing of ends and gos.

This weekend I had carnival dreams. I kicked up my legs, hung upside down and swirled breath in my throat then out and over the tops of bars into sky. I slept. He said, You need this sleep. You are safe to sleep and I have, I had no memory of anyone ever saying that to me. You need this sleep. You are safe to sleep. Everything.






What does Drumpf mean when he asks to make America great again? What do any of them mean -- the man in the silly hat with the big bill, the couple in the Cadillac in the parking lot of the Harris Teeter in South Carolina with the semper fi and the sign:

M A K E  A M E R I C A  G R E A T  A G A I N.

Again is the operative word, I think, or maybe it's Make, yet neither seems right and much less left.


Back from a weekend away, I was shoving my small suitcase behind a chair in my room this morning, and a little book, a pamphlet, really, fell out of the bookshelf by the chair, fell out and lay at my feet. Let America Be America Again and Other Poems by Langston Hughes with a preface by Senator John Kerry.  I think I bought it when Kerry ran for President, when he called for inclusivity. That election, twelve years ago, seems almost quaint now. The book has a navy paper cover with silver type. Round water stains spot many of the pages, one dripping, bleeding onto the titular poem. Hughes wrote the poem in 1938.

Here's a bit of it with a link to read the rest:



Let America Be America Again

Let America be America again.
Let it be the dream it used to be.
Let it be the pioneer on the plain Seeking a home where he himself is free.

(America never was America to me.)

Let America be the dream the dreamers dreamed—
Let it be that great strong land of love
Where never kings connive nor tyrants scheme
That any man be crushed by one above.

(It never was America to me.)

O, let my land be a land where Liberty
Is crowned with no false patriotic wreath,
But opportunity is real, and life is free,
Equality is in the air we breathe.

(There's never been equality for me,
Nor freedom in this "homeland of the free.")

Say, who are you that mumbles in the dark?
And who are you that draws your veil across the stars?

I am the poor white, fooled and pushed apart,
I am the Negro bearing slavery's scars.
I am the red man driven from the land,
I am the immigrant clutching the hope I seek—
And finding only the same old stupid plan
Of dog eat dog, of mighty crush the weak.

I am the young man, full of strength and hope,
Tangled in that ancient endless chain
Of profit, power, gain, of grab the land!
Of grab the gold! Of grab the ways of satisfying need!
Of work the men! Of take the pay!
Of owning everything for one's own greed!


Read the rest here











Saturday, August 27, 2016

like every lark who lifts his life



Yesterday morning, Sophie picked her cup off the table and,  just like that, began drinking. I'm not sure what happened over the past week, but I really was thinking that the regression was the new normal. I even bought multiple Honey Bear bottles with straws in them on the internets on the advice of another special needs healthcare mother.




Sophie also looked directly into my eyes, and I could swear she said What kind of shit was this past week? 

Then, like the phoenix, she rose up leaving me, a pile of ashes.

The picture above is Sophie with former NFL football player and now medical marijuana spokesperson Eben Britton. Ya'll know what I think of football but -- well -- ummmmm, hmmmmm, yeah. He's a writer and passionate advocate for medical marijuana. This was a Realm of Caring/Faces of Cannabis event with one of my heroes, Ray Mirzabegian spearheading it with the incomparably talented Colorado photographer Nichole Montanez.

She did not take these pictures -- I did, and I was suitably flustered.

Would you like another one?




Sigh.






It's my 53rd birthday today, and my friend Chris sent me this poem, one of her favorites and now one of mine. It's by e.e. cummings




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