It's Not Too Much To Ask You to Wear a F*^king Mask and Stay Home

I'm just going to repeat that:

It's not too much to ask you to wear a fucking mask and stay home.

The pandemic isn't "over," and life is not "going back to normal." What is "normal" is the craven irresponsibility of the privileged and even the not-so privileged. This is the high school that I graduated from back in the Stone Age. It was basically a one-room school-house then (hyperbole intentional since privilege was rarely recognized in the Stone Age) but is pretty much unrecognizable now. You can read the story here. 

My take on this shit-show?

(Anonymous commenter -- you'll have to forgive me my anger as I know it offends you, makes you "exhausted") This pandemic is demonstrating with crystal clarity that the lives at risk are expendable. That if you are a person of color, a disabled person, an old person, a person who takes care of another, an "essential worker," you are EXPENDABLE.

WE are expendable.

The rest of you are "free" to do -- in what seems to be the most grotesque interpretation of freedom I've ever understood -- whatever the hell you want.

All is transactional.

So, go on with your best self, as they say.

Have a party.
Travel!
Get your hair cut.
Go bowling.
Go to the beach.
Go to church.
God will take care of you. 
You've got to start somewhere.
Don't muzzle yourself. You're free.
Social distancing is a hoax.
Bill Gates is out to track all of us.
Get back to normal.
Make America great.


I'll say it again. America is terrible and exhausting.

Sometimes, it's not. Read this:
It Just Burns Me Up

Day 60

I've been ordering fresh produce from a local cooperative, and yesterday's delivery was a bonanza of greens and lettuces, radish and baby broccoli, a scattering of herbs and lemons, a grapefruit, some blueberries and onions and a couple of tiny worms. The rendering -- the washing the drying the organizing the storing -- of all this fresh produce gets my tiny little mother mind™ thinking about convenience and waste and the myriad depressing ways a lot of us live, saying we're too busy or can't be bothered or whatever. Whatever. I'm no farmer girl, no rural girl, no grower of my own vegetables nor do I have any desire to do any of that. What I do love is fresh food, recipes and cookbooks and puttering around in my kitchen doing domestic things. I also like fancy things -- half and half in a glass bottle, tiny little jars of pot de creme from France, a weird Italian green that tasted salty like the ocean or what I imagine a cactus (it looked like one). I don't have much to say other than I've been depressed in a way that I can't remember being depressed and I'm very much aware of the luxury in that statement and the unoriginality in the condition. I'm angry, too, but I'm made of anger in no small part and as the gray takes over my hair I will try to be as exuberant as unapologetic because it's all about letting go letting god letting.






as much as i try to be an easygoing, stretch your wings and fly type... i just can't stop trying to burst people into flames

a card that a beloved sent me



People I'm Currently Trying to Burst Into Flames In No Particular Order, Except for the First Three:

Donald Trump
Mike Pence
Mitch McConnell
Men with submachine guns
Men who assault women
Men who kill black people
Men who shoot children
Men who beat up women
Men who make stupid jokes
Men who harass women
Men who are religious zealots
Men who date girls
Men who refuse to apologize
Men who can't get their shit together

Feel free to add to the list.

Gun Rage

inside jacket of Rebecca Traister's book Good and Mad: The Revolutionary Power of Women's Anger

I'm enraged this morning, waking to the news that a 28 year old ex-Marine with "possible PTSD" opened fire on a group of college kids in a popular bar and grill in Thousand Oaks, a suburb of Los Angeles. He killed twelve people, including a sheriff and then himself. Many people are injured, and there's a been a call for blood donations. I don't know what to do with my anger this morning and will use this space to express it.

My rage is not directed toward the obvious target but rather toward those who persist in believing in their right to bear arms, in their right to use violence to protect themselves from the boogeyman lurking in their neighborhoods, in their right to be "good people" with guns, in their right to collect guns and place them in special locked boxes or cases, in their right to use them for "sport," in their clamor for their own "liberty." I believe that justifying owning and using guns like the Glock this man used in this point in time, November of 2018, is outrageous, that those who do are complicit in perpetuating the myth of safety in arms and the myth that owning a gun confers liberty. I believe that these people are complicit in the deaths of tens of thousands of people a year in our country. I am enraged enough to believe that these people -- men AND women --  are equally as complicit as the gun men (because, let's face it, it's MEN who do this shit) because they contribute to the myth of violence being the answer to conflict. I believe that every single person who owns guns -- for sport, for pleasure, for safety -- because they can, should acknowledge their complicity and step up and do something about it.

Me, I'm going to donate some of my blood -- boiling at this point.
















#fuckguns

Where is Jesus?

I haven't written in this space in more than a week, and the last thing I wrote was just fluff, just superficial bullshit, just aggravating minor bad luck goofy stuff that's a mask, all resolved now. I'm walking around doing laundry, taking care of Sophie, exchanging texts with my favorite sacrilegious caregiver friend, feeling solidarity and shedding tears with and for another caregiver friend, Christy Shake, whose most recent post might have ripped my heart out of my body but instead provoked its beating a little harder a little faster. We are ALIVE. I love you, Christy. Who is Calvin and who is Sophie?Who are we without these cares? Must we define ourselves by care? Who are we at all?

