It's Not Funny

Huntington Beach, CA
Yesterday

In fact, it comes to this: nobody is capable of really thinking about anyone, even in the worst calamity. For really to think about someone means thinking about that person every minute of the day, without letting one’s thoughts be diverted by anything- by meals, by a fly that settles on one’s cheek, by household duties, or by a sudden itch somewhere. But there are always flies and itches. That’s why life is difficult to live.”

Albert Camus, The Plague 

It's a privilege to be able to stay inside, quarantined, with enough food and supplies for weeks, a virtual job, a pretty backyard and neighborhood in which to walk and a pile of masks that an industrious friend has given me. Not once have I thought my rights and freedom have been infringed upon, and this, too, is a privilege. My heart goes out toward those who are truly suffering from the virus, from economic hardship, from uncertainty and fear about the future. Most of all, though, it's a privilege to do something for others, to have the capacity to quell panic and anxiety in myself and in others, to know that what I am doing is actually something. It's a privilege to meditate, to laugh at silly cartoons, to bake a chocolate cake for a beloved friend's birthday and to bring it to her doorstep, to stand outside her house with other beloveds, at a "safe" distance from one another and to sing her birth. It's a privilege to coach my son through a new dinner recipe that he's trying by himself, thousands of miles away, to see his beautiful face. It's a privilege to follow the counsel of those wiser and more knowledgeable and experienced than myself, and it's a privilege to be openly derisive and contemptuous toward the leader of this country and the idiots that support him.

I had to write all those things to quell my anger and make sense of my contempt. I would like to be positive or not too angry or even optimistic, but I am not. I am angry and feel contempt toward the zeitgeist of this country and the insatiable greed of the powerful. The inadequacies and injustices that have always been present laid bare and yet, and yet. Still. Always the transactional. I am not optimistic and don't believe optimism is a virtue which means I am not a good American. I don't know what I am, actually, but it's not about me, and that, too, is a privilege. I wish for a sea change, or as the great Seamus Heaney said... On the far side of revenge. Believe that further shore. Is reachable from here. Believe in miracles. And cures and healing wells.

The evil in the world comes almost always from ignorance, and goodwill can cause as much damage as ill-will if it is not enlightened. People are more often good than bad, though in fact that is not the question. But they are more or less ignorant and this is what one calls vice or virtue, the most appalling vice being the ignorance that thinks it knows everything and which consequently authorizes itself to kill. The murderer's soul is blind, and there is no true goodness or fine love without the greatest possible degree of clear-sightedness. 

Albert Camus, The Plague 

I appreciate the sentiments expressed here, written by a New Yorker and posted on Facebook:

Dear protestors, 

Y’all realize that people in NYC have been holed up in tiny ass apartments the size of your car garage for twice as long as you guys have? They don’t have any beaches and most of them don’t know what a “porch” is. Restaurants being shut down means most of them have to cook in kitchens that are built for instant ramen at best. Almost nobody has a car so they can’t hoard toilet paper like you fuckers or escape to a nearby town to take a walk in a park by a lake. 

Yet they’re all making silly videos on FB, shouting thanks to healthcare workers at 7pm every day while you motherfuckers block the paths to hospitals, and they’re coming together like a community to defeat this thing despite going through hell. You know why? 

Cuz you guys are a bunch of fucking pussies. You snowflake ass Motherfucking pieces of shit need to whine about your rights getting trampled on cuz the government is telling you what to do with your bodies?! Seriously. Fucking puke in my mouth. And all those guns and ammo vests n shit? Who the fuck are you gonna shoot? The virus?! Doctors?! Put the fucking guns away, you psychopathic, insecure, ass hats. Go the fuck inside and stay there and stop fucking protesting. 

Bye.

It's really, really not funny.

