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).

Friday, January 6, 2017

Learning Not to Swear (Do I Really Sound Like This?)

Hey ya'll! This really cool guy, Ted Lyde, asked me to come and have a conversation with him. This morning we talked for over an hour about all sorts of things.

You can listen to it at this link.

Wednesday, January 4, 2017

This Is It

It's been a week, dear people, since I've updated the old blog. Since then, I've seen tens of thousands of migratory monarch butterflies clustered in a eucalyptus grove in Pismo Beach. I hung over a fence overlooking a narrow beach and the gleaming Pacific, watched fighting male elephant seals, mating elephant seals and brand-spanking new baby elephant seals near Cambria. I stood and watched with tears in my eyes as the sun sank below the horizon and threw the most incredible blues and pinks and oranges into the California sky. You should come out here and witness a California winter sunset. Trust me. I'll post pictures of the mini-getaway at some point, but you can also follow me on Instagram or even Facebook, if you don't already. I post a lot of photos there.

Here it is 2017, and I neglected to wish you Happy New Year's Day.

Happy New Year's Day!

I wanted to write but felt reluctant to share those glories without also sharing what seems to be an ongoing thing with Sophie. I keep hoping for things to get better, but they are not. I'm not sure what's going on. Sophie is not sick. She is not having more seizures than usual. She is just generally drained of vitality. I honestly don't know what to do and it's been my experience that when I don't know what to do, it's best to wait with an open heart and mind for direction. This does not mean that I am avoiding wise counsel -- that of doctors and otherwise -- but it does mean that counsel can come from unexpected places and that I have to get out of my own way to receive it. Does that make sense?

It's a weird thing to wonder if this is it. If my anger were a crow it would be circling round the neighborhood making a ruckus with its kind. Looking for trouble. It's going to piss me off if I have to actually watch Sophie decline. A murder of crows.

I'm tired of this. It.

Dr. Jin came to the house yesterday morning to treat Sophie. Dr. Jin is our Chinese doctor who we've consulted since I was pregnant with Oliver, sixteen years ago. I haven't talked to her in a year or so, and her name came into my mind when I was meditating one morning. She made a house call. She took off her boots outside of Sophie's room, tiptoed in and sat on the edge of her bed. She spoke softly to Sophie and to me, examined her tongue and felt her pulse. She treated her with needles and discussed some tonic herbs that we might try. She insisted that Sophie will get better and that she will help to bring her back into balance. I believe her. She reminds me without saying anything in particular that all I need to do is take care of Sophie. She reminds me of the honor it is to take care of Sophie, to take care of a fellow human being.

I am struck by the great disparity between the western medical world as I specifically know and perceive it and the healing that Dr. Jin brought to the house. I have a $150,000 EOB lying on my desk from the last time that I brought Sophie to the hospital to be treated. Most of that absurd amount will be paid for by private insurance and secondary Medi-Cal. We will not be bankrupted by that absurd amount of money, the services rendered arbitrarily priced by the faceless. As I type these words, the politicians of the Disunited States are debating the repeal of the Affordable Care Act which, if not exactly perfect, brought great peace of mind to our household at least in regard to finances. Healthcare should be affordable and accessible to all human beings in a civilized, wealthy nation. I believe it's a right. It's not, though. It's not even about healing, to tell you the truth. It's a business, another commodity for the rapacious capitalists to pick apart. I'm not sure the capitalists realize that the effect is deeply psychological. I'm sure they don't care.

I'm tired of this. It.

My son Henry got a tattoo yesterday. He's been bugging me about it for months. I told him that at 18 years, he's too young, that he might regret what he puts on his skin. In October he came to visit Sophie when she was in the hospital, hooked up to an EEG. He's the silent type. He peered at the video monitor and said, That's what I want for a tattoo.  We took a still photo of the screen, as angry as it looked. He didn't relent, and I finally caved. Yesterday, we drove to Flying Panther Tattoo in San Diego where I got my mermaid a year ago. Allison is a goddess mother/healer whom I met in the epilepsy/cannabis world. Her husband Rob is the artist, and he tattooed Sophie's brain waves onto her brother Henry's arm. #radicalspecialneedssiblinglove.