Where is Jesus?

Shouldn't he have shown up by now and cleared the tables in Washington, D.C., kicked them over and thrown those who claim to believe in him out on their privileged, hypocritical, stupid, vision-less asses? Shouldn't that POSPOTUS be punished by now, disgraced and bound in a public stockade?  Why is that man from Georgia so hell-bent on power that he's denying suffrage to tens of thousands of people? Is he afraid of the black woman that he is running against? Why are Georgians not ashamed? Are they punch (or should I say beer) drunk on power? I am ashamed that I pass countless homeless persons on every single corner of this great city. I pass them by. Why have the Koch brothers spent so much money on propaganda against climate change? What are these sacrosanct values that conservative peoples espouse? Why do so many people bear arms? The man in the park in Sedona last week, pushing his mother in a wheelchair to an overlook, the rushing water below, the sky blue above, a large gun strapped to his thigh. Did he feel safer? Freer? He made me sick. Why exactly is the POSPOTUS administration now going to "erase" transgendered people? Define humanity by their genitals at birth? Who will be next?

Will we have to fight? Parents against their grown children. Cousins estranged. Friendships severed. And anger, so much anger, and it won't be squelched.

No stranger to the catastrophizing that comes with great stress (I step over a curb and imagine my body flung by passing traffic, the descent into the red rock canyon surely must be swift), I am yet dazed, struck dumb, bewildered.

I am furious.

“I have been beaten, my skull fractured, and arrested more than forty times so that each and every person has the right to register and vote. Friends of mine gave their lives. Do your part. Get out there and vote like you’ve never voted before.”

—Congressman John Lewis

Anger and Scythes

Illustrator Micah Caudle, seen on Pediatric Cannabis Support

I'm no stranger to anger and have perfected the art of the Tongue Scythe over a lifetime and particularly during the last 23 years.  During this time of Terrible America,* when dinosaurs run shit, as my friend Allison Ray Benavides noted today, my anger, exhausting itself, is inexhaustible.

Attorney General Jeff Sessions announced today that he would be rolling back the Obama Administration's "hands-off" marijuana federal guidelines. You can read about it anywhere on the internets, and the good jesus lord knows I've talked enough about cannabis medicine for the past five years that even the tiniest of your tiny little mother minds™ knows that it's a plant that not only improves lives but also saves lives. You also know that many of us have been working our asses off as activists to make this medicine accessible to everyone in this country, that we've been fighting ignorance and stupidity and greed and power and have made incredible progress. 

Jefferson Beauregard Sessions, a dripping moniker for a man who I could cut to pieces with my tongue.

Cue anger and the scythe.





We can all sit around and throw out the reasons why the AG has made this announcement today:

1. Jeff Sessions is a racist who has a vested interest in the Profit Prison business. Generations of men -- primarily African-American -- are incarcerated in these prisons.
2. Big Pharma wanting the whole damn pie, working their tentacles around literally every single aspect of the cannabis industry, including the government
3. Jeff Sessions is a willfully ignorant fool who has never bothered to read anything of scientific value about cannabis, is unaware still that cannabis is not a gateway drug and has no interest in the lives of tens of thousands of people who are helped by it as medicine
4. It's a great diversion from the other shit going down
5. It's a great way to make the big liberal states squirm

but it's probably much simpler than any conspiracy theory. Jeff Sessions and the POSPOTUS and the majority of the Republican party are hell-bent on undoing everything that the Obama administration did just because they can. 

Where does it end? When does it stop?  I'm going to keep raising my voice in anger and frustration but also with honesty and truth and compassion. I'm raising my voice in anger against the lying, greedy motherfuckers who are running this country into the ground and against those who support them, even still.

You know who you are.

Shame on you.


#RESIST

* The name Terrible America is the poet Rebecca Loudon's genius

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”

Posted on December 20, 2017 by The Arc

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.

The United States Medical System, Part Two in a Series Through Photos

23 years, beginning in infancy, four different benzos (Nitrazepam, Ativan, Klonopin and Clobazam),
zero seizure control,
high dependency, still being prescribed to babies and young children
despite little to no evidence of efficacy
THE REAL TIGER MOTHERS take charge

The Price of Addiction
(deductible finally met in November because of MRI, etc., catalogued in The United States Medical System, Part One in a Series Through Photos
co-pay for drug over eight years has ranged from $0 to $780 according to the whims
of the United States Capitalist Medical System
where patients are consumers and the HHS Secretary is Big Pharma

Never Go Backwards
(went backwards at behest of Neurology BigWigs one year ago, a seriously fucked up decision)
backwards means once you start to wean, don't jack up the dose
backwards means after weaning 80% over three years, you jack up the dose to a larger amount than four years previously
#nogood
#neveragain
#tigermothersknowbest
#trustyourgut

