Tuesday, December 1, 2015

The Subversion of Quackery

WPA poster, 1936-1938



noun: A quack: one pretending to have skills or knowledge, especially in medicine.

From obsolete Dutch (now kwakzalver), from quack (boast) + salve (ointment). Earliest documented use: 1579.

I woke up this morning next to Sophie who proceeded to have a relatively big seizure that I was able to stop by administering a couple of drops of THC. I have no doubt that if I hadn't given her the THC, the seizure would have been prolonged, and she would have been clammy and unresponsive for a couple of hours afterward. Instead, she fell asleep for an hour or so, woke up, ate breakfast and went to school.

I lay in bed after the seizure thinking back over the years of her seizures and the years of various doctors' prescribing her anti-convulsants. I thought about the combinations of these drugs -- 22 of them -- their effects on her brain and body systems, how none of them worked, how her seizures still came and how they, the drugs, wreaked more damage, arguably, than the seizures themselves. I thought about the moment when she was nine months old, writhing and screaming uncontrollably all day and night, when I asked the esteemed neurologist whether my baby might be reacting to the combination of the three drugs he had her on, one non-FDA-approved and the other two approved for use in adults. I thought about his response, a hmmmmm over the telephone that stretched into infinity, followed by that's an interesting idea and then the universe tilting on its axis, folding up and disappearing into a black hole from where it had been birthed. I knew in that moment that no one knew what was up with my baby, and if my suggestion was a good idea (I was 31 years old with a Bachelor of Arts in English and French Literature and a Pastry School certificate), we were traversing a no-man's land.

I thought about the moments when we injected her with five vaccines to protect her health and yours, her tiny mouth an O, the subsequent scream that stretched out for years, my own a mirror image. I thought about the derision, the mockery that those of us who question vaccine safety have been subject and then the smugness of Science.


I thought about all those moments this morning as I lay beside Sophie, and then I thought about the thousands of families still subject to the multiple drug combinations that these doctors are still peddling, how a young woman contacted me last week to tell me that her 18-month old baby, on four drugs, was still seizing. I thought about the compulsory and draconian laws that were recently passed in California regarding vaccinations and how grateful I am not to have any babies subject to them. I thought about the CBD and the THC and the fight to get it and then the getting it and Sophie's immediate response. I thought about my great good fortune in meeting Ray at Realm of Caring and Dr. Bonni Goldstein and living in California where we have access to high quality cannabis. I thought about the Coloradans: the Stanley brothers, Paige Figi and Heather Barnes Jackson, all of them instrumental in shifting Sophie's path and countless others. I thought about the FACT that Sophie is now off nearly 80% of one drug and 65% of the other, that these two drugs have done irreparable harm to her, even as they are withdrawn. I thought about the cavalier attitude that most neurologists have toward cannabis, their caution and their ignorance. I thought about Obama's acting Drug Enforcement Administration Chief's statements on November 12:

"What really bothers me is the notion that marijuana is also medicinal -- because it's not," Rosenberg told reporters last week. "We can have an intellectually honest debate about whether we should legalize something that is bad and dangerous, but don't call it medicine -- that is a joke.""There are pieces of marijuana -- extracts or constituents or component parts -- that have great promise," he continued. "But if you talk about smoking the leaf of marijuana, which is what people are talking about when they talk about medicinal marijuana, it has never been shown to be safe or effective as medicine."  

I thought about the wheels of Big Pharma, churning, trying to catch up. I thought about their influence on Science's practitioners, how they pay them to promote and advertise their products, ensure their profits. I thought about the money they must set aside for those damaged by their products, how they are shielded and how little it matters to their bottom line. I thought about quackery and the subversion of quackery -- when what is considered Science is actually not Science at all.

Quack. Quack.

I thought about those who come here and tell me that I'm too angry, that I complain too much, am terrifying, a miserable person. Is there a word for a reverse black hole? For chaos pushing outward, inward? If I were an angry person, I would have long since disappeared. You don't watch your daughter seize for nineteen years and suffer from terrible side effects of drugs and vaccinations that you gave her in good faith and then see her improve dramatically with an oil from a plant that anyone can grow and stay angry. You'd be dead, and I'm very much alive.

