Tuesday, July 18, 2017

#gratitude



Are you thinking jesus! When's this woman going to express her gratitude for the deep blue sea and the great blue whales? Here it is, my gratitude for the deep blue sea, for the coast of California and the planet's largest mammals that swim in the waters.




I saw five blue whales a week or so ago, not one or two or even three but five. Their bodies are sleek and shone in the sun. Vast.

Here it is. My gratitude for dolphins, for the thousands of them raced us, my efforts to not anthropomorphize so difficult because surely they smile and play and love?








Here it is. My gratitude for the island fox




for a dusty hot day



for a rocky beach where I lay with a book on a blanket, a stone under my head and in the small of my back



for a painted cave that smelled of damp and green. Lichen, the word


For white flowers that grew out of rock


for red crabs busy in clear water



for pelicans overhead



for this man for us




Monday, July 17, 2017

How to Keep Sane During Phone Calls Related to "The Systems of Care"



 A dear online friend mentioned my "fuck you stare" yesterday, which I was completely unaware that I possess. Another dear online friend private messaged me that I did not possess a "fuck you stare" but had "beautiful black eyes" and "the weight of the world." She also told me that I had plenty of "fuck you" writing. I sent the former the photo above and the latter a message saying that the former meant no harm and that lately a "fuck you" stare at men in general was very much in order. I'm talking about YOU, John McCain and that clot behind your eye that you're dealing with by using the "best healthcare system in the world" that we provide for you, and YOU, Mitch McConnell and your bullshit healthcare bill that you've deferred yet again. The weight I carry, though, is far less than others' in this world, and I'm not talking poundage. I'm thinking we should all join together, find a good ambulance-chaser attorney and file suit for emotional distress related to the healthcare shenanigans in our congress.

This morning, I spent the better part of two hours on the phone using my tiny little mother mind™ to navigate the various Systems of Care. That's a euphemistic phrase for The Neurologist's Office, The MediCal, The Blue Shield, the Social Security Administration, and the Wheelchair Company. With the exception of a successful refill for The Drug That Doesn't Work But That Sophie Is Horribly Addicted To, the rest of the calls were unproductive fools' errands. I've been throwing around the term fool's errand a lot lately. It captures quite perfectly what dealing with the Systems of Care is like on some days. Most days. I won't regale you with details because I'd feel responsible if you felt violent as a result, and I don't have a way to dispense Tootsie Roll pops to mitigate any damages.

Anyhoo.

Today, I found myself unwrapping a Tootsie Roll pop and sucking it furiously while on hold. About when the insurance company's Automaton/human came on, I'd gotten to the sticky tootsie roll part and enthusiastically crunched the candy into the chocolate while dictating social security numbers and case numbers and weight and marital status and my feelings about John McCain's eye clot.* Just kidding on the last three. See below for thoughts on the last. Where I ended up after said conversations was Brazil,** where I was given a list of different numbers to call for seemingly intractable problems and issues. I placed those numbers in a little pile on the hot pink plastic file bin on the top of my desk, right under the Shrine of Doodads and Tchotchkes.





The Tootsie Roll pop helped which probably means I have some kind of oral fixation issues.

Actually, it helps to curb invective so I can work on my "fuck you stare."

What also helps is to surrender and call it a day even though it's before noon.

What are ya'll doing today?












* I know I'm not alone in remarking on the irony of the estimable Senator McCain who suffers from a clot above his eye and who is currently getting excellent (The Greatest Healthcare System on the Planet) healthcare, gratis (thanks to his bosses, US), which has pushed the "healthcare" vote off yet again (because his vote is said to be a resounding YES). Imagine my "fuck you stare" here.

** I can still conjure the feeling I had after seeing the movie Brazil, not only because my tiny little mother mind™ has a memory like a steel trap, but because the events of my life mimic them nearly every day.


