May Her Memory Be a Revolution

 

What more is there to say? We all wept yesterday when we heard the news that RBG had died. We all felt sorrow that she had hung on for us, for the country, for the ideals that she had fought for so long. We owe her so much.

What moves me most about yesterday's news was learning that in the Jewish tradition, a person who dies on Rosh Hashanah is a tzaddik, a person of great righteousness. They are the ones that God takes at the last moment because they are needed most. Even the earthquake that shook us all out of sleep last night here in southern California seemed righteous. 

Re-fuel.

Be Ruth-full.

Don't give up.

Atonement

Los Angeles, CA
May 31, 2020

It is bigger than everything and anything, what is going on. No question mark. On this beautiful Monday morning I sit in my dining room, my view an expanse of green and sunlight pouring in from the east. A spiderweb glistens, its threads loose, wavy, the air so clear I see gnats eluding it. We have so many hummingbirds this year, and I think they are the air's dolphins darting friendly so much that is good to sip. I'm thinking about atonement and whether this country our country will have the strength to work together as a collective to atone for the brutality upon which we were founded and continued through centuries all the way up to now with children in cages, the disabled having to beg for help, the elderly left to die alone, the dead bodies of children piling up, the dead bodies of black people piling up, the healers in dirty masks. Yet so much bounty. This country taken from those that lived here for thousands of years and then built on the backs of the enslaved. The delusion that is the American dream. The vast inequality. Age-old. The center cannot hold. There is something beyond intense watching hordes of young people break through glass only to grab boxes of shoes and luxury bags. The backs of their heads, their heads in hoodies. I can't get the white girl with the skinny legs and pink hair out of my head. Skateboards used to smash windows. The tank rolling down the street of pristine houses, men in riot gear hanging off, headed to where? I saw a man with a box on his shoulders, clothes wrapped in plastic dropping out of it as he ran while others watched. So much heaviness and anger and wildness in the scrawls of letters across buildings. So much desperation. How paltry in comparison to the plights of other countries, other peoples. Or is it?

The beauty of those who swept the glass and scrubbed away the ugliness. The Korean councilman, the Orthodox Jewish rabbi, the teenaged girl, the black man.

I want to write something funny. Something absurd. Something to tell the truth. Something to evade the truth.

Fight the Power*

That's Sophie, and when her mind is clear and the seizures at bay, she can stare right into your soul. New readers should know that despite 22 medications and treatments, Sophie found no relief from tens of thousands of seizures over the first nineteen years of her life. When she began using Charlotte's Web in late 2013, her seizures lessened dramatically and that gaze became ever more penetrating and knowing. We're one of those families you've been hearing about, a family decimated by two decades of uncontrolled seizures, vicious side effects from powerful FDA and non-FDA approved antiepileptic drugs and then a radical reduction when cannbis oil is introduced.

Sophie is not alone. There are thousands of children like her, but they do not have access to CBD.

As her voice, I'm going to talk a little here about what's going on in Washington regarding CBD and hemp. There is a meeting on Wednesday, June 24th to determine the fate of CBD. This is the meeting of Senate members called the Caucus on International Narcotics Control. The Senate Caucus on International Narcotics Control was created to monitor and encourage against drug abuse and narcotics trafficking and to monitor and promote international compliance with narcotics control treaties. 

As you can imagine, that's one scary and powerful group of senators.

How would something so benign as CBD end up in their caucus? Here's a metaphor: We're all in a giant swimming pool, swimming in our carefully marked lanes. The Stanley Brothers are just one swimmer in that pool, along with countless other people growing and making hemp products. There's lots of room. Pharmaceutical companies, namely GW Pharmaceuticals, a British behemoth, has a lane, too. They've working on Epidiolex. That's fine. They should have a lane. The really extraordinary swimmers, the lane where all the action is, though, is not this giant pharmaceutical company. The lane that literally came out of nowhere is our lane, and it's made up of hundreds of families whose lives have been changed by CBD -- whether it's Charlotte's Web or any number of strains of high CBD/low THC products. Keep that image in your head.

Here are some facts:

1. CBD and Hemp should be regulated as dietary supplements due to the very low toxicity (LD:50 (lethal dose rating) of 1:40,000 compared to aspirin at 1:20). These products already fill our store shelves in all 50 states with known amounts of THC (less than 0.3%) and unknown quantities of CBD. 
2. There has already been research to establish that 1500 mg of CBD daily was well tolerated in humans.
3. 17 states have passed cannabis legislation since February 2014. That's 16 months. All but three of those are high CBD/low THC legislation. This is an example of the extreme need of this underserved population.

