Friday, December 29, 2017

Riding Ferris Wheels With Men

Sunset with Ferris Wheel in Distance

I rode a ferris wheel with the man I loved in the parking lot of a strip mall somewhere in Nashville, Tennessee.  It was the last century. It was the last millennium. The air was still dense with humidity even after the sun sank,  a pale disc that had hung baleful in a colorless sky for months. The Chinese restaurant where we ate beforehand was dark and cold. We ordered hot and sour soup and shredded garlic pork that came with rice. We read our fortunes. Men trip not on mountains, they trip on molehills. I know I threw my head back later and laughed into the sky, my hair damp on my neck, drops of sweat in the small of my back, our fingers entwined, legs dangling over the parking lot far below. I couldn't bear to look down. The bench creaked when we shifted. He always made me laugh. Did we marry later that summer? Did I betray him less than two years later?

That dizzy dancing way you feel.

Men watch football and they watch baseball. They watch basketball. When they aren't in the kitchen, men watch cars going round hairpin bends in foreign countries. The sisters of men watch football, too, and they watch basketball and crack nuts in their new teeth, crunch like the bodies on the screens. The girlfriends of men watch football in their team's jerseys, screaming at home on the couch or in sports bars, lunging toward screens, so many screams. I'm a girlfriend of a man who watches football and who watches basketball, but I don't watch. I can't bear to watch.

I was delighted to find myself swept upwards and downwards at such speed. But the wheel turned round so rapidly that a Greek who was sitting near me couldn’t bear it any longer, and shouted out “Soni! Soni!” (enough! enough!)

Pietro Della Valle, a Roman traveller visiting Constantinople during a Ramadan festival in 1615, riding what was known as a "pleasure wheel"

Sunday, December 24, 2017

Merry Christmas Eve Resistors!

I tossed and turned last night and dreamt of moths. No anxiety dream, though, as I went to bed reading about moths. They build scaffolding, web-like things, lurk in dark closets burrowing into grains and stained clothing. They've been flying around our house like they own it. I've done the clean out the cupboards and throw away the open boxes, spray down the shelves with vinegar. I dislike their papery wings, their longing for water and light.

I figure baking and writing go hand in hand.** I've baked ten gingerbread forest cakes and am working on my fourth coconut cake this morning. My cottage industry gig, Everyone Needs Cake,™ has helped to fund Christmas this year. If there's a grosser phrase than help to fund Christmas, write it down in the comments because what's grosser than Consumer Christmas? My tiny men-children and daughter will reap the benefits of my returning to my pastry roots, and so has my writing. I wasn't writing at all the last few months, not so much paralyzed as overwhelmed and disgusted by the meaninglessness of all of it. Not just my writing, but the whole full catastrophe of Terrible America, fueled by the POSPOTUS* and his band of billionaires and Eddie Munster and The Turtle and all the rest of the Kochacracy (that's you, Susan Collins, and Murkowski, too, with the selling off of the Alaskan Wildlife Refuge to oil).


The writing and the baking go hand in hand, here in the gingerbread forest with confectioner's sugar snow, papery moth wings, and coconut clouds on the pale blue dot of home in the vast galaxy around it.

Merry Christmas Eve, resistors!


*Piece of Shit President of the United States. Yeah, I know it's Christmas Eve and all is hallowed, but the acronym still stands.

** No moth infestation in the products used for Everyone Needs Cake™ -- just in my dreams.

Saturday, December 23, 2017

The Things We Carry

The view of the aftermath of the SpaceX launch last night

We carry empty syringes, sticky acrid sweet on our fingers later brushed on lips, inadvertent reminders, the yellow-gray soaked-through diaper balled up, the navy blue sleep pants with the red stripe at the cuffs, soaked in the seat, the home-stitched sheet-covered pad that she lay on, her socks and the sippee cup of juice left at the bedside. We carry these things down the hall, through a life, to let them go, but first we veer off into the bedroom and open the back door where the dog has been scratching and barking impatient to get back inside

The Coming of Light

Even this late it happens:
the coming of love, the coming of light.
You wake and the candles are lit as if by themselves,
stars gather, dreams pour into your pillows,
sending up warm bouquets of air.
Even this late the bones of the body shine
and tomorrow's dust flares into breath.