Repeat. I woke up this morning next to Sophie who proceeded to have a relatively big seizure that I was able to stop by administering a couple of drops of THC. I have no doubt that if I hadn't given her the THC, the seizure would have been prolonged, and she would have been clammy and unresponsive for a couple of hours afterward. Instead, she fell asleep for an hour or so, woke up, ate breakfast and went to school.

Quack. Quack. Quack.

Sunday, November 29, 2015

Chocolate and Dirty Martinis

Jean-√Čtienne Liotard: La Chocolatiere, 1743-1745

I could stare at that portrait all night long. The pink of her cap and cheeks, the folds in her apron, the tray with the cup of chocolate and clear water. How do people paint like that? I read about Jean-Etienne Liotard in this article and wish I could go to Scotland and look at the other portraits. I've never been to Scotland. Have you? Actually, the exhibit is now in London. I've never been to London, either. Have you? Liotard, the painter, is Swiss-French. I've been to the French part of Switzerland, and I've been to France. Have you?

Reader, what's new?

This is what I'm reading:

Right Ho, Jeeves by P.G. Wodehouse is the book that we're discussing this Friday at my Books & Bakes literary salon. I've got a friend who's just finished a nine-month stint at Le Cordon Bleu in Paris helping to cook the meal. It's going to be a good one!

Fighting God by David Silverman is a non-fiction book that some publicist asked me to read and perhaps review on the old blog. It's sub-titled An Atheist Manifesto for a Religious World. I don't think I've ever read an atheist manifesto, so I'm curious. Stay tuned.

I saw the new James Bond movie on Friday night. It was the usual fun with one too many weird dystopian torture scenes. Missing more fun and  wishing for less dark and weird dystopian torture scenes makes me seem old, no? But Daniel Craig in his tight suits that hearken back to the 1960s makes me feel young, yes. I love Daniel Craig. Dirty vodka martini this time, still shaken, not stirred. I love a dirty martini, too.

I'd put on a pink cap and rouge up my cheeks, bring Daniel Craig as Bond some chocolat on a tray, too. You?

Saturday, November 28, 2015

Who Mocked My Firepit Parenting Idea?

So, a couple of weeks ago I revealed a picture of our new backyard, grass-stripped and re-designed with drought-tolerant and California native plants. I also described my intent to keep my teenage boys at home with their friends as opposed to carousing the streets of the big shitty in low-rider cars, smoking pot and drinking beer. Last night, there were friends, marshmallows, Hershey bars, graham crackers and carols 'round the fire-pit.

Just kidding on the carols.

In other news, my friend Allison Ray Benavides of Pediatric Cannabis Support has written a remarkable post about caregiving, epilepsy and what she calls both Chronic Horrific-Trauma Integration Experience and just fucking bullshit. She describes some very interesting resources, too, including Neurogenic Yoga and Trauma Releasing Exercises. Check it out.

I'm laying low these days as we transition to two households. I won't be writing about that sort of thing, but please know that we'll all be okay. This morning was the first that the children set out with their father for breakfast in different parts. I thought I might want to drive myself around the big shitty in my sexy white Mazda, smoking pot, drinking vodka and listening to Van Morrison, but instead I'm feeling quite peaceful here in my beautiful, quiet house.

Julian of Norwich said, All shall be well, and all shall be well and all manner of thing shall be well.

Sunday, November 22, 2015

Advocacy While Laying Low

from Mimi and Dona
a documentary by Sophie Sartain

My college friend Sophie Sartain's new documentary is set to air on Monday, November 23rd on the PBS series The Independent Lens. Here's a link to the website for the documentary, and I believe it's airing at 10:30 pm.

As an accompaniment to the documentary, Sophie made this short video, highlighting two families whose children with intellectual disabilities will be aging out of the school system. My friend Michelle Wolf and her son Danny, as well as yours truly with our Sophie are both featured. I've pasted the video below, and you can also see it on the PBS Independent Lens Facebook page.

