Tuesday, January 31, 2017

Venus and the Moon

Why is the sight of a moon sliver and a bright star next to it so beautiful? I want it to mean something. So much coming at us, and I feel diminished even as I wax, as powerful and dumb as the moon.

Your silhouette crossing the lawn and away from me.

The urge to wrest from the gut when the words form in the brain.

In an ever-changing, incomprehensible world the masses had reached the point where they would, at the same time, believe everything and nothing, think that everything was possible and that nothing was true. ... Mass propaganda discovered that its audience was ready at all times to believe the worst, no matter how absurd, and did not particularly object to being deceived because it held every statement to be a lie anyhow. The totalitarian mass leaders based their propaganda on the correct psychological assumption that, under such conditions, one could make people believe the most fantastic statements one day, and trust that if the next day they were given irrefutable proof of their falsehood, they would take refuge in cynicism; instead of deserting the leaders who had lied to them, they would protest that they had known all along that the statement was a lie and would admire the leaders for their superior tactical cleverness.

Hannah Arendt, The Origins of Totalitarianism, 1951

Monday, January 30, 2017

Soul Repair in a Cruel Era

photo by Carl Jackson

On Friday night, poet and MacArthur Genius, Heather McHugh, graced a room full of my friends who came to watch a screening of her and Adam Larsen's documentary UNDERSUNG. The documentary is a love story unlike any you might have seen, following four families as they "explore the limits of human need and in the process show us something limitless."

Long-time readers of this blog know that several years ago I was fortunate to receive a one-week, all-expense paid respite in Victoria, Canada. Caregifted is a non-profit foundation founded by Heather shortly after she received her Genius award. Family caregivers who have been caring for their disabled relative for at least ten years are eligible to receive the one-week respite grants.  The week quite literally changed my life, transforming my perceptions of identity and what my future might be. I felt grounded, at peace and truly rested for the first time in nearly two decades. I felt a deep and abiding sense of possibility that holds true even today, three years since I lay on a bed by myself in a little apartment in Canada, took long walks on a log-strewn beach, wandered the small town and took long, luxurious baths while the rain pattered on the ceiling.

One of my best friends, Cara, opened her gorgeous home to all of us on Friday evening. Here I am in a room full of people that I love, trying to do justice to what Heather and Caregifted gave me that summer:

photo by Carl Jackson

Heather is not just an angel and philanthropist but a poet. When we planned the evening, she wrote me:

We could think of these gatherings as soul repair in a cruel era. Something we can do, as artists and philanthropists, to re-secure communities of kindness. I see these gatherings as just another way (like the marches) of re-securing our premises in principled kindness, over and against mockeries and manhandlings and one-upsmanships.

Given the constant drumbeat of hideous news and our mounting fears, particularly for those of us in the disability community (our disabled children and young adults are among the most vulnerable in the country), Heather's message was truly soul-repairing. She read two powerful poems and then led us down a labyrinthine path, telling us how caregivers have inspired and motivated her to action. I can honestly say that I still don't understand how this woman who is not a mother herself has accomplished something incredibly profound in understanding exactly what our experiences are -- both the joys and the sorrows -- and reaching out to help us in a way that has eluded even our closest friends and relatives. She is one of the great humanitarians, I think, of our time.

On Friday night, Heather truly secured our premises in principled kindness.

I find myself, again, deeply in debt to both Heather and the many friends who came out to support Caregifted.

Thank you, beautiful people!

Make a donation to Caregifted, if you're so inclined!

The documentary can be streamed on Amazon now, and I highly recommend that you watch it. Here's a clip:


Sunday, January 29, 2017

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.



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.


Wednesday, January 25, 2017

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?


Tuesday, January 24, 2017


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. 


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.)


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.

Monday, January 23, 2017

We're Citizens, Not Spectators

The most terrible possibility of the post-inaugural world—the one most feared by many people I know—is a serious increase in hatred, violence, misogyny, homophobia, racism, and xenophobia, the usual forces that lie sleeping in any mass society, and when stirred up, can give rise to forms of fascism. I realize that fascism does happen. But I refuse to assume, absent hard evidence, that that’s where we are headed. My guess is—and my hope and faith is—that the quotient of blind hatred in America will remain more or less the same, and that in the end basic human decency will rule the day. 
Norman Fischer 

I'm finding much to ponder on this gray, rainy morning. I really like these articles on the Buddhist site Tricycle.

Last night I finished reading Bluets a remarkable book by Maggie Nelson. I'm back into The Girls by Emily Klein and Tears We Cannot Stop by Eric Dyson. The novel is an easy but well-written read, and the non-fiction is sobering but necessary, I think, for those of us who are privileged and white.  I'm trying to stay off Facebook a bit -- not shutting it out entirely because I actually enjoy staying engaged there, but it also kind of exhausts me and I have some free-lance work to do and a manuscript to prepare for an editor (!).