Mark Strand

Thursday, December 21, 2017

White Elephants

Last night, the wind was whipping around the Los Angeles streets, cold for these parts. We had been at a white elephant party, a silly affair with beloved friends. Sophie has been good. She can't walk too well but she's seizure-free for the last ten days or so and is preternaturally alert.  Maybe even more but who's counting? I weaned her a bit more from the benzo, so who knows when the withdrawal seizures will kick in. I have also added CBDA to her regimen of cannabis medicine. Maybe she'll never have another seizure and live happily ever after. The boys helped me to bring her in from the car, and maybe it was a let-down from the party and maybe it was how difficult it is to maneuver her around (I mean really difficult despite her weighing only 72 pounds), but one of them had her and one of them worked on hauling the wheelchair from the back of the car and I fumbled with the white elephants and Sophie's bag and then the alarm and the door, and I heard Oliver say Hey Henry aren't you glad to be back from college? and there was rue in his voice and maybe it was the fuckery of the day, and maybe it was the wind but it gave me a jolt and everything everything that I am and made was wrapped in rue for as long as it took me to disarm the alarm and usher them into the house.

Listen to all, plucking a feather from every passing goose but follow no one absolutely, goes a Chinese proverb. 

Wednesday, December 20, 2017

Smashing the Plutocracy

I'm not saying anything else about What Happened Today in Terrible America, other than the plutocrats have successfully passed their tax scam on the backs of the vulnerable, bending over backwards with their proverbial asses for the ruling members of the Kochacracy.

I'm an angry caregiver and mother who knows only a bit about a certain kind of struggle but enough to respond.

Here's a statement from The Arc, an organization whose mission is to promote and protect the rights and dignity of persons with cognitive and intellectual disabilities.

The Arc Responds to Senate Passage of the Tax Cuts and Jobs Act “Each vote in favor of this bill was a vote against constituents with disabilities”

Washington, DC – The Arc released the following statement in response to Senate passage of the Tax Cuts and Jobs Act:
“Today both chambers of Congress rushed to pass an irresponsible tax plan. By reducing revenue by at least $1.5 trillion, the Tax Cuts and Jobs Act increases the pressure to cut Medicaid and other programs that are critical to the lives of people with intellectual and developmental disabilities. Each vote in favor of this bill was a vote against constituents with disabilities and sets the wheels in motion to quite possibly go back in time to an era when people with disabilities had little opportunity to live a life of their choosing, in the community.
“The Tax Cuts and Jobs Act was crafted behind closed doors and the final draft of this bill was only released publicly on Friday. The rush by the Senate to pass this bill mere hours after the House of Representatives vote makes it clear that the architects of this bill were trying to hide something from the American public.
“This year the disability rights community has endured ongoing Congressional attacks that could have jeopardized the health and well-being of individuals with intellectual and developmental disabilities. And now, thanks to the enormous revenue losses that will be created by this bill, we must prepare to protect critical programs like Medicaid which will likely be on the chopping block in 2018. We are grateful to the Members of Congress who stood up for their constituents with disabilities by opposing this bill and we look to them as our greatest allies as our fight continues. While this bill must return to the House of Representatives once more, it is expected to be signed into law. Passage of this bill will not change the resolve of The Arc’s network. As we have shown time and time again, we are a force to be reckoned with. We will remain active in our opposition to attacks on the basic rights and health of people with disabilities and their families,” said Peter Berns, CEO, The Arc.

In these dark times, when each bit of news is more debilitating than the last, when those of us who have fought lifetimes to not just keep our children alive but to maintain their dignity in the face of a culture that would deem them less than human -- well -- the only thing that helps is to keep going and not give up, to be angry and to be brave in showing that anger by continuing the work to improve this goddamn country.

You can get involved by supporting the Arc's activities here. When citizens help to protect the rights and lives of their country's most vulnerable, they are a great people and members of a great country. I really believe that otherwise they are damned, slaves to something rotten.

Tuesday, December 19, 2017

This Is Still A Blog

For how could one express in words those emotions of the body?

Virginia Woolf, To the Lighthouse

I would like to be the Milky Way, star-stretched and caught by your eye, a lens made vigorous by my streak of starlight. Beheld. I would like to be that bird, hover point, my beak just above the water, the moment your eye blinks the shutter my shudder which is either from your shot, captured, or from the expectation of flight and freedom.