It was a wonderful experience and honor to help advocate for the intellectually disabled, their caregivers and family. Thank you, Sophie, for the work you're doing to highlight this pressing need!

Now I'm going to lay low for a bit. I'll see you soon.

Friday, November 20, 2015

Sneak Peak on Xeriscaping Project

We've ripped up our front and back yards and replaced the grass with planting beds, California native plants and mulch. It's been four weeks of work, and it's starting to come together and look really great. I bought a small fire pit and some funky chairs for that back right corner and hope that The Brothers will invite their friends over to roast marshmallows, toast weiners and drink lemonade rather than cavort around the big shitty in low-riders, eating pot brownies and drinking beer. Maybe I'll put in a chocolate fountain to ensure they prefer the pleasures of home to carousing.

A mother can dream.

The front yard is just a big pile of dirt and manure right now with millions of small bugs buzzing around, so I won't take a photo until it's all done.

Now, we're going to hunker down and wait for the big rains that are due to come in January. I suppose I could have left the grass and hoped for revival for at least another year before the drought begins again, but now I'm thinking I have a number of swimming pools should we be flooded with water.

Wednesday, November 18, 2015

My Syrian Relatives, Part 4

Splendor in the Grass

Well, we had quite a brouhaha when I posted earlier about my Syrian relatives. One of my cousins was extremely upset and let loose a personal attack in response to what she and other relatives thought was a shameful depiction of my Syrian grandfather as an angry man. My cousin apologized later, but I made the mistake of not accepting it as graciously as I might have, and my cousin took offense again. I decided that going back and forth on my blog was too upsetting for everyone, so I closed the comments. Thank you to those of you who had such thoughtful, interesting responses to both that post and to the spat as it unfolded. I did not paint a full portrait of my grandfather -- he was, obviously, a complex man and having strong opinions was only one of his characteristics (that I've apparently inherited and that I grapple with almost daily!). I thought this would be understood, but I offended not only my cousins but my dear Uncle Charles, my grandfather's only son. He wrote me a loving message on my Facebook page that I am going to post here. I think you'll get a far richer picture of my grandfather than mine, and also see where I might even get my wicked sense of humor.

Elizabeth ,I hope this does not start a family feud ( Hatfield and Mc Coys ) but i felt i had to respond .My Dad was not an angry Man and was not against Jews or Moslem he worked for many years for a Jewish boss and they were like family he was always invited to all his children's weddings and if you could picture it wore a yomica( spelling is bad ). I went deep sea fishing many times with his Syrian Jewish and Moslem friends out of Sheepshead Bay to the Jersey coast. He had strong feelings ( like you on many subjects ) on what is going on in the Middle East. Remember he lived in the period after World War 1 ,when Britain and France chopped up the area creating new countries out of other peoples land (ex Trans Jordan ) i know its before your time and your interest in the Middle East History while you studied Chinese and cooking might not have existed .loved my Dad and was so proud of how people looked up to him ,coming over for his advise and reading letters from Syria that they received and could not read. I have many good memories of my dad and so does Amy . He loved all his Grandchildren equally and it hurt her and yes your uncle Charles . He showed so much love to my beloved Vivian as well as to all his son in-laws. I remember when we were young my Dad would take us onSunday rides and we would all sing as we rode and i could see the happiness in his eyes. He would try to sing but he only knew a part of a song ( cherrie cherrie be ) an old song it was a happy time. i know Mom went thru times like all married people go thru ( im sure you can relate ) but i remember after all of us left the nest and they lived in a apartment in New Jersey when we would visit them they seemed so happy. He worked with Mom on a assembly line together in a factory and later he worked for a Jewish Lady who owned a candy newspaper store in Danville N.J. and a wonderful relation with her he was so honored that she let him open and close. II am sorry that all you remember is a terrible legacy . I write this with love, and a am blesses to have so many nieices and nephews who i love dearly and they all treat me with so much respect.