I am still reeling from it.


THIS is it.

Wednesday, December 28, 2016

Favorite Passages in Books I've Read: Part 5,678,329

He was alone. He was unheeded, happy and near to the wild heart of life. He was alone and young and willful and wildhearted, alone amid a waste of wild air and brackish waters and the sea-harvest of shells and tangle and veiled grey sunlight and gayclad lightclad figures of children and girls and voices childish and girlish in the air.

A girl stood before him in midstream, alone and still, gazing out to sea. She seemed like one whom magic had changed into the likeness of a strange and beautiful seabird. Her long slender bare legs were delicate as a crane's and pure save where an emerald trail of seaweed had fashioned itself as a sign upon the flesh. Her thighs, fuller and soft-hued as ivory, were bared almost to the hips, where the white fringes of her drawers were like feathering of soft white down. Her slate-blue skirts were kilted boldly about her waist and dovetailed behind her. Her bosom was as a bird's, soft and slight, slight and soft as the breast of some dark-plumaged dove. But her long fair hair was girlish: and girlish, and touched with the wonder of mortal beauty, her face.

She was alone and still, gazing out to sea; and when she felt his presence and the worship of his eyes her eyes turned to him in quiet sufferance of his gaze, without shame or wantonness. Long, long she suffered his gaze, without shame or wantonness. Long, long she suffered his gaze and then quietly withdrew her eyes from his and bent them towards the stream, gently stirring the water with her foot hither and thither. The first faint noise of gently moving water broke the silence, low and faint and whispering, faint as the bells of sleep; hither and thither, hither and thither; and faint flame trembled on her cheek.

"Heavenly God!" cried Stephen's soul, in an outburst of profane joy.

James Joyce, A Portrait of the Artist as a Young Man

Monday, December 26, 2016

The Pursuit and Practice of Equanimity

Your daughter, no stranger to bouts of weirdness that she ultimately recovers from, is acting very weird. She is not having any more seizures, per se, than usual, but she is very weak and doesn't want to walk and you held her in your arms exactly like you would an infant today and fed her a sippee cup of juice, sip by sip. She has no fever. She has no cold. You have run through the possible things wrong, and these include viruses, brain tumors, autoimmune diseases, broken necks or backs, severe pain, and, of course, Just Plain Old Fucked Up Epilepsy Shit. You said a few prayers before remembering that you actually don't believe in prayer, other than as a form of meditation and you do believe in meditation because it has, quite literally, saved you from insanity during the other bouts of weirdness your daughter has had over the last two decades, unlike prayer which has always had a desperate quality to it when you do it and a treacly, insincere, I don't know what else to do for you except pray sort of quality when others do it for you (with some notable exceptions from some truly holy people you know). Since the last time your daughter had a significant bout of weirdness (October is the cruelest month, contrary to the poet's dictum), and you landed up taking her to the hospital where, basically, nothing happened or was learned by the Powers That Be* over the six days you were in the hospital with your daughter and then you were sent an Explanation of Benefits by the Supreme Powers That Be** that amounted to $140,000 To Find Out Absolutely Nothing But That Your Daughter Has A Hospital-Acquired Urinary Tract Infection And Is Indeed Suffering the Toxic Effects of Vimpat Confirming The Mother's Tiny Little Mother Mind,™ you make the decision when you're not praying/meditating that you will not bring your daughter back to the hospital. You want everyone reading this who is not a doctor to not look on this as medical advice, but everyone reading this who is not a doctor should know that your lack of sense of urgency co-exists with a supreme panic and is the result of more than twenty years of doing this shit and meditating. Hence, equanimity.

Even the title of this post is a nod to equanimity as you just can't, no matter how hard you try, pursue it.