Mechanism of Action Unknown

Me, sitting on a stack of novels (my expertise), reading the insert to Sophie's Onfi (neurology's expertise)

So, I spoke with Karen, The Dark Overlord yesterday on the telephone to finish clearing things up regarding my recent conversation with The Neurologist. If you remember my post from several days ago, I was consulting with The Neurologist from Sophie's hospital room and asked her whether she might put her head together with Dr. Bonni Goldstein's regarding Sophie's care. I had -- erroneously, I guess -- thought that a consult between two MDs with separate expertise (one with Onfi and the other with cannabis) would be of benefit for their patient, Sophie. The Neurologist told me that she had received direct orders from her boss not to discuss medical cannabis and that she would, therefore, not speak with Dr. Goldstein. She wrapped things up by advising me to stop weaning Sophie from Onfi.

Post Marketing Experience

Later that day, when I'd recovered from the shock, I called the hospital where The Neurologist works to clarify this policy. I might have gone on a little rant with the nurse, but I used no curse words and was, in fact, as exceedingly polite as I've been taught since girlhood.  The next day I received a call from Karen, the Dark Overlord who, I learned, was not The Boss, but rather an administrative RN. She has a sweet voice and was as accommodating, let's say, as an insurance company representative or a programmed robot. You know the type: We understand your frustration. We understand that you're upset. We are working under the highest of standards. Per medical cannabis, it goes like this: We need more studies. It's an alternative treatment. Anecdotal does not mean evidence. Best practices. 

Mechanism of Action

Yesterday's second conversation with Karen, the Dark Overlord, clarified that The Neurologist, basically, lied to me. There is no policy from a boss that says she can't discuss medical cannabis with Sophie's medical cannabis doctor. Apparently, she does not WANT to discuss medical cannabis with Sophie's medical cannabis doctor. I told Karen the Dark Overlord that I found this not just incredibly frustrating but astounding and unethical. Karen the Dark Overlord assured me that the department is nothing but ethical. I truly do wonder what's going on, because I find it hard to believe that this doctor, with whom I've shared my daughter for over four years, would lie to me. I like this doctor.

I told Karen, the Dark Overlord, that a person like me who has been dealing with intractable epilepsy for more than 22 years doesn't really, essentially, care what the neurology community thinks about medical cannabis at this point as far as what I'm going to do with my daughter, but that hope never dies and that I still have hope that there will be some curiosity on the part of Sophie's specific health practitioners to learn why this medicine has helped her more dramatically than anything else she's taken for those 22 years. I also told her that I imagined a scientist would demonstrate some curiosity, specifically, toward Sophie's case. I also told Karen the Dark Overlord that I do care about younger families, and that families with children who have intractable epilepsy who are new on the path of discovery that multiple drugs are not helping but actually harming their babies and children will still be trusting enough to consult their doctors about medical cannabis. I believe fervently because of all the work (paid and unpaid) I've done with national organizations to improve the quality of life and medical care for children who suffer from refractory epilepsy, that trust between doctors and patients is paramount and that communication must be transparent and ongoing. I told Karen the Dark Overlord that that trust will be broken, that people will actually lie or fail to disclose that they are going to use medical cannabis (even though it's legal so far) when they realize their doctor has no interest or is being coerced to lie or influenced by pharmaceutical companies to lie or is -- let's be blunt -- intellectually lazy. Between this incident and the recent one where an esteemed pediatric neurologist who is being paid by a large pharmaceutical company doing studies on cannabis also tells his colleagues that it would behoove them to report their patients using medical cannabis to Child Protective Services, my trust is broken. Already shaken, my trust is irrevocably broken.

Pediatric Use (Sophie put on benzo at five months)

I told Karen the Dark Overlord that there were plenty of studies confirming that medical cannabis is an effective treatment for intractable epilepsy and that it was being held to an unethical and unreasonable standard given the drugs that my child and hundreds of thousands of others have been subject to for decades. She told me that she worked with life and death situations in the intensive care unit and wasn't familiar with these issues. I told her that these were actually life and death issues. Evidently someone pushed her INCREDULOUS button because she had never heard that.

Here's a very recent study, titled Efficacy of Cannabidiol in Children with Intractable Epilepsy from the esteemed journal Neurology. There are, literally, thousands of studies about the effects of medical cannabis on epilepsy that go back at least thirty years. What is going on here is harm.

The neurology community is doing harm.

Pretty Girl

I have no idea.

I have no ideas.

Pretty girl.

Pretty smart girl.

I'm thinking about a lifetime of relax, calm down, I'll pay you $1,000 to be quiet, You're such an exaggerator, Your head's always been in the clouds, Get your head out of your poetry/ass, Book sense isn't everything, relax, calm down, you're crazy, you're basically a pretty girl with some smarts.

Elizabeth Warren in the hallway outside the hallowed chamber, still reading.