I hope ya'll are surviving. The hard work remains, doesn't it? Exhausting but necessary.

If you haven't signed up yet and wish to continue the work, Daily Action is an easy way to do so. You can sign up for daily action texts here. Today's action is to urge your senator to oppose modern-day robber baron Steven Mnuchin as Treasury Secretary. Daily Action makes the whole process of doing something every day very simple and streamlined. If you live in a conservative or swing state, it's so important to keep those phones going. If there's one thing that this election cycle and new administration has propelled, it's activism for progressive causes -- the real thing and not just lip service. I like this quote from one of the Buddhist articles that I linked to above:

For many decades American politics has been becoming increasingly spectacular in the literal sense of that word: like a spectacle, a show. Maybe Trump’s expertise as a reality TV star, and the consequences of his style, will finally inspire us to stop being spectators and begin being citizens. This is my hope. As citizens we will have to pay less attention to political hype and more attention to actual political details. We will have to be better informed and more critical. We will have to determine when it is effective and crucial to respond to events by writing, posting, agitating, and organizing. We will have to call local and state representatives, registering protests as necessary in the spirit of dharma: consistently, patiently, peacefully, and with respect for all. There will be many opportunities for creativity in our political expression. Staying close to our practice will help us to seize these possibilities.

Sunday, January 22, 2017

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.

Elizabeth Aquino and millions of other women

Saturday, January 21, 2017

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.


Friday, January 20, 2017

"A Unicorn and An Echo"


Human reason is beautiful and invincible.
No bars, no barbed wire, no pulping of books,
No sentence of banishment can prevail against it.
It establishes the universal ideas in language,
And guides our hand so we write Truth and Justice
With capital letters, lie and oppression with small.
It puts what should be above things as they are,
Is an enemy of despair and a friend of hope.
It does not know Jew from Greek or slave from master,
Giving us the estate of the world to manage.
It saves austere and transparent phrases
From the filthy discord of tortured words.
It says that everything is new under the sun,
Opens the congealed fist of the past.
Beautiful and very young are Philo-Sophia
And poetry, her ally in the service of the good.
As late as yesterday Nature celebrated their birth,
The news was brought to the mountains by a unicorn and an echo.
Their friendship will be glorious, their time has no limit.
Their enemies have delivered themselves to destruction.

Berkeley, 1968

Czelsaw Milosz


Thursday, January 19, 2017

Like Shining From Shook Foil

We've had a lot of rain here in Los Angeles the last month or so, and everything is greener than it's been in over five years. The sun glints off of green. I almost fell down into this patch of grass when I was out walking our dog this afternoon. I imagined myself face down and buried, lush. Lush. That's one of my favorite words. There's something sexy about it, about lushness. Something that gives me a frisson.

Love never dies. It just goes underground, a boy I loved a long time ago told me.

Grass. Green. Lush. Frisson

God's Grandeur

The world is charged with the grandeur of God. 
    It will flame out, like shining from shook foil; 
    It gathers to a greatness, like the ooze of oil 
Crushed. Why do men then now not reck his rod? 
Generations have trod, have trod, have trod; 
    And all is seared with trade; bleared, smeared with toil; 
    And wears man's smudge and shares man's smell: the soil 
Is bare now, nor can foot feel, being shod. 

And for all this, nature is never spent; 
    There lives the dearest freshness deep down things; 
And though the last lights off the black West went 
    Oh, morning, at the brown brink eastward, springs — 
Because the Holy Ghost over the bent 
    World broods with warm breast and with ah! bright wings.

Gerard Manley Hopkins (1844-1889)

Wednesday, January 18, 2017

Guns and Grizzly Bears and Jesus, Oh My!

Bear, looking into a Connecticut school classroom


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.


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?


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)
Michael Bennet D, CO
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)
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, January 14, 2017

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 115th 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. 

Friday, January 13, 2017

Fleeing to Poetry and ...

This weekend I'm determined to not be swept away by all the terrible stuff going down in our country. I'm fleeing, actually, to poetry and other ecstatic things.

I'm listening to the first of this intriguing series on the Poetry Foundation website called A Change of World.

I'm reading Emma Cline's novel The Girls. It's a bit creepy, but to be honest, I haven't been able to stick with a novel in months.

I'm also into this poem:

My Life had stood - a Loaded Gun - 
In Corners - till a Day 
The Owner passed - identified -
And carried Me away -

And now We roam in Sovreign Woods -
And now We hunt the Doe -
And every time I speak for Him
The Mountains straight reply -

And do I smile, such cordial light
Opon the Valley glow -
It is as a Vesuvian face
Had let it’s pleasure through -

And when at Night - Our good Day done -
I guard My Master’s Head -
’Tis better than the Eider Duck’s
Deep Pillow - to have shared -

To foe of His - I’m deadly foe -
None stir the second time -
On whom I lay a Yellow Eye -
Or an emphatic Thumb -

Though I than He - may longer live
He longer must - than I -
For I have but the power to kill,
Without - the power to die -

Emily Dickinson

and listening to this poem by Billy Collins which, whether you look at it as a seduction of Emily's mind or body, is terribly sexy and just sets a good tone or tune or --- (as Emily would do)

Readers, what are ya'll doing this weekend?

Thursday, January 12, 2017


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.

Wednesday, January 11, 2017

Cannabis Revealed

Dr. Bonni is Sophie's doctor, my cannabis mentor, my advisor and my friend. Her long-awaited book, Cannabis Revealed was recently published and is available for purchase on Amazon as well as CreateSpace.The book is expensive, but it's essential reading, and I encourage any of you who have an interest in cannabis as medicine or who are using cannabis as medicine to add it to your library. First of all, this is a serious book that is thoroughly researched. It is as much directed toward professionals as it is toward laypersons, but the writing is clear and informative.

Given the number of emails I receive a week from strangers looking for more information or for advice on where to start, I am just thrilled to now be able to recommend Dr. Bonni's book. Cannabis Revealed provides a clear history of the plant, an in-depth discussion of the endocannabinoid system, the safety profile of cannabis and medical risks of cannabis and then an exhaustive and thorough discussion of how to use cannabis medicine, including dosing. The book also discusses how cannabis can be used to treat specific medical symptoms and diseases, providing interesting stories of real patients that Dr. Bonni treats, including our Sophie! You will be informed and inspired by this book -- the next best thing to actually having Dr. Bonni as your doctor.

Sunday, January 8, 2017

Lazarian Mermaid

this photo was not staged

You know how it goes. No matter how hard I try, I can't shake the southern Italian superstitious woman in me, so I'm going out on a limb,  and stepping out to take a risk, plus throwing in all my cards, and working every cliche in the book to say that Sophie woke up this morning like some kind of Ripette Van Winkle. She was lying in bed exactly as pictured above, looking straight up at me and humming. I should preface this by saying that, up to this morning, she has been just this shy of catatonic. That's not hyperbole. I've been in when Sophie's not well, Mama's not well mode for a few weeks, a familiar condition, off and on, that I've experienced for Sophie's whole life despite all the cultural admonitions to not tie one's identity to one's children. I threw out most of that stuff along with the book What to Expect The First Year. That book literally went tumbling down the garbage chute from the fourth floor of the walk-up where we lived the first hellish year of Sophie's life. The admonition to not allow yourself to be subsumed by your child, along with put on your own oxygen mask before putting on your child's and attend to your marriage before your children are perhaps wise and fitting, but hell if I haven't failed at both over and over and over.

Any hoo.

I feel like a new woman this morning because Sophie actually woke up making her customary sounds (she's been primarily moaning or been silent for the last couple of weeks) and looked right at me when I went in to her this morning. She was also able to WALK into the kitchen and ate her breakfast easily. She did not have a big seizure or five big seizures. She was positively cheerful.

I'm going to shift the southern Italian peasant mentality of jinxes with an attention to Gratitude for the Present. This means that I am perfectly aware that this good morning could turn on a dime (another awesome cliche), Sophie could sink back into catatonia and I to the Overwhelmed With Grief and Anger But Still Putting On a Zen Face Woman. Right now, though, she's good and I'm good. The people of this shitshow do nothing better than living in the moment.

Reader, I imagine you are wondering why Sophie has had this turnaround? I have no real concrete idea, but I am going with the fact that she was OVER-MEDICATED. Here's the thing. Sophie came home from the hospital in late October on three times as much benzo as when she'd gone in. This was to "compensate" for the ripping off of the Vimpat that was giving her hives (although the docs said it wasn't, yet still ripped it off so go figure). Increasing the Onfi was something I agreed to because there are some interesting studies about the combination of Onfi and CBD. CBD can elevate Onfi levels and perhaps the increased Onfi is what helps to control the seizures? What I'm thinking is that Sophie's Onfi levels were periodically sky-high and causing the horrendous side effects she was experiencing (ataxia, difficulty swallowing, lethargy, CNS depression, excessive drooling, inability to walk). At the same time, since she's been on the drug for the last nine years, at one level or another, she is habituated to it and therefore sees very little seizure control. Basically, being on a benzo is a clusterfuck of enormous proportions. I was texting a fellow seizure mother this morning about it:

What a fucking shitshow and goddamn clusterfuck, is what I said. I'm not going to apologize for the foul language because it's entirely appropriate. I also told her that while I was going to work on weaning more of the benzo, I wouldn't wean myself from cursing about it.

In fact, I said, I'm titrating up on the cursing.

I'm going to have to figure out what the perfect sweet spot of benzo and CBD is, and that'll take some time. But hey! I have all the time in the world if I put that oxygen mask on first, right, and take care of myself (as this Australian article emphasizes).


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