Mermaids in Summer

I'm plagued by the feeling that it's never enough -- what I do with Sophie. I'm talking about stimulation and recreational activities. In the absence of Communicamp or anything affordable near us, in these last weeks before school begins again, I am reminded of how pressing the need for young adults to be integrated into the community. I don't have any answers, and when I try to take action, I feel as if I'm in tar, my feet heavy. I do a disservice every single day to this beautiful young woman, and I can only acknowledge that, not judge myself too harshly and hope that I'll feel a bit more energy tomorrow.


A Tiny Clue

You could spend your entire life
eavesdropping on the mermaid
before you'd pick up the tiniest little clue
about where she was really from. One autumn day
    I happened upon
her and her child
while she was comforting it under her shawl.

'You are not the blue-green pup of the seal.
You are not the grey chick of the greater black-backed gull.
You are not the kit of the otter. Nor are you
the calf of the slender hornless cow.'

This was the lullaby she was singing
but she stopped short
immediately she realized
someone else was in the neighborhood.

I had the distinct sense she was embarrassed
I'd overheard her in the first place.
I also came away with the impression
the lullaby was, to put it mildly, redolent of the sea.

Nuala Ni Dhomhnaill
translated from Irish by Paul Muldoon
The Fifty Minute Mermaid

A Certain Mad Rectitude

Those are three of my friends without whom I don't know what I'd do in this life. That's putting it mildly.

Things are -- shall we say -- confusing. I am preoccupied. I don't have much to share and hate to be obtuse.

How about a clever, Kay Ryan poem or two?


Say Uncle

Every day
you say,
Just one
more try.
Then another
irrecoverable
day slips by.
You will
say ankle,
you will
say knuckle;
why won't
you why
won't you
say uncle?


Say It Straight

I have a mania for straight writing -- however
circuitous I may be in what I myself say.
-- Marianne Moore



What we could
and what we can say
stray as in a dream;
a certain mad rectitude
creeps in, by which
something simple as an apple
can never be determined
wholly edible.
The crisp act is deferred,
the object blurred by scruples.
The more we cherish clarity
in principle, the more it is
impossible. Will enamel
ever strike the fruit?
Will Eve grow wild and forgivable?
For it's unlovable
to talk too long with snakes,
whose reasons fork
the more the more
she hesitates.

Twitter Twitter Caregiver

Girl sleeping with mermaid

I had a thought that there should be a special Tweet area for caregivers to give voice to all the things that they wish they could say to someone but can't or observations about -- well -- everything.

All of the following have the right amount of letters for tweeting but will not be tweeted.


1.

My WheelchairCam was on continuously this afternoon at LACMA, recording stares. #dontstarepaparazzi


2.

Witnessing a hundred thousand seizures is not what breaks you. It's a faulty diaper and a pool of urine on the bedroom rug.


3.

The new CVS pharmacist asked me if I needed a consultation on the proper use of benzodiazepines.


4.

"We value you as a customer and are here to make sure you get the most value for your plan," says the letter from Assurant Insurance Company. #ismellbullshit



Caregivers, please feel free to reply with your own tweets in the comment section.

Saturday Poetry and Sophie

French Chocolates

If you have your health, you have everything
is something that's said to cheer you up
when you come home early and find your lover
arched over a stranger in a scarlet thong.

Or it could be you lose your job at Happy Nails
because you can't stop smudging the stars
on those ten teeny American flags.

I don't begrudge you your extravagant vitality.
May it blossom like a cherry tree. May the petals
of your cardiovascular excellence
and the accordion polka of your lungs
sweeten the mornings of your loneliness.

But for the ill, for you with nerves that fire
like a rusted-out burner on an old barbecue,
with bones brittle as spun sugar,
with a migraine hammering like a blacksmith

in the flaming forge of your skull,
may you be spared from friends who say,
God doesn't give you more than you can handle
and ask what gifts being sick has brought you.

May they just keep their mouths shut
and give you French chocolates and daffodils
and maybe a small, original Matisse,
say, Open Window, Collioure, so you can look out
at the boats floating on the dappled pink water.