Wednesday, December 13, 2017

What I'm Reading

Me reading, 1974

this interview, again, with Claudia Rankine by David Ulin in The Paris Review, Winter 2016:


I think people forget that white people are just people, and that we're all together inside a system that scripts and constructs not just behavior but imagination.


The imagination first, don't you think? The imagination dictates the behavior.


Right. Ours is a structural and institutional problem. It's complicated because of the vast amount of privilege white people are allotted inside the system, but nonetheless we are a society, and if people are walking around feeling fearful based on imagination, an imagination put in place by a white-supremacist understanding of the world, that's a problem for everyone.

If you haven't read Rankine's book Citizen, you should order it right now and read it.

Monday, December 11, 2017

Christmas-Time Caregiving Extravaganza

Hint: This isn't Sophie. Read on.
Suspense, right?

Sophie has been home from the hospital for a few days, but we're still recovering from the latest We Don't Know What's Wrong With Your Daughter But She Doesn't Have Pneumonia And This Will Cost Approximately $125,347, Part of Which Will Pay For The Care She Received At This Particular Medical Establishment But Mostly Will Go Toward Padding the Pockets of The Plutocracy or Terrible America.*

Here's Sophie in her nest:

Here's me, eating a spoonful of lemon curd, left-over from an order for a Gingerbread Forest Cake with Lemon Curd.**

Oliver had surgery this morning on his finger. He had a benign bone cyst that needed to be removed, so we rose earlier than the sun this morning and made our way to Santa Monica where the nice receptionist charged us $934.56 for THE DEPOSIT, and the nice Anesthesiologist and the nice Orthopedist and the nicest Nurses prepped Oliver for the surgery. He woke in the Recovery Area quite nicely, and in the car on the way home waxed rhapsodic about how his former fears for anything medical had disappeared and I often overthink stuff and am so glad to release these fears and thoughts. Honestly, Readers, it was like the usual fabulous Big O, without the EDGE. I'm contemplating a nice propofol drip for all of us.

Here he is in his nest:

His cheeks are not that full. He's just eating a bagel and watching something dreadful on Netflix.

In lieu of propofol, I'm continuing to eat spoonfuls of lemon curd.

*Terrible America is an apt expression coined by the great Rebecca L, poet extraordinaire. I think we can safely say it is a Terrible America that is run by a POSPOTUS and a repugnant political party that is actively supporting its sexual predator in chief as well as a pedophile Christian judge running for Senator of Alabama.

**Everyone Needs Cake™ is my new gig. I make cakes for people. I use the money I make to support the Medical Industrial Complex. Please help me to use it for shoes or make-up or something. I'm getting old and would love this really large cozy blanket I saw on the Johnny Was website.

Wednesday, December 6, 2017

The Grace of Caregiving

I'm typing this from Sophie's hospital room in Santa Monica where we arrived yesterday early afternoon after a visit to the pediatrician turned into a ride in an ambulance with Sophie struggling to breathe and a possible diagnosis of pneumonia.

Here's the good news: She doesn't have pneumonia.

Here's more good news: The care she received from the pediatrician, from the paramedics and all the ER docs and nurses as well as those attending her in the hospital has been impeccable. I just finished speaking with her attending doctor who stopped the oxygen and is refraining from giving her any more antibiotics as she is absolutely certain that there is no sign of infection. We might even get to go home later today or this evening.

Here's the bad news: This is the second time that Sophie has gotten into trouble with the increased secretions that are a side effect of the benzodiazepine that she's been taking for the last decade -- let's face it -- her entire life, more or less. Coupled with her reduced motor ability, she doesn't have the same capacity to clear the secretions and is probably aspirating more often than not. SO, I've been in touch with her neurologist and her regular doctor to tackle the problem. We are talking mechanized vests, oxygen for home and perhaps a palliative doctor. For those of you who might gasp at the word palliative, it's not the end-of-life kind of care but rather the kind of care that improves life quality as much as possible when you're dealing with a chronic condition. The fabulous attending physician is going to give me a referral to one, so we'll see how it all plays out.