Thanks for that, Uncle Charles, and I apologize for hurting you. (As for the potential family feud, I know for a fact that my cousins are far better armed and better shots than I'd ever be, so I'm keeping my distance from here on out!)


Grateful for these guys. Along with the other Brother, they keep my head on straight, are testament to me doing something right. Or maybe I'm just over-the-top lucky. Blessed.

Watch this.

It's National Let Elvis Costello Say It Day

La Dolce Vita

(What's So Funny 'Bout) Peace, Love And Understanding

As I walk through
This wicked world
Searchin' for light in the darkness of insanity.
I ask myself
Is all hope lost?
Is there only pain and hatred, and misery?

And each time I feel like this inside,
There's one thing I wanna know:
What's so funny 'bout peace love & understanding? Ohhhh
What's so funny 'bout peace love & understanding?

And as I walked on
Through troubled times
My spirit gets so downhearted sometimes
So where are the strong
And who are the trusted?
And where is the harmony?
Sweet harmony.

'Cause each time I feel it slippin' away, just makes me wanna cry.
What's so funny 'bout peace love & understanding? Ohhhh
What's so funny 'bout peace love & understanding?

So where are the strong?
And who are the trusted?
And where is the harmony?
Sweet harmony.

'Cause each time I feel it slippin' away, just makes me wanna cry.
What's so funny 'bout peace love & understanding? Ohhhh
What's so funny 'bout peace love & understanding? Ohhhh
What's so funny 'bout peace love & understanding?

Tuesday, November 17, 2015

My Syrian Relatives, Part 3 (edited with other links for clarity)

My Syrian Grandfather
My Syrian Relatives, Part Two

Wow. A lot has happened since I posted about my Syrian relatives in early September when the plight of the more than 3 million refugees from the fighting and chaos in Syria was underscored in a photo of a little boy drowned and washed up, face-down on some godforsaken stretch of water. Now we've got a bereaved country bombing the shit out of another in retaliation for the grossest and most cowardly of massacres last weekend. We ourselves as Americans are complicit in turning a blind eye toward our own leaders who've led the world in constant drone strikes against perceived enemies in a part of the world that other leaders helped to destabilize in false war. We've got governors of some of the most backward of states, crying out about sealed borders and denying refugee status to people based on their religion. I know people who send chain emails about the threat to America from Muslims, comparing my "complacency" to that of the Germans during World War II. The Muslims are coming! The Muslims are coming! a funny friend responded when I shared that email with him, and the image of a Paul Revere riding on the back of a horse through colonial streets came to mind.

What the hell?

My grandfather immigrated to the United States from Homs, Syria in 1907 when he was eight years old. Legend has it that he and his family were Christian refugees. I doubt he was asked what religion he practiced when he fled Syria and persecution, seeking refuge in the United States of America. Or maybe there was a blank on the form he had to fill out in Arabic for religion, but surely his welcome wasn't conditioned by his response. Given that he's Christian, I guess everything was a-ok. As I remember him, though, an often angry man of rants about those of different religions comes to mind. I think that's a sad legacy.

Honestly, I don't think we live in united states anymore. To tell you the truth, I don't want anything to do with people that think we should turn away refugees based on their religion and am grateful that I live in California whose arms appear to be open to all, both historically and at present. I know, though, that I will have to have everything to do with these people because -- well -- it's complex. I will choose to not engage with them on these topics and feel sick about that, about my own complicity.

Are the white robed men in the cone hats and black holes for eyes, holding flaming torches, burning crosses on lawns, lynching men and terrorizing families representative of Christians? Are the murderous fanatics who strap bombs onto themselves, load submachine guns with bullets and spray them into people sitting at Parisian cafes and concert halls or shopping in Lebanese markets representative of Muslims? Is there a difference?