Ellen Bass

Lions and Dentists and Cops, Oh My

And then they were upon her. That's a line from Shirley Jackson's chilling story The Lottery, and even though I was probably about fourteen years old when I read it, I can still remember the hairs on my arms and the back of my neck rising up as my bewildered brain took it in and figured it out. If you've never read the story, go and do it and then come back.

God, I love a good short story. That one and Faulkner's A Rose for Emily are seared into my consciousness, and the line I quoted above is one that I kept thinking about over the last few days as the news of the big game hunter dentist's quarry trickled and then gushed out on social media. I find big game hunters just laughably gross, and this guy looked to be typical for the -- well -- breed, but honestly, I'm way more scared of the response I've seen on social media and in the press. There have been people with tiny stuffed lions and people dressed like lions lurking and protesting in the streets, people storming the guy's dental office and shaming him over and over. The internet mobsters have hounded him and his entire family, outed them and forced his business to shut down. I imagine they've gotten death threats, and you could probably figure that their lives are irrevocably changed, if not ruined. Whole businesses are already sprouting up selling lion tee-shirts, and it seems that nearly everyone seems to be caught up in it, jumping on the bandwagon. 

I feel uncomfortable. I find it terrifying that this asshole dude is figuratively being tarred and feathered, pilloried and otherwise destroyed because he killed a beloved lion in Africa. I'm aware that he perhaps is a stand-in for nearly everything that's going wrong on our planet -- the rape and exploitation of all that's beautiful and natural -- but I still can't shake the dis-ease.

On the other hand, I'm complicit in feeling a simmering rage about the apparent daily collision of civil servants and black people. The clusterfuck of cops shooting black people every single day for minor traffic violations or perceived insult is beyond belief, even as the deadly force is a stand-in for racism -- a deep-seated and pervasive disease that you could say is the rotten core of this country. The response, though, compared to that of the lion and the dentist, seems tepid. I'm not a moral relativist, but I find this unsettling.

The hysteria around the dentist is scary to me. I think everyone has gone out of their minds. They are literally upon him. Evidently, hundreds and hundreds of animals are illegally poached and slaughtered each year, yet the outrage is directed at one human being and his family. What next? 

While I wouldn't want an angry mob with pitchforks and burning torches to descend upon any number of police officers who have shot and killed black men and women for minor traffic offenses, what do we do with the rage?  

I don't have any answers, but I do think people should knock it off with the lion and the dentist. As for the rest of it, my own rage, simmering, is but a tiny drop and it behooves me, like many white people of privilege, to sit in the moment and listen. These are intense times, and during intense times, I'm going to go deeper within even as I listen, remain open and increase my awareness of what my fellow citizens of color are telling me.

I think the palliative for fear and anger is to stand firmly and wakefully in the moment. It’s like the old Zen master saying, “Come with me. Let’s fill the well with snow.” It’s a hopeless task: The snow melts; the process is endless. We don’t take action because we expect a certain result; we do it because it needs to be done. We pick up the shovel not because we’re going to fill the well with snow but because shoveling is the dharma activity of that moment. We show up for the impossible.

Bonnie Myotai Treace 

Summer Bookworm Update

I had lunch today with one of my favorite bloggers whom I've been reading for years and years. The Diamond in the Window was visiting a friend in town and was kind enough to meet me for a couple of hours at a neighborhood cafe. Our brown rice bowls were secondary to the conversation as it was all about books -- what we loved, what we disliked, what we're reading now and what we read in our childhoods. It turns out that we're the same age and read many of the same things, had many of the same favorites and -- well -- I'm pretty positive we would have been great friends in the early to mid-seventies, moving into middle and high school in the eighties and perhaps rivals for the Reading Rainbow Greatest Number of Books Read in the Summer contest. Honestly, I could have jumped in her lap when she recalled the creepy china dog in No Flying in the House, because my very tattered, taped copy sits right above my desk in the Most Treasured Childhood Books spot. No offense to my beautiful and brilliant boys, but our reading tastes are wildly dissimilar, and I just never took to baseball biographies and that stinky kid series. Lunching and talking with The Diamond was like being with a friend from fourth grade after the bookmobile came to our school.