It's been a hard few days. Ok. It's been a hard few weeks. Ok. It's been a hard few months. Ok. It's been a hard few years. Ok. It's been a hard couple of decades. Sophie is as resilient as hell, and that gives me strength. You know that I don't believe in an instrumental god that is directing the show, that is making things happen for good and for bad. My supplications are not directed toward that sort of help, and while I appreciate the prayers of others as good intentions, they do not comfort me nor do I believe they change the course of events. I am hard-pressed to even describe the incredible lifting of weight and sorrow and darkness from my mind and heart. When it happens it seems miraculous. I imagine it to be a kind of collective unconscious -- the love directed our way from family, from friends and those who come into and out of our lives -- a love that is in turn reflected outward.

I don't know why I am able to hold incredible sorrow and even despair along with joy and optimism, but I think it has something to do with what I call grace.

I feel much gratitude for what I believe is the imposition of grace, bestowed on me by Sophie and the years of caregiving, the relinquishing of false notions of control and illusion. Does that make sense?

As I've typed, Sophie's had several large seizures. It's not easy. Grace has nothing to do with being cured or even being "normal." I know next to nothing in the end, nor do the doctors, nor do the prayers or supplicants. Bad things happen all the time to very, very good people. Death is a certainty for all of us, and suffering, at some point in our lives, if not all, is as well. Grace has everything to do with healing, though, and when it collides with love -- well -- we're good. We're healed.

Monday, December 4, 2017

Stop Kumbayaing and WAKE UP!

Dear Representative or Senator,

As a constituent who cares deeply about issues affecting people with intellectual and developmental disabilities (I/DD) like my daughter who has refractory epilepsy and severe developmental disabilities, I have concerns about the Tax Cuts and Jobs Act in its current form because of its impact on services for people with I/DD.

I cannot support the tax reform legislation in its current form because:
- The changes proposed to the charitable tax deduction reduce the ability of nonprofit disability service providers to fund important services for people with intellectual and developmental disabilities (I/DD)
- As the only other federal support for Medicaid long term services and supports, the House passed legislation removing the medical expense deduction could put significant strain on the Medicaid program that serves people with I/DD
- The changes to the unrelated business income tax (UBIT) impact the ability of nonprofit providers and their associations to maintain limited but important revenues
- The changes to state and local taxes would have a negative impact on certain states that obtain significant funding from these taxes for services for people with I/DD
- The House legislation's elimination of tax breaks on bond financing could significantly undermine the financing for affordable housing for people with I/DD
- The addition of $1.5 trillion to the national debt may be used to justify future cuts in Medicaid, Medicare, or Social Security which are the main federal programs that support people with intellectual and developmental disabilities.

As your office considers how to restructure our tax system, I wish to share with you tax reform principles by the American Network of Community Options and Resources (ANCOR), the national trade association for disability service providers. These principles seek to ensure the stability of services and supports that people with disabilities rely on to participate fully in society. I hope you will consider these principles and the well-being of people with intellectual and developmental disabilities as legislative tax discussions advance.

ANCOR Tax Reform Principles
1. Any process that includes changes to Medicaid should be accomplished through a process that affords sufficient opportunity for legislators, advocates, and constituents to review and provide feedback on the proposal and legislative language prior to passage.
2. Individual or corporate tax cuts or expenditures must not be paid for by cuts to Medicaid, Medicare, Social Security, or other mandatory or discretionary programs that promote independence, inclusion, and community living for people with disabilities.
3. Tax reform should not decrease revenue to an extent that revenue is insufficient to continue to fund the programs and services and supports for people with disabilities at current levels or above.
4. The charitable deduction should be maintained and improved for the non-profit sector which provides the majority of services and supports for people with disabilities.
5. Unrelated business income tax should be held harmless to protect the vital role of nonprofits and associations in the disability services sector.

I look forward to working with you to strengthen community services for people with intellectual and developmental disabilities - please reach out to me if you have any questions.


Elizabeth Aquino


Here's a link for you to send your own letter.

Here's where you can call with a script. Do it. I beg you.

The Congressional Switchboard can help you identify your members of Congress and will connect you directly to their office - dial it at 202.224.3121 or 202.224.3091 (TTY). A short script you can use is: "I am a constituent who cares deeply about issues affecting people with disabilities. If you do not already oppose the tax reform bill coming for a vote today, please do so because it has provisions that would harm services for people with disabilities. Thank you for your hard work answering the phones."


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