I don't believe in bombing the shit out of anyone for retaliation or dropping bombs with planes or drones in targeted strikes. I don't believe in turning away displaced people who have traveled thousands of miles with nothing but rags on their backs, at least as long as I drive around in a sexy white Mazda, live in a million dollar bungalow, turn my grassy yard into a xeriscaped paradise, upholster my daughter's walls so that she doesn't hurt herself during a seizure, pay cash for cannabis and pay taxes that support the leaders who have contributed to that displacement and the soldiers who carry out those leaders' orders.

I don't know what to do or what not to do, what to think, how to respond or any of it. I do know that I can stand firm in my desire for peace and in my resistance to violence, and that violence includes the turning away of anyone who needs help. I will stand firm in that fully aware of my own complicity as a citizen of a country who is divided, now, even in the most basic of human impulses to help desperate human beings. I owe my Syrian relatives, some of whom might very well share the same blood as I. I want a different legacy for my own children's children than the one my angry Syrian grandfather left.

Patti Smith

First off, I should say that I've never been a Patti Smith person. If you're a Patti Smith person, you know exactly what I mean. And if you're not a Patti Smith person, you probably know what I mean and might not even know who I mean.

I'm now a Patti Smith person.

I read Just Kids when it came out and loved it -- not just because Smith is a good and engaging writer, but because she wrote about that transcendent time in New York when art was Art and there was the Chelsea Hotel and grit and grime and music and being poor and doing your thing took precedence over commerce and Wall Street and all that stuff. I don't really know Patti Smith, though, other than through those iconic photographs and the language of her groupies. I got a ticket to go hear her through our library foundation, and because she is Patti Smith, it wasn't a free ticket like the other library foundation tickets but the slightly more expensive ticket that gave me a seat on the third row of this beautiful old theater in downtown Los Angeles. The place was filled to capacity with hundreds, if not thousands of Patti Smith people. Oh, and me.

But now I'm a Patti Smith person.

She was "interviewed" or rather was engaged in conversation at first with the writer Jonathan Letham and sort of spell-bound us with stories and jokes and observations and anecdotes. At one point she talked about how many books she'd read as a child, and she mentioned that when she went to a library and went to the children's section, even now, she had read all the books. She sort of had love and fierceness as an aura around her. Her eyes twinkled. She was reverent and really funny. She talked about art and music and gender and Bob Dylan (truly the greatest Bob Dylan story I've ever heard) and her children and her husband and Robert Mapplethorpe and writing and her poetry and what it means to be alive. She was transcendent. Seriously. Sweet and funny and not giving a fuckish in the best way. A bodhisattva.

And then it was over -- at least the conversation. She stood up and Tony Shanahan came out (see, since I'm now a Patti Smith person, I know who that is) with a guitar and then she sang. She sang two beautiful ballads -- one that she'd written for her daughter and another about her husband. I felt like I was floating at this point, such was her effect on me. Then she dedicated a song to the young people who had died in Paris and we all stood up and sang it with her. Because the night was made for lovers. It was crazy beautiful.

That's it. Some of you will be jealous. I understand. Some of you will have no idea what I'm talking about. I understand that, too.

Monday, November 16, 2015

End Epilepsy

I know I've said it before, but it'd be great if we could end epilepsy, stop seizures from happening, change lives, etc. by snapping our fingers or praying or wishing or wiggling our noses. In lieu of that, we can walk and support those who are working toward that end and those that are living well with epilepsy and those that are living the hell that is epilepsy. 

Please consider donating to Team Sophalofa. Here's a copy of our page on the walk website. Below it is the link for your donation. And if you feel like it, please just come out and walk with us at the Rose Bowl! We'd love you to join our team!