Wednesday, July 12, 2017

An Open Letter to The Neurologist and Those Like Her



The following is the text of a letter I wrote to the neurologist who used to "take care" of Sophie. I wrote the letter in response to that doctor's refusal to consult with Sophie's cannabis doctor about her care, even as we sat in a hospital room trying to figure out what was wrong with Sophie. I have since found another neurologist who is willing to work with Sophie's cannabis medicine and communicate accordingly. That's a good thing.  After vetting the letter with a few trusted friends , I sent it to several people, all of them connected to The Neurologist and the medical department at the major hospital where she works. I know it's long and perhaps winded, but I was determined to be myself and to convey not only my frustration and anguish but also my anger. I don't care about being concise, nor about burning bridges. In this screwed up time, I am interested in personal honesty, in truth. The letter conveys truth. I've gotten one response so far, and it was a form letter from the Risk Management Department. Of course. I did speak with the person who sent the letter, and he was cordial and sympathetic. He said that he would reach out to the director of the department to personally respond to me, but he wasn't certain it would happen. I told him I had no expectations that it would happen but that I appreciated his efforts. I told him that I had no interest in pursuing this, that I wasn't going to sue or make a stink in any way but through what I do for a living, which is write. 

Enough is enough.


Dear The Neurologist:


I’ve sat on and with the words I will write to you today since the last time we spoke on May 9th. I’ve been mulling over the proper tone to use as my initial feelings were ones of anger and dismay, and as a writer and the mother of a child with severe disabilities, I know the value of thinking before speaking or acting. I had no intention of “burning bridges,” because I have deeply appreciated and respected your professional opinion and care of my daughter, Sophie, for more than four years. That being said, given what transpired between us that day and in the days that followed when I attempted to better understand our conversation through your colleague [blankety blank], I am still angry and dismayed at your lack of empathy and professionalism regarding Sophie’s care.

As you might recall, Sophie was admitted to [Blankety Blank] Medical Center one evening via ambulance because I felt her breathing wasn’t normal after a couple of seizures.  That was the only hospital that would admit fire department/emergencies and the closest to our home, so I agree to go there as opposed to [Blank] or even [Blank].

While Sophie has been on Onfi for over eight years of her life (and three other benzos previously in her 22 years struggling with epilepsy), she has never had aspiration pneumonia or struggled with increased secretions. In fact, I was slowly weaning her from the Onfi and was accustomed to the increased drooling and secretions as part of the weaning/withdrawal process. In any case, something was not right, so, literally, for the first time in her life, I called an ambulance, believing that perhaps Sophie WAS very ill. You have previously expressed concern over Onfi and its risks, including aspiration pneumonia, so I was cognizant of that, and the EMT found her oxygen saturation low enough to warrant a breathing treatment in the ambulance. When we arrived at the hospital, the initial assessment showed slight wheezing but no other symptoms, and blood work, as well as a normal lung scan showed nothing out of the ordinary, other than a slightly elevated white blood cell count. Nevertheless, the doctor in the ER, in consult with you, convinced me to put Sophie on a course of heavy antibiotics, while a proper culture grew, and admit her to the hospital. They also gave her another breathing treatment which seemed to help with the wheezing. I suppressed my own instincts (that Sophie did NOT have an infection and was, rather, undergoing symptoms of withdrawal from Onfi) because I was afraid that they might be wrong, and I understood just how dangerous aspiration pneumonia could be.

That night I spoke at length with Dr. Bonni Goldstein, M.D. who, as you know, is Sophie’s doctor who advises us on all things cannabis-related. Her expertise is cannabis, and it was her feeling that Sophie’s struggles had everything to do with the interactions between Onfi and CBD/THC. As a pioneer of cannabis medicine as a treatment for seizures, I am used to the tinkering and adjusting of dosages and strains of medicine to optimize the effects on Sophie and her seizures. As you know, after nineteen years and 22 AEDs, Sophie’s seizures dramatically lessened when we added CBD oil in December of 2013. Since that time, she has had 90% fewer seizures overall, and been weaned from Vimpat and more than half of the Onfi that she was on. Her overall quality of life – and our family’s – improved dramatically as well.

But back to Dr. Goldstein and our conversation late the night of Sophie’s admittance to the hospital – I was worried and in anguish over what to do about Sophie and just did not feel right having her treated for aspiration pneumonia or infection. Dr. Goldstein assured me that it was a reasonable protocol, but she also shared some interesting information about Onfi and CBD. I was overwhelmed and asked her whether she’d consider consulting with you about the care of Sophie going forward. She agreed.