The Republikkkans have prioritized voter suppression, and they've specifically targeted black people and other disadvantaged groups. The Supreme Court, with a majority of conservative justices, gutted the Voting Rights Act and literally opened the gates to restrictions and obstacles that some could argue were the main contributors to how we got here. Here.

How we got here. 

The most intelligent members of even my high school class are arguing with, literally, the least intelligent. The least intelligent are gloating, smug, rich, KKKristians. Gun-lovers. Brain, they hissed back in the eighth grade when I walked down the hallway with my stack of honors. Brain as derision.

Make Amerikkka great again. 

The appointment of the racist Sessions and the billionaire Kkkristian DeVos took the breath out of me. Not only because he's an old-school racist but because of his stance on medical marijuana. He's not into it. Not only because she's intent on increasing God's Kingdom but also because she is purposefully ignorant and disdainful of the laws protecting the rights of the learning and otherwise disabled.  She's not into it. Will I have to stockpile Sophie's medicine? At least Sophie ages out of the public school system this May. It gives me little comfort to be living in the greatest state in Amerikkka, because I know just how long many of my comrades in the disability/seizure/epilepsy world have been waiting and hoping for an easement of marijuana laws. They're not getting it now. Their children will suffer, perhaps die. It gives me little comfort to be living in the greatest state in Amerikkka because I know just how dependent many of my comrades in the disability/learning disabled world are, how young their children are, how they are thriving in schools responsible to the law that will, perhaps, not be enforced.

Even as I type, I'm getting my breath back.

I'm going to the pool now, will dive in and begin the steady strokes. I'll hold my breath, blow out through my nose and twist my head to the side. I won't gulp in air but rather train myself to keep breathing, steady, propulsive. Forward. Breathing for myself and breathing for others.



















#resist

Shame

on you for voting for Drumpf.

Shame on you for not voting at all.

Shame on you for supporting Republican policies.

Shame on you for reducing everything to economics.

Shame on you for your racism, misogyny, xenophobia, greed and ignorance.

Shame on you for being a climate change denier.

Shame on you for supporting a man who mocks the disabled.

Shame on you for supporting the sexual assault and degradation of women.

Shame on you for claiming that you're not a racist or a misogynist or xenophobic, greedy or ignorant. You have condoned all of the above with your vote and support.

Shame on you for claiming that you do not support the sexual assault and degradation of women. You have condoned all of the above with your vote and support.

Shame on you for denying what we can see with our eyes.

Shame on you for supporting those who, in the middle of the night, voted yes to repeal the Affordable Care Act.

Shame on you for undercutting those of us who have real issues at stake.

Shame on you who say get over it, don't get your panties in a wad, be patient and see what good will come.

Shame on you for not listening to those of us who deal with healthcare issues every single day, who've told you that this repeal will be harmful.

Shame on you for not realizing that even the thought and the build-up to the repeal of the Affordable Care Act is deeply damaging to the psyches of many people who've been through far more than you can imagine.

Shame on you for claiming to be Christian when literally everything that's going down is anathema to the teachings of Jesus Christ.

Shame on you for equivocating.

Shame on you for using false equivalencies when truth hits you in the face.

Shame on you for your lack of backbone.

Shame on you for your cynicism.

Shame on you for your patriotism.

Dazed and Enraged

A friend forwarded an article from the Wall Street Journal today about the Israeli chemist, Dr. Mechoulam, who is considered the pioneer researcher in the field of cannabis medicine. I scanned the article because I know all about him and his work, but just before I was going to click off of it, I read this:

And we found that those 7 or 8 patients that were getting the [cannabidiol], 4 out of them had no epileptic attacks for three or four months and three others had much less and only one was not affected at all. By contrast those that did not get cannabidiol continued their attacks. We published that and I thought something would happen. But nothing happened for 30 years, and I was kind of disappointed… [There is now an ongoing] major clinical study with cannabidiol in epilepsy. It’s a shame really that one had to wait for 30 years when these facts were in the literature.

The operative words here are, obviously:

It's a shame really that one had to wait for 30 years when these facts were in the literature.


I'm not going to mince my words. If I had a dollar for every time I've either read or heard from the lips of countless doctors and researchers and politicians and all manner of human beings that constitute The Powers That Be the words WE NEED MORE RESEARCH  -- well, I'd be a millionaire.

We need more research is smoke and mirrors with money behind it.

When Sophie's seizures improved dramatically after giving her cannabis, there was a tiny part of me that wanted to kill myself for the regret. I'm a person who practices mindfulness, who believes for the most part that things happen in the right time, and I was able to allow that tiny thought to sit there but not overcome my larger joy. Since that time I've spoken at numerous events and told my story here, to consortiums of epilepsy professionals, to neurologists and Epilepsy Foundation board members. I've shared the stories of others in the epilepsy/cannabis world through my work and on this blog. I've been applauded and thanked, but my tiny little mother mind™ has also been openly mocked and dismissed.

We need more research is smoke and mirrors with money behind it.

I am upset and angry that I might have had this treatment for Sophie when her brain was more salvageable, when her life, my own life and that of her father and brothers had not been so irrevocably changed by the experiencing and witnessing of tens of thousands of seizures every single day for nineteen years.