Who do you think is the strongest opponent of this process?

The strongest opponent of this process has been pharmaceutical companies, namely GW Pharmaceutical Company who stands to lose a large part of the market if CBD becomes a dietary supplement. In some states like Alabama and Florida, GW Pharmaceuticals is actually using state funds to pay for their expensive trials.

You do not need legislation to do a clinical trial. This could very well be a serious misappropriation of state and health department funds. Do you want your state paying the tab for a gazillion dollar company?

Here are some more facts:

1. GW Pharmaceuticals partnered with Bayer HealthCare, a subsidiary of Bayer AG. Bayer was on the original ALEC committee that introduced the original medical marijuana legislation back in the mid-noughties.
2. ALEC is the American Legislative Exchange Council, and is just one of the ways that Big Pharma lobbyists write and influence laws in their favor. 

Hmmmmmmm. 

Apparently, GW Pharmaceuticals is fine with cannabis legislation and efforts that would help them to line their pockets, but it's a stretch of the old imagination to imagine them wanting families to get access now to keep their loved one alive, especially if it cuts into their lane. 

We're talking about room for everyone, here, a lane for all swimmers. GW Pharmaceuticals wants the whole damn pool.

At risk of sounding like a conspiracy theorist, let me tell you something.

1. Parents' stories are being discredited. Just think of the disparaging remarks about placebo effects that Dr. Amy Brooks Kayal made on the Dateline special. We are, evidently, a bunch of crazy parents who can't properly count seizures and evidently have voodoo powers to regulate EEGS (that's sarcastic, of course).
2. Doctors who are supportive of CBD are discredited and frowned upon. There's a party line that is being pushed.
3. They're using propaganda to destroy the quality of the product, throwing around the term "artisanal" with the implication that we need the pharma model (despite the fact that we've been safely using cannabis for 1000s of years without that broken model)
4. They're attacking the safety of the product and of the compound in general.
5. In pushing for more research, they used unknowing and inexperienced families with promises of enrolling their children in the trials to push their agenda.
6. In pushing for more research, they're pushing the dosage of the product so high in trials that it creates negative events (so far, diarrhea). It seems to me that they need to prove that this can't exist as a dietary supplement.

Expect them to run their public relations and marketing campaigns (the pharmaceutical advertising budget is in the tens of billions) next on the basis of how wonderful their companies are, and insurance companies will follow suit, covering this "orphan drug" that will reap them untold profits.

In the proverbial nutshell, it looks like Big Pharma wants the whole shebang. It wants CBD to be a pharmaceutical. It's some scary shit.

As people who have been hurt again and again by a broken pharmaceutical system, we will not allow this to happen. You can't allow this to happen. If you think you don't care about CBD, that it's a limited component and that CBD legislation is destructive, think again. I hate to say it, but mark my words: these people will come after THC next. Can these powers be more powerful than the people? They are proving to be so.

We are Sophie's and countless other kids' voices, and we're swimming in a very big pool. We might very well get kicked out this week. Please help us fight for access. This is not about THC. That's another very worthy fight. This is about access to cannabis. It's about fighting the power. It's about doing the right thing. It's about being able to look back into your child's eyes and have them look right into your own soul.

Coalition for Access Now



*This post was co-authored by Heather Jackson, Executive Director, Realm of Caring Foundation

Dispatch from the Revolution: Cannabis Update

Sophie continues to do remarkably well after nearly four months on Charlotte's Web. She goes weeks without any truly discernible seizures (she used to have from 1-5 tonic-clonic episodes and many partial complex/absence a day), and the breakthrough ones are mild and short. She has no more clusters of myoclonic seizures (they used to happen several times a day and lasted, sometimes, for 45 minutes or more). We have done three weans of her Onfi, the benzo that she's been on for six years. We've reduced the drug very slowly, about 33%, and the difficulties she had formerly, whenever we weaned a benzo, have just not happened. Yes, she's had some "bad" days when she appears uncomfortable and agitated. She has had some mild withdrawal seizures on around the tenth day of the wean, but for the most part she is good, and I attribute that good to the presence of cannabis in her system.

I listened to a podcast the other day of Dr. Orrin Devinsky from NYU. He was quite positive about cannabis and epilepsy, albeit cautious, and seemed far more understanding of families' desperation and desire to obtain the medicine for their children with refractory seizures than he was a few months ago when he wrote an Op-Ed in The New York Times. He even went so far as to state how "promising" the treatment looked. The Epilepsy Foundation of America has been surprisingly supportive of families (part of its charter and mission, after all), so I feel hopeful, too, about that. I type all of this, though, with reservation, because I also sense a growing rift between neurologists (The American Epilepsy Society), who remain obdurate and arrogant, and families, and this rift is sensed as a rumble, a muttering, an antagonism inherent, it seems, in the industry (because let's face it, medicine as it's practiced in this country is as much if not more an industry than a healing art), despite all the efforts for "family-centered care." I've heard of neurologists, still, completely disdainful of this therapy, towing the party line of testing, testing, testing, with a couple arrogant dismissals of "anecdotal" evidence.  And I've heard from several people whose neurologists are downright abusive, going so far as to call some parents uncompliant and reporting them to "authorities," making it difficult to get traditional medications for their daughter and other horror stories.

Anywho.

Here's Sophie's story -- call it anecdotal or call it Truth. It makes no difference to me what you think, what they think.

I know it's truth.

Sophie never had a day free of multiple seizures for the first nineteen years of her life and was subject to all manner of approved double-blind tested placebo controlled and studied drugs. Many of these drugs were not approved for use in children under the age of seventeen and most were not studied for long term use in combination with multiple other drugs. She was on nineteen different medications, was evaluated for surgery, had two six month trials of the ketogenic diet. She suffered from serious side effects from nearly every medication and endured considerable suffering when medications were withdrawn because of inefficacy (including one rare complication called pseudo-tumor cerebri -- look it up, not for the faint of heart). She took medications to mitigate side effects, went through several periods of anorexia and sat for hundreds of hours with an IV drip of immunoglobulin. She began taking Charlotte's Web in late December of 2014 and within a few weeks of treatment had periods of seizure free days for the first time in her life. Side effects noted were smiling, alertness and relaxation. When we knew things were looking "up," we began a slow process of weaning her from one of the two powerful anti-epileptic drugs that she's been on for years (and only on for years because we were afraid to withdraw them and put her through that shit). So far, she's off more than 30% of a powerful narcotic and continues to have large stretches of time free of debilitating tonic-clonic seizures, partial complex seizures and myoclonic clusters. We have not used Diastat, the Big Gun, in months. We will continue to slowly withdraw the benzo and then, hopefully, the Vimpat. If she continues to do well, the world is our oyster, no? Or is it the pearl?

How's that for anecdote?

Revolution, Part One

I googled female revolutionary and got a whole bunch of women with guns and rifles. There were lots of photos of glorious women in robes and glamorous women from southern countries. I got lost for a bit on a website that featured vintage Chinese photos. I didn't want a photo of a woman with a gun, though, or even a weapon. I really didn't want anyone standing over someone bound. Then I came upon the photo above and I clicked and copied its url, fed it into the post and am writing around it. I've been thinking about revolution of late as it pertains to this medical marijuana business, how it's unfolded, how I can hardly open the computer or a paper or turn on the television and not see something about it. That Sophie is taking a less than ideal tincture that appears to be doing something and that this something is something positive and that we might be on the forefront of something revolutionary is -- well -- unsettling. I feel compelled to speak in code when I speak of it, not just the stuff itself but the success of the stuff. That's the Italian in me, I suppose, the peasant. The stuff itself feels transgressive, and so does the success. I think of the legion of children drugged in our schools, drugged and dazed and hyped up. Legally. I think of revolution, being on the edge of one. I think first of stripping, of being naked, being naked the expression of ecstasy. The archetypal nightmare, though, the dream, is of you, naked, in a room, walking down a hallway of a school. You thought you were clothed, only realize it when someone points and then everyone is pointing. You wake up panting and lie down. It was only a dream, you think, relieved, a nightmare. 

I type, blinded.