We Can Do Hard Things, Thursday 3/19/20

Hey, Reader, how's it going today? I confess to feeling an uptick of rage. It started about an hour ago when I heard about someone I know testing positive for the virus. (How are we going to write this word? Virus? Corona Covid? Covid-19? Should we be clever or ironic or matter-of-fact and terse? Maybe the uptick started last night when I went to bed and read a few emails from our old pediatrician's office. He's a private doctor who treats a lot of very wealthy families and celebrities. I "picked" him over 23 years ago because he was willing to work with my babies' vaccination schedule given Sophie's seizure disorder and the suspicious way it started. That's another story and we sure as hell aren't going into that now. I'm telling you this so you know why I took all three of my children, through their childhood, to a ridiculously expensive pediatrician. Don't get me wrong. I love the man and his staff.  Fortunately, we made very few visits to the pediatrician, but I can honestly say that in nearly every single instance,  I spotted a familiar golden face.



You know what? Forget this story. It's about self-tests for The Virus, how they were available for $250. How as soon as the newsletter went out, first come, first serve, another newsletter arrived and all the tests were gone, accounted for, paid for, etc., as if those tests were toilet paper, frantically purchased and hoarded.

Capitalistic concierge medicine.

My uptick of rage is related to my son announcing that several Lakers have The Virus or have tested positive, and I've been reading accounts from FRIENDS that they haven't been able to get a test despite having symptoms of  The Virus. So, all I'm going to say about this is the same thing I've been harping (that's a fine word, isn't it?) about for all the years you've been reading this shit that I write and that is that we can not call ourselves a great country when the country has such a huge disparity between those that are obscenely rich and the rest of us. Where celebrities and pro athletes and rich people have access to healthcare while regular folks do not.

Let's not even get into the disabled issue.

Read this.

When all of this is over, I think I don't want to hear another word about a celebrity or a pro athlete or really anything related to vast sums of money or adulation of those who have vast sums of money.

Up
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I did have a good morning teaching my dear students. One made a video for his final project related to the great Flannery O'Connor's short story "A Good Man is Hard to Find." I practically fell on the floor in a state of shock and awe when I watched it. Honestly. This 14-year old kid got that short story and created something original, weird and incredible. I wish I could share it with you and will let you know if he makes it public on Vimeo.

I also spoke with my therapist in a telephone session, and that helped me a lot. We compared notes on coping, talked at length about how we can do hard things, how helping others helps ourselves, how caregiving is a form of meditation and damn if I'm not grateful for the people out there working so hard to ease the suffering of others.

Thank you doctors and nurses and all those who help in the healthcare world.

Here's a poem by Lynn Unger:

PANDEMIC

What if you thought of it
as the Jews consider the Sabbath—
the most sacred of times?
Cease from travel.
Cease from buying and selling.
Give up, just for now,
on trying to make the world
different than it is.
Sing. Pray. Touch only those
to whom you commit your life.
Center down.

And when your body has become still,
reach out with your heart.
Know that we are connected
in ways that are terrifying and beautiful.
(You could hardly deny it now.)
Know that our lives
are in one another’s hands.
(Surely, that has come clear.)
Do not reach out your hands.
Reach out your heart.
Reach out your words.
Reach out all the tendrils
of compassion that move, invisibly,
where we cannot touch.

Promise this world your love—
for better or for worse,
in sickness and in health,
so long as we all shall live.

Pick Your Poison

This might be a record for my not blogging -- more than a week since I've bloviated about the various goings-on in my life and not for lack of them. Perhaps I don't feel like talking anymore about how Sophie has been struggling, how the CBD and the benzo and the sleep aid don't seem to be doing the trick, how I don't know really know what the trick is, anyway, but what I do know is that how many seizures is a relative thing, the counting of them, that is. A relative thing. Not something related to something else but rather relative in comparison. I scroll through my social media and between the kids dying (yes, dying) and the regular shit that is Terrible America, Sophie's three to five seizures (big ones) a day (yes, everyday) don't seem too bad. They're everyday or every day. If someone (Sophie) has anywhere from three to five seizures (big ones) a day, is anything working at all? Anyway? I have a friend who keeps meticulous counts of her son's seizures and is able to track, exactly, what affects them. He had seven in February, she might note, and after we increased his CBDa, only three in March. She agonizes over three, I think three! (Imagine three!) And I continue to draw up the syringes of benzo, syringes of CBD oil and CBDa oil (plunged into her mouth) capsules of sleep aid that I toss in there (her mouth) and the cup, quick, to her lips.

Swallow. 

So. The Nice Neurologist suggested we try either Depakote or Lamictal. They're very good drugs, he said. Has she been on them? He asked. I said, Oh, yes. She's been on both. The Depakote in 1995, when she was six months old, diagnosed for three months, drug number three. And it didn't work, so we took it right off and tried the infantile ketogenic diet next (plucked smack dab out of People Magazine, check it out), and then phenobarbitol and then vigabatrin, and should I go on? The Nice Neurologist said, Oh, and Lamictal? I said, Yes. Lamictal for about seven years. And it never worked.

Reader, I know you wonder why? and your why is why would you give a drug to your daughter for seven years if it didn't work? And I honestly don't have a sensible reason to give you, other than The Neurologist At The Time not having any other options and perhaps Laziness and perhaps because of The Difficulty of Weaning or perhaps The Odd Chance (A Neurologist would have suggested this one) that the drug (Lamictal) was keeping her to only two hundred seizures a day instead of five hundred seizures because -- it's coming -- it's relative.

Let's make a long story short. Let's make a deal. I picked Depakote. The reasoning: it's been nearly 25 years (!). We gave it to Sophie last Wednesday night and again on Thursday morning, Thursday night and Friday morning. She slept all day on Thursday, woke briefly for breakfast on Friday morning and slept all day Friday. She could not be roused for the entire day on Friday and had an alarming amount of congestion above her chest and below her mouth (in her throat) which was probably increased secretions. She could not be roused. The Nice Neurologist relayed through his nurse that we should stop the Depakote and talk tomorrow (Saturday), so while I generally worry about Sophie dying at least once a day, I worried all day, every moment, actually, even though relatively speaking, I am not scared of death.

Sophie had no seizures during this period, but, to be fair, she was practically comatose. Being seizure-free, I have found, involves a trade-off, and this is where the relative part comes in.

I and the Nice Neurologist had several short (not sweet) conversations over the next two days regarding what to do. What to do about Sophie? I think she'll need a smaller dose, he suggested, and I pointed out that the pills he'd prescribed have no score so they can't be cut in half. The liquid form! he said, and I'll call it in! I was walking down the street with Sophie in her wheelchair. She woke from her comatose state on Sunday, bright-eyed but batty, agitated, the drug clearing her system. I imagined a brain cleared of chaos and cobwebs but unsure how to proceed without either. I'm excited! The Nice Neurologist said. I said, Excited? and he said, It doesn't take much to excite me! and I thought, excitement is relative.

I picked a poison. Now let's see what happens.

Tuesday Night Grumble and Gratitude

I was going to just grumble grumble grumble. Grumble about that silly movie Green Room winning the Oscar for Best Picture (see my very early dis of it here), grumble about the Bird Photographer leaving town for a week, grumble about all the dumb shit and people we have to put up with who are supposed to be running the country, grumble about always feeling like I need to lose some pounds but knowing that I'll probably never lose some pounds, grumble about doing my taxes and figuring out how to pay for not one but two children in college, grumble about still not having a good doctor to take Sophie to for general issues, grumble about the state of my house, how it's overflowing with books unread and the stack of papers that make up my manuscript that will, perhaps never get written. Grumble, grumble, grumble. The Catholic Church, Paul Manafort, The Methodist Church, sex trafficking, the mediocrity of culture, obscenely rich people -- the grumbles are rolling.

You wanted to hear that, right?

Here's the thing. Despite that silly movie winning, there were a host of truly beautiful, mind-blowing films that should have won it, and I'm grateful for having seen those movies and beyond grateful that there are artists in the world with vision and grace and bravery doing their work. Despite the Bird Photographer leaving me to go shoot birds (with a camera not a gun) in another state, I'm grateful to be partnered with such an extraordinarily talented and sweet man who is doing what he loves best, observing beauty, making beauty. Despite the state of Terrible America, I am grateful for investigative reporters that continue doing their work informing us, digging deep, and I'm grateful to have a brain that is willing to dig deep and wrap itself round difficult things and parse them out. Despite needing and wanting to lose weight, to look like I did twenty-five years ago, I'm grateful to have this strong body that on its best days can lift a 75 pound woman, can walk up a hill to an overlook and gaze out on a shining city with snow-capped mountains and blue skies behind and above it. This body can love, and I'm grateful for that, too. Despite the horror of going through my medical expenses and all the other paperwork I need to do, including just facing the numbers, the dismal numbers, I'm grateful that I finally have a great job that I love. Despite the existential threat to my sanity that thinking about BOTH sons off and away from me in the fall, I am so grateful that they are such fantastic beings with their whole lives ahead of them. Plus, they're damn cute. Despite the tedium of finding a doctor for Sophie and the grappling with CTSS (chronic traumatic stress syndrome), I am grateful that she is doing well on her current regimen of CBD and IVIG, and that she has such a terrific aide at her adult day program. In fact, I think you need to see a recent photo of  the girl:

 Here she is contemplating Art.

And here she is contemplating the Bird Photographer:

Despite the cluttered house, the books to be read and the books to write, I am grateful to be surrounded by all of it, all of it, to have so much beauty in my life, so much love, so much for which to be grateful.

The end.

A Show About Humanity with Two Guys In Charge

Have ya'll been listening to Jason Lehmbeck's and my podcast? I sure hope you are, but if you're not, you should start today because two of the finest young men on the planet had a discussion with us about what it's like being a sibling and growing up in a family with a child who is medically complex or who has special needs. Confession: it's getting more and more difficult for me to figure out how to write a descriptor -- how to describe my daughter in language that is clear and factual and that doesn't further stigmatize her or others like her. Special needs, medically complex, disabled, differently abled, people first, etc. etc. ad nauseum in these -- what should I can them? -- fraught times.

Anyway, my son Henry and his roommate Toby spoke on Who Lives Like This?! about their lives growing up in families with one or more children with disabilities. They also talked about their feelings, their friendship, their futures and their hopes. They shared their wisdom and experience. I think they will open your minds and break open your hearts.

Here's the link to the show. Please do us a favor and share it far and wide. We hope to continue to build a community, and this show is not just for those affected by disability or medical issues or caregiving. Dare I say it's a show about humanity?

Who Lives Like This?!

Working Stiff

Street graffiti, Los Angeles, 2019

I finally got a job that I'm excited about, and it begins next week. I've been applying for various positions from a site called Indeed for the last year, and I was beginning to believe that it might be a front for some kind of data gathering Russian bot/Facebook thingamajig because literally nothing came out of it. I'm perfectly aware that I have my limitations at the age of 55, and I didn't bother applying to the kind of grunt work that offered a salary that would quickly be swallowed up by Saint Mirtha, but damn, it was demoralizing and all death of a salesman around here until Christmas week when I was hired to teach English literature and writing part time in a small private school for girls. The school is very small and very religious, with strict dress codes for both the students and the teachers. That's all I'll say about that. I am very excited and a tiny bit nervous but extremely grateful to have found something that perfectly fits the erratic schedule and overwhelming duties of my other job as CEO of Sophie, Inc. I will be jumping right in on Monday with the girls already reading Frankenstein. 

I have love in me the likes of which you can scarcely imagine and rage the likes of which you would not believe. If I cannot satisfy the one, I will indulge the other. 

from Mary Shelley's Frankenstein








The universe is abundant.

Taking Care

I'm lying on my bed, next to Carl, who is going through his gorgeous photos -- birds flying everywhere, diving into water with perfect droplets making ripples, a whale breached in a sea of blue and my mind is lazy drifting except for one tiny fight there off in a corner, the corner of care. Care. Taking care. Sophie is getting her infusions of immunoglobulin this morning, her last treatment of the year and I've forgotten to tell Mirtha that she doesn't need to come until later because Nurse Hyo is here but they're all here and so this fight this tiny little fight in my tiny little mother mind™ commences, even as I lie in languor on my bed or because I lie in languor on my bed with birds and whales and nodding flowers. Everyone is always living their best life, I've said bitterly a few times in the last few weeks. And this is mine. The fight is small but it is mighty in that corner of my mind. Letting others take care of Sophie without feeling guilty, perhaps envious, even, of their facility. I stood next to Nurse Hyo and held Sophie's arm down, so thin that it really takes only two of my own fingers to span it, the vein so tiny yet so resistant. Two sticks and the rising bile, I turn my head away and curse the nurse in my mind, curse all of them or Them, with emphasis. Is that the smallest needle? I manage to get out through my teeth, the words float there between us, a rhetorical question that I instantly regret. The nurse is unperturbed, her face placid,  or at least I imagine her to be. She is taking care. The needle slides pokes yet the vein slips, you can see it under the skin yet the blood flows and she's in (in the body! the body of my daughter!) and deftly tapes over it, connects the bag of antibodies to it, this entry into the body, through the skin and impossible vein, the fragile body of my daughter. It's a strange confluence of the barbaric and something nearly futuristic except that it's now. I'm only now imagining the nurse's own mind filled with something other  -- her own birds and whales, maybe, the lunch she'll have later, how these people are trials to get through. How I cannot get out from under the blanket of care of my nagging dislike of its constancy of how it looms, always. A tiny fight in the corner, over there, even as I kneel in gratitude over here at the care at the gifts this life has brought or that come with. 

Musing on the World, Unfolding

I detest the masculine point of view. I am bored by his heroism, virtue and honour. I think the best these men can do is not to talk about themselves any more.

Virginia Woolf
1931

For most of Sophie's life, my greatest fear was, of course, her death. The fear of death had the greatest of urgencies and propelled me in literally every single decision that I ever made concerning her. I don't know when that fear left me or when I became not so much accustomed to it, but rather looked upon it, the possibility of it, as just part of all of it. Part of living that is, part of fighting for someone's quality of life, that is. Death is just part of all of it. I can not know of Sophie's death until and if it happens, if ever, just as I could not know of Sophie's life until it happened. She grew inside of me, was a part of me and me her, yet still I did not know her life.

The word intimate. The word intimation.

Having some equanimity doesn't mean I am not consumed, some days, with fear and anxiety and such a strong sense of overwhelm that I hardly know how I am functioning.

But then it lifts.

I had never read the Woolf quote before today. She was, apparently, speaking of war in particular, but hell, it pertains to what's going on today as well.

Here's what I think (with full awareness of the irony in Woolf's admonition to not talk about themselves any more).

All of this cluster-fuckery (Kavanaugh, Trump, the Republican Judicial committee, KellyAnn Conway and the other women who support the authorities in power) is a painful part of a process -- an inexorable process that will lead to a better world, a world that we have not yet known, a patriarchy disintegrated and power not defined by sex. I think women are engaged in ways that the world has never seen -- engaged socially, sexually, politically, and personally.

I think men and women who do not get out of the way will be made irrelevant -- far more irrelevant than they imagine. It's exhausting and exhilarating. I think the unfolding is so stressful and induces so much anxiety because we are witness to it as it unfolds in real time. As humans we are perhaps incapable of grasping all of it, all of the suggestions of what will follow even as we are exhorted to notice and take in everything that technology throws at us.

I think we can only intimate what it might portend because we have never known a world with such intimations. 




#MeToo

In a Van Gogh Painting

Sunflower Farm, Half Moon Bay

One Day

One day after another —
Perfect
They all fit.

Robert Creeley
via Pome by Matthew Ogle

Poems for Difficult Times

It's rare that I'll respond to a marketing plea from a public relations firm with anything other than sarcasm, but I recently received a request to review Roger Housden's ten poems for difficult times, so given my love of poetry, I jumped at it, received a free copy and here we are.

In his Ten Poems series, Housden chooses ten poems and then discusses each one. I've got copies of several of his other volumes, but given how difficult all of our lives are right now, this volume has special significance. Housden says, "Poems like the ones in this book shake me awake. They pass on their attentiveness, their insight, their love of this broken world to me, the reader." He adds, "We ourselves can wake up to the world and to ourselves in a new way by reading poems such as these -- especially when we read them aloud, and shape the sounds on our lips and the rhythms on our breath -- making us more fully human." In an interview with the publicist, he stated that it was Trump's election that propelled him to add to his series, that his despondency over the election and a walk in the forest (he's British and uses beautiful language) inspired the title and then the collection.

I couldn't agree more with Housden and found his selections wonderful. Familiar with Maggie Smith, Ellen Bass, Marie Howe, William Stafford, W.S. Merwin, Jack Gilbert and Wendell Berry, I found something new to love in the poems he chose of theirs and was introduced to Jan Richardson, Nazim Hikmet and Conrad Aiken. Housden's commentary is great, as well, and includes interesting insights about the poetry and the writers.

In short, I highly recommend this slim volume. Right now, I can't bear to look at any more news of Terrible America, but I'm carrying the little book around today as I take care of a still-struggling Sophie.

Here's a poem by Ellen Bass that speaks to me:


THE THING IS

to love life, to love it even
when you have no stomach for it
and everything you've held dear
crumbles like burnt paper in your hands,
your throat filled with the silt of it.
When grief sits with you, its tropical heat
thickening the air, heavy as water
more fit for gills than lungs;
when grief weights you like your own flesh
only more of it, an obesity of grief,
you think, How can a body withstand this?
Then you hold life like a face,
no charming smile, no violet eyes,
and you say, yes, I will take you
I will love you, again.


LINKS:

www.RogerHousden.com

An interview with Mr. Housden: https://youtu.be/5zUrsTXN5Pw

ten poems for difficult times by Roger Housden, published by New World Library

White Sheets

Sophalette Silhouette
May 2018
Los Angeles

to Allison, Heather, Christy and Bonni

This morning I lay on my back in my bed barely woke, my son rummaging around the bathroom on his way to work out and then the sound of Sophie seizing from her room and his bark Sophie's having a seizure! even as he walks out the door (the quotidian) and my sigh and hobbled walk (I'm working out, still) down the hall at no great speed because I've done this before and again and again. That I was lying on my back thinking about seizures and Sophie and what to do next and how very tired and sick unto is irrelevant, redundant, mundane and tedious. I settled my girl and climbed back into bed with my thoughts, my incessant thoughts, what to do, how to do, a kind of solipsistic world except that it's not me my mind but, literally, Sophie, her mind. Or brain. Or not -- the solipsism, that is. Then the world broke through. I had conversations right then and there, as we do in the world's mind, that vast space that some call unconnected but we know better, conversations with a friend in Maine and a friend in Colorado, both of whom struggle with their sons' seizures, both of whom know everything there is to know about cannabis in addition to seizures, both of whom fiddle and adjust, grow and learn as they go, as we go. The world broke through the way it does (the universe is abundant) in the form of these women and another who spoke to me from Greece, and another from San Diego who was the last person I spoke with the night before and who figures in my dreams. In the moment of the morning, flat on my back in the bed, post-ictal, I willed myself toward signs, out of the pull of darkness and toward light and lightness, acknowledged in my mind the miracle of these connections, our wisdom, these women. I made my bed. I lie down in it. We lie on our backs in these beds, this bed, next to one another, I feel them there, white sheets, these women, and we are connected and everything is ok. It's going to be okay.

Is She Who

Who is she, really? What does she know? I say everything and mean nothing. I say nothing and mean everything.

So much is fathomless, even her eyes, yet she is entirely her self as I've known her for twenty-three years.

Shedding Tears

I've decided to be fully present during each seizure and shed tears, at least afterward. The word shed.  Dutch and Germanic, Old English root: to separate out, to scatter, to divide. I remember watching a scene in a movie -- maybe Zorba the Greek -- where a bunch of women are wailing in the streets about something or another. I can't find the scene, though, so I might have made it up or perhaps reached into my cellular wellspring where the Middle Eastern and southern Italian histrionics lie embedded. The word histrionic. The dictionary states that its origin is the 17th century, and I imagine some Germanic guy or Anglo-Saxon with the whitest of skin took the Latin root for drama and acting, twisted it into something unfavorable, applied it to women, in particular.

I have a friend whose adult son is schizophrenic. She's done things like cleaned his shit from the walls of his apartment. She and I recently sat in a car outside her house and discussed how we imagined ourselves screaming in the streets with other mothers, other women. Tearing at our hair and wailing, rending our garments.

How fitting to shed --  to empty oneself that way.

Watching a person twist and jerk and grimace over and over, in minutes and then years, helpless to do anything but watch and abide in the moment -- surely this calls for tears afterward as much as efficiency or quiet?

Are there enough tears?

There's nothing to be thankful for with seizures.

I don't believe in prayer and would as soon as stand on a pew and wail then beg.

There's gratitude, though, in tears.

I bought some daffodils the other day. The buds were tight, the stalks like paper. I stuck them in water and watched them unfold into yellow.

The Full Catastrophe

The Sheering Sun

There are those with whom I have nothing in common but the blood that runs in the veins. Cliche. The word blind doesn't mean what you think, if you're able and are you? Seeing nothing but light. Our shadow selves. Reading poetry this morning.


In the Beginning God
Said Light

Mary Szybist

and there was light.
Now God says, Give them a little theatrical lighting

and they're happy,
and we are. So many of us

dressing each morning, testing
endless combinations, becoming in our mirrors

more ourselves, imagining,
in an entrance, the ecstatic

weight of human eyes.
Now that the sun is sheering

toward us, what is left
but to let it close in

for our close-up? Let us really feel
how good it feels

to be still in it, making
every kind of self that can be

looked at. God, did you make us
to be your bright accomplices?

God, here are our shining spines.
Let there be no more dreams of being

more than a beginning.
Let it be

that to be is to be
backlit, and then to be only that light.

via poem-a-day

Tuesday Afternoon

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

A Short History of August*

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













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

The Boy is Finished with High School

I can hardly believe that my son Henry is finished with high school, graduated with honors and headed toward Gonzaga University in the fall. Good Lord. As they say, Where the hell did the time go? I am beyond proud of this young man and grateful for our relationship. He is charming and funny and joyful and intelligent, a tiny bit lazy which can also be interpreted as good-natured and has been the light of my life. And then there's his good looks. Good Lord.

I will miss him so much when he leaves us in late August, but I trust that our open and warm relationship will remain intact until he's an old man, and I'm a very old woman. That means I will always be right, of course, as well as wiser.

Here are some pictures from the weekend.

Henry and my mom at the Baccalaureate Mass

My dad, Henry and my mom at the Baccalaureate Mass

My dad and his mini-me

Mom, Me, Henry and Dad at the Baccalaureate Mass

Trivia: Do you know who that dashing young man is behind my father and Henry above? If you guess, I'll give you a prize. He's a classmate of Henry's, and it was quite thrilling to meet him and his family at the Baccalaureate Mass the night before graduation. During the "Peace Be With You" in the mass, I shook his hand. Hint: the arm attached to that hand pitches a 100 mph ball.

My friends Dorie and Johanna -- our three children went to preschool together and have remained friends through high school. It's been an honor and a privilege to watch them grow up, and damn -- I'm lucky in friendships.

The view from the bleachers

See Henry? We buy leis for our graduates -- I think it's the coolest tradition!

Bird's eye-view of Henry receiving his diploma from principal

The family (minus Sophie)

I love him a lot

Henry and his gorgeous girlfriend 

My dad, Henry and Uncle Tony (my father's twin brother)

I love this picture because they're not fighting

Me and my mom (we seem to have the same chin)

Post-graduation brunch

Cupcakes and peonies for our Taco Toast Graduate Party on Sunday

Saint Mirtha is also an incredible chef

It's a wrap.

I'm a Tightrope Walker and a Non-Stop Talker

The other day -- actually the same day that the AHCA (Ass Hole Care Act) bill passed through the House, I had the privilege of talking to Abi Wurdeman on her SpareMin podcast. Abi had read my blog and contacted me to do one of these short and casual podcasts for Mother's Day week. She is a writer and podcaster living in Los Angeles who hosts interviews on SpareMin that center around human rights, feminism and diversity representation in the media.

Also a comedy writer, Abi was incredibly tolerant of my chattiness that day. Good Lord. When I listened to the podcast, I realized that my intense anger over the AHCA bill manifested as near babbling over the issues that I care about most. OK. Not near babbling -- babbling.

In any case, it was a fun interview that you might want to listen to if you have a spare minute or fifteen or need a diversion from all the crap hitting the fan today. Abi's got some other ones on there that are great listening, too.


""

The Measure of Our Desperation

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

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

Here's a poem:

Girdle

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

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

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

Connie Wanek, from Rival Gardens

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

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

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

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

Anyhoo.*

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

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

#resist

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

This Side of the Grave

We've got to keep writing and making art.

I'm really trying to hold on to hope. Heaney's The Cure at Troy has sustained me for decades, and this morning I'm typing out the part I love right here, by memory:

Human beings suffer,
They torture one another,
They get hurt and get hard.
No poem or play or song
Can fully right a wrong
Inflicted and endured

The innocent in gaols
Beat on their bars together
A hunger-striker's father
Stands in the graveyard dumb.
The police widow in veils
Faints at the funeral home.

History says, Don't hope
On this side of the grave.
But then, once in a lifetime
The longed-for tidal wave
Of justice can rise up,
And hope and history rhyme.

So hope for a great sea-change
On the far side of revenge.
Believe that a further shore
Is reachable from here.
Believe in miracles
And cures and healing wells.

Call miracle self-healing:
The utter, self-revealing
Double-take of feeling.
If there's fire on the mountain
Or lightning and storm
And a god speaks from the sky

That means someone is hearing
The outcry and the birth-cry
Of new life at its term.
It means once in a lifetime
That justice can rise up
And hope and history rhyme.








I feel not a little despair.

Did you see the thin lips of the men who canvassed the crowd, pushed through ahead of him last night as he walked in and then, again, walked out?

Struck last night during the presidential address by a memory of working with women who had been abused by their husbands, by the ways abusers show recalcitrance, how the cycle continues. His dark imposition on the world. The two behind him. I cried during his convention speech and cried again during the inaugural one. Last night I watched the widow turn her face up to the sky as he droned on and the glamorous daughter looked on and all the people cried. No tears from me. I choked on bile. I thought about the great war machine that all presidents turn on, the tyranny of the ultimate sacrifice, of valuing soldiers' lives more than those they kill. Samsara, illusion, delusion. Maya, the illusion or appearance of the phenomenal world.

This morning I see that the attorney general will not be supporting those states who have legalized marijuana, that he will, indeed, be marshaling forces to come down hard. He's got federal law to enforce and federal law pre-empts state law. I'm going to persist in believing in miracles and cures and healing wells even as prisons continue to fill and children die and the sheep are driven over the cliff.

I'm going swimming today, may a further shore be reachable.