I just finished another read of Sigrid Nunez' memoir Sempre Susan, a memoir of Susan Sontag -- even better the second time since I spent a week with her at Hedgebrook. I'm also nearly orgasmic over William Finnegan's Barbarian Days A Surfing Life -- not only is it a literal romp, but it's got photos of surfers and waves and you know how I feel about such things. Diamond insisted that I read Station Eleven by Emily St. John Mandel, so I picked that up at the bookstore, and when I got home Pleasures of the Table, A Literary Anthology was waiting for me, a gift from a friend. I am gearing up for a September Books & Bakes, toying with assigning Toni Morrison's Bluest Eye (all about hunger), and one of my favorite of hers, or a new book called Dietland that Diamond recommended that sounds weird and edgy and wild. If you were going to come to Books & Bakes, which would you prefer, and if it's neither, what book would you like to discuss and hopefully, eat from? The books don't need to have menus specifically or even something food-related, but hopefully, there's something culinary that can be drawn out of them -- something sensual and worthy of celebrating.

Go check out The Diamond in the Window if you haven't already, and mine your brains for book suggestions for my salon. Tell me what you're reading and what's on your night table.

Making Space for Stories (and an updated embed)

Those are new Benzo-Withdrawal Drool Bandannas that I ordered online. I couldn't resist the marijuana leaf one and hope it has extra powers as it wicks away the vile drug that permeates Sophie's body.




I don't have much to say or write today. I've been thinking a lot about an article I read in Philly Voice about vaccinations. The writer, Amy Wright Glenn, is a pro-vaccine journalist and mother, but she addresses those of us whose children have been injured or killed by vaccinations with unusual gravity and admonishes those of you who would argue against our beliefs and stories. Here is a brief excerpt:

Unfortunately, it’s easy to disregard the stories of vaccine injury, disability or death as statistically insignificant or inconsequential. Collectively we fiercely embrace a utilitarian ethic with regard to vaccine injury. The stories of families suffering serious injuries are too often ignored, discredited, used to further anti-vaccine campaigns, or quietly accepted as a type of collateral damage in our noble war to eradicate the scourge of infectious disease from the planet.

I will say that this is, perhaps, the only article or opinion I've ever read on the issue that doesn't make me literally sick to my stomach or provoke what I can only call post-traumatic stress syndrome. Those overwhelming feelings come no matter the position, and after twenty years I'm only dimly aware that they are, perhaps, related to deep and damaged feelings of not being heard.

One safeguard against a decrease in vaccination rates is the public ridicule awaiting those who question the ever-increasing number of required immunizations. Even parents who were formally compensated by the vaccine court report feeling ridiculed. For example, in 2006, Florida couple Theresa and Lucas Black received a $2 million settlement along with $250,000 a year for medical expenses from the vaccine court. Why? Their 14-year-old daughter Angelica is permanently and profoundly disabled after receiving a standard round of inoculations at 3-months of age.

No matter how many times I try to reasonably talk or write about this issue, even going so far as to allow a renowned journalist to interview me and take photos of my family for National Geographic Magazine, I've never been able to convey what Ms. Glenn does so beautifully in her opinion piece. I know that's because of the emotion I feel and convey, natural given my own experience. I hope that you'll all read this piece, even those of you who joined in the social media mockery early this year or who believed that those of us who choose not to vaccinate our children or who do so on a different schedule should be vilified or mocked or pay fines or whose children should be kept out of school.

Nineteenth century British philosopher Jeremy Bentham argued that an action is morally permissible if it serves to increase the greatest good for the greatest number of people. Contrast Bentham’s utilitarian ethic with German philosopher Immanuel Kant’s deontological, or duty based, moral theory. According to Kant, individuals are not means to be used to justify an end, no matter how pleasing or far-reaching such an end may be. Individuals are “ends unto themselves.” In other words, we have value independent of our usefulness to society. 

Thank you, Ms. Glenn, not only from the bottom of my vast heart, but also from the top of my head and my intricate, mysterious brain. You have made space for our story.

Given these legal and market-driven realities, we must make space for the stories of families who pay the price of our increasingly mandated utilitarian ethic. 