My feeling was that you are both Sophie’s doctors with two separate fields of expertise and that perhaps by putting your heads together with one another and me, we could as a team figure out a plan moving forward on how to help Sophie.

The next day, I did speak with you from the hospital. You blew off my objections to Sophie having an infection and insisted that she did. Then, when I asked whether you would have a conversation with Dr. Goldstein about Sophie’s cannabis, you said – and I quote you exactly: “No. I can’t talk to Dr. Goldstein. I’m sorry, but I have direct orders from my boss NOT to discuss cannabis with my patients.”

I’m going to be blunt and say to you that in the heat of the moment, sitting in a hospital with my daughter, scared and confused, I was floored. Shocked, really. It was as if I was talking to a stranger and not the doctor with whom I thought I’d developed a decent relationship for nearly five years. You said, “I have direct orders from my boss NOT to discuss cannabis with my patients.”

I’ve been doing this for a long time and am perfectly aware of the politics around cannabis and epilepsy. I’m familiar with the parlance and lingo of the neurology community – the “party lines,” the condescension and dismissal. I’ve participated on panels where I’ve been shut out and down by physicians, and I admit to not having a particularly high regard for doctors who don’t think out of the proverbial boxes. I’ve worked as a parent expert with the National Institute for Children’s Health Quality on epilepsy collaboratives to improve the lives of children with epilepsy, and I’ve served on several boards, including the Epilepsy Foundation of Los Angeles. I was a founder of People Against Childhood Epilepsy (PACE) and helped to raise hundreds of thousands of dollars for epilepsy cures and treatments before the non-profit was folded into CURE. I have been a grant reviewer for the Department of Maternal Child and Health, participating on countless panels in review of federal epilepsy proposals. I have devoted much of my writing life to advocating for the disabled and trying to make sense of the medical world and our experience with it. Most of all, I have experienced twenty-two years of refractory epilepsy in raising my daughter Sophie. There has not been a single instance where a drug or treatment recommended by a neurologist in over two decades has really helped my daughter.

I have tolerated your relative lack of interest in the success we’ve seen using cannabis medicine because you have always been so open in the quarterly appointments we have with you. I know that it’s an enormously controversial and complex subject with many interested parties. I have never concealed anything from you – including my personal difficulties as a mother and caregiver. I was grateful to have a caring neurologist in you.

“I have direct orders from my boss NOT to discuss cannabis with my patients.”

I’ll skip forward a week or so after the hospital admittance. I left the hospital on the third day because no doctor visited our room and gave me no indication why Sophie was still on antibiotics. Her lungs were clear, as was her bloodwork, as was the culture. In short, Sophie did NOT have an infection and never had an infection. I followed up the hospital visit with our pediatrician, who ran viral cultures and did another examination. Everything was negative. We mothers know these things, in the end. But that isn’t the story here, and, again, I respected your belief in aspiration pneumonia and wanted to do the right thing.

“I have direct orders from my boss NOT to discuss cannabis with my patients.”

I called your office and expressed my incredulity at what had transpired between us. I asked your nurse to provide me with a written policy that you were not allowed to speak to your patients about medical cannabis. I have heard stories of doctors calling CPS on their patients, of doctors who openly refuse to talk about cannabis or who are literally quite ignorant about it, but I had not experienced that from you in the nearly five years you were Sophie’s doctor. It seemed outrageous and harmful. It seemed suspicious.

I got a call from your colleague Blankety Blank who initially gave me what I might call the usual “song and dance” routine about medical marijuana – the party lines, the “need for more research,” etc. etc. Unfamiliar with me or with Sophie, she thought I was asking you to dispense cannabis, so I had to clarify things. When I cut to the chase and asked her for that policy, she said that she would speak with you and get back to me. She got back to me, two days later, and told me that you did not WANT to speak to me about cannabis medicine, but that there was no directive from a “boss” or actual policy that prevented you from discussing cannabis with your patients.