Yeah, I know there are some of you out there who visit this blog and bemoan my anger, and I should probably not document any of it in real time, but sometimes it's the first step toward peace.

Regret, Anger, Peace.

Peace.

Dear Tina Turk, "Pharma Rep":

Something tells me that you're not really a Tina and might not even be a "pharma rep," but I'd like to give you the benefit of the doubt and will address you as so. After reading your interesting comment to me this morning on my last blog post, I have a number of questions that go beyond my perhaps knee-jerk, immediate response to the comment. I'm going to bank on you actually being a pharma rep and therefore hope that you'll visit here and perhaps respond, again. This being said, I do hope that you'll refrain from attacking me or my family personally.

I'll remind you of your comment:

I am a pharma rep and it really is not like that. You sound too angry and maybe you should help for that. Pharma has been ragged on too much, and it is not true. I feel sorry for you because that anger and bitterness is in your body and the only person you are hurting is yourself. I can see why some people in your family get upset with your rage.

My first question addresses your claim to being a pharma rep and "it" really not being like that. Like what? In the blog post and elsewhere on my blog, I've mainly written about my experience with "pharma," and whether it's paying $16,000 for a vial of ACTH or $949 for a 30-day supply of Onfi or going through the slow and torturous process of weaning a powerful narcotic from my child's 75 pound body, there are very few emotions other than despair and anger to express. I am perfectly aware that pharmaceuticals can also work powerfully toward the good, but other than writing some kind of caveat, I'm probably going to just write about my own experience and expertise. That being said, have you read the latest ten-part series on Johnson and Johnson? How about the story of just how the manufacturers of Oxycontin managed to saturate the market with their painkillers, snow physicians about their efficacy and contribute to the raging heroin addiction problem our country faces? I can write about that from experience, too, as I have several -- yes, SEVERAL -- relatives currently addicted to opiates and heroin. The goodness of pharmaceuticals has eluded us. So, when you say "it really not being like that," I'm interested to know what it's really like. I know for a fact, too, that other minds would love to know.

My second question refers to your assertion that I "sound too angry" and should get help for that anger. Thank you for that concern, if you are, indeed, concerned. To tell you the truth, I did waffle a bit about that post and asked myself whether it sounded too angry. I have friends and family who were very much helped by pharmaceuticals, by painkillers used at the end of life, by antidepressants and anti-anxiety medications, by chemo for cancer and so on. I am sometimes painfully aware of my anger, my biases and the ineffectiveness of being and seeming so. I feel conflicted about expressing my anger, but I also believe that anger to be a justified response to the hegemony* of our medical/industrial complex over those people who dissent. Perhaps it's also a response to the patriarchy's hegemony over angry women. It's completely and utterly justified in reference to the clusterfuck that is marijuana policy in this country. In any case, what would you have me do otherwise?

Finally, this isn't a question -- or even a defense -- but I am aware of the corrosive effects of anger as well as how, when directed wisely, it can galvanize and energize. I am gifted (by chance, by luck, by the universe) with a talent for stringing together words to express myself. I'm going to always strive for truth, for expressing the world and my life as I see and experience it. Sometimes, I'm going to sound like a bitch, a whining and spoiled first-world ingrate. I appreciate when people call me on that and promise to always accept that criticism humbly and work on it. Other times, I'm going to rage and rant despite the "anger and bitterness" in my body and take my chances on it "hurting" myself. Why? I'll answer that. Not a week goes by that I don't get a telephone call, an email or a comment on this blog from someone who is grateful for my expressing my experience because it so closely resembles theirs, and they don't feel so alone. That makes any slights to my body worth it.

My final question concerns your stated understanding of why some people in my family get upset with my rage. Dragging my family into it sort of blows your cover as concerned Citizen Pharma Rep. Or are you actually in my family, Tina?

Sincerely,
Elizabeth











*Thanks to my friend Allison Ray Benevides who taught me everything I know about hegemony. You can read her brilliant take on everything here.

House of Cards: A Whole Plant Manifesto

How do you follow up a post about the death of four children whom you actually know? Shouldn't there be a period of silence, of mourning?











Today, The New York Times published an article titled Marijuana-Based Drug Found to Reduce Epileptic Seizures. You see, the big guns at GW Pharmaceutical had been conducting studies, and these studies are confirming what we already know. Yeah, I think there need to be studies. I've got one going in my house and have been diligently studying for three years and seventeen years before that. One of the residual effects of dealing with all of this shit for so long is that I don't have even a fingernail's worth of trust in the system. And at risk of sounding like one of those crazy conspiracy people, I suspect all the big pharmaceutical companies are working their asses off to keep marijuana from being de-scheduled so that they can control the whole pie. Sorry about all the banalities, the pies and the fingernails, the houses of cards, but using trite language can be as effective and judicious as a good curse word.

