Tuesday, March 28, 2017
I think ya'll are in need of a Sophalofa update, no? Let's all knock on wood three times, on the ceiling like you mean it. We've gotten through another minuscule wean of the benzo, and Sophie is sitting up, eating and drinking and walking and humming and not-sleeping and not-seizing like a champ. The THC is helping her.
The benzo, legally prescribed and given to her over much of her twenty-two years on the planet, damaging her brain and causing Benzo Withdrawal Syndrome does not work. It harms her.
The THC and CBD are helping her.
Let me type that again: The THC is helping her.
Did you hear that Jim Sessions, Tom Price and all the rest of you goons on the cabinet and in the legislature of the Disunited States of Amerikkka, Inc.? Canada is moving right along with federal policy. You can read about that here. If the country didn't discriminate against those with disabilities immigrating there, I'd be putting on my tiny mother mind™ thinking hat right over that pink pussy one that I'd need anyway given Canada's chilly climate.
THC, baby. CBD. Whole plant cannabis medicine.
Did you read this?
A pharma company that spent $500,000 trying to keep pot illegal just got DEA approval for synthetic marijuana
Don't peel yourself off the floor or anything. You've heard it all right here for years. I've walked by Insys' tables at epilepsy conventions and "brain" summits, walked by their smiling reps and picked up and perused their glossy brochures. I have probably benefitted from their underwriting of epilepsy projects. In the words of Ron Woodroof in Dallas Buyers Club (watch the whole thing, please, because his final line is what I'm saying):
This has been a Public Service Announcement.
If you want to learn more about cannabis medicine, I highly recommend you purchase Dr. Bonni Goldstein's book Cannabis Revealed. I helped her to tell the stories of many people who are seeing amazing results for various diseases and conditions, and you can read about them as well as learn about the history of the plant, how it works, what the latest research tells us, how to dose and other invaluable information. Because of my contributions, I do make a small amount for every copy sold, so this is also my disclosure, but even if I didn't, I'd tout the book as it's the best one out there about a subject that we still, evidently, can't convince the Powers That Be to get their heads out of their fannies, look past the cold, hard cash and start helping people like Sophie with it. Send a copy to Sessions et al, if you're so inclined, to help their view. It's dark and stinks up there.
Saturday, March 25, 2017
|A typical day in The Brother's bedroom|
First of all, don't worry about it if things go awry.
Secondly, don't pat yourself on the back if your children are fantastic.
That's it. *
* You can very possibly bear two sons two and a half years apart who then live in the same bedroom their entire lives and are raised in pretty much the same way for nearly sixteen and nineteen years (obviously birth order is something to reckon with, but for our simple parenting advice purposes, don't worry about it), yet are so profoundly different from one another that you might question whether you did indeed bear them. One of them can be exquisitely neat and profoundly perceptive with an invisible antennae sprouting from his head, yet drive you to distraction with questions and the pursuit of material objects, as well as constant existential anguish from the age of two onward. One of them can be a preternaturally confident and cheerful soul who charmed the ladies when he was literally two years old with his easygoing manner, yet drive you to distraction as an outrageous slob who has a floordrobe despite laundry baskets two steps away and as one of those men who leaves a cereal bowl with a film of congealed milk on his bedside table for weeks.
Here we go:
Don't let the neatness fool you. The person who maintains that level of clean has other issues, including a propensity as a young boy to say I hate everything and everybody.
Don't let the mess fool you. The person who maintains that level of slobbery is also one of the more relaxed and good-natured kids on the planet.
As a parent, my best advice is to not congratulate yourself for the good stuff or berate yourself for the bad.
It's out of your hands, and you have absolutely nothing to do with either.
You can marvel, though, that they both emerged from your aching, enormous body, bloody, stunned and screaming yet intensely beautiful (that'd be them and you).
|I had some big baby boys|
Thursday, March 23, 2017
I am Sophie's conservator. Every two years, the government checks in on our relationship, which is as it should be, I guess, although the whole process is akin, figuratively, to getting stabbed in the heart. It's the same feeling as listening to the robo calls from Sophie's LAUSD high school that describe the various senior year festivities and activities. Sophie has been a "senior" for over three years, yet she won't be going to college day or career day or military sign-up day or cap and gown ordering day or prom day or -- you understand the drill. If my imagination were a work of art, I'd say that as its conservator, I let things roll, I elaborate, I preserve --
It is what it is, as they say.
Yesterday, a worker from the city came to our house to interview Sophie to make sure that she still needed a conservator. She was terrified of our dog Valentine, the goofiest poodle on the planet but otherwise a mild enough sort who immediately greeted Sophie. The dog greeted her and the worker greeted Sophie, that is. After she finished asking me a bunch of questions about Sophie's needs and medications and doctors and health history and educational status, she told me that she needed to ask Sophie some questions. I raised my eyebrows. I had kept Sophie home from school for the meeting, and she was sitting in her wheelchair humming. If you're a new reader to the blog, Sophie doesn't hum songs. She makes a steady monotonous sound through closed lips that is at once an expression of agitation (meaning she wants to get up and out of the chair and go outside), of discomfort (of what I have no idea) or perhaps just of a self-stimulating nature that feels good. Depending on my mood or where I am in the caregiver cycle, the sound can make me feel alert to alleviating her discomfort, amused (I have my tolerant side), agitated (okay, CRAZY) or indifferent. Yesterday, I felt amused by Sophie's insistent hum yet my heart throbbed from the ax that the worker had metaphorically thrust into it.
I'm a conservator, a person who guards and protects my adult daughter. I'm also responsible for the repair and preservation of a work of art -- my imagination, I think. A thing of cultural interest. My writer mind. I listened with amusement to the questions so earnestly asked by this cheerful, bland woman.
Sophie, do you know who you are?
Sophie, do you need an attorney?
Sophie, would you like to vote?
Silence. (I might have interjected here over the hum with my own answer which would be Yes! And hopefully get the asshole and his band of billionaires out of the government!)
We tolerate these things, we conservators.
The worker turned to me, still earnest yet apologetic. We have to ask these questions because there are those who would take advantage of people's disabilities. I told her how much I appreciated that care and attention. I meant it. She stood up, and I stood up and she handed me the paperwork and I put one hand on Sophie's head as the worker said good-bye. Then she said, Plus, you never know! Sophie might wake up one morning and start talking and recover!
Reader, it was then that I removed the ax from my own heart and brought it over the worker's head, cleaving it in two.
Valentine sniffed around a bit and smiled and Sophie hummed.
Monday, March 20, 2017
|The Department of Motor Vehicles, Los Angeles. CA 2017|
My understanding of what's going on in this country is shrinking, and I find myself opening up articles, reading a few sentences and then sighing in exasperation or grimacing in disgust or taking in breaths to allay anxiety or rolling my eyes heaven-ward in bewilderment.
Are we supposed to understand what's going on?
I hate to say it, but I rely almost exclusively now on acronyms to express myself in this area. WTF?
I remember this quote by the great 18th century satirist, Jonathan Swift:
It is useless to attempt to reason a man out of a thing he was never reasoned into.and
I never wonder to see men wicked, but I often wonder to see them not ashamed.We're all Gullivers here, methinks.
Sophie went back to school today for the first time in weeks, other than the day I brought her in for her birthday. I don't feel like going over what's been going on because, frankly, I'm so tired of the whole shebang, and I imagine you are, too. Suffice it to say that she's trending better even as we slowly wean her from the hideous benzodiazepine and supplement more aggressively with THC. I'm trending better right along with her because you know where she stops, I begin or where I stop, she begins and it's a fine, fine line. I also got acupuncture from our beloved Dr. Jin.
Yes. THC, baby. The psychoactive stuff that I myself have not partaken of since the halcyon days of college at the University of North Carolina at Chapel Hill. If I'd had any idea that I'd be administering a pale green gold oily version of it to my seizing and drug-addled daughter thirty-plus years later, I would have smoked more and studied less. Hell, I would have joined in with something more than tolerance when my boyfriend and his housemates watched the Tar Heels play basketball with the sound turned down and the bootleg Grateful Dead tapes turned up.
If you hear Old Racist Alabama Elf-Man Sessions or Old Up Big Pharma's Ass Georgia Cracker Price make any cracks about medical marijuana being a joke, tell them I'm going to beat the crap out of them in my mind. My tiny little mother mind™ knows few boundaries, is exasperated, disgusted, anxious and bewildered and would love a good red neck upon which to project its conflicts. Just a little March Madness.
Speaking of conflicts and the Tar Heels, did ya'll watch that game yesterday? It was a nail-biter that I watched with my sons and Sophie. March Madness for sure. This is a picture of when we had fallen behind Arizona after an early 17-point lead. I have quite effectively brainwashed my sons to be ardent Carolina basketball fans, and they were nervous wrecks.
Here's a video of the action when things got really tense at the end, right before I began to fold the boys' clean socks into balls, a task that I turned over to them when they were about five and seven years old. So many boring white socks I thought I'd go mad, wrote Virginia Woolf. I thought I was going to have a stroke or a heart attack watching the last few minutes of the game and even folded The Brother's laundry and smoked a few cigarettes in between bong hits.*
Between the not smoking too much THC in college, giving Sophie enough THC to help her brain today and parenting my boys to cheer ardently for a team that I love despite not knowing a damn thing about the sport -- well -- I'm going to humble brag here about my parenting skills. I am bewildered, to say the least.
* Just kidding. Virginia Woolf did not write that.
Sunday, March 19, 2017
I was texting with a couple of friends today and all agreed that our general Sunday blues were even bluer. One friend suggested that it was the change in the weather, the weird onset of spring. Maybe it's the death of Chuck Berry, another friend suggested. Maybe it's just life in general these days, I think we all agreed. I remembered the Edna St. Vincent Millay poem that I trundle out every April because it speaks so directly to the feeling, particularly that last line. I think I'll post it a little earlier in honor of climate change.
I do love my dark blue friends.
Saturday, March 18, 2017
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:
In our teens we all bought girdles
with rubber knobs to hold up our stockings.
We wiggled into them, our “foundations.”
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.
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.
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.
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.
*For those who are new, I hate this word and use it sparingly and in jest.
Thursday, March 16, 2017
The birds are singing me back this morning to last year and an apartment filled with slanted light, their song on air through plastic blinds, the drift, a breeze and quiet. I found a Buddha necklace curled in a little box on my dresser, pulled it out and remembered it falling apart, worn by water and too many knots, but I loved it so. The chain is fabric and beaded and fell apart in my hands even now, leaving the medal with its tiny notched saint sitting cross-legged in my palm. I threaded a pink ribbon through it and tied it around my neck. He (she) sits slant in the shallow hollow between clavicles, the suprasternal notch. That sounds like the moon or a star, a hand at my throat, smooth dark places that take touch. I sing words, let go notch. Aster a flower, the n celestial, something with wings, sound in body, shadow and light.
Monday, March 13, 2017
I stood and looked to the east and took that picture as the sun rose on Sunday morning near the Salton Sea. I shouted hallelujah in my mind and looked to the west where the moon was going down.
The birds were truly like a chorus, and I whispered hallelujah in my mind. My troubled mind so heavy along with my heart over Sophie's struggles. The photographer of birds who holds my heavy heart with such light hands.
Day after day I think of you as soon as I wake up. Someone has put cries of birds on the air like jewels.
Ann Carson, from Short Talks
I hope you can play that video because it's sublime. I also posted it on Instagram where you can find me at elizabettaa.
I went with C to see the desert bloom, supposedly over-the-top-once-in-a-decade because of the unusual amount of rain we had this winter. The desert didn't disappoint, even though about a million people were doing the same thing. The ground was covered in a carpet of yellows and purples and whites. I took pictures with the fancy lens, but I haven't uploaded them, yet, so here are some from my iPhone.
We met dear Yolie and Tearful in the desert where they're living the boondocking life. It's like a dream both to meet them and see what they're doing. They are a couple with whom I connected many many years ago on the world wide webs. Now we've met in person, and it was an intense collision. We already knew one another. I held onto both of them for a good long time, absorbed their goodness and strength.
These internet friendships are the real thing, people.
This morning I read about the trauma that Syrian children have suffered, have absorbed, will suffer. I read about the people of the Sudan, of Yemen and other countries -- the starving bloated face of a child, the warning that displacement, famine, warfare will bring on the greatest humanitarian crisis since 1945. I looked at the smug faces and read the words of those who rule the plutocracy that is the Disunited States of Amerikkkaa. I felt the dread of what is to come even as I heard my own daughter's sigh into seizure over the baby monitor. I rushed into her again and again and again and all the years of agains. Suffering. The world is so vast, the suffering so enormous, I texted a friend, our efforts to stem it so paltry. If I am charged to care for Sophie and suffer in doing it, I will try to do it with strength and love.
I repeated that over and over and over today.
Perspective as Higher Power, my friend Chris said. Yes. The ongoingness of it all.
Friday, March 10, 2017
I'm really slacking off here on the old a moon, worn as if it had been a shell. I don't even know where to start. Do I even need to start or start back? Sophie turned 22 years old on the 8th, and there was a bit of celebrating,
but Sophie isn't doing so well.
I had a mini nervous breakdown this week, too, which involved some early morning throwing of the Virgin Mary Oracle and other desperate drama, and that was partly because the Republif*^ks are dismantling our healthcare and partly because I went into the wormhole of Trying to Figure Things Out and have decided that Sophie is suffering from benzodiazepine withdrawal syndrome. Strangely -- or not -- figuring something out (meaning your intuition is confirmed/affirmed backed by research and science) means an incredible release from fear into calm. The two reasons for my mini nervous breakdown are intricately entwined and can be summed up in three words: Medical Industrial Complex. Normally, I'd explicate, but the rant would be epic and, to tell you the truth, I don't feel like wasting my anger on the screen, and I'm better now, calmer. I'm also too busy fighting with CVS drugstore and Anthem Blue Shield to switch the benzo from tablet to liquid so that I can begin the process of weaning again (I can take away tinier amounts if it's liquid). I think the struggle is similar to Ben Carson going from neurosurgery to housing and development, all while comparing slavery to immigration -- oh, Bless his Neurosurgeon heart.
You're going to need a pre-auth because this is a narcotic, the earnest pharmacist told me for, perhaps, the five millionth time since Sophie has been on this drug for nine years (the drug should apparently not be taken for more than a few weeks but, hey, let's give it to babies with epilepsy!) I'm also administering a new protocol of THC to help mitigate the horrendous effects of the syndrome and gathering information from the wonderful Dr. Bonni and from my friends in the know because The People in Charge don't know jacksh*^t about marijuana. Speaking of those in the know, the Ass Hole Care Act (AHCA) as proposed by the Chief AH Eddie Munster will be devastating to those with disabilities in particular and not much better for everyone else. It'll be awesome for insurance companies, though, and medical device manufacturers and, I guess, for those yokels out there who think the government has been coming between them and their doctor with the Affordable Care Act (yokels, insurance companies call the shots, not the government but hey, big business, free markets, the glories of unfettered capitalism!)
Oops. I said I wasn't going to rant.
Maybe I should quote a little Jesus.
Blessed are the meek for they shall inherit the earth. (Matthew 5:5)
Then shall he answer them, saying, Verily I say unto you, Inasmuch as ye did it not to one of the least of these, ye did it not to me. (Matthew 25:45)
Bikkhu Boddhi says, "if we are to close the gap between ideal and actuality—between the envisaged aim of striving and the lived experience of our everyday lives—it is necessary for us to pay greater heed to the task of repetition. "
I think of myself at present as a dragon coming out of a cave. There's vision and hope in the fire coming out of my mouth, and there's also my tail, its scales the glitter of the past, replicated over and over. The blast of fire. Drag. Swish.
Saturday, March 4, 2017
|Pacific Ocean, The Port of Los Angeles, Snow-topped Mountains|
He slid further down as it reached his shoulders, in a kind of nirvana not based on freedom from desires but on attainment.
James Salter, from his novel All That Is
It was a rough week because of Sophie and isn't it usually about Sophie and while I've written here in (on) air for years about these days, these rough days, I came up for it (air) today lying on my back rocking with the boat my face to the sun. The word rock. The word lull. The boat rocks and lulls me, the expanse of gray, a bit of blue. Once we'd passed the lighthouse, the slick seals on the buoys, the drone of the motor and the wind in my face, my hair whipped, I'm whipped, god but I'm always so damn whipped. I held the hand of the man that I love, he gives to me (air) and the whales do that thing with air, the word blow, and we stand there (in air) and wait for the rise of it, the arch of gray over gray (a bit of blue) before it slips back under, last the tail. The word fluke.
Two men in a donut shop drinking coffee and eating crullers. You know what war is? the older white one asked the younger black one. The other man knew it wasn't a question for him to answer. He waited. It's the failure of imagination, the man answered.
I read this somewhere and wrote it down, without attribution. I'm sorry for that. Birding is a way of heightened, finely tuned seeing.
Labels. I pulled into a crowded gas station at sunset tonight in San Pedro, made room for a man leaving. Your lights! I said. Thank you, baby, he said. He was bald. He was black. The woman at the tank next to me was cleaning garbage out of her car. She wore a head scarf. She was Muslim. A man walked up to her and remarked on her scarf. Insulted her. He was bald. He was Hispanic. I said Knock it off. He looked at me, cocked his head and walked away. She nodded her head, got into her car and drove away. I have long dark hair. I am white.
Wednesday, March 1, 2017
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.