Basically, Dr. , I’d like to think that there was a misunderstanding between us, but I can only surmise that you lied to me. I know that as a physician you are taught to do no harm, but you did harm by lying to me. You broke a sacred relationship and destroyed the trust I have in you. Whatever your motivations, and I suspect they are complex, your words conveyed fear and ignorance, and I don’t want anyone treating my daughter who doesn’t have the guts to be honest and discuss her feelings openly. I regret having to change neurologists as I have always had long relationships with each of the men and women who’ve treated Sophie for more than two decades, but I’ve found someone who is willing to work with us and discuss cannabis medicine as part of Sophie’s treatment. Sophie will be seeing him, moving forward.

Despite decades of working to improve it, I am resigned to the continual problem that the traditional neurology world has communicating with their patients. I have lowered my expectations, particularly in regard to cannabis. I admit that the last shreds of my tolerance for the epilepsy world’s authority in treating refractory epilepsy are gone.

Here’s how Sophie is right now: great. She goes two weeks without a seizure and had only a couple during the month of June. I’m continuing to wean her from the Onfi, albeit much, much slower than recommended as she is so sensitive. I have doubled her dose of cannabis oil and switched products. We have found that this kind of “shake-up” can work. It is my belief that Sophie suffers from Benzo Withdrawal Syndrome. I am aware that we might never be able to wean her completely from that vicious drug, but thank goodness we have cannabis oil to help.

I am sorry that you and your colleagues have not expressed any interest in studying Sophie, a human being who developed infantile spasms at three months of age, who was subjected to twenty-two drugs over nearly two decades and two trials of the ketogenic diet before finally finding some modicum of seizure freedom and relief with cannabis oil.

Yes, she is Anecdote, but such Anecdote! You were in the position to really learn something, and you didn’t care to do so.

I’d caution you and your colleagues to be aware that young families and individuals trust you and are willing to be open about what they are doing for their children and themselves. I’d caution you that they will do whatever it takes to help their children and themselves, and that if you as a group refuse to work with them, they will hide what they are doing from you. There will be no partnership or open communication, and that can never be good for children or the doctor/patient relationship.

I’m a veteran in this horrible world of seizures that don’t end, of drugs that don’t work, of side effects worse than seizures, of poor bedside manner, of suspicions and mistrust of pharmaceutical companies and the doctors that peddle their products and are compensated to do so, of excruciating withdrawal symptoms from these drugs, of fractured families and incredible financial strains. Equal to the seizures and the disability that my daughter has suffered, is the stress of constantly wrangling with the systems of care, and I’d urge you to imagine what it’d be like if one of your own children developed the kind of seizure disorder that Sophie has struggled with for her entire life.

I like to imagine that you’d do the exact same thing as I have done.

I like to imagine that you, too, would not stay with a physician who lies to you about your child’s treatment, who refuses to learn about something that she knows little about, who responds to pressure from those “above” her (and I am imagining here that there is much pressure above you about this subject) in the manner that you responded to me.

Respectfully,



-->
Elizabeth Aquino

Thursday, July 6, 2017

How We Do It, Part (Lost Count) in a series

photographer: Carl Jackson


When I was a small child, I lay in the grass or up in the cherry tree and stared up at clouds, floating. I did more than imagine shapes when I was a child, a rabbit, a snowman, a man shaking a stick. I called a tree, flower and a flower, tree. Cloud, sky and sky, cloud. I thought Smell and then pick that tree. Climb up into that flower. Words. What they meant when I said them, how I made them up. It was the same with God. How I made Him up. Or wondered if I was making Him up. I imagined Him like the clouds, floating, shaped. And what of it and what of Him? Were we His dream? Were We his dream? Had He made us up? I saw the world through God's eyes, made up, a ball, a sphere, a reflection. Trees, clouds, flowers, grass, me on my back, ground, perched on a branch, bark, cherries. I had a lover once when I was very young and when we left one another (we left one another, over and ever), I was certain that I'd made him up, yet I made another again. Another lover. God is now god and He is he or him. I made a baby that we named Sophie. I made her up. She has no words and yet is made.


When I sit in meditation, breathe in, breathe out, my thoughts are words. I make them up, I make them clouds. I watch them float. On by.

Wednesday, July 5, 2017

Thou Shalt Not Be Irritable

"Sex appeal is fifty per cent what you’ve got and fifty per cent what people think you’ve got."