I have learned that it's essential we talk about whole plant medicine. So, if you send me that article, I'm going to say, thanks, I saw it but I don't give a damn what GW Pharmaceuticals is doing. What I'm going to think is fu*k GW Pharmaceuticals and the horse it rode in on. Then I'm going to laugh my ass off over the big 'ole CDC announcing today that they are no longer recommending opiates for pain control.

Doctors Told to Avoid Prescribing Opiates for Chronic Pain

Meanwhile, I've had to halt the weaning process of the opiate that Sophie's been on for over eight years so I can give her a break from the agony.




What I do give a damn about is this story that I wrote for marijuana.com -- not my story, of course, but the story of brave and dogged people like Lindsay Rose Sledge.

A Passionate Mother's Reluctant Path to Lobbying.

On Being Beautiful and Angry

Tonight I dragged my sorry ass self, newly recovered from a cold and cough, to a screening of a remarkable documentary about the movers and the shakers of the feminist movement from 1966-1971. It's called She's Beautiful When She's Angry.

Wow, people. Just wow.

I watched the movie with a few hundred other women and a scattering of men in an historic building in Los Angeles called the Ebell. The women were of all ages and races. The movie is funny and moving and most of all, rousing. I feel such gratitude toward these women who came before me, who so doggedly and -- yes -- angrily demanded their rights as equal citizens. The movie isn't just about white, straight women but about all women, including women of color and homosexual women. It does an excellent job, too, of demonstrating that despite all the radical goings on of the time -- the anti-war movement, the student rebellions, black power, etc. -- women were left out and not counted even by these so-called liberals and radicals. I sat on a little hard-backed folding chair and laughed and teared up at the audacity of these pioneers and radicals, realized how much I take for granted and how much left there is still to do.

I felt galvanized by these women and their history, and I felt strengthened and more accepting of my own anger and radicalism -- not just about women's equality and, particularly, reproductive rights that are being whittled slowly away, but also by this cannabis movement and my role in it as, often, a quite angry mother in confrontation with an established power structure.

I received an email the other day from our local Epilepsy Foundation affiliate with an announcement of the annual Epilepsy Pipeline Conference in San Francisco. Last year, I attended this conference and was an invited speaker on a panel. I spoke of our experiences with cannabis and didn't get the greatest reception from the physicians and "professionals" in the room -- they were either dismissive or uninterested, one was downright hostile -- but I had numerous people come up to me privately and confide their gratitude that I had spoken so openly and honestly about our experience. One guy told me that when I spoke it was as if a bomb had gone off in the room and blown everyone up. I have to say that my ego surged when he said that, but deep down I was embarrassed, too. As a woman pushing against boundaries in the medical world (and it started long ago for me and well before the cannabis revolution began), I haven't always been confident. I'm even now not always confident, particularly when I am admonished for being angry. I've been called too angry, too outspoken, undiplomatic. Several relatives have publicly shamed me and called me a miserable person. Someone anonymous not too long ago left the condescending comment You're a great writer, but you're too angry. I'm going to be honest and say that those comments hurt me, that I hold remnants inside of me that dictate what a good girl is, what a humble woman does, what makes a lady, and that I'm none of those things.

This year's Epilepsy Pipeline Conference, as far as I can see (and the schedule could very well change), has no representation of cannabis as therapy except from a huge pharmaceutical company. This doesn't surprise me, and my initial impulse is to feel cynical and bitter. Now, don't think that I haven't done a lot of soul-searching, wondering if maybe I am too angry and combative, that I'm not going to ever be invited to speak at any of these functions again because I don't tow the party line. I wonder if I should be less angry, perhaps even tone down the truth of our story with the goal of persuasion. Is it better to tone it down and try to reach more people? Is it better to compromise one's truth?

Nah.

Watching this documentary and seeing what those women (and those before them who struggled for suffrage) did and how they handled oppression opened my eyes and strengthened me.

I am beautiful when I'm angry. You are beautiful when you're angry.

Here's a trailer for the movie:



Here's the website with information about screenings and the forthcoming DVD issue.

She's Beautiful When She's Angry

The Subversion of Quackery

WPA poster, 1936-1938

quacksalver

PRONUNCIATION:

(KWAK-sal-vuhr) 

MEANING:

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

ETYMOLOGY:

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.

Quack.

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.

Incantation

Oliver, my darling number three

... isn't that the conceit of mothers -- that we conceal our youth and exist only for our children? It is the province of mothers to preserve the myth that we are unburdened with our own problems. Placed in a circle of immunity, we carry only the crises of those we love. We mask our needs as the needs of others. If ever there was a story without a shadow, it would be this: that we as women exist in direct sunlight only.

When women were birds, we knew otherwise. We knew our greatest freedom was in taking flight at night, when we could steal the heavenly darkness for ourselves, navigating through the intelligence of stars and the constellations of our own making in the delight and terror of our uncertainty. 

What my mother wanted to do and what she was able to do remains her secret.