* The Neurology Community
** The Health Insurance Industry and Medical Industrial Complex That Has Now, Apparently, Taken Full Control Of the Disunited States or Drumpfland.

Saturday, December 24, 2016

The Enigma of Glass

by Billy Collins
The first thing I heard this morning
was a rapid flapping sound, soft, insistent—
wings against glass as it turned out
downstairs when I saw the small bird
rioting in the frame of a high window,
trying to hurl itself through
the enigma of glass into the spacious light.
Then a noise in the throat of the cat
who was hunkered on the rug
told me how the bird had gotten inside,
carried in the cold night
through the flap of a basement door,
and later released from the soft grip of teeth.
On a chair, I trapped its pulsations
in a shirt and got it to the door,
so weightless it seemed
to have vanished into the nest of cloth.
But outside, when I uncupped my hands,
it burst into its element,
dipping over the dormant garden
in a spasm of wingbeats
then disappeared over a row of tall hemlocks.
For the rest of the day,
I could feel its wild thrumming
against my palms as I wondered about
the hours it must have spent
pent in the shadows of that room,
hidden in the spiky branches
of our decorated tree, breathing there
among the metallic angels, ceramic apples, stars of yarn,
its eyes open, like mine as I lie in bed tonight
picturing this rare, lucky sparrow
tucked into a holly bush now,
a light snow tumbling through the windless dark.

Merry Christmas Eve! 

And thank you, Leslie, for this poem!

Friday, December 23, 2016

Ghost Songs

"Tracy, wake up!" I whisper across the space between our beds.
I am ten and she is eight.
It's the middle of the night and I've had a bad dream. I have to go to the bathroom but I'm afraid to go alone.
She sits up without protest and gets out of bed, then walks shoulder to shoulder with me in the dark hall, holding my hand. In the bathroom I switch on the light, and covering her eyes with her hands, she sits on the edge of the tub and waits for me.
 from Regina McBride's memoir Ghost Songs

The above passage comes at the end of the memoir, and like much of the rest of the memoir, it moved me to tears with its simplicity and sweetness and fierce love.

More than twenty years ago, well before Sophie and My Next Life, I took a writing workshop at the New York City YWCA on the Upper West Side. The teacher was Regina McBride, and what I remember from the class was how inspiring she was -- how we were each encouraged to tap into our deepest selves to create story. It seems almost dreamlike now because the writing I did for Regina was actually the last writing I would do for more than ten years. I was pregnant with Sophie then, and three months after giving birth -- well -- you know the rest of the story.

When I randomly moved into an apartment building across the street from her family a couple of years later, we became friends and visited one another often. She was working on a novel then, and I remember being envious of her discipline, of how she appeared to make space for her art even under the duress of new motherhood.  When I left New York in 1997, we kept in touch. I read, avidly, her novels -- The Nature of Water and Air, The Marriage Bed, The Land of Women -- and her exquisite book of poetry, Yarrow Field. Her writing is luminous -- like she is as a person.

Regina's Ghost Songs: A Memoir was published this fall, and I've taken weeks and weeks to read it. I knew right away when I dipped into it that it would be something to savor, to take in over time in sips. Regina lost both parents to suicide within months of one another when she was seventeen years old. Raised as an Irish Catholic and deeply affected by the mystical elements of that faith, Regina weaves together childhood memories, sibling love, the immediate aftermath of the suicides and her trip to Ireland as a young adult to tell a story of sadness but also of great love. She's written a story in fragments, here, her pain not so much disguised as elusive, like the ghosts that she encounters in the aftermath of the shattering events. Her encounters with what you might call the miraculous are written without a trace of awkwardness or cliche. Her prose, both spare and magical, conveys a wisdom not just hard-won and brave but truly numinous.

Thank you, Regina, for the gifts of your writing, for being a touchstone for me of my other life.

Buy Ghost Songs at your independent bookstore, at Tin House or on Amazon.

And happy Christmas Eve Eve!


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