Team Sophalofa

Welcome to our team page for the Walk to End Epilepsy! 
The epilepsies are the world’s most common, serious brain disorders worldwide with no age, racial, social class, national or geographic boundaries. Seizures steal moments and memories, can change lives, impact development, affect learning and can even result in death. There are no cures. 
As most of you know, our Sophie has had epilepsy since she was three months old. We walk every year at the End Epilepsy Walk to help raise awareness about epilepsy, to advocate for research and treatment and most of all to support our fellow companions on this often arduous journey. We are fortunate to have finally found relief for Sophie from constant seizures through cannabis and are passionate in our support of medical marijuana. We believe that every family should have the option to explore this treatment, particularly with refractory seizures and are happy to answer any questions about it. We are so grateful for all the hard work of the EFGLA, for Sophie's supportive neurologist, and for our family and friends. We hope you'll come and walk with us and/or support our team with a donation. See you soon! 
 For the reasons above and many more, we have banded together to participate in the Walk to End Epilepsy on Sunday, November 22, 2015 at the Rose Bowl Stadium in Pasadena to END EPILEPSY.

Please support our efforts by making a donation to the team or a member of the team. Your involvement provides care, advocacy and education today while investing in research and hope for tomorrow. 

Your contribution makes a difference. Thank you!

Sunday, November 15, 2015

Word Sips


No, things don't usually go on as if nothing ever happened, because something did happen and more will probably happen and until it does, we'll all be subject to despair and worry and grief and anxiety and -- well -- annoyance, particularly for me --  at the yammering and yammering on and on of opinion. I'm going to sit tight and be quiet and maybe dip my toes in one article or another but politely decline from engagement in anything but an assertion of peace, love and my vote when the time comes.

On another note, this afternoon I am going to hear the great Ursula K. Le Guin speak at Royce Hall. I'm so looking forward to her and then to Patti Smith tomorrow night. I bought both tickets months ago and feel a tad self-indulgent going two evenings in a row to an event, especially given my deadlines for work and just all the other stuff, but those feelings are tads and as soon as I'm in my seat, I'll be thrilled. And grateful.

Reader, what are you reading? I'm immersed in City on Fire and thrilled that I'm once again able to plow through a 900-plus page book. I had thought that skill was lost as the last few tomes I'd attempted were ditched around 150 pages in, with 500 pages looming. I wasn't sure if I was getting old and decrepit and losing my mojo as a reader extraordinaire or that those other books were just duds for me. They were duds for me. I might also be losing my mojo, at least in tolerance for what I don't love. I don't feel like being a critic, so I won't tell which ones, but they were literary sensations and best-sellers by wunderkinds. City on Fire, on the other hand, keeps getting better and better. It's a great story about numerous characters in gritty, 1970s New York City, and the writing is plot driven and literary. I'm generally a hardback novel reader, but I downloaded this one on my Kindle, and other than having no idea what page I'm on (27% through so far, but I'm IN), I'm enjoying the ability to look up some words that I'd never seen used. All you have to do is push on them with your finger and the definition pops up. This never ceases to amaze me and make me glad to be alive in 2015. Here they are:

horripilation: the erection of hairs on the skin due to cold, fear, or excitement

oubliette: a secret dungeon with access only through a trapdoor in its ceiling

vigorish: an excessive rate of interest on a loan, typically one from an illegal moneylender

monorchid: (of a person or animal) having only one testicle

Here's a sentence using all the vocabulary words:

I knew I owed him, so I descended into the oubliette, the sack of coins a monorchid hanging in front of me, a horripilating woman with the vigorish he demanded.

I challenge you to give it a whirl.

Saturday, November 14, 2015

Anything Can Happen*

Anything Can Happen

After Horace, Odes, I, 34

Anything can happen. You know how Jupiter
Will mostly wait for clouds to gather head
Before he hurls the lightning? Well just now
He galloped his thunder cart and his horses

Across a clear blue sky.. It shook the earth
and the clogged underearth, the River Styx,
the winding streams, the Atlantic shore itself.
Anything can happen, the tallest towers

Be overturned, those in high places daunted,
Those overlooked regarded. Stropped-beak Fortune
Swoops, making the air gasp, tearing the crest off one,
Setting it down bleading on the next.

Ground gives. The heaven's weight
Lifts up off Atlas like a kettle lid.
Capstones shift. Nothing resettles right.
Telluric ash and fire-spores boil away.

Seamus Heaney

*Thank you, Yvonne W.


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