We all have our secrets. I hold mine. To withhold words is power. But to share our words with others, openly and honestly, is also power.

from Terry Tempest Williams' When Women Were Birds

I go back, over and over, to verses of poems and passages in novels and memoir that speak to me in the timeless way of touchstones. I've posted the above passage before, but it came back to me this morning when the border between yesterday and now was still blurry. When Sophie seizes, we say, over and over, It's okay. It's okay. It's okay. I say it as incantation, waiting for the seizure to stop, and then I gather her up in my arms and sit with her curled in my lap much as she might have lain when inside me more than twenty years ago. My softness envelops her but doesn't suffocate. I imagine it holds everything. Just like all paradox that we learn to hold as mothers of these children, inherent in that simple phrase it's okay, it's okay, it's okay is  holy shit, holy shit, holy shit. Acceptance and anger. Despair and peace. Wonder and disbelief. A long time ago my father gave me a check to put toward some treatment or another for Sophie that I've long since forgotten. He wrapped the check in a small piece of paper that I've kept folded in a little bag in my purse that holds other tokens and charms -- a sort of nest that I've woven and sit in, come back to, over and over. There's a New York City subway token, a small rock that Henry picked up on a nature trail overlooking Malibu and proudly gave to me, a cheap, beaded bracelet that Oliver made in preschool and the silver clip and pale pink ribbon that held Sophie's first and only pacifier, the one she spit out soon after steroids were injected into her body, her screams began and then were silenced, forever. She's never had words. The piece of paper that my father wrapped his money in and gave to me is smudged and soft and creased, the fine script barely discernible, words faded. It says, This is going to work. It's okay. His words. It's okay, it's okay, it's okay. The recent spat with the developer over felled trees, the admonition to be silent, to be less angry, less righteous, less expressive. Their words. To withhold words is power. But to share our words with others, openly and honestly, is power. And yes, holy shit, holy shit, holy shit. And it's okay, it's okay, it's okay.

 

 

 

Sunday Thoughts

We must become intimate with anger to clear the way to our connectiveness, to our vulnerability and an aliveness to everything. In the end, our anger is transmuted to wisdom, which in turn gives rise to compassion.

from Holding Anger, by Jules Shuzen Harris, Sensei in Tricycle Magazine

Last night I spoke on the phone for hours with my oldest friend, Audrey, who lost her husband on New Year's Day of a terrible neuro-degenerative disease, supra-nuclear palsy. We laughed together -- a lot -- even as we talked about overwhelmingly sad things, and I was struck by our long connection to one another, how comfortable it was to lie on my bed and listen to her familiar voice tell me stories, the story of her husband, his illness, his final days, her children's remarkable compassion, her own strength and ability to recognize her failings, the extraordinary love she carries and projects.  It's these things that tie me to the world.

I read Timothy Kudo's  beautiful Op-Ed piece How We Learned to Kill  and felt the sour taste of anger rise like bile in my throat, the absurdity of all of it.

I read the above quoted article about anger this morning and wondered where I was on the journey referenced -- intimacy -- connectiveness -- vulnerability -- aliveness -- wisdom -- compassion. Perhaps, like grief, these things come and they go, get mixed up with laughter, a sense of absurdity, even desperation, and then grounding.

A French Or Maybe Italian Movie

Moi, 16 months old and dead serious

About 6:15 tonight, after I'd dragged in a couple of bags of stuff from Target and a giant box of diaper wipes, after I'd realized that the cashier had not packed the red mat for the porch and that I'd have to go back to Target to pick it up tomorrow, after The Husband (yes, there's still The Husband) had put the food down on the table and The Brothers and The Husband began arguing about baseball statistics, not noticing the stink emanating from The Daughter whom I promptly took back to her room to change, and after I noticed that everyone was eating and no chair had been pulled up to the table for me -- well, just at that very moment after, The Angry and Very Resentful Woman took over my body. She hissed some very dispiriting words, something to the order of being sick and tired of this, just so sick and tired of this, and the Arguing Men and Boy looked dopey and confused and said What? but The Angry and Very Resentful Woman had enough sense to just walk away and out of the house into the rain  (the house was so damn hot! why is the house so damn hot?), and she lifted her face to the rain, the cool drops a cliche (like a French movie! or maybe Italian!), if she'd been sugar, she would have dissolved right there into a puddle, also a cliche, but she wasn't sweet, she was angry and resentful. There are reasons to be angry and resentful, and then there are reasons and more reasons, but reason never got angry and resentful anywhere. The Angry and Very Resentful Woman who had taken over my body walked back into the house and changed her wet shirt, lay down on her back and closed her eyes. It would take hours to quell it, and what's the good of subjugation (a remnant of the partriarchy, the mansplaining! she'd listened to it all day! the justifications for violence! the guns! that ugly little man named Paul or Rand or Ayn who married that tiny little girl who did poetry in motion in college when you knew her!)? What's the good of subjugating anger and resentment?

Better to lay your peasant body down alone, to unwrap your arms from the embrace that keeps them in, the anger and resentment, to spread your arms and embrace the space around your body, instead, to melt, to melt, the sweetness a puddle right there on your bed.