Watch this, my pretties. It happened today in the United States Congress:

Whorls

That's the shell out of which I shook an almost fetus-like blob of gray slime a couple of weeks ago in my cottage at Hedgebrook. Slurp, it slid out. Now it sounds like the sea. It's a perfect breast and it's a shell. What is that whorl called at the tip? Are there names for such beauty? If you lift it up, the edge curls over, a ledge, hard, smooth and shiny, tinted pink that disappears in a curve. My finger strains to feel up and inside the darkness on the underside of the whorl. I am certain no one has seen inside.

That's my first copy of To the Lighthouse, and it's filled with tiny margin notes, written by me and a boy I loved. I've underlined this.

To want and not to have, sent all up her a body a hardness, a hollowness, a strain. And then to want and not to have - to want and want - how that wrung the heart, and wrung it again and again!

 

Cops and Firemen

It's pretty quiet round these parts with The Brothers on the east coast. I'm catching up with things, organizing, putting the old life in order, drinking vodka drinks, hanging with The Soph. I've got the first draft of MGDB and need to find an agent. Tips? Leads? Extra girds for the loins? I've got a meeting tonight at the neighborhood police station -- an orientation for parents of kids who want to be auxiliary police. Guess who? Big, big sigh with a slow, heavily accented good lord.  I'm trying to persuade him that cops while necessary and often wonderful are -- well -- cops. They carry all that shit on their belts, have clubs and tasers and bad haircuts and mirrored sunglasses and wear black leather boots that come up to their knees. How about firemen? is what I ask in my most gently persuasive tone. Tearful, if you're reading, please chant for The Big O and his mother.

I was going to write a Saturday three-line movie review of Amy, the documentary about Amy Winehouse, but I didn't get around to it. Here's a three word review:

Go see it.

Withdrawal

The more I think about Sophie's behavior, seizures and involuntary muscle contractions, the more I believe them to be symptoms of benzo withdrawal.  I've invested the process of removing this drug from her body with all the fuckeduppery of The Whole Business. I feel stripped of trust in anyone or anything.

I also fight off feelings of despair that this will ever be over. Benzo withdrawal syndrome can persist for years, even after the drug is weaned completely. I've always hated war imagery when describing illness. Her battle with epilepsy. His warrior spirit in the face of cancer. Etc. Actually, as long as I "fight" the feeling of despair, it increases. Instead, I allow it to wash over me, acknowledge it, bathe in it, open my eyes even as I'm in over my head. It goes away, then, leaves me dry and again, stripped.







I'm suspicious of the "mental illness" excuse that people of all persuasions trot out every time a man uses a gun to mow down innocent people. I'm not talking about gun control, either. I think the mental illness trope masks something deeper and more rotten that has everything to do with a culture that has always glorified violence, that is deeply paranoid and most of all, intellectually lazy. Does that sound pretentious? It's certainly not original, but it's what I'm squirming about today.











Here's a poem:


In the Library

There’s a book called
A Dictionary of Angels.
No one had opened it in fifty years,
I know, because when I did,
The covers creaked, the pages
Crumbled. There I discovered

The angels were once as plentiful
As species of flies.
The sky at dusk
Used to be thick with them.
You had to wave both arms
Just to keep them away.

Now the sun is shining
Through the tall windows.
The library is a quiet place.
Angels and gods huddled
In dark unopened books.
The great secret lies
On some shelf Miss Jones
Passes every day on her rounds.

She’s very tall, so she keeps
Her head tipped as if listening.
The books are whispering.
I hear nothing, but she does.

Charles Simic

Happy Birthday, Henry!

Henry, light of my life, you're 17 years old today!

From the moment you were born, you brought nothing but an infectious joy to the world. It's an honor to be your mama, and I'm proud of the young man you've become.

I love you.

Things That Amuse Me, Part 567

from Monty Python and the Holy Grail

567.

very well-respected neurology periodicals like the current Epilepsia with articles like the following:

Controversies in Epilepsy
Dietary therapy is the best option for refractory nonsurgical epilepsy Elizabeth A. Felton and Mackenzie C. Cervenka Article first published online: 22 JUL 2015 | DOI: 10.1111/epi.13075 Abstract | Full Article (HTML) | Enhanced Article (HTML) | PDF(118K) Dietary therapy is not the best option for refractory nonsurgical epilepsy María Magdalena Vaccarezza and Walter Horacio Silva Article first published online: 22 JUL 2015 | DOI: 10.1111/epi.13074 Abstract | Full Article (HTML) | Enhanced Article (HTML) | PDF(127K)

Where You Are

Sculpture Garden, Norton Simon Museum 

I've got a whole month of Sophie days ahead -- no school and no Communicamp this year. It's hard thinking up things to do with her, and there's some rigamarole involved given the stuff I have to schlep. I'm not complaining, but if I were a man I'd do some mansplaining. There are definitely days when I'd rather let her roam around her room, picking up toys to mouth, aimlessly, but those days leave me feeling not so much guilty, but rather inadequate. I know she needs attention and stimulation, but I don't feel like doing it. You don't need to assure me that I'm a good mother and couldn't possibly be with her constantly. You don't need to tell me that no one could possibly do that and do it for twenty years. I know these things. I just feel a bit querulous, and my sense of humor is elusive in the face of -- how do I say it -- the perpetuity of it all. I have this theory about our cellular/genetic makeup -- how as mothers we're made to withstand things like babies screaming for hours and pooping their pants for years, or needing to bathe and feed and entertain them, even when it's boring. Our wiring is beautiful in that we are able to do these things, sometimes very well and sometimes not so well, because we also know, on some deep cellular/genetic level that it isn't forever. Colicky babies eventually stop crying. Every baby eventually sleeps through the night. Toddlers get potty-trained, learn how to talk and eventually play by themselves. Ultimately, if all goes well, they leave you for their own lives.
The thing about caring for a severely disabled child is that the whole paradigm shifts -- we aren't so much wired to endure the necessary level of caregiving but have to figure out how to endure it for -- well -- ever. And no, it might not be forever, literally. Some of us fear that our children will die sooner rather than later. We also fear that they'll die later rather than sooner. Not a day goes by that I don't feel grateful for the time I do have with Sophie. I am skilled at holding paradox -- despair and delight -- cursed and blessed -- gravity and humor.

Equanimity.

At Hedgebrook I had the opportunity to share a bit of my writing with the other residents, and after reading a chapter about the early days of caring for Sophie -- the immense crisis, the hell of it all -- the writer asked for my feelings, for me in the events. Surely you felt something, she asserted, a writer needs to show those feelings, and I felt the tiniest bit defensive. I've been thinking a lot about that feedback and questioning over the last several weeks. I don't articulate myself during crisis, nor do I identify every feeling as it occurs. I am, rather, in it, doing it. When I write it I want that to be conveyed -- not so much the necessary dissociation that occurs but the attention to the present moment that leaves no room for analysis. Lorrie Moore wrote in her story "People Like That Are the Only People Here:"

How can it be described? How can any of it be described? The trip and the story of the trip are always two different things.

 The trip and the story of the trip are always two different things. I'm trying to tie these things together -- the love and the loathing -- the present and the perpetuity -- the trip and the story of the trip -- and convey what it means on a cellular level, when all paradigms have shifted.

I've lost my thread.

I took Sophie to the Norton Simon Museum this afternoon with a friend of mine. I have lived in Los Angeles for eighteen years, yet I'd never been, and it was just fantastic. The museum is very small, but the collection is pretty amazing, and the sculpture garden was gorgeous. My friend and I wandered around and caught up with one another, and Sophie was fairly content, so it turned out to be not just a lovely afternoon but one that assuaged my needling thoughts of inadequacy and caregiver fatigue.

Withdrawal

That's a weird shot, isn't it? I was trying to get a picture of us together when Sophie suddenly head-butt me really hard. It brought tears to my eyes, but it didn't seem to bother her. I suppose she has a high pain threshold what with all the goings on in her brain. My entire scalp is always so sensitive which, Dr. Jin tells me, is too much heat, and now I have a sore spot. Other than that, though, Sophie's had a decent day with no seizures to speak of, fewer tremors and jerks that I believe are withdrawal symptoms. Sometimes I put my hand on her right arm and gently squeeze it, and I swear I can feel an electric pulse running down her arm and into her hand. I wonder if she feels agitated by that, if it drives her crazy, if butting someone's head is a pain that distracts from a greater one.