The Old Gray Mare, Part 435,679

It used to be that I pretty much did it all, and then I came on here and told it. It's all I can do these days to get a weekly post out, and even that one is hard going. I'm not sure why to keep on doing it, to tell you the truth. Not it as in all of it, because I'm still sort of doing it all, but the blog itself. I don't have anything funny to say anymore, and I feel as blowsy as those peonies dying on my dining room table. Everything of beauty seems somehow tainted these days, doesn't it? I hate saying that the political climate affects everything, but it kind of does. While I'm as committed as ever to resisting, it takes an inordinate amount of energy to maintain composure, to not feel profoundly depressed, to not want to give up and give in. When you have close relatives whose politics are directly contrary to yours -- well -- it's enervating, to say the least.

The only rant I have energy to make is something like what I posted on Facebook, and I'm perfectly aware of how ridiculous and destructive it is to curse and rant and otherwise refuse to reach across the aisle or extend a compassionate hand or seek to come together with those of differing views. There are times for that, and I just don't think this is one of them. So here's what I have to say:

Another round of FUs to those who voted for 45, didn't vote or voted for a third party.

That's my response to the most recent news that our POSPOTUS pulled out of the Paris Climate accord. I might also have posted, "Way to sever global alliances, 45." I'm thinking our return to Dickensian times of chimney sweeps and ten children families is nigh. 45 really is a POS, but the bigger PsOS are those legislators and citizens that are watching and abetting him.

The old gray mare ain't what she used to be. She curses at least 5,456 times a day now, out loud and in her tiny little mother mind.™

So, here's my rant again:

Another round of FUs to those who voted for 45, didn't vote or voted for a third party.

I doubt there are any 45-supporters out there lurking around and reading this blog, but if there are, FU, too.

Charming, right?

The old gray mare just ain't what she used to be, ain't what she used to be, ain't what she used to be.

On a brighter note, the old gray mare is finally getting some pages together of Ye Olde Booke or what I used to call MGDB.* Sorry for cursing again. The process has been to write the thing for nearly ten years, be awarded a prestigious three-week writing residency on Whidbey Island where it is finished and then spend the next two years dismantling it into a series of fragments.

It's in the fragments that I lie.

*My Goddamn Book

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

To My Troll, TwoBlack Jet:

My Mississippi Grandmother, Ida Mae and my Syrian Immigrant Grandfather, Charles
Brooklyn, New York
mid-20th century*

What was that you were saying, again, about President Drumpf's big heart?*

My tiny little mother mind™ wants to know.


Sincerely,

Elizabeth


P.S. After this weekend's hideous anti-Muslim executive orders and the installment of Iago*** in the National Security Council, Drumpf has proved himself to be heartless in addition to incompetent and megalomaniacal. I am not as much scared as enraged, and when I'm enraged, it's best to write. It's hard otherwise to make sense of this man destroying so much in only nine days.







* The picture of my grandmother and grandfather above is one of my favorites. My grandfather was a Christian Syrian from Homs and immigrated to the United States in the early part of the twentieth century with his family. While I realize that were he to do so today, he would actually be admitted to the country because of his religion, but I find it repellent that we, as a country, have gotten to the point where half of us have elected and continue to support a leader who is making a mockery of whatever ideals the country purports to have --  our country is after all, one of ideals and ideas, constantly dynamic and improved and improved. Messy and inclusive. We the people, etc.                                                                                    

**My troll, TwoBlackJet, asked me and other blog readers why we women marched the day after the inauguration and then engaged us in a sometimes amusing but ultimately frustrating conversation on the old blog. You can check it out by scrolling down to the post that has a bunch of comments, but you might want to pour yourself a shot of vodka, light up a joint or put on some music. When you're finished, I recommend a shower or some naked gardening.  If you don't have the time to waste, I'll just tell you that TwoBlackJet insisted that Drumpf has a big heart yet provided no details or examples to explain her/his/its convictions. While I understand it is the intent and nature of the troll to stir things up, I've seen similar comments and invective on conservative websites and social media threads, so I honestly DO want someone to answer these questions without doing what TwoBlackJet did which was to eventually go on a ridiculous personal tirade (provoked, I admit, by a condescending comment I made about her writing style -- a comment for which I made apologies)

***One of the blackest of hearts in Shakespeare is Iago from Othello whom I remember whispering evil things into Othello's ears. While I don't at all believe Drumpf to be an Othello, I do see his consigliere, Bannon, as a sort of Iago, twisting a naive and sick mind to bad. Whatever did happen to Iago, Reader? I can't remember.












#RESIST

Super Human Resistance

The only person in these parts who is super human is Sophie. She's basically arisen from a fast-declining, near-comatose state that lasted for a good six weeks or so. I think that I, along with The Powers That Be In Neurologyland, had a hand in her demise when we raised her benzodiazepine Onfi by about four times. I think she was profoundly over-medicated. As I've mentioned before, CBD can raise the levels of Onfi, so once I'd decided that she was over-medicated (with the help of her father and Dr. Bonni Goldstein, cannabis doctor extraordinaire) and lowered said medication, she began to emerge. I also brought her back to Dr. Joy Jin (Chinese doctor extraordinaire) who is giving her Chinese herbs and The Osteopath who is treating her overall well-being with regular visits. A week or so ago I also had an amazing experience with Sophie in my home which so blew my mind that I am hard put to talk, much less write about it. It was a "sound bath," and I know by even typing that out, I am going to sound like a crazy lady from LaLa land. Trust me. I don't do drugs, but I imagine what we experienced was similar in intensity and beauty without the side effects.

So, yes, arisen. Sophie has arisen like some kind of secular Lazarus.

Yesterday, we went to the dentist, a trip that I loathe, probably, more than any other aspect of caregiving. Sophie actually stayed still with only minimal restraint, opened and closed her mouth on command with a bit of cueing, and the new dentist talked to her the entire time she worked. She works with adults with disabilities and has trained to do so at UCLA, is probably about fourteen years old but is an angel, a true angel. She even made a little tool out of six or seven tongue depressors wrapped in gauze that she used to prop Sophie's mouth open. The usual tool is this metal clamp thing that resembles some kind of nineteenth century gynecological device and is so uncomfortable that Sophie generally thrashes and screams when it's placed in her mouth. The tongue depressor contraption worked perfectly because Sophie likes to bite on things, and she could do so even as the dentist worked on cleaning her teeth.

Again, arisen. Sophie has arisen like some kind of secular Lazarus. With help.


She's AWAKE.


The other thing I wanted to say here is that I wake up every morning in a state of dread. I know ya'll do, too, and I know most of you want to not only resist the clusterfuck that is our current government but stay alive while doing so. This morning as I did my usual morning things, I thought about being in it for the long haul. I realized that I've been in it for the long haul as a caregiver. I've watched my child seize tens of thousands of times, an experience that some people have only once if at all. It never gets easier, but I'm still here. Sophie, despite having tens of thousands of seizures, is still here. I'm taking cues from Sophie. She's a resister. I can be a resister. You can be one, too.

In addition to caregiving and seizures, though, or despite it and them, is a life filled with family and friendships and reading literature and poetry. There's making love and writing and laughing and drinking and eating good food. There's going to the movies and bird-watching. There's taking care of my garden and beautiful house. There's meditating and thinking and allowing my rich imagination to flourish. In between having seizures and convalescing for Sophie there's music and walking outside, there's looking up at trees and out to the horizon at the edge of the ocean. There's eating and watching and drinking and swinging and taking baths. There's being held tight by brothers and a mother and a father. There are things to chew on and mermaids. There's a purple room.

What's my point? We can't keep up this resistance without help and without acknowledging the other parts of our lives. I read an article today that I thought I'd share here. It's called How To #StayOutraged Without Losing Your Mind by Mirah Curzer. Thank you, Mirah! One suggestion , among several, is that we pick one or two things to concentrate on. I'm picking healthcare and disability-related issues,particularly for the disadvantaged and minorities.

What are y'all going to do?






#RESIST

#RESIST (DAY 4)

poster by Shepard Fairey

The EPA was just directed to freeze all grants. This means that graduate students and researchers funded on EPA funds are now without funds. All ongoing studies are stopped.

Scientists at the EPA and USDA are also blocked from communicating with the press or through the internet.

It all happened in a moment with a memo, by executive action, with zero input or oversight.

It could happen to any Federal institute, including the National Science Foundation, which funds research at universities around the country -- including the health insurance and living stipends of many, many students. 

Trump also froze all federal hiring yesterday.

Please, if you can safely raise your voice, raise it loudly. 

Call your congresspeople, call the White House, write op-eds and articles and blog posts. 

AND TWEET 

This is only Day 4.

(Share widely-- copy and paste is best to share with people outside our common friends. I did not write this. It was copied and pasted from a scientist who wants to remain anonymous. The fear of retaliation is real.)



#RESIST

Short-Winded and Sharp-Tongued

I've been writing a long time. My father sent me the scrap of paper above which I'll add to a little box full of poems and stories that I wrote long, long ago.

As the dreary news trickles in, my tongue smarts and the words to an old American song drift inside my brain.

Oh give me a home

As I wrote on a previous post, my arms aren't long enough to reach, always, with compassion toward everyone. Mea culpa. 

As my friend said in a text this morning, Trump is the whetstone where we sharpen our tongues. 

where the buffalo roam,

The picture of our President Resident Lech with six other white men standing round watching him sign legislation that tells women what we can't do with our BODIES

where the deer and the antelope play

Our President Resident Lech has given the go-ahead to fuck with sacred land and clean water, and we are being asked to reach out with compassion.

where seldom is heard a discouraging word

I don't think softened words are going to do much of anything.

and the skies are not cloudy all day.

A Reply to Unknown

copied from my friend Michael's Women's March sign

Unknown left a comment on my last post or, rather, a question.

Here it is:

I am not sure what anybody is protesting. What exactly was the protest about? This I cannot figure out. 

Oh, my.

Where to start?

First of all, this was billed really as a "peaceful march" and not a "protest," but we were, of course, protesting that Donald Trump has been voted into office and has assembled a cabinet of billionaires around him whose interests run contrary to ours.  Drumpf for many of us is an emblem, the last gasp of a dying white patriarchy that persists in objectifying women, raping the planet and keeping down people of color, those whose sexual identity is different than "the norm," and any religion other than Christianity. Many were deeply offended by him mocking a disabled person, denying that he did so and never acknowledging the hurt he caused. I believe all of us who marched object to his constant lies and lack of empathy, to his insistence that success is measured by one's material possessions and acquisition of wealth. Those who voted for him might not be misogynists or climate change deniers or racists and xenophobes, but they sure are enablers. Many of us marched to differentiate ourselves from them and to support the vulnerable. I marched for my disabled daughter and the thousands of people with disabilities that I know. I marched for my two sons and all boys growing up in today's world to let them know that the man who is the President of the United States is not someone to look up to as a model, that his behavior should never be normalized. I marched because I love a man who is black and I believe fervently in Black Lives Matter.

That being said, I think the main reason why women the world over, as well as the men that love them, were inspired to march, was because of the following words we all heard come out of his mouth, words that were never taken back, words that he never made an apology for nor reflected upon but even defended. These were words that plenty of men and women actually dismissed even as his degrading remarks to and about women continued.

So, why did we march, Unknown? Why did we wear pink pussy hats? Why did we protest and what were we protesting?

Here's the text of Drumpf's overheard remarks about women and his own "power" over them:

I did try and fuck her. I moved on her very heavily. In fact, I took her out furniture shopping. She wanted to get some furniture.  I’ll show you where they have some nice furniture. I moved on her like a bitch, but I couldn’t get there. And she was married. Then all of a sudden I see her, she’s now got the big phony tits and everything. She’s totally changed her look. .. I’ve gotta use some Tic Tacs, just in case I start kissing her. You know I’m automatically attracted to beautiful ― I just start kissing them. It’s like a magnet. Just kiss. I don’t even wait. And when you’re a star they let you do it. You can do anything. Grab them by the pussy. You can do anything.

Donald Trump, President of the United States of America

Unknown, that's why we marched. This cretin became President anyway. And millions of us are going to resist him for as long as we have breath.

Best,

Elizabeth Aquino and millions of other women

#resist
#wokeAF

WOMEN #resist

I am completely undone by the beauty of the day -- the achingly blue skies, the hundreds of thousands of peaceful marchers, the brilliant signs, my spectacular friends, the power of peace and love, the exhilaration of Truth staring you in the face.

That was the easy part. Now the real work begins.

May we all feel constant courage in our resistance to what was unleashed in our country.

May we all be strengthened and nourished by what we experienced today and saw all over the planet.


#Resist
#ILoveLosAngeles

Guns and Grizzly Bears and Jesus, Oh My!

Bear, looking into a Connecticut school classroom

GUNS and GRIZZLY BEARS!

Have ya'll been watching the shitshow on C-Span? Who knew we'd be living in these times, a kind of Monty Python meets Dante with an overlay of Caligula? For you readers outside of the Disunited States of America, congressional hearings of Drumpf's cabinet appointees are underway. So far we've heard all kinds of interesting stuff from the Band of Billionaires that Drumpf has elected to run his government. Yesterday, I heard Betsy Ross DeVos (not her real name, but I can't help it), Education Secretary-Elect, talk about the issue of guns in schools as best left to the states, her example being the great state of Wyoming where its population of three hundred children in public school warrants guns to defend from grizzly bears. The question about guns was asked by Senator Chris Murphy, Democrat from Connecticut, a state where an entire class of first graders was gunned down by a white disaffected young man whose mother was a legal gun enthusiast.

JESUS!

Speaking of, while it wasn't brought up at the hearing, Betsy Ross DeVos (not her real name but I can't help it) is also on the record as saying that schools need more Jesus. She and her ilk are on a mission, apparently, with their "school choice" and "voucher" programs. Evidently, these programs are part of a larger plan to bring greater Kingdom gain. I know that the buzzwords of school choice and vouchers simplify a complex problem that good minds have been working on for as long as our planet has been spinning round the sun (or perhaps only for the last 6,000 to 10,000 years that the earth has been around, according to creationists whom Betsy Ross DeVos has embraced), but forgive me if I don't trust in Jesus guiding billionaires to fix public education, especially Betsy Ross DeVos who appears to know very little about public education or even about what it means to need a public education.

Reader, do you know what IDEA is? No worries if you don't, because your proposed Education Secretary, Betsy Ross DeVos (not her real name but I can't help it) doesn't either. The Individuals with Disabilities Education Act (IDEA) ensures that all children with disabilities are entitled to a free appropriate public education to meet their unique needs and prepare them for further education, employment and independent living. When questioned by Senator Tim Kaine about IDEA, she was either woefully uninformed or screwing around with us. Given the rictus on her face, I'm thinking both.

Between her ignorance or dismissal of education and disability law and Attorney General Elect Jim Sessions' statements about children with disabilities being the bane of the public school system -- well -- JESUS CHRIST! -- maybe those are words that she does know and understand?

Anyhoo.



I'd like Betsy Ross DeVos (not her real name but I can't help it) to know that the public school system, however flawed, afforded my daughter Sophie nearly two decades of inclusion in our community, stimulation, both academic and social, and an alternative to sitting at home or in a nursing institution, wasting away, like many people with disabilities did, even in my lifetime.

I'd like the woman to know that the only reason Sophie's education was ensured was federal law, and that, even so, individuals and school districts will break the law or work around the law which makes me believe that without the law, we cannot be assured that our children will be guaranteed a public education despite their disabilities. I do not believe that Jesus ensured my daughter's public education.

I'd like Betsy Ross DeVos (not her real name but I can't help it) to see this picture of Sophie that I took yesterday. It was her first day back at her public high school in over five weeks. She was so happy to be back. Honestly. She had a GREAT DAY.

So what can we do about this, outside of downing shots of frozen vodka and watching reruns of Monty Python skits or praying to Jesus to step in?

We can resist.

Here's a way:

Many Senators have already expressed doubts about DeVos’ fitness to run the education department. Let’s drive those doubts home. EVEN IF YOU'VE ALREADY CALLED ABOUT DEVOS, CALL AGAIN 

DC callers will be directed to Lamar Alexander, chair of the Committee on Health, Education, Labor and Pensions. Here are the numbers of all the HELP committee members -- a fairly star-studded group as senators go -- that you can also call. If you see one of your senator's names on this list, weigh in!

HELP Committee
Chair Lamar Alexander (R, TN)
202 224 4944

Ranking Member Patty Murray (D,WA)
202 224 2621

Mike Enzi (R, WY)
202 224 3424

Bernie Sanders (I, VT)
202 224-5141

Richard Burr (R, NC)
202 224-3154

Bob Casey (D, PA)
202 224-6324

Johnny Isakson (R, GA)
202 224-3643

Al Franken (D, MN)
202 224-5641

Rand Paul (R, KY)
202-224-4343.

Michael Bennet D, CO
202-224-5852

Susan Collins (R, ME)
(202) 224-2523

Sheldon Whitehouse (D, RI)
(202) 224-2921

Bill Cassidy (R, LA)
(202) 224-5824

Tammy Baldwin (D, WI)
(715) 832-8424

Todd Young (R, IN)
(202) 224-5623

Chris Murphy (D, CT)
(202) 224-4041

Orrin Hatch (R, UT)
(202) 224-5251

Elizabeth Warren (D, MA)
202-224-4543

Pat Roberts (R, KS)
(202) 224-4774

Tim Kaine (D, VA)
(202) 224-4024

Lisa Murkowski (R, AK)
(202) 224-6665

Maggie Hassan (D, NH)
(202) 224-3324

Tim Scott (R, SC)
(202) 224-6121

**For more Daily Action alerts, text the word "DAILY" to 228466 today!**

And if you would like to contact your Senator without signing up, you can just call (844) 241-1141 to be connected.

Saturday Resistance -- Hear Me Out If You Care About Sophie and People Like Her

I take care of Sophie at home with the help of her father and a part-time babysitter because of a Medicaid waiver that she qualifies for given her cognitive and physical disabilities.She has been "deemed" a person "qualifying" of "institutional care." I am basically paid to take care of her at home, saving the government -- taxpayers -- a considerable amount of money to care for her in an institution. Those are the bald facts. We are, in a capitalist society, reduced always to a number. It saves you money to honor this social contract.

If the Affordable Care Act is repealed, this ability to care for Sophie will be severely compromised. Please read the following email that I've cut and pasted in full to learn more about what's going on for America's disabled and chronically ill.

If you can, lend your voices to the resistance.

I know many of you reading this blog are conservative voters who live in states that are gung-ho bent on destroying the Affordable Care Act. Perhaps you don't realize that despite its imperfections, it has also lent stability to millions of families like mine. Yes, we do struggle with rising premiums. We do struggle with the systematic denial of medical claims. We struggle with the ungodly amounts of money charged for pharmaceutical drugs. I am paid minimum wage to care for her at home, an amount far inferior to that which I might earn in a full-time career. I also struggle to care for Sophie without going insane, to tell you the truth, because it's just brutally hard to do what we do every single day for decades. Sophie's recent 5-day hospitalization cost more than $150,000. That would have bankrupted us if not for the Affordable Care Act and her Medicaid waiver, and I live in a grotesquely over-priced tiny bungalow in an economically rich neighborhood in Los Angeles. I have family that helps me to pay for relief, too. Unlike most people in similar circumstances, I have enough money to get therapy to help me to deal with the caregiving, with the constant stress of seizures, with the possibility of Sophie dying before me or dying afterward.

I'm telling you this to emphasize just how life-altering it was when the Affordable Care Act passed, even with all of its absurd complexity and kow-towing to the big insurance companies. The pre-existing conditions component, the lifetime maximum component, the preventive care component, the birth control component -- shall I go on? Our family was careening toward serious financial difficulties and running the risk of going uninsured before the Affordable Care Act was passed. Sure, we might have been "saved" by family, we might have taken the risk to have no insurance at all. I don't know. What I do know -- again -- is that I have plenty of resources, both financial and emotional and that many, if not most, of my fellow caregivers, their children and families, do not. So I'm advocating for them, really, far more than myself.

Even if none of this comes to pass, if the draconian machinations of Eddie Munster, Drumpf et al come to nothing, if the "replacement" even happens, the psychological distress that many of us are feeling right now is really difficult to convey without sounding whiny, maybe, or privileged. Then I remember what the hell we've all been doing, how much we fought for the ACA to begin with and how we have to do it all over again, even as we continue to advocate for and keep our children ALIVE.

If you can, lend your voices to the resistance.

Read this:

ICYMI: ANCOR Urges Congress to

Protect HCBS as Changes Begin

 

Alexandria, VA – Yesterday, the 115^th Congress approved a budget resolution that sets the stage for the repeal and replacement of the Affordable Care Act (ACA), and allows for changes to the Medicaid program. In response to this action, ANCOR responded with a statement urging Congress to protect the HCBS Medicaid program, and to consider the widespread effects any alterations to the ACA and Medicaid would bring about for people with intellectual and developmental disabilities, and their loved ones.

 

ANCOR has also alerted its members – community service providers to people with intellectual and developmental disabilities – about the vote, and encouraged them to relay these consequences to their representatives and senators. 

 

ANCOR CEO Barbara Merrill responded to yesterday’s vote with the following statement:

 

"Now is the time we must weigh in and let Congress know that individual lives depend on the Medicaid home and community-based services system, and that no changes should even be considered until stakeholders like ANCOR see what the proposed changes are."

 

See below for ANCOR’s statement in its entirety.

 

 

“Today, the 115th Congress concluded their approval of a budget resolution that sets up the mechanism for Congress to repeal and replace the Affordable Care Act and also, through a process called reconciliation, make changes to the Medicaid program.

 

These changes include moving forward with proposals to transform Medicaid to a block grant or per capita cap program. Republicans, who hold the majority in both Houses of Congress, have indicated their intention to move forward quickly with this plan.

 

‘Now is the time we must weigh in and let Congress know that individual lives depend on the Medicaid home and community-based services system," said Barbara Merrill, ANCOR CEO, ‘and that no changes should even be considered until stakeholders like ANCOR see what the proposed changes are.’

 

ANCOR sent an alert this afternoon to its members – community service providers to people with intellectual and developmental disabilities – and urged them to contact their senators and representatives to ensure they understood that decisions to alter the Affordable Care Act or Medicaid as a whole have direct, and at times immediate, consequences for people with intellectual and developmental disabilities and their families who rely on home and community-based services.

 

‘The Affordable Care Act includes the creation of innovative and effective programs, like the Community First Choice Act, which have strengthened the Medicaid program and improved the ability of states to provide quality residential and day services for individuals with I/DD,’ explained Esmé Grant Grewal, Senior Director of Government Relations for ANCOR. 

 

‘The Medicaid HCBS program, while not perfect, is essential to making sure that hundreds of thousands of individuals with disabilities can live in the community. Historically, when states needed help in shifting children and adults with these disabilities out of large and isolating institutions, the HCBS program was created as a federal and state program to support that need.’

 

ANCOR urges Congress to engage stakeholders when considering changes to the Affordable Care Act and Medicaid, and offers itself as a resource to any Congressional office.”

ANCOR is the American Network of Community Organizations and Resources. 

Shame

on you for voting for Drumpf.

Shame on you for not voting at all.

Shame on you for supporting Republican policies.

Shame on you for reducing everything to economics.

Shame on you for your racism, misogyny, xenophobia, greed and ignorance.

Shame on you for being a climate change denier.

Shame on you for supporting a man who mocks the disabled.

Shame on you for supporting the sexual assault and degradation of women.

Shame on you for claiming that you're not a racist or a misogynist or xenophobic, greedy or ignorant. You have condoned all of the above with your vote and support.

Shame on you for claiming that you do not support the sexual assault and degradation of women. You have condoned all of the above with your vote and support.

Shame on you for denying what we can see with our eyes.

Shame on you for supporting those who, in the middle of the night, voted yes to repeal the Affordable Care Act.

Shame on you for undercutting those of us who have real issues at stake.

Shame on you who say get over it, don't get your panties in a wad, be patient and see what good will come.

Shame on you for not listening to those of us who deal with healthcare issues every single day, who've told you that this repeal will be harmful.

Shame on you for not realizing that even the thought and the build-up to the repeal of the Affordable Care Act is deeply damaging to the psyches of many people who've been through far more than you can imagine.

Shame on you for claiming to be Christian when literally everything that's going down is anathema to the teachings of Jesus Christ.

Shame on you for equivocating.

Shame on you for using false equivalencies when truth hits you in the face.

Shame on you for your lack of backbone.

Shame on you for your cynicism.

Shame on you for your patriotism.

Tiny Little Mother Mind™ Part One

Tiny Little Mother Mind™, under wraps

I've got two things to say, and they're both reflections from my tiny little mother mind.™

I'm going to break them up into two posts. After reading this, stay tuned for the second one because it has to do with MEDICAL CANNABIS.

The first has to do with the wonderful commentator Van Jones, whom you might be very familiar with as his pre and post-election insights have been sustaining to many progressives. Today I read a good long interview with him in Rolling Stone. It's called Van Jones: Only a 'Love Army' Will Conquer Trump. Here's the thing. I love Van Jones and I love what he's saying. His words have particular relevance to me because I am guilty of spewing my disgust at the current political situation and certainly lumping all those who voted for Drumpf together. I am going to try, try, try to reach out and be more understanding of the varied reasons people voted for this man, however difficult that might be. I want very much to be a part of the 'love army.'

Where my tiny little mother mind™ gets miffed, though, is from this passage:

How do you do that? We're going to do national teach-ins starting very soon – once a week, every week, standing up for the most vulnerable people: Muslims, the DREAMers, Jewish people, women, trans people, black protestors. And once a week, give the whole country a chance to show a whole lotta love – both to demonstrate and deepen a solidarity with those groups, all under one hashtag. #LoveArmy is an opportunity to reassert at a values level.

What are we missing in that paragraph? Anyone? Who's missing? What did my tiny little mother mind™ catch that Van Jones did not, nor Rolling Stone?

THE MOST VULNERABLE PEOPLE in this country includes those with disabilities, particularly those with cognitive disabilities. They are routinely left out of the conversation, as we see in Van Jones' otherwise beautiful, inclusive words,  and while I know this isn't intentional, it's deeply symbolic.

What's coming round the bend with the Drumpf administration and his Band of Billionaires, as well as the usual folks like Eddie Munster et al, is striking fear into every single caregiver of a disabled person that I know and in disabled persons themselves. ALL the systems of care that we rely on, including health, health insurance, scientific research, education, social services, respite, etc. are at risk. These systems of care -- these issues -- help to assert and maintain the dignity and well-being of disabled persons. DISABILITY RIGHTS ARE CIVIL RIGHTS.

I'm not sure what to do about it but keep talking and talking and writing and writing. Will you help me? Will you share this? Will you speak to Van Jones and Rolling Stone and other media outlets that routinely neglect to include the rights of the disabled as worthy? Again, I do not think it's intentional but rather that the disabled have perhaps the quietest voices, if at all, in our country. They are not literally "worth" anything at all -- monetarily. Often they do not have a vote or a voice. Their caregivers are generally exhausted. They have few champions.

This tiny little mother mind™ is begging you to help.

#LoveArmy

The Fall of America

I know most of you who visit here probably feel the same way about the cast of freaks that Drumpf is assembling as his Cabinet. I don't know about ya'll, but I fall hard to sleep each night after reading a bit more of a novel (reading is my only constant and even in times of extreme stress, I can read a damn novel), and when I wake up I'm generally in a positive mood (this, even though I am generally also wakened by Sophie having a seizure) as long as it's daylight. These days, though, since the Buffoon was elected by the Buffoonizens, it takes about one minute and sometimes less, for me to remember. At first it's a vague thread of something, what is it again, and then it's Oh, yeah and then it's confirmed by some godawful new story of dark-houred tweets with a hostile foreign country or a thin-skinned response to being mocked on a television show or the appointment of a confirmed racist as the chief lawyer or a climate change denier in charge of the environment or a creationist in charge of education. Throw in the bottle blondes and the Stepford wife and daughter, and then the nightmare that is the day begins, again.

Anyhoo.

Let's change the subject for a moment.





I've never been very good at building things or dealing with the spatial. I get lost, literally, every single time I park my car in a parking lot, and at least once or twice a day if I'm traveling anywhere other than, let's say, ten square miles.

When I took an aptitude test back in the dark ages of the last millennium, when I was still in my teens, I scored off the charts for a test called Ideaphoria, where you had to write as much as you could about anything in five or so minutes. Granted, I was probably doing something similar to here which is allowing my brain to just meander and wander and muse and peruse, my fingers quick at the keys. I am made of words, I guess. Back then, when I was asked to put together in my mind geometric figures using as guide these one-dimensional drawings with dotted lines for folds -- well -- I could not do even one. I stared at those things with my tiny little mother mind™ to be and just watched them, floating in the universe. What fresh hell was it?

I remember these things periodically, as well as how bad I am at sports, when I watch my sons. Where did these creatures come from? I think, more often than not. I used to call Henry the Lego Genius because of his uncanny ability to put together complex sets with only the most cursory check of the directions. Since Oliver is severely dyslexic, he never looks at signs or reads directions, much less books, yet is able to navigate his way through any city after being in it for half an hour. I'm not kidding. He's been doing this since he was about two years old. It'd be creepy if it weren't perfect for someone like me who turns left when I'm supposed to go right, every time. 
Anyhoo.

I saw one of those Christmas trees made from books the other day on the internets and decided that I wanted to do it. I thought it might cheer me up from the Drumpfian nightmare and at the very least distract me. I gathered about 100 books of various sizes and thicknesses and piled them on the dining room floor. Then I watched the video about five hundred times and made about three hundred attempts to construct even the first layer. I'm actually pretty patient, even when I get lost or become very confused.

HENRY and OLIVER! I screamed.

They were back in their room playing some godforsaken video game with incredible skill, I'm sure, but they obliged me and came into the dining room. After expressing incredulity and scorn for what I was doing, their general default, they decided to humor me. Henry got down on the floor and began building the tree without even looking at the internets, while his brother criticized him and cracked jokes.

Whenever I attempted to place a book on the growing tree, I was admonished for not doing it right. What is wrong with you? Oliver asked me, more than once, and I admonished him for being disrespectful of his old mama.

Save the pretty Penguins for the top! I cried at some point and directed Henry to place the beloved novels in front and the books about cars and magical places that I'll never visit to the back.

When Henry got to placing The Idiot on the pile, he expressed disbelief that this was really the title of a book. I expressed disbelief that he'd never heard of Dostoyevsky despite being in school for the last fifteen years, including a semester of Advanced Placement Literature. Not to mention that I carried him inside of my uterus for 42 weeks, after which he was pulled from me, nursed for fourteen weeks from my body and then was cared for every single day for the next eighteen years. He rolled his eyes at me and then said, Look, Oliver, it's a book about you.

Good thing he's so good-looking.

I might not be able to find my way to my car or even your house, and I'm also having a hard time figuring out how to navigate the fact that despite grabbing women's pussies (that might be the first time I've typed out that word) and mocking a disabled person, Drumpf is the leader of the free world. God, I've always hated that expression.

I sure have read a lot of books, though, and I remember every single one of them. I realize that that doesn't make one whit of difference in the world at this point except for in a tiny subset of the general population. It feels somewhat familiar as I can remember that being smart or intellectual was entirely uncool during middle school at the hoity toity prep school I attended in Atlanta, Georgia. It was much better to be pretty and rich than to have your crooked nose with rose-tinted glasses perched on them, buried in Great Expectations. If I close my eyes, I can be right back there, and now I don't even have to close my eyes. I'm pretty certain that most of those classmates, with the exception of a few, are thrilled to finally have a president who won't come for their guns or rip babies out of their wives' wombs. That we have a racist for Attorney General, a climate change denier for the environment, an orthopedic surgeon for Health and Human Services who hates the Affordable Care Act and loves the private insurance industry, a billionaire who doesn't give a shit about public schools for education and now, a neurosurgeon to handle housing and urban development -- well -- what more is there to say? If there's any human I distrust more than a neurosurgeon, it's an evangelical neurosurgeon. As I told my friend C who was lamenting the latest white cop getting off after shooting an unarmed black man in the back, it's not going to get better, and it's probably going to get worse. I suggested that the racist attorney general could instruct his law enforcement to sprinkle crack on felled dead black men, after which the evangelical neurosurgeon could remove their brains in some deserted housing project that he's emptied and give them to the orthopedic health and human services dude to run research on white exceptionalism for Drumpf and his chief strategist.

Shit. Where was I?

At one point, after checking my phone for news and feeling the lurch, again, of nightmare, I grabbed my yellowed old copy of Allen Ginsberg's The Fall of America before it got buried under the pretty Penguin classics. I made sure that Alan Paton's Cry the Beloved Country and Walt Whitman's Leaves of Grass were front and center. Ginsberg went on the top. I can almost hear the cries of the death of Christmas, can't you?