Clusterf*$%kery, part 4,345,678

Despite all the recent excitement with the press beating on my door as I attempt to muddle through the clusterfuckery that is The Cannabis System, we need to get back to our regular programming. I just spent the last 15 minutes on hold with Medi-Cal and then 45 minutes in conversation with a very helpful, very clueless gentleman at Medi-Cal. You might wonder how someone can be both very helpful and very clueless? The ability to hold opposing thoughts and ideas in unison -- equanimity, if you will -- is a skill I've perfected over the last couple of decades (ok, to be honest, it's only happened in the last five years or so), as is the very careful walking of the tightrope, swinging from the trapeze and other grand carnival acts.

So, you can take my word that the gentleman I spoke with on the telephone was very helpful and very clueless.

I called because as of February 1st, Sophie was added to our health insurance policy (Healthnet), and we dropped her Anthem policy. Sophie also has Medi-Cal, which is secondary to her private insurance, but at present, Medi-Cal is LINKED TO ANTHEM. I called Medi-Cal (my fifteenth attempt, I should add) to ask them to:

1. Drop Anthem Blue Cross 
2. Add HealthNet
3. Link Medi-Cal to HealthNet

My aim is to ensure that when medical claims are filed with HealthNet, Medi-Cal picks up the uncovered stuff, LIKE IT'S SUPPOSED TO.

Well, the helpful but clueless gentleman informed me that I needed to fill out form -- let's call it AGNES because I don't want to stress you out further with the amount of numbers I'd have to type out to indicate which form -- proving that I was indeed authorized to act as Sophie's conservator. In other words, since Sophie is over 18, her privacy is protected and Medi-Cal can't authorize the release of information. If you remember the other, now distant clusterfuckery that was gaining Conservatorship, I am officially Sophie's conservator (in addition to being her mother). God forbid this sort of snafu should have been taken care of back then with the Social Security office. He very helpfully directed me to Form AGNES but upon perusal of it, he decided that it was maybe Form GLADYS that I needed. He then directed me to Form GLADYS, and we both realized that Form GLADYS was actually the wrong form, so we moved on to FORM MILDRED after he checked with someone.  

Form MILDRED it is, and I was instructed to fill it out and send to the address at the bottom of the form. I said, There is no address at the bottom of MILDRED, and he said, Oh. Let me go and see where you send her. 

And I said OK and then I did a little pirouette on the high wire and smiled down at the admiring crowd. When the helpful but clueless man came back on, he gave me an address and thanked me for my patience. I now must fill out MILDRED, send her to Sacramento, hope that she is received and processed, upon which I will call back Medi-Cal to request that they do Numbers 1 and 2 above.

Did you get that?

I'd really, really appreciate if you, dear Reader, moved that net right under me as I do believe I might be plunging to my death at any moment.

Update on the CBD Medical Marijuana Thing

photographer: Walt Mancini
Pasadena Star-News

So, that article appeared in today's papers -- here's the link.

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

what I read in the bath today at noon, alone in the house for hours, the first bath I've had in the house for over thirteen years:



My Life Was The Size Of My Life

My life was the size of my life.
Its rooms were room-sized.
its soul was the size of a soul.
In its background, mitochondria hummed,
above it sun, clouds, snow,
the transit of stars and planets.
It rode elevators, bullet trains,
various airplanes, a donkey.
It wore socks, shirts, its own ears and nose.
It ate, it slept, it opened
and closed its hands, its windows.
Others, I know, had lives larger.
Others, I know, had lives shorter.
The depth of lives, too, is different.
There were times my life and I made jokes together.
There were times we made bread.
Once, I grew moody and distant.
I told my life I would like some time,
I would like to try seeing others.
In a week, my empty suitcase and I returned.
I was hungry, then, and my life,
my life, too, was hungry, we could not keep
our hands off our clothes on our tongues from

Jane Hirshfield

Sunday

I have that something in the back of my throat and my head, that fuzzy ache that I would deny. Coffee and an Advil,  the blue sky and violent pink of the bougainvillea, the bird racket conspire. Last night I dreamt (humor the telling) of New York City, of a taxi ride so far uptown that the streets were deserted, newspaper blowing, cold tinny air and my old friend's (my oldest friend's) dark apartment building that I found myself in front of without purse or keys, the people milling in the lobby, opening and closing the door of the vestibule yet I wouldn't sneak in, wouldn't slip through the door on someone's heels as it opened or closed, stifling my panic on where I would go and how I would ever leave.

The dog's devoted gaze and my own dismissal.

The charade of intention.

The relentless desire to flee.

Undressing

the heat that rises as her slip drops to the floor, its warmth a black puddle on the bathroom tile

Saturday Three-Line Movie Review

Cesar Chavez

I literally fled to the movies this morning, anxious and exhausted after a day of interviews and people clamoring about medical marijuana and the weight of nineteen years of dealing with shit and was promptly knocked flat on my face by Diego Luna's film Cesar Chavez, about a man who fought an infinitely harder battle for others. If you're an Angeleno, you know his story (and this past Monday was Cesar Chavez day with a holiday from school), but I didn't really know his story until the moment I began watching this very moving, almost cinema verite-style movie. The suffering rained down on the people who farmed our food, the obduracy of the powers-that-be (the almighty Governor Ronald Reagan comes out very poorly in this, presaging his breaking another union many years later as President), and the gentle, yet powerfully dignified actions of this simple man moved me to tears, so much so that I hope every single American man, woman and child goes to see this movie and learns a bit more about his incredible life.







Other 3-Line Movie Reviews:

The Grand Budapest Hotel
Gloria
Labor Day 
Philomena

August: Osage County

Her

American Hustle

The shocking sight

of The Two of Them actually playing together without fighting.

Yet.

After the shower, "that closet stuffed with savage mementos"

I feel a bit like that spider looking in on a scene of great intimacy. Don't ask me why. I stepped out of the shower and saw it there, still, quiet, perhaps lethal. Yesterday's adrenaline is today's hangover. The illusion of content (emphasis on the second syllable) as well as anticipation.



Advice to Myself 

Leave the dishes.
Let the celery rot in the bottom drawer of the refrigerator
and an earthen scum harden on the kitchen floor.
Leave the black crumbs in the bottom of the toaster.
Throw the cracked bowl out and don't patch the cup.
Don't patch anything. Don't mend. Buy safety pins.
Don't even sew on a button.
Let the wind have its way, then the earth
that invades as dust and then the dead
foaming up in gray rolls underneath the couch.
Talk to them. Tell them they are welcome.
Don't keep all the pieces of the puzzles
or the doll's tiny shoes in pairs, don't worry
who uses whose toothbrush or if anything
matches, at all.
Except one word to another. Or a thought.
Pursue the authentic-decide first
what is authentic,
then go after it with all your heart.
Your heart, that place
you don't even think of cleaning out.
That closet stuffed with savage mementos.
Don't sort the paper clips from screws from saved baby teeth
or worry if we're all eating cereal for dinner
again. Don't answer the telephone, ever,
or weep over anything at all that breaks.
Pink molds will grow within those sealed cartons 
in the refrigerator. Accept new forms of life
and talk to the dead
who drift in though the screened windows, who collect
patiently on the tops of food jars and books.
Recycle the mail, don't read it, don't read anything
except what destroys
the insulation between yourself and your experience
or what pulls down or what strikes at or what shatters
this ruse you call necessity.

Louise Erdrich
via The Writer's Almanac

Radio Interview and a Perfect Statement from the Charlie Foundation about Charlotte's Web

Hilton Head, 2008
The "She in There, She Know" photo

Here's yours truly:



If that doesn't show up, you can go Here to listen.

I have to tell you that it's probably best that I didn't get to engage in further discussion with the neurologist who was also on the call. With all due respect, I found her position -- well -- the usual. Ya'll know me. I'm still holding onto the hope that one of these neurologists is going to shed the gobbledy gook and kick up their heels in joy that something good has happened. I'm also a tad sad that the part where I talked about all of you extreme parents -- the real Tiger mothers and fathers -- was edited out. Basically, I noted that we're very, very tenacious and unafraid of obstacles -- that our lives dealing with the various systems of care have already been so burdensome that most of us, particularly the black-humored ones, sort of expect more bullshit and absurdity. Oh, I didn't use any profanity and no one was aware that I was standing on a surfboard dressed in a Mad Hatter Costume under which was a string bikini.



And here's the wonderful Jim Abrams' statement through his Charlie Foundation about Charlotte's Web:

For the record, here is The Charlie Foundation's position on marijuana derivatives for epilepsy treatment:

The Charlie Foundation was founded on the principle that the medical standard of care needs to be be a process of informed, joint decision making between a patient or caregiver, and his/her health care provider. We have the highest regard for the value and necessity of science. We have much less sympathy for the intervention of government in this process.

What's more, science doesn't always lead the way. Frequently there is a painstaking period while science takes a great deal of time to substantiate or rule out what may be fact. Many don't have the luxury of that time. That's when factors such as anecdotal evidence and risk/benefit ratio need to be considered without government interference. That's where it appears we are with CBD today.

If we had waited for a randomized controlled study to be published on the efficacy the ketogenic diet, Charlie would have been seventeen years, rather than 20 months old before he started the diet, and I don't know that we would still have him today.

What's more, to paraphrase "first do no harm": "To pretend that multiple drug treatments for children with difficult to control epilepsy are science and then argue against CBD is the cruelest of double standards."

Jim Abrahams, The Charlie Foundation



Thank you, Jim and thank you Madeline Brand for airing our story!

Riding the Wave of CBD

I just taped an interview this morning with Madeline Brand of KCRW, a local public radio station. You can hear me at 12:00 noon, Pacific Time on Brand's show Press Play.

Here's the link.

I only shook like a leaf afterward but wonder if I sounded like I was surfing the biggest wave in the universe. At least they didn't see me in a bikini, though.

Parisienne

It was a glorious day here in Los Angeles with big white puffy clouds interspersed with some threatening ones, a blustery wind and crystal clear air. I snapped the above photo on my walk to the dog groomer this morning. I particularly love that the car is called Parisienne and is decorated with skulls. Oliver told me that it was inappropriate. 

I'm wasted.

The place where we get Sophie's CBD oil has been shut down by Los Angeles County. You can read about it here. So far, it doesn't look like we'll be shorted the CBD, but the whole thing is scaaaaaaaaaary and not a little frustrating.

A person from KCRW contacted me and will be interviewing me on the Madeline Brand show sometime tomorrow morning. If you're in the area, my interview will be pre-taped, but I think her show is on around 11 or noon. As soon as I get the link, I'll report back so you can hear me. Hopefully, I'll sound smoky, sexy, with a certain je ne sais quoi lilt in my voice that masks the inappropriate anger. Parisienne with skulls.

The guys from the newspaper that I told you about earlier just left after hanging out with me and Sophie for an hour or so. They took a lot of photos and video of me jabbering on in my Mad Hatter costume, so as soon as that comes out I'll post the link.

Cause it's all about me.

No, what it's all about is the safe access to medical cannabis oil for everyone.

Hey, Georgia politicians, Los Angeles County officials and other backward folk:

Did you hear that?

It's about the safe access to medical cannabis oil for seizures.

Homeland Security Resolution, The Mad Hatter, Medical Marijuana, Guns, Vanity, Gay Teletubbies and Some Appropriate Cursing

So, it turns out that one of my wonderful readers and commenters works for Homeland Security, and she confessed to scrolling through my blog yesterday on her time off -- hence, the mystery is solved.

Dang nabbit. I was feeling all self-important.

Today, though, I am going to be photographed with Sophie for a newspaper article about medical marijuana in California. Late last night I confessed to another extreme parent who was on the East Coast (up with her child way, way past midnight) that I was terrified to be photographed lest I look bad or horrors upon horrors -- heavy. I hate that word, by the way, and have forced myself to say it. My friend S, despite the grueling nature of her day, her night, her life, actually, sent me the following photo of what I should wear:

That's called The Mad Hatter Costume. I laughed so hard I almost fell out of my chair. My friend also typed that she wished she had the wherewithal to be more publicly outrageous than she is, and that made me laugh hard as well. Given the circumstances, I wish that I were, too. The truth is that while I'm happy to be interviewed, happy to tell our story, fired up to advocate and help others who need this information, there's a certain part of me that's as pissed off as one can imagine -- or maybe not just pissed off but freaked out, overcome by absurdity. I'm angry that it took nineteen years to stop Sophie's seizures despite this plant being available -- with evidence that it might very well help. Let's call off the Jesus stuff and the miracles and the feeling all joyous and happy now that Sophie's seizures are reduced dramatically. I'm angry about the clusterfuckery that is the American healthcare system -- angry that people opposed reforming it, angry that it's still entirely inequitable, angry at the buffoons in my home state of Georgia who think it's oh so American to carry a concealed weapon around wherever you please but good golly miss molly not the evil weed! I'm angry that my friend from Wisconsin had to work her fanny off to get the almighty lawmakers to pass a bill -- last night! -- making it easier to get CBD for children like her daughter who has had seizures for a decade, part of her brain removed and countless meds poured down her throat yet my friends here in Los Angeles can suck on pot lollipops at hipster restaurants. And yes, I thinnk marijuana should be legal for even recreational use.  I'm angry that I'm nervous we might not have a steady supply of Charlotte's Web, that I'll have to grovel for it. I'm angry with Big Pharma, with The Man, with capitalism, with the Tea Bag Party and the damn libertarian ship it floated in on, with The Way Things Work. I'm angry with my anger. And I'm angry that seizures are so vicious, that they've damaged not only my daughter's brain and her quality of life but our family -- my sons, my husband, me.

Hell, I'm angry that I'm not still thin, too.






Well, damn this whole shebang. And my own vanity.

I'm wearing this:

Bring it on, Homeland Security

Because, really, I don't have enough on my proverbial plate:

Apparently, Homeland Security has a fear of mixed metaphors or has put them on alert. Either that or the anti-super bowl party and then, of course, the whole medical marijuana thing. It appears that my titles could possibly be very, very clever masks for dark and dangerous activity. How's that for mixed metaphor?

What is true and what isn't

Since everything is but an apparition,
Perfect in being what it is,
Having nothing to do with good or bad,
Acceptance or rejection
You might as well burst out laughing!

Longchenpa
via Sogyal Rinpoche

(you know who you are)









On another note, the Department of Homeland Security has been trolling my pages through the dark night, visiting here fifty times in a few hours.