Listening to Ray Bradbury on the Ventura Freeway

There must be something in books, 

something we can’t imagine, to make a woman stay in a burning house; 

there must be something there. You don’t stay for nothing.

Ray Bradbury, Fahrenheit 451 

Since my carpool in the mornings fell through, I've been spending a lot of time in traffic on one of Los Angeles' most notoriously congested highways. The ride to Henry's school is manageable, but the ride back can take more than twice as long, and it's difficult not to feel rage rising up, the rage that is born of rue for choices made. Something about the silence of cars, the endless glint of steel below the bluest of skies tinged pink with a still rising sun, the muffled horns and set faces of the inhabitants makes for desolation, at least for me. Why do I live here? I can't listen to music. I can't listen to the talking heads of commercial radio, nor the droning ones of NPR, and while I've learned to surrender my rage, to breathe deeply through it in a sort of mindful daze, it's been the husky voice of Tim Robbins reading Fahrenheit 451 that's literally erased it, turned frustration and a self-absorbed samsara into -- dare I admit it -- anticipation of more hours spent on the road listening?

Yes. I'll say it. Since I've been listening to the great actor Tim Robbins read the great writer and human being Ray Bradbury's sinister yet beautiful masterpiece Fahrenheit 451, I look forward to getting into my car every morning at 6:45. I spend the first half hour in the passenger seat with my son Henry who is earnestly and quite capably learning how to drive. After I drop him off, I spend the next hour or so, along with millions of other humans, sitting in my sexy white Mazda inching south on the Ventura Freeway, and listening to the riveting story of Guy Montag. I read Fahrenheit 451 a million years ago, and despite a memory like a steel trap, I honestly don't remember it other than the burning books stuff. I don't know if it's the time in my life, my stifled, seeping-out rage, the city I find myself struggling in or just the damn exquisite prose and grim prescience of the story, but listening to this novel is knocking my Birkenstocks off.








***Disclosure: Audible gave me a free download of the book but with no obligation to write about or review it. Thank you, Audible, because I know I never would have done so, and I'm grateful to not only avoid the extreme frustration of navigating the highways of Los Angeles, but Bradbury's novel is a work of art that I'd forgotten. For anyone interested, exclusive audio excerpts of these new Audible Studios Bradbury titles are available at www.soundcloud.com/audible.

Homeland Security Resolution, The Mad Hatter, Medical Marijuana, Guns, Vanity, Gay Teletubbies and Some Appropriate Cursing

So, it turns out that one of my wonderful readers and commenters works for Homeland Security, and she confessed to scrolling through my blog yesterday on her time off -- hence, the mystery is solved.

Dang nabbit. I was feeling all self-important.

Today, though, I am going to be photographed with Sophie for a newspaper article about medical marijuana in California. Late last night I confessed to another extreme parent who was on the East Coast (up with her child way, way past midnight) that I was terrified to be photographed lest I look bad or horrors upon horrors -- heavy. I hate that word, by the way, and have forced myself to say it. My friend S, despite the grueling nature of her day, her night, her life, actually, sent me the following photo of what I should wear:

That's called The Mad Hatter Costume. I laughed so hard I almost fell out of my chair. My friend also typed that she wished she had the wherewithal to be more publicly outrageous than she is, and that made me laugh hard as well. Given the circumstances, I wish that I were, too. The truth is that while I'm happy to be interviewed, happy to tell our story, fired up to advocate and help others who need this information, there's a certain part of me that's as pissed off as one can imagine -- or maybe not just pissed off but freaked out, overcome by absurdity. I'm angry that it took nineteen years to stop Sophie's seizures despite this plant being available -- with evidence that it might very well help. Let's call off the Jesus stuff and the miracles and the feeling all joyous and happy now that Sophie's seizures are reduced dramatically. I'm angry about the clusterfuckery that is the American healthcare system -- angry that people opposed reforming it, angry that it's still entirely inequitable, angry at the buffoons in my home state of Georgia who think it's oh so American to carry a concealed weapon around wherever you please but good golly miss molly not the evil weed! I'm angry that my friend from Wisconsin had to work her fanny off to get the almighty lawmakers to pass a bill -- last night! -- making it easier to get CBD for children like her daughter who has had seizures for a decade, part of her brain removed and countless meds poured down her throat yet my friends here in Los Angeles can suck on pot lollipops at hipster restaurants. And yes, I thinnk marijuana should be legal for even recreational use.  I'm angry that I'm nervous we might not have a steady supply of Charlotte's Web, that I'll have to grovel for it. I'm angry with Big Pharma, with The Man, with capitalism, with the Tea Bag Party and the damn libertarian ship it floated in on, with The Way Things Work. I'm angry with my anger. And I'm angry that seizures are so vicious, that they've damaged not only my daughter's brain and her quality of life but our family -- my sons, my husband, me.

Hell, I'm angry that I'm not still thin, too.






Well, damn this whole shebang. And my own vanity.

I'm wearing this: