The Next Morning

No photo today.

The helicopters are circling, have been circling since yesterday afternoon when a peaceful protest turned into an afternoon, evening, night of violence and looting in my neighborhood and in downtown Los Angeles. It was deafening. I can only write what I know and what I feel. I refuse to dwell on the looting but will sit with the churning in my stomach, shooting out my fingertips. The questions. All of our blind grappling in the darkness as if answers will come. I've argued with my own mother. Carl saw a bear yesterday somewhere and I haven't had the chance or even desire to ask him where. I set up a bird bath in my front garden, powered by the sun. Powered by the sun. I keep thinking of the Wallace Stevens' poem Gubbinal, its simplicity and paradox. How tempting it is to despair. The world is ugly and the people are sad. The body. The sun. The imagination. How to inhabit the body, the individual body and the collective body. Everyone was peaceful until the cops showed up, my son reported. Showing up. Riot gear. Helicopters, their blades slicing through air. I watched a video sent to me by a neighbor of a group of young people, black and white, bashing their way into a luxury store at a local mall. Do I care about a mall? Do I care about a luxury store? Do I understand the motivations? Will I condemn them as senseless? I felt afraid and not for my body, my white body nor, even, for the white bodies of my children or the black body of my love. There's a strangeness and goodness in just feeling something, not thinking about it, and I felt afraid. Cooped up for months. Twenty percent unemployment. National Guard soldiers standing outside a marijuana store called Med Men. Jewish synagogues and schools and small stores defaced and looted. People sweeping, sweeping it up. What it looks like to step through glass buckled and shattered, your skinny white legs and bleached blonde hair, your sleeveless arms clutching a large leather handbag, a blurry computer. Do not share the faces of the protestors, the young people admonish. The strangeness of it. Yet, shouldn't this be so? There's a timeline that leads to this moment and the urge to contextualize. The timeline begins centuries ago.

I'm thinking of Armaud Arbery running through the streets of his Georgia town, chased like an animal and gunned down, slaughtered by vigilantes who were free for months. 

There should not be an etiquette for people's responses.

Earlier in the afternoon, a billionaire launched a bunch of astronauts into the empty airless space over a world choking to death in a pandemic as hordes gathered in the streets to protest the slaughter of a black man who could not breathe under the knee of a white man. That is everything.

Throwing Your Body Into Anti-Racism

Our country is broken, but many of us aren't. Throw your body in and do something.

You don't need visuals to feel empathy for victims. Be mindful of spreading images and the trauma they reinforce and cause.

Please add in any resources that you know of in the comments and share with whomever you like. I will be updating constantly.

A riot is the language of the unheard. 

Martin Luther King, Jr.

The beauty of anti-racism is that you don't have to pretend to be free of racism to be an antiracist. Anti-racism is the commitment to fight racism wherever you find it, including in yourself. And it's the only way forward.

Ijeoma Oluo

Anti-Racism Resources for White People

Sign the #JusticeforFloyd petition

The Minnesota Freedom Fund is a local organization that pays criminal bail and immigration bonds for those who cannot afford them.

Black Visions Collective

Justice for George Floyd -- How You Can Help

Justice for Bre

Black Lives Matter

Black Mamas Matter

Equal Justice Initiative

Thurgood Marshall College Fund

Southern Poverty Law Center

Keywords in Black Protest: A (n Anti-)Vocabulary

Where is Jesus?

I haven't written in this space in more than a week, and the last thing I wrote was just fluff, just superficial bullshit, just aggravating minor bad luck goofy stuff that's a mask, all resolved now. I'm walking around doing laundry, taking care of Sophie, exchanging texts with my favorite sacrilegious caregiver friend, feeling solidarity and shedding tears with and for another caregiver friend, Christy Shake, whose most recent post might have ripped my heart out of my body but instead provoked its beating a little harder a little faster. We are ALIVE. I love you, Christy. Who is Calvin and who is Sophie?Who are we without these cares? Must we define ourselves by care? Who are we at all?

Where is Jesus?

Shouldn't he have shown up by now and cleared the tables in Washington, D.C., kicked them over and thrown those who claim to believe in him out on their privileged, hypocritical, stupid, vision-less asses? Shouldn't that POSPOTUS be punished by now, disgraced and bound in a public stockade?  Why is that man from Georgia so hell-bent on power that he's denying suffrage to tens of thousands of people? Is he afraid of the black woman that he is running against? Why are Georgians not ashamed? Are they punch (or should I say beer) drunk on power? I am ashamed that I pass countless homeless persons on every single corner of this great city. I pass them by. Why have the Koch brothers spent so much money on propaganda against climate change? What are these sacrosanct values that conservative peoples espouse? Why do so many people bear arms? The man in the park in Sedona last week, pushing his mother in a wheelchair to an overlook, the rushing water below, the sky blue above, a large gun strapped to his thigh. Did he feel safer? Freer? He made me sick. Why exactly is the POSPOTUS administration now going to "erase" transgendered people? Define humanity by their genitals at birth? Who will be next?

Will we have to fight? Parents against their grown children. Cousins estranged. Friendships severed. And anger, so much anger, and it won't be squelched.

No stranger to the catastrophizing that comes with great stress (I step over a curb and imagine my body flung by passing traffic, the descent into the red rock canyon surely must be swift), I am yet dazed, struck dumb, bewildered.

I am furious.

“I have been beaten, my skull fractured, and arrested more than forty times so that each and every person has the right to register and vote. Friends of mine gave their lives. Do your part. Get out there and vote like you’ve never voted before.”

—Congressman John Lewis

PSA for These Difficult Times

Letting my snaggle tooth hang out

You're exactly where you're supposed to be this moment. I tend to project all my fear out into the future, but you know what? It's my present that's terrifying at times, and I have to tell myself that I'm exactly where I'm supposed to be this moment, over and over and over. Sometimes cliches are necessary.

Here's the PSA part of this post:

Do you listen to The Daily? It's a daily podcast that digs deep into a pertinent issue for twenty minutes, five days a week. The New York Times does it, so I suppose some of you out there reading will say it's fake news or liberal biased media or whatever lazy cliches are being thrown about. I say lazy because we're all subject to lazy, particularly intellectual laziness, and these times call for us to gird our loins and pay attention and read quality journalism and listen to careful, investigative work. I think The Daily does important reporting, and from what I've listened to for many months, it appears to cover sides of an issue when that's pertinent but also THE FACTS as they appear to our eyes and ears.

Truth is always truth, contrary to what you might have heard out of the Powers That Be's very own mouths.

Today's podcast was Part One of a two-part series called Divided: How Family Separations Started, 

and it'll blow your mind and break your heart.

Recently, I wrote a post detailing my happiness at Sophie finally starting her new adult day program. One of my Anonymous commenters wrote this:

What, you are happy with a great program for Sophie. That is wonderful. But what about all the children separated from their parents at the border?

I replied:

Anonymous, what do you mean? Have I forgotten that our government kidnapped thousands of children and put them in internment camps. Never. Doing what I can — do you need info or resources on how you can help them?

I suspect that this is the same Anonymous who spent a lot of time on an earlier post of mine defending the separation policy, so I'm hoping that she listens to the podcast. I wonder, too, whether her feelings about the great tragedy on our borders have evolved at all. The reason why I'm wondering is because I think it's going to take as many people as possible to exact justice. Yesterday, the POSPOTUS himself blessed and spoke warmly to those who work for ICE and for their actions at the border. 

So what can we do about the clusterfuck beyond educating ourselves? The obvious solutions are to pressure your representatives to work toward reuniting these children with their families, to vote for those people who fight injustice, to donate money or even donate and subscribe to the ACLU, to protest whenever there are gatherings, to hold your government responsible, to speak the truth and refrain from arguing that there's any reason at all to separate any child from his or her parent because they are seeking asylum or a better life for their families and happen to have brown skin.

Here are some more ideas that I found on the Internets.

1. Become a child advocate.
2. Become a Court-Appointed Special Advocate (CASA) for young people in foster care or donate to your local CASA program
3. Donate to Comfort Case which gives backpacks of comfort items to kids in foster care
4. Volunteer to visit people in immigration detention.
5. Help transform your faith community or business into a sanctuary space.
6. If you happen to be a lawyer, paralegal or law student, a number of organizations are looking for pro bono volunteers.

Click HERE for more information and links to explore the above.

The Daily

#familiesbelongtogether

#resist

On "Civility"

Yesterday, I marched in downtown Los Angeles against the Trump administration's policy to separate immigrant children from their parents at our "border." I joined tens of thousands of other Los Angelenos on a beautiful southern California afternoon in protest of our government separating thousands of children in what appears to be a systematic form of child abuse and crime against humanity.

America is not a great country at this point, if it ever was, and anyone who's arguing for more civility is deluded and naive. My friend, the great writer Lidia Yuknavitch said the other day on her social media account that civility has always been determined by those in power. 

Civility has always been defined by those in power.

We have babies in cages on our "border" (not to mention the dismantling of environmental laws to protect the planet, the specter of women losing reproductive rights, the vilifying of the press, the collusion with world dictators, the Muslim ban, the racism that permeates literally every single directive from the POSPOTUS and his enablers) and are being told, even by those on our "side" (Bernie Sanders, Nancy Pelosi, Chuck Schumer, etc.) that it isn't "American" to deny someone like the lying press secretary a peaceful dinner in your restaurant. This doesn't settle with me -- and not the so-called lack of civility.

What, exactly, does civility mean, and how has it been defined in this country from its very inception?

These aren't rhetorical questions but, rather, real ones that are if not tormenting me than at least filling up my mind to the extent that I feel near anguish. The anguish comes, I think, because the situation at hand calls for so much self-reflection -- so much probing of one's interior, one's ego, one's impulse to be right. I say one's because I imagine it's true for a lot of people, particularly those of us who are privileged (and I don't mean economically; I mean white). What does it even mean to be a good person, to act with civility when the very definition of the word has been determined and defined by those in power?

The center does not hold.

I feel the same way when I read arguments against what white men call "tribalism" or "polarization." Honestly?

I got into an argument on a friend's thread on Facebook -- not with the friend but with one of his "friends." I've sparred with this guy before, and while I'd like to make him irrelevant by not even engaging with him (his comments are nearly always dull and condescending with that overwhelming sarcasm and fake irony that marks the intellectually lazy), I'm learning through the engagement what it takes to be truly disobedient. Or maybe what it might take to be truly disobedient to the mores and definitions of civility that not only our ancestors but also our contemporaries demand.

Again, I'm just thinking about these things. I am certain of very little.

I'm a person who has trouble even uttering the word fuck, mainly because of the way I've been brought up, yet in uttering the word fuck I alienate even my own parents whom I love.

The person with whom I sparred on Facebook responded to my call for civil disobedience by asking whether I was prepared to be violent against my fellow citizens because being disobedient might cause a schism like we haven't seen since the Civil War. He asked, "Prepared to defend and even harm others if need be?"

I answered, "I will personally not commit acts of violence against any human beings, but I am prepared to stand against anything. That means anything. Absolutely. There are plenty of examples of peaceful and resolute civil disobedience across history. It's not a matter of "winning" or "losing." I align with those people. When and if my rights as a woman are compromised as they very well will or might be very soon, I will stand against that and for other women, minorities and the disabled."

I added, "The path to change is seldom polite. And the definition of civility is generally set by those in POWER."

The guy responded, "The definition of civility in this country was originally established when the first inhabitants began following the codes and mores of western civilization, along with the principles of the rule of law. Men opening doors for women, pulling their chairs out. You know that kind of demeaning, misogynistic behavior ya'll are so eager to abolish in favor of...I don't know what. Hip hop?"

If I had one, I'd rest my case. 

Mull on that, Reader.

 What Kind of Times Are These

By Adrienne Rich

There's a place between two stands of trees where the grass grows uphill

and the old revolutionary road breaks off into shadows

near a meeting-house abandoned by the persecuted

who disappeared into those shadows.

I've walked there picking mushrooms at the edge of dread, but don't be fooled

this isn't a Russian poem, this is not somewhere else but here,

our country moving closer to its own truth and dread,

its own ways of making people disappear.

I won't tell you where the place is, the dark mesh of the woods

meeting the unmarked strip of light—

ghost-ridden crossroads, leafmold paradise:

I know already who wants to buy it, sell it, make it disappear.

And I won't tell you where it is, so why do I tell you

anything? Because you still listen, because in times like these

to have you listen at all, it's necessary

to talk about trees.

 

#FamiliesBelongTogether

Venice Blvd.
Los Angeles, California
June 20, 2018

Do you remember as a child getting separated from your mother in a public place? I was with my mother shopping one day and probably in a world of my own, in my head, day-dreaming as she walked through aisles of clothes racks. I can't have been more than six or seven and perhaps even younger. At some point I grabbed the hand hanging in my view and looked up simultaneously, thinking it was my mother. Except it was not. It was a stranger. I remember that moment of terror -- only a moment because the woman whose hand I'd grabbed looked kindly at me, and my own mother was in sight -- like it was yesterday. A moment of terror. At being separated from my mother.


Is there anything else to do but think about, agitate about, write about and above all, ACT ABOUT these children separated from their parents at the United States border. Despite the POSPOTUS' rescinding of the policy he and his henchman initiated and the band of thugs who have carried it out, it's unclear whether hundreds, if not thousands of these babies and children will ever be reunited with their parents.

Babies in tents.

Where are the girls?

I'm making all the POS folks who supported this policy irrelevant in my mind. I'm not responding to their inane, inhumane arguments.  Those who believe America to be a Christian nation. The vile human who made a joke about a child with Down Syndrome being separated from parents. I'm brushing them away.  Those who compare the people of Mexico and Central America to vermin. Be gone.

And those who invoke the great peace leaders of the world and admonish us not to be angry, that it's all about love -- step aside. The great peace leaders were plenty angry, and they used their anger in constructive ways to bring peace. You step aside, too, or step up.

Here are some things we can do:

What You Can Do Right Now to Help Immigrant Families Separated at the Border

Photo: John Moore/Getty Images

Fortnight

So, tomorrow (Friday) marks the end of the second week of Sophie's recovery from her wisdom teeth extraction, and it appears that she's turned the corner. My poor baby girl suffered so much for so many days, but she's rallied and is eating again, has stopped having so many seizures (sometimes more than six, seven a day), can walk a few steps, has great eye contact and has even smiled. Knock three times. 

I am relieved. I am so very grateful.

I'm also a wreck, the proverbial ashes after the Phoenix has risen. I've probably made that cliched analogy 5,432,897 times in the last twenty or so years, but it's the damn truth. I am wasted. Sleep-deprived. Out of my gourd stressed. One of the highlights of the fortnight (how often do you hear the word fortnight these days?) was the early morning that I staggered into her room to check on her and came upon a scene straight out of a horror movie. There were ANTS marching along her windowsill and across her bed and onto her face and into her ears and mouth and nose and braids. I'm not kidding you, Reader. Hundreds of ants. She was asleep and stayed asleep (I imagine she was not just asleep but post-ictal after having a silent seizure that I wasn't aware of), even as I frantically brushed the ants off of her, stripped her, lifted her up and lay her on the floor, ants crawling all over me, then, as I ran to the kitchen, grabbed a bottle of Windex with vinegar and started spraying down the windowsill and the bed and then stripping the bed and rolling everything up and bringing it to the washer and then running to the hall closet, grabbing the vacuum cleaner, climbing onto the bed and vacuuming everything. Sophie slept on the floor the entire time. It was about 5:30 am, and while I thought about waking The Brothers, I decided not to -- they'd probably only stopped playing a few hours before that dreadful game that every kid is playing, and let's just say that there are some things, some entirely insane moments of this caregiver life, that I want to spare them from remembering. When I was done vacuuming, I picked up Sophie from the floor (yes, I picked her up in a kind of squat that you see those Olympians do with barbells) and carried her to my bed. Then she started to have a seizure, and I effectively dissociated in a similar fashion in my mind as I'm doing here on the screen.

I can't remember if it was that night/early morning or another one that I called my friend Sandra in New York and wailed, but she helped me as did you and you and you (you know who you are). This community is everything. Thank you.



So, what else?

I can't go without mentioning the absolute shitshow happening at the border of our country. Would that we've reached a turning point today when the AG actually quoted from the Bible to justify the practice of separating children from their parents and That Sanders Woman reiterated the Bible to justify the fuckery. I'm not quoting any more Bible verses here except to repeat what my son Henry yelled when he heard about it. You could probably pick out any Bible verse and twist it enough to say that Jeff Sessions is a POS. Amen, son.

It should now be the turning point where we take to the streets and storm the WalMart where those boys are housed, help them out and throw the POSPOTUS and his Mafioso into it with all their supporters and enablers to live in to the end of their days.

And where are the GIRLS?

Honestly, Reader, can you even make up a story more Amerikkkan than illegal brown children being housed in a former Walmart -- a shitty megaMcstore, an altar to money and exploitation that has destroyed communities, sells mostly processed food and crap to the suckers who shop there because it's cheap and whose owners are revered for their wealth? That the Powers That Be are claiming God has ordained this -- well -- my god.

Call your representatives and demand that this stops NOW. 

Click here for other things you can do NOW.

Smashing the Plutocracy

I'm not saying anything else about What Happened Today in Terrible America, other than the plutocrats have successfully passed their tax scam on the backs of the vulnerable, bending over backwards with their proverbial asses for the ruling members of the Kochacracy.

I'm an angry caregiver and mother who knows only a bit about a certain kind of struggle but enough to respond.

Here's a statement from The Arc, an organization whose mission is to promote and protect the rights and dignity of persons with cognitive and intellectual disabilities.

The Arc Responds to Senate Passage of the Tax Cuts and Jobs Act “Each vote in favor of this bill was a vote against constituents with disabilities”

Posted on December 20, 2017 by The Arc

Washington, DC – The Arc released the following statement in response to Senate passage of the Tax Cuts and Jobs Act:

“Today both chambers of Congress rushed to pass an irresponsible tax plan. By reducing revenue by at least $1.5 trillion, the Tax Cuts and Jobs Act increases the pressure to cut Medicaid and other programs that are critical to the lives of people with intellectual and developmental disabilities. Each vote in favor of this bill was a vote against constituents with disabilities and sets the wheels in motion to quite possibly go back in time to an era when people with disabilities had little opportunity to live a life of their choosing, in the community.

“The Tax Cuts and Jobs Act was crafted behind closed doors and the final draft of this bill was only released publicly on Friday. The rush by the Senate to pass this bill mere hours after the House of Representatives vote makes it clear that the architects of this bill were trying to hide something from the American public.

“This year the disability rights community has endured ongoing Congressional attacks that could have jeopardized the health and well-being of individuals with intellectual and developmental disabilities. And now, thanks to the enormous revenue losses that will be created by this bill, we must prepare to protect critical programs like Medicaid which will likely be on the chopping block in 2018. We are grateful to the Members of Congress who stood up for their constituents with disabilities by opposing this bill and we look to them as our greatest allies as our fight continues. While this bill must return to the House of Representatives once more, it is expected to be signed into law. Passage of this bill will not change the resolve of The Arc’s network. As we have shown time and time again, we are a force to be reckoned with. We will remain active in our opposition to attacks on the basic rights and health of people with disabilities and their families,” said Peter Berns, CEO, The Arc.

In these dark times, when each bit of news is more debilitating than the last, when those of us who have fought lifetimes to not just keep our children alive but to maintain their dignity in the face of a culture that would deem them less than human -- well -- the only thing that helps is to keep going and not give up, to be angry and to be brave in showing that anger by continuing the work to improve this goddamn country.

You can get involved by supporting the Arc's activities here. When citizens help to protect the rights and lives of their country's most vulnerable, they are a great people and members of a great country. I really believe that otherwise they are damned, slaves to something rotten.

Stop Kumbayaing and WAKE UP!

Dear Representative or Senator,

As a constituent who cares deeply about issues affecting people with intellectual and developmental disabilities (I/DD) like my daughter who has refractory epilepsy and severe developmental disabilities, I have concerns about the Tax Cuts and Jobs Act in its current form because of its impact on services for people with I/DD.

I cannot support the tax reform legislation in its current form because:
- The changes proposed to the charitable tax deduction reduce the ability of nonprofit disability service providers to fund important services for people with intellectual and developmental disabilities (I/DD)
- As the only other federal support for Medicaid long term services and supports, the House passed legislation removing the medical expense deduction could put significant strain on the Medicaid program that serves people with I/DD
- The changes to the unrelated business income tax (UBIT) impact the ability of nonprofit providers and their associations to maintain limited but important revenues
- The changes to state and local taxes would have a negative impact on certain states that obtain significant funding from these taxes for services for people with I/DD
- The House legislation's elimination of tax breaks on bond financing could significantly undermine the financing for affordable housing for people with I/DD
- The addition of $1.5 trillion to the national debt may be used to justify future cuts in Medicaid, Medicare, or Social Security which are the main federal programs that support people with intellectual and developmental disabilities.

As your office considers how to restructure our tax system, I wish to share with you tax reform principles by the American Network of Community Options and Resources (ANCOR), the national trade association for disability service providers. These principles seek to ensure the stability of services and supports that people with disabilities rely on to participate fully in society. I hope you will consider these principles and the well-being of people with intellectual and developmental disabilities as legislative tax discussions advance.

ANCOR Tax Reform Principles
1. Any process that includes changes to Medicaid should be accomplished through a process that affords sufficient opportunity for legislators, advocates, and constituents to review and provide feedback on the proposal and legislative language prior to passage.
2. Individual or corporate tax cuts or expenditures must not be paid for by cuts to Medicaid, Medicare, Social Security, or other mandatory or discretionary programs that promote independence, inclusion, and community living for people with disabilities.
3. Tax reform should not decrease revenue to an extent that revenue is insufficient to continue to fund the programs and services and supports for people with disabilities at current levels or above.
4. The charitable deduction should be maintained and improved for the non-profit sector which provides the majority of services and supports for people with disabilities.
5. Unrelated business income tax should be held harmless to protect the vital role of nonprofits and associations in the disability services sector.

I look forward to working with you to strengthen community services for people with intellectual and developmental disabilities - please reach out to me if you have any questions.

Sincerely,

Elizabeth Aquino


#RESIST

Here's a link for you to send your own letter.

Here's where you can call with a script. Do it. I beg you.

The Congressional Switchboard can help you identify your members of Congress and will connect you directly to their office - dial it at 202.224.3121 or 202.224.3091 (TTY). A short script you can use is: "I am a constituent who cares deeply about issues affecting people with disabilities. If you do not already oppose the tax reform bill coming for a vote today, please do so because it has provisions that would harm services for people with disabilities. Thank you for your hard work answering the phones."

Active Empathy and Some Prom Photos

Have I told ya'll about our Indivisible group called Active Empathy? Indivisible is the national group that is resisting Trump's agenda in a methodical way. Active Empathy is what our local group is called, and a small group of us, including the four gorgeous founders, meet weekly to plan the BIG meeting which happens to be this afternoon. It's our second one, and we hope to galvanize people to really participate in the resistance. If you're local, please come or stay involved by getting our weekly emails. We have a facebook page and a website that are works in progress.

Activeempathy.org

Yours truly is heading up the Healthcare/Disability Rights working group. I'm using today's meeting to encourage people to be educated about healthcare law as it now exists, to know what Medicaid is, what block grants are, what single-payer insurance is, etc. etc. Education is everything, isn't it? It's everything, and we live under a regime that is not only ignorant but actively promotes ignorance. We're also, as working group heads, going to give our groups at least one ACTION item to complete this week. I know from the years of advocacy work that I did in disability and special needs healthcare, that doing one thing, however small, is essential and that this one thing should be done within days of getting all charged up and excited. One small thing.

So that's what's happening around these parts today.










On another note, I don't think I showed you these photos of my gorgeous son and his date from the prom last weekend. They appeared on Instagram and Facebook, but most of you who read the old blog are sane avoiders of social media, so here's my pride and joy, the light of my life, the little boy turned to man:

The Measure of Our Desperation

We've got two choices: resist or cut and run.

Cutting and running is the choice of the privileged and the desperate, so maybe it's more about the measure of our desperation.

Here's a poem:

Girdle

In our teens we all bought girdles
with rubber knobs to hold up our stockings.
We wiggled into them, our “foundations.”

So many things look absurd from a distance
that people still take seriously,
like whether there's a Heaven for pets.

What ever happened to my girdle?
One day I peeled it off for the last time
and all hell broke loose.

Connie Wanek, from Rival Gardens

I cut and pasted the poem here from The Writer's Almanac this morning after reading someone's post on Facebook. 

I bought a copy of Wanek's book and hope she doesn't mind that I've put her poem on my blog. Maybe you'll buy a copy of her book, too. 

So many people are throwing around their desire to flee the Disunited States of Amerikkka, Inc., and I get it. I'm a person who rarely feels sick to her stomach in the literal sense of the word and have probably actually vomited only about five times in my entire life, but I've felt more nauseous and fearful over the last few months than I have in the 53 years previous that I've lived on the planet. I wouldn't mind living in a small space along the coast of Costa Rica despite the bugs. I'd move to New Zealand, but traveling that far in a plane with Sophie might be worse than taking the fallout of a nuclear bomb from North Korea. 

You'll have to forgive my dark, tasteless humor if you're new here. 

Anyhoo.*

The thing is, I can't shake my privilege. What about all those who won't be able to cut and run? Are we as desperate as those people who travel thousands of miles through deserts and over barbed wire with only the clothes they're wearing? I'm not. This is as much our country as the fuckers who are ruling it right now. I'm going to have to remain fierce and resist the bullshit, even if the resistance amounts to nothing. If I take the measure of my desperation, I immediately plunge back into the many moments of watching Sophie seize and suffer, of watching my sense of control slip away, vomited up in some intense instant and then flushed down with water, my own face clammy against the cool of the bathroom floor. And still. Do you understand what I'm saying? I'm going to have to remain fierce and resist the bullshit. In this moment, this now, that ends the moments before and begins the moments after and on. 

It all sounds dramatic, maybe too dramatic. Peeling it off and letting all hell break loose sounds better.

#resist

*For those who are new, I hate this word and use it sparingly and in jest.

It Never Rains in Southern California

Well, I guess I should say Happy President's Day!

I posted the following on my Facebook page for an Andy Warhol fifteen minutes and then decided to take it down because it's so vile. Someone I know asked me whether it was real. Yes, it's real. It's true and not alternative fact. It's a transcript of 45's comments from ten years ago, and even as I acknowledge my role as contributor to ugliness, it bears repeating because we're all responsible on some level. I still can't believe that 45 now represents all of us on the world stage.

Let's move on.

On Saturday night, I attended the first meeting of our local Indivisible group. We're called Active Empathy, and we're intent on active resistance to not just 45 but also to the extreme right Republicans in power whose agenda doesn't represent us or -- in some cases -- the majority of people in this country, in addition to its undoing progress to protect our environment and ensure equal access to our healthcare and threatening our first amendment rights. I'd have to make this a Faulknerian sentence if I kept typing everything that's under threat, but our intentions include flipping the legislature with methodical action. The group that attended the first meeting was diverse in age, race, religion, sex and sexuality, a mini-Los Angeles. We introduced ourselves and told the others what issues we were most interested or concerned. The range was wide. Some tears were shed and some expressed anger. Many attendees are originally from the "flyover" states and perfectly aware that not everyone who lives in those states condones some of the more egregious behavior of 45 or the conservative platform. Many expressed the need to be self-aware, to at least acknowledge our part in further dividing the country with our anger and sometimes condescension. Others had more of a screw that attitude, believing it is going to take the adoption of Tea Party tactics to be most effective. Here's the beautiful logo created by one of the founders of the group. Active Empathy is the name that's above the following:

We're not a moderate group, which brings me to the other thing I wanted to write about, and that's the personal war I have going on in my tiny little mother mind.™ I generally use the tiny little mother mind™ expression to describe the relationship between me and the Powers That Be in Neurologyland, how over decades I've learned just how hegemony works. The analogy has some use here, too. What does it mean to be educated? What does it mean to be an elitist? When did the open derision of intellect become acceptable? What does it mean to be moderate? Why is moderation a virtue? Why is moving to the center a goal? Is that a construct or something truly admirable? Are there certain principles that should not be compromised? What convictions do I have that are immoveable? I don't have the answers. I have a tiny little mother mind™ and some gut instincts, though, that have served me well and that I have to constantly be vigilant to honoring. To help me with this, I've been reading Hannah Arendt's The Origins of Totalitarianism, and it's startling and fairly easy to draw parallels to what's going on today. I'm reminded of my instincts and of honoring them, how difficult it is to do so when I also have to deal with emotions, with a patriarchal culture and values that are more authoritarian than inclusive. There's a good discussion of Arendt's work here, including this choice passage:

“What convinces masses are not facts, and not even invented facts, but only the consistency of the system of which they are presumably part . . . Totalitarian propaganda thrives on this escape from reality into fiction . . . [and] can outrageously insult common sense only where common sense has lost its validity.”

It's exhausting, isn't it?

Let's move on.

I saw the extraordinary documentary about James Baldwin called I am not your Negro. Everyone should watch it and the documentary 13. They're both antidotes to the superficial bullshit that reigns in this country. It rained off and on all weekend here in southern California. Everything is green, so green. I've been reading Ann Patchett's novel Commonwealth and love it. I told a good friend that I haven't been able to get into a novel in a long time, that I remain half in and half out, that that was worrying me because reading novels has been really the only constant in my life (that's NOT hyperbole). I'm in Patchett's story -- totally in. The man I love brought me pink roses, and the boys I love showed me how to take pictures with my new iPhone so that the background is blurred out. How wonderful is that! Here's a picture of the roses using this clever technique and one of the cinnamon bread I baked. The boys I loved showed me the scratch and sniff technique on the phone, too. Just kidding. That IS hyperbole.

Reader, what did you do this weekend?

WOKE AF and What the Neurologist Says

Today was our quarterly visit with The Neurologist.  This is generally something I prepare for by downing three Bloody Marys and a chaser of frozen vodka (see the other 4,321,896 posts I've written on the subject. They generally begin with a photo of the waiting room wall with the CONQUER and TRIUMPH sign over the list of wealthy donors), but I'm not going to complain today because -- you know -- I'm grateful.

We've got health insurance (for now) and The Neurologist is very helpful as far as getting those pesky pre-authorizations that Anthem demands every month for the drug that Sophie has been on for EIGHT YEARS. When the Fresh-faced Pharmacist of the Month rings me up at the CVS, he inevitably asks me do you realize how expensive this medication is? And I say I do but tell me again how much it costs. And the young man says, Today it's $435. And I say that should be covered by insurance. And he says, Well, it needs a pre-authorization. And I say, Again?We've been getting this medication for eight years! And he says, It's a controlled substance, ma'am. And I say, Yes, I know that but I'm trying to grift the system here and keep the drug wars going by having benzo parties with all my friends. And he says, May I see your ID? Reader, I'll leave it up to you to discern which of those were alternative facts and which were the real thing, but I have digressed from my point that The Neurologist always helps me with The System and for that I am exceedingly grateful.

I'm also not going to complain about today's visit with The Neurologist because Sophie has been seizure free for more than three weeks. Yes. We have found the sweet spot, I guess, at least for now. I figure I can cover any jinxes by readily acknowledging that we might have a downturn at any moment. Downturns and rebounds are equal opportunity dictators.

I posted this picture of Sophie on Facebook this afternoon, and my feed literally exploded. Everyone is, of course, thrilled that Sophie is doing so well and many asked why? Here's why, I think, at least for now: Sophie was overmedicated on Onfi (the benzo that needs the pre-authorization) and the CBD. We know that CBD can jack up levels of Onfi, so when Dr. Bonni (Sophie's cannabis doctor who recently published a great book all about cannabis medicine that you can order on Amazon) suggested we decrease either the Onfi or the CBD to see if she responded, I naturally chose to decrease the Onfi. Faithful readers might remember that we jacked up the Onfi back in the fall when we spent six hideous days in the hospital ripping off the Vimpat, and I guess after a month or so her levels of Onfi were enough to put her in what I thought was an overall DECLINE. I was scared, ya'll and also resigned to -- well -- you know.

To make a long story short, I took away some Onfi and do you know that Sophie perked up? She more than perked up, actually. She is WOKE. She is rowdy. She is ready to fight with the rest of us against those who would stand in our way (we're talking about you Drumpf, and you Sessions and you Price and you DeVos and all of you who condone and support them and their retro policies that will hurt her and tens of thousands like her). She is not having seizures. She takes Onfi twice a day, CBD twice a day and THC once a day.

I'm here to blow your mind

Speaking of being WOKE, what did The Neurologist say? She was thrilled that Sophie is doing well and took care of my pre-authorization needs, but she also had a few choice words to say about the current clusterf**k that is our country. She was walking out the door, scribbling on a pad, but she said, I will NOT be here if the ACA is repealed and we go back to the Dark Ages before it when I had patients begging me not to write diagnoses in their charts. I think she kept muttering that all the way down the hall before she disappeared around the corner.



WOKE AF
#resist

Corporeal Politics

photograph by S. Herman

On Friday afternoon I joined a group of women from the Catholic community in my neighborhood and visited the Islamic Center of Los Angeles in our neighborhood for prayer. I confess that I was reluctant to do so for selfish reasons having to do with organized religion, but after brooding about it for a day or two, I realized that my discomfort was just that -- discomfort bred by ego. I was struck, especially, by one of the "twenty lessons from the twentieth century" that I posted the other day.

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.

Corporeal politics.

The mosque was filled, crowded with members there practicing their religion and with people from the community of diverse faiths, including a contingent of Latino men. We were there to pray with our Muslim brothers and sisters and to show solidarity with the Muslim people of our community and world, particularly in the face of the Trump administration's oppression of civil liberties.Those of us who chose to do so wore appropriate head coverings and went into the room for women, while others sat in the vestibule. The imam led all of us in prayer and then gave a beautiful talk about inclusivity, emphasizing that we are all God's people and intent on peace everywhere in the world. Afterward, the women of the mosque invited us into the kindergarten room to share in treats.

It was a profound experience for me, underscoring my conviction that we must continue this uncomfortable and difficult work to resist those who would divide this country and go against every ideal that we have ever professed.

Here's a wonderful and prescient poem by the great suffragette, Ella Wheeler Wilcox, who wrote it in 1914. I listened to and read it this morning at the Brainpickings website. You can read more about Ella's exhortation against silence here. Listen to the poem, too.

PROTEST

To sin by silence, when we should protest,
Makes cowards out of men. The human race
Has climbed on protest. Had no voice been raised
Against injustice, ignorance, and lust,
The inquisition yet would serve the law,
And guillotines decide our least disputes.
The few who dare, must speak and speak again
To right the wrongs of many. Speech, thank God,
No vested power in this great day and land
Can gag or throttle. Press and voice may cry
Loud disapproval of existing ills;
May criticize oppression and condemn
The lawlessness of wealth-protecting laws
That let the children and child-bearers toil
To purchase ease for idle millionaires.

Therefore I do protest against the boast
Of independence in this mighty land.
Call no chain strong, which holds one rusted link.
Call no land free, that holds one fettered slave.
Until the manacled slim wrists of babes
Are loosed to toss in childish sport and glee,
Until the mother bears no burden, save
The precious one beneath her heart, until
God’s soil is rescued from the clutch of greed
And given back to labor, let no man
Call this the land of freedom.

Ella Cox Wheeler (1914)

#resist