Friday, September 29, 2017

"Your 2018 health plan information is coming" and it's MAGA!

So, I got a missive from Anthem Blue Shield last week that I opened with a sinking feeling. Those of you who know that despite living in the land of "the world's greatest healthcare system," having individual insurance is a clusterfuck of gargantuan proportions. This has nothing to do with the Affordable Care Act, other than its concessions to private health insurance companies. That's a whole other post, and you know where I stand, anyway. #singlepayerforall

No communication from Blue Shield is met with anything but dread, despite their polite and even cheerful marketing efforts.

Here's the latest:

First of all, "Here are a few things you can do now to get ready" ?????!!!!!

Here's how I'd rewrite the three suggestions and then add a fourth:

  1. Be on the lookout for two separate mailings: one with your 2018 plan information and one with your 2018 rates. Make sure you review all the information but only after going FIRST to your freezer, pulling out the frozen vodka and taking a couple of shots. This is particularly important for the envelope regarding your new rate. 
  2. Visit our friendly website and take notice of its new look -- all the models are preternaturally beautiful and multi-racial. In fact, they are actual customers of ours, particularly pliant conservative Americans who've bought into the notion that medicine is a business and that we're in the best position to dictate how the whole shebang is run. They're so snowed that we killed them off with their permission and replaced them with look-alike robots. In lieu of increased rates, you'll see that you, too, will be given an option to be killed instead and replaced by a beautiful person in any race you choose. Think about it! After all, the stress of the increased rates might kill you anyway, so why not be preserved in service of other good Americans who "don't want the gov'ment messing with my healthcare!"
  3. Mark your calendar with these important dates! October 2017: Start drinking a lot of frozen vodka. November 2017: Open enrollment begins! Remember the option of being replaced by a smiling cyborg as opposed to having your rate increased! December 2017: Get ready for the coming year's continued clusterfuck at increased prices if you choose to stay with us. January 2018: You're either dead from the stress of your rate increase and the knowledge that you'll be fighting tooth and nail for every single claim or are on your way to eternal life, via Trump's Department of Health and Human Services where you'll spend a little time with those members of congress who continue to seek the repeal and replacement of the ACA. You thought they were real? They're dead, also, and will show you what it takes to become soul-less.
  4. Start stockpiling that rectal valium because you're going to need to have rectal valium parties where you charge the party-goers in order to pay for your health insurance. You'll need it as well if you decide to go the cyborg route because it hurts like hell to become a conservative and start ripping people off, lying and prevaricating about what you're actually doing. But be heartened by the end result: you'll be dead, re-fashioned and making America great again.

Tuesday, September 26, 2017

You don't need a weatherman to see which way the wind blows

10.  Practice corporeal politics. Power wants your body softening in your chair and your emotions dissipating on the screen. Get outside. Put your body in unfamiliar places with unfamiliar people. Make new friends and march with them.
Timothy Snyder, Professor of History at Yale University, from On Tyranny: Twenty Lessons from the Twentieth Century 

Disabled activists put their bodies into the fight and were literally dragged from the arena and told to shut up by those who work for them. Others who work for them did nothing, and I imagine that is because they were disruptive, shrill, out of control. 

The activists were called a sideshow.

What have you done to help disabled persons and the families of medically complex children fight for proper healthcare for everyone?

We are doing this for you, too.

Yes, it's a drag to have to beg, to applaud even those who waffle around about doing the right thing, but we're the sort of people that know fatigue and disappointment in ways that you might not imagine. We're stronger for it.


Make calls.

Put your body -- your healthy body -- into it.

Be shrill.

Be disruptive.

See the way the wind blows.

Saturday, September 23, 2017

How We Do It

When I feed Sophie oatmeal, I put one hand on her forehead and with the other coax a spoonful into her mouth. Then I put a finger on her chin and will her to keep her mouth closed and chew. Then I quickly scoop up the drool and any food that isn't chewed up and put it back in her mouth. I keep my hand on her forehead the whole time so that she doesn't drop her chin and let it all fall out. This routine is the same at lunch and dinner and I am patient on the outside, mostly, but dying on the inside. Her physical abilities are changed, too, but I don't feel like going into those here.

Do you want me honest or do you want me inventive?

I only have theories as to what's going on and actually don't welcome yours unless you've been helping me out for years or otherwise get it. I am taking the necessary steps to make sure that this is not the new normal. 

Yet, Sophie is incredibly alert and responsive and is having very few to no seizures and for that I am grateful.

I remember talking to my friend Erika years ago when she was struggling intensely with her daughter's cyclical vomiting and simultaneous seizures. Her daughter has a rare genetic defect that causes her countless issues, and Erika was in the full throes of it. I'm talking vomit and suctioning and seizures and more vomit and no sleep and no washing machine in the apartment to wash the soiled linens. No nursing, either, and a dear husband who had to get up early in the morning and go to work. It sounded, frankly, completely insane, yet she was living it and laughing with me over the insanity.

For a while, my friend Jody repeated this to herself and to me, "it's impossible," and I felt released from any burden I might be carrying.

I've walked into Sophie's room numerous times and found her seizing, sometimes safely on the bed and other times splayed in various positions on the floor. One time her head lay in a soft box filled with toys, another time she was on her knees, folded over on the mattress, her arms stiff, as if she were crucified. Honestly. Inventively, she was a prostrate supplicant, a postulant, perhaps (I was once a Catholic and was dutifully obsessed with these things). If you saw this stuff, you would, I imagine, cry or panic and certainly express that you couldn't do what I do. I suppose the rush of adrenaline gets you through, or maybe it's dissociation that comes, ironically, in like a flood. It's only occasionally that I think how not normal it all is, how fucked up. And the fuckery isn't just the seizures and suffering. It's the living it.

Do you want me honest or do you want me inventive?

Imagine a scene in a movie where someone has suffered heartbreak or someone has died, and the streets are filled with women in dark dresses, tearing out their hair as they walk down the street together, always together, and wail. They will eventually stop and eat together somewhere, certainly bread and maybe cheese. They'll brush one another's hair and lie curled up on beds with white sheets, their fingers trailing down backs lightly and laugh, always laugh.

Tuesday, September 19, 2017

Tuesday Afternoon

I had my toenails painted this afternoon despite the hurricanes whipping up over the Atlantic again, despite the persons displaced by the last hurricanes still digging themselves out of the muck, despite the huge earthquake that hit Mexico City this morning and killed hundreds of people, despite the Rocket Man speech that the Sexual Predator in Chief of the Disunited States gave to the United Nations, despite the threat of nuclear annihilation, despite the displaced millions in Syria, despite the melting ice-caps, despite the half million Rohingya refugees from Myanmar spilling into Bangladesh -- well -- you get it. I have nothing to bemoan or to complain of, other than 22 years of watching my child seize and suffer and the burdens of caregiving, and even those are nothing, nothing in comparison.  Are we connected to one another in suffering? I sat in the raised chair while a woman I don't know knelt at my feet and painted my toes a brilliant purplish pink. I go to Sophie's room every single morning expecting her to have perhaps died, and I realize that sounds dramatic and perhaps neurotic, except it's not. The thing is, we do that. We put our children to bed at night like newborns except we do it for years and years and years, sometimes decades, and we hope they don't die before us and dread that we might die before them. What's it all about? my seven year old son cried one afternoon, watching his sister seize and his mother weep. This isn't a post about privilege, however aware I am of it. I'm just musing on what it means to know suffering, how the demands of caregiving as mother, the detail of it, the tedium of it, the relentless ongoingness of it,  has honed me, made me aware of the more giant undertone that is the suffering of the world. How I can't do anything about it and do everything about it, every single day.

Monday, September 18, 2017

Everything real, with gratitude

Sophie's humming again. To distraction. This is good because it means that she's alert, not seizing, trying to figure things out, to communicate. Verbs like muscles. Verbs are muscles. You like me honest so I'll say that the humming can either be a hammer or a song. We're either our thoughts or we're not, and the living is in the vagary.

The Bird Photographer took that photo, and because it's not particularly sharp is why I love it and he probably doesn't. He brought me a bunch of roses this weekend that were honestly astounding.

Friday, September 15, 2017

"also, that you have enough"

I went to an extraordinary exhibit at LACMA this afternoon with a few close friends.

Did you know that Chagall designed costumes for operas and ballets?

Honestly, this was one of the most extraordinary art exhibits I've ever seen -- just a few rooms of drawings, paintings and sketches and probably around twenty costumes, but each one practically gave me a case of Stendhal Syndrome. Do you know about Stendhal Syndrome? I saw someone fall down as if dead right by Michelangelo's David in the Accademia in Florence back in the last century. It's a thing, really. Look it up or click on the link I just gave you. Granted, I was feeling strung out when I decided to run over to the museum and join my friends. It's just everything lately -- and I'm doing weird stuff since I turned 54, like losing things and leaving my debit card at the post office. Like my mother always said, "I'm glad my head is connected to my neck, because otherwise it would have spun off." Chagall's joy and wonder in music and color and fabric and beauty and whimsy leaped out of every piece and just filled me with joy again.

And then there's the natural world. I'm reading an extraordinary book about landscape and words. The first chapter is called The Word-Hoard. Don't you love that? The book is called Landmarks by Robert MacFarlane. It, like Chagall's costumes and drawings, is joyous. Here are the first two sentences:

This is a book about the power of language - strong style, single words - to shape our sense of place. It is a field guide to literature I love, and it is a word-hoard of the astonishing lexis for landscape that exists in the comprision of islands, rivers, strands, fells, lochs, cities, towns, corries, hedgerows, fields and edgelands uneasily known as Britain and Ireland.

I don't know how many of ya'll out there are lovers of word-hoards, but get thee to this book if you are at all simpatico.

Check out that bamboo that lines the pathways to part of LACMA! That's natural!

Here's a close-up:

Is that not wild?

Why am I asking rhetorical questions?

The universe is abundant.

Here's a poem:

What You Missed That Day You Were Absent from Fourth Grade

Mrs. Nelson explained how to stand still and listen
to the wind, how to find meaning in pumping gas,

how peeling potatoes can be a form of prayer. She took
questions on how not to feel lost in the dark.

After lunch she distributed worksheets
that covered ways to remember your grandfather’s

voice. Then the class discussed falling asleep
without feeling you had forgotten to do something else—

something important—and how to believe
the house you wake in is your home. This prompted

Mrs. Nelson to draw a chalkboard diagram detailing
how to chant the Psalms during cigarette breaks,

and how not to squirm for sound when your own thoughts
are all you hear; also, that you have enough.

The English lesson was that I am
is a complete sentence.

And just before the afternoon bell, she made the math equation
look easy. The one that proves that hundreds of questions,

and feeling cold, and all those nights spent looking
for whatever it was you lost, and one person

add up to something.

Brad Aaron Modlin
(lifted from an OnBeing newsletter)

P.S. If I disappear from these parts, it's because I stole the dress that The Queen of the Night wore in The Magic Flute that's in that first photo. I'm going to get married in it and retire somewhere south of the Disunited States. Don't tell anyone.

Wednesday, September 13, 2017


Photograph by Carl Jackson
Facebook page

This morning I quoted a Haitian proverb that I remembered reading way back in an article about the great physician Paul Farmer.

Dey mon, gen mon (beyond mountains, there are mountains)

It became the title of a book by Tracy Kidder about Farmer and his work in Haiti. I was talking to Carl, the Bird Photographer that I love, who is currently in Houston helping in some of the clean-up going on there after the terrible hurricane two weeks ago. It is, as you can imagine, nearly insurmountable work.

Some interpret the proverb as meaning there are inexhaustible opportunities. Others say that surmounting obstacles gives you a better view of the next.

I am so grateful to Carl and his friends for doing this work, these acts of love.

As I type this, it's only been an hour or so since a young girl, one of our beautiful and close-knit epilepsy and cannabis community here in southern California, was rolled into surgery to remove her organs for donation to those who need them. Aiyana was admitted to the hospital a few days ago and put on life support, her brain unresponsive, perhaps from a seizure or some other hideous complication of the rare disorder she had suffered from her entire short life. She was a radiant child, her mother a goddess. We are all bereft to lose her and know her mother's and siblings' heartbreak, yet are also filled with the most encompassing kind of love that you can imagine, the kind that comes from witnessing and abiding with suffering and unconditional love.

So many obstacles, yet love is endless.

Dey mon, gen mon

Sunday, September 10, 2017

Disruptive Women

I periodically check out an organization called Disruptive Women in Healthcare to see what's going on.  Despite the fantastic name, it looks a tad too corporate/non-profitty for me (that's how disruptive I tend to be), so I've never looked into joining it. Anybody out there on the interwebs who's a member of Disruptive Women in Healthcare?

I'll show you disruptive.

I think Sophie's name and persona is being used for MediCal fraud. This weekend I got a stack of papers, including 5 Explanation of Benefits for services rendered three years ago on arbitrary dates for arbitrary amounts of money. The provider is The Department of Children's Services. The insurer is HealthNet. The dates were all in the fall of 2014, and we did not go to a doctor on any of them. We've never used HealthNet, although straight MediCal might have once. The Explanations of Benefits came in a big packet, each one followed by the exact same sequence of nine pages with language translation information and my "rights." That was 45 pieces of paper in the envelope, only 5 of which were the actual business at hand. Bear with me.

Don't be disruptive. Just listen.

Because it was Friday, and because I am disruptive, I decided to call the number on the sheets of paper and ask what the hell was going on. I spoke to four different persons in nearly two hours -- let's say their names were Rhonda, Wanda, Larry and Jill. Rhonda was the quickest to bump me off to Wanda who was the type of service professional you can imagine staring at a Service Manual and reading the script best suited for Disruptive Women. Whenever I said "thank you, Wanda," or "Ok, Wanda," she said, "No! Thank YOU!" and we might have gone back and forth for hours with pleasantries if I weren't so disruptive. I won't even tell you how apologetic she was every time she put me on hold and popping back in periodically to make sure that I was all right. In the end, Wanda sent me to Larry who -- quite literally -- FREAKED OUT. When I explained my "problem" to him for the second time (the first time, he kept insisting that he was trying to help me but kept asking me really stupid questions, so I admit to being impatient), in my most disruptive voice, he said, "Whoa, whoa, whoa. That sounds like something really big. Really big." Larry was undone and advised me to call the Ombudsman. He said Ombudsman in a tone of voice that conveyed the mystery of The Wizard of Oz and then, very, very solicitously spelled it out for me. Because I'm disruptive (and perhaps a teensy tinesy bit stressed), I actually interrupted him at that point and said, Larry, I KNOW what an Ombudsman is and how to spell it thank you very much. Larry and I said our good-byes, and at  approximately 4:54 pm, I called the number Larry gave to me and spoke to Jill who got a gold star for even picking up the phone so close to closing time and then after the first explanation sighed and said that I would have to call the fraud department of MediCal on Monday morning.

Are you still reading?

I put my finger to my temple and did a Rodin pose and then recalled a similar stack of papers that I received earlier in the year or maybe last year with a whole lot of weird amounts of money paid out. There was one in there from 1999, when Sophie wasn't even a recipient of MediCal, so I called then and reported "fraud" and maybe even wrote a post on the old blog about it. Because I'm a disruptive woman in healthcare and mighty efficient, I pulled out that stack of papers and found my notes. Needless to say there has been no follow-up, and now I'm facing a Monday morning call to the Fraud Department.

The most disruptive thing I'm thinking at this point is who would want Sophie's medical identity, anyway? What would be great is if we could just switch with someone healthy milking the system and really go to town on the amazing benefits.

Tuesday, September 5, 2017

Launching Having Launched

The look the face that's launched me thousands of times

You ask, How do you do it? or you say, I could never do what you do. 

Think of body skin bone appendage organ heart brain eye borne in a boat and you are the boat.

I am the boat vessel rocked and rocking launched and launching

Boat (body) Body (soul) Soul (eye) Eye (look)

Do you get it?

Look (eye) Eye (soul) Soul (body) Body (boat)

Friday, September 1, 2017

A Short History of August*

Sophie had a hard month
I turned 54
My feet hurt
My son started college
I'm looking for work
Ends aren't meeting
The world is melting
I've never been happier

*Zen priest Karen Maezen Miller inspired me to write this koanish post. If you haven't read her work, you should. Here's her website: Cheerio Road


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