I told my friend Mary via text that I felt irritable this afternoon.

I'm tired of Blank Blank and Blank.

Actually I told her that I was tired of it all.

When Oliver was little, he used to say, I hate everything and everybody. He said that despite looking like this:


A face like an angel and a tongue like a scythe.

I wonder where he got that tongue?

IHEAE

A boy I loved a long time ago told me that his old grandmother, a southern lady said, You mustn't hate anyone but the Devil.

Thou shalt not hate.

I read an article this afternoon about a study showing that children brought up in non-religious homes were more giving and altruistic than those brought up in Christian and Muslim homes. This difference held true in adulthood as well.

Ha Ha Ha Ha Ha

A friend from whom I'm estranged told me, just before he disappeared from my life, that he needed a break from me. That was two years ago. It took me by surprise, and it hurt. We'd been friends since we worked as waiters at a fancy restaurant in Chapel Hill. I read Eudora Welty's Why I Live at the P.O.* aloud to him one night while we hung out in "the back," waiting for the host to seat customers in our sections. I really loved this friend and think about him periodically, especially these days. We would have had so much fun talking about the clusterfuck that is Amerikkka right now. Or maybe not. He might be all filled with gratitude that my complaining ass isn't around to bring him down.  The reason why I'm telling you this is because sometimes I feel a twinge of admiration that he basically does what he wants, even if that means cutting people out of his life if they get on his nerves.

There's freedom in that, speaking of liberty and the fourth of July.

Was I speaking of the fourth of July? I think it set me off on the irritability train, to tell you the truth. Here are the things that irritate me:

  1. the Fourth of July
  2. pictures of fireworks
  3. patriotism
  4. statements like "the ultimate sacrifice"
  5. people who believe so fervently in the 2nd Amendment and go to such great lengths to equate it with patriotism and American "values" that they drive around in a huge gas-guzzler in a parade. My sister took this picture somewhere in the Amerikkkan hinterlands:


I have no idea why these things bug me and why they've pretty much always bugged me. I think the fireworks thing this year is because it felt weird to be celebrating Amerikkka. It was a strain.

My friend is right that I complain too much. 

IHEAE

Except of course, you, Dear Reader.



Please, Dear Reader, tell me what irritates you.






*You can listen to Eudora Welty herself read the short story here.









Friday, June 30, 2017

What Arundhati Roy Gave Me Last Night



I took an UberX last night down to the Aratani theater in Japantown to hear Arundhati Roy, the great Indian novelist. The driver was of indeterminate ethnicity and drove an immaculate Lexus sedan. I tend toward chatty, and he obliged by telling me that driving was his second job, his first being something to do with transferring people from health insurance to Medicaid or whatever whatever whatever.  He began mansplaining about the whole shebang so I jumped in with my own tiny little mother mind™ and explained the tiniest bit about Sophie and then he shut up and then I said a single payer plan was the only way to go and he shook his head and said it'd hurt a whole lot of people and then I asked why and he told me the story of his sister-in-law who came to this country from a very poor country and overstayed her visa and had a baby with a man and used Medi-Cal to pay for diapers and formula even though she's illegal and he and his wife both work hard and this is the problem because there are thousands if not millions of people doing what his sister is doing while he and his wife are doing the right thing. He said people like her should not have babies. So I asked, Why don't you offer to pay for your sister-in-law's diapers and formulas, then? And he said nothing. To be fair, he agreed that the pharmaceutical companies and insurance companies are a big racket, and I agreed that people shouldn't work the system and should take responsibility for their actions. We compromised on the need for everyone to do the right thing, but when I climbed out of the Lexus at my destination, I walked through the plaza straight to a little bar set up and ordered myself a cold dark beer and drank it, fast, along with a $2 taco from a kosher taco truck. Then I waited in line with my copy of Arundhati Roy's new novel and filed into the theater and sat in my second row center seat and had my tiny little mother mind™ blown.

It seemed fitting that Roy was framed on stage by a photo of Patti Smith, her arms reaching up toward the heavens. I imagined that Roy had descended from them to grace us, such was her luminosity for the next hour and a half. She talked with Hector Tobar about art and literature and the history of India, of Pakistan and Kashmir. She told us of the atrocities happening there, that the Kashmir has the highest military occupation of any country in the world, that you can't really write about the atrocities as reportage but that fiction is the only, the best way to write about them because you will write about everything, all angles, all human experience through fiction. Fiction is a prayer and an offering, she said at one point, and we all might have swooned. Her voice, her laugh, her gentleness and steel. She told us that she is returning to India this weekend to appear in court. Every few years or so, she is sued by five male lawyers over something or other, for daring to speak, to write, to protest. She has spent time in jail. At the end, a woman in the hijab told her what she meant to her, and her voice broke. I felt tiny, the ride in the Lexus, the driver and his sister-in-law, Medi-Cal, Trumpcare and all the rest peeled away, a transparent skin to shed. Naked.

I'm thinking what sorts of bullshit we are preoccupied with here in these Disunited States of Amerikkka. Bloody, plastic surgery faces, the National Enquirer, talking heads yammering, yammering, yammering with our acquiescence and participation. Our umbrage. I told a friend today that the latest diversion is worse than a soap opera. Stop the madness. It's a vomitorium. Bloody face lift had me howling at the moon, she replied, and I thought yes. Yes because it's so over the top horrible that a person in power would say it and also yes because it's all so tragically stupid. There's a $3.2 million dollar Mega-Mansion behind my bungalow that a family bought so that their 23 year old graduate student kid can live in it while attending USC. They are Korean. I walked by with Sophie yesterday and noticed a black Ferrari in the driveway with dealer plates on it. Just a block away, there's a small tent city growing of homeless people who look familiar to me now because they've been in the neighborhood so long. The giant Lenin statue that sat at the corner was removed the other day as the art gallery that put it there has gone bankrupt. For a couple of days only half of Lenin sat there, and I wondered whether he could house a homeless person. Here's a picture:


But I digress.


I took an Uber home. My driver was African American and drove a Toyota Corolla. As is my wont, I was chatty but he was surly so I let up and we drove through the lit up shitty in silence. When he pulled in front of my house, I said Have a nice night and stay safe and he looked up and said Yeah. Thanks. No one has ever said that to me before.


Normality in our part of the world is a bit like a boiled egg: its humdrum surface conceals at its heart a yolk of egregious violence. It is our constant anxiety about that violence, our memory its past labors and our dread of its future manifestations, that lays down the rules for how a people as complex and as diverse as we are continue to coexist --continue to live together, tolerate each other and, from time to time, murder one another. As long as the center holds, as long as the yolk doesn't run, we'll be fine. In moments of crisis it helps to take the long view.
Arundhati Roy, The Ministry of Utmost Happiness 







** The irony of me buying a ticket to hear a writer and taking Ubers down there and back, drinking a beer and eating a taco and otherwise living this luxurious life in the beginning years of the twenty-first century is not lost on me. Privilege. Just in case you wondered.




Thursday, June 29, 2017

Smashing the Patriarchy, Ongoing



I spent most of the day yesterday in my head, not so much navel-gazing (as is my wont) as pondering the universe or as Oliver said when he was little more than a toddler and had recently watched his sister have a particularly grotesque seizure, WHAT IS THIS ALL ABOUT? WHAT DOES IT ALL MEAN? I wasn't mulling over Sophie, though. I was mulling over the State of the Disunited States. I was trying not to panic about "healthcare reform" and how screwed we are as women, how screwed Sophie is as a disabled person, how screwed we are as a country with the POS Pussy Grabber in Chief.

I was thinking more about the nature of capitalism, of how utterly rotten it is. I was thinking of socialism and how it's not just for Europeans anymore.

I was thinking about the planet, how it's being raped.

This morning's clusterfuck of presidential tweets and the conservatives' "response" to it struck me as near hilarious. It would seem that they are, of a sudden, aghast at how unpresidential  their man is. We don't need to belabor the fact that he was already the designated Pussy Grabber in Chief who had bragged about his own daughter's tits on a radio show not long ago and talked about blood pouring out of the orifices of a woman journalist who had seemingly slighted him during the presidential debates.

The word women apparently doesn't appear even once in the proposed healthcare bill. The word woman appears only in reference to abortion and pregnancy.

The Republicans/conservatives/capitalists are systematically destroying women, children, the disabled and the planet. Oh, and people of color and immigrants.

We are being told to stop whining. When I called the Pussy Grabber in Chief a POS today on a friend's Facebook thread (mea culpa), I was told that I wasn't being helpful. The response in my tiny little mother mind™ was to smash him in the face. That's the language of the patriarchy,  though.

When are we going to have had enough?

We will, I think, fight back with a ferocious love. Or Love.

I'm thinking Mother Nature.

Earthquakes

Hurricanes

Fire

Thunder

Lightning

Hail

Floods

Remember what it was like to give birth to a human being? If you don't, remember what it was like to be born of a mother?

Yes. Like that.

Monday, June 26, 2017

*^%#@&*(^*#!!!!

Sophie at school
photographer: Page Jackson

Good Lord, I'm feeling blue. And anxious and agitated and lazy and enervated, all at once. It might be because Sophie is truly done with school, and I haven't properly "mourned" that or reckoned with it or processed it* or whatever other 21st century method there might be to deal or not deal with it.

Anywho.

It might be reading about Trump's "victory" at the Supreme Court this morning. The Muslim Ban thing. It might be all the begging we're doing around the Ass Hole Care Act that's wending its way through the Senate. It might be the gross feeling I have, pretty much all the time, when I think of those people who support the Pussy Grabber in Chief, most of them people in my distant past who were as stupid then as immoral now. Some of them are people that I love, and there's the rub.*

It might be the literal caregiving of Sophie who has a bit of a cold and cough, is drooling excessively, not sleeping so well and helping to generate the kind of ambivalence that I hate admitting to -- that I'm not cut out to keep doing this, day in and day out.

It might be that I just finished a novel that I felt compelled to keep reading even as it made me feel like taking a shower every few paragraphs. It's called Fates and Furies by Lauren Groff. I read so much about it, including the tidbit that Obama loved it. I'll say that it's a very good read, but it's leaving an awful taste in my mouth -- much as Gone Girl did and A Little Life. I actually hated both of those, however "well-written."

I need a novel that will cut me to the quick* and not make me feel all slippery, not make me collude with decadence. I'm tired of the overwrought.

I'm only one week out from an amazing vacation, too, and perhaps that's at the root of my blues -- Canadian blue at the end of my fingertips, soon out of reach entirely.

The view from the seaplane we took from Victoria to Seattle

Sundown in Victoria

Wind-blown in Port Angeles

The Bird Photographer doing his thing in a meadow of daisies


What's up in your neck of the woods?*











*Cliché

Thursday, June 22, 2017

How You Can Save Medicaid (#Itsbeggingtime)



So last night, I stood on the steps of Los Angeles' City Hall with hundreds of people for a rally to support Planned Parenthood and women's health.

This morning, as you know, the Senate Republicans unleashed their vile version of TrumpCare, or the Ass Hole Care Act.

You know how I feel about repealing the Affordable Care Act, and I'm not going to rant about the horrific effects its repeal would have on me, on Sophie, on her father and on her brothers. Suffice it to say that it will be catastrophic.

"The defining feature of the Senate Republican health care bill is that, over the long term, it would absolutely decimate Medicaid—more so even than the House legislation passed last month. And it accomplishes this wrecking job with surprising efficiency, a mere six lines of text in a 142-page document."
from, Here are the six lines of text that could decimate America's biggest healthcare program 

As my friend Jeneva Burroughs Stone wrote so eloquently, "The cost shift here (to us) would be antithetical to the notion of American self-sufficiency and individual independence because the end result would be to bankrupt citizens, such as Roger and myself when our only "crime" against the State is giving birth to a child with disabilities."

That statement holds true to the majority of people whom I know who have children with disabilities. It also holds true for those who are caring for aging relatives or for those with chronic disease. 

You can help, particularly if you live in a state with Republican senators. Please help us.

Here's a script for when you make your calls. 


All information, plus numbers and action items is taken from Indivisible's guide to Stop Trumpcare.

#Resist

You're doing it for her and millions like her:





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