A riff on education, privilege, my son Oliver and revolution

OUR EDUCATIONAL SYSTEM IS ROOTED IN THE INDUSTRIAL AGE. IT VALUES PUNCTUALITY, ATTENDANCE, AND SILENCE ABOVE ALL ELSE.

from How a Radical New Teaching Method

Could Unleash a Generation of Geniuses by Joshua Davis

So I've written a lot about my twelve year old son's struggles with school, with learning, with dyslexia, with learning disabilities, including auditory and visual processing. None of that writing has been particularly substantial and only barely touches on the depth and breadth of the problem, of the level of hatred that he expresses for school, of the tears, the tantrums, the sturm und drang. I've also written extensively about Oliver's uncanny ability to perceive the world and the people around him, about his curiosity, his intelligence, his sense of humor and his hilarity. I know in my heart that he will be fine -- in the long run -- but just how arduous that run is remains a question, and not just how arduous but whether the arduousness is even warranted.

Right now, I believe on a deep, gut level that it shouldn't be this hard.

Today I spent a good part of the morning researching home-schooling and also looked into a number of alternative schools. Quite serendipitously, a dear friend of mine sent me the article from which I quoted above -- click here, and you can read the whole thing. 

I'm shaking things up, for real.

The other day, I got an alumni magazine from the private school that I attended in Atlanta, Georgia for middle through high school. While I value the education I received back then and know, particularly in English and writing, that it helped me to become the writer I am today, I was appalled by a letter included with the magazine that asked alumni help in the current capital campaign to raise $88 million by 2015. I believe they are close to $75 million and need only close that gap of $13 million in three more years. 

ADVISORY: Language from here on out could be offensive to some.

Here's my response: What the fuck?

I can hardly go into what all of this means to me -- the enormous and ever-growing disparity between the extremely wealthy and those who have less and then even nothing. What is my alma mater buying with this sort of endowment? Are these children better educated and more prepared to succeed when they're finished? What is the measure of success? Where does it end? 

Again, what the fuck?

I might be starting a mini-revolution here at chez Crazy where the disabled and the abled live side by side, where the Catholic school boy rubs elbows with the revolutionary and where the primary caregivers live forever. Stay tuned or tune in with your own riffs.

If there must be trouble, let it be in my day -- Thomas Paine

Yes, I've been reading, albeit cursorily, about the folks "occupying Wall Street," and I have a neighbor friend who's actually participated in some of the rallies here in Los Angeles. Everyone who reads this blog knows where my political persuasions lie, but lately I've kept my head in the sand, deeply depressed, to tell you the truth, more convinced than ever that we're living in a plutocracy, or perhaps an oligarchy but certainly NOT a democracy. My family is struggling mightily -- and I have to say that while the stress and grief and loss that accompany being the parents of a child with severe disabilities takes its toll, behind that stress and grief and loss is overwhelming love, love that makes it all bearable, all the time.

Behind financial and economic stress is literally nothing, a black hole, a gaping maw, a terrifying void.

I don't know why this is, but it is.

I'm moved by the photos of We Are the 99 Percent that you can see here.  There's this one:

and this one:

and I'm educated by Hendrik Hertzberg's article about the movement in The New Yorker.


Here's an excerpt:

The process, not the platform, is the point. Anyway, OWES is not the Brookings Institution. But its implicit grievances are plain enough: the mass pain of mass unemployment, underemployment, and economic insecurity; the corrupting, pervasive political influence of big money; the outrageous, rapidly growing inequality of wealth and income; the impunity of the financial-industry scammers whose greed and fraud precipitated the worst economic crisis since the Great Depression; a broken political system hobbled by a Republican right willing and usually able to block any measures, however timid and partial, that might relieve the suffering. 




From the introduction to We are the 99 Percent:


They say it’s because you’re lazy. They say it’s because you make poor choices. They say it’s because you’re spoiled. If you’d only apply yourself a little more, worked a little harder, planned a little better, things would go well for you. Why do you need more help? Haven’t they helped you enough? They say you have no one to blame but yourself. They say it’s all your fault.


And here:

The American Dream is not to become rich. It is to see the fruit of your labors, whatever they may be. It is to EARN your rewards. But Corporate America has taken the rewards away. All that is left is work and desperation. (Or no work, and even more desperation) A home, health insurance, providing for your children, giving them a future…those things SHOULD be attainable.  But unions are gone or ineffective. Politicians are corrupt. The Supreme Court values the speech of corporations over those of the people.  Jobs are taken overseas. 

“These are the times that try men’s souls.” Thomas Paine said that.  He also said, “If there must be trouble, let it be in my day, that my child may have peace.” 

And there's this astonishing article.

There's something very different going on here -- it's not scary to me as much as inevitable. Dare I say exciting? Hopeful? Possible?


What do you think?

Despite yesterday's pot post,

I'll ask today that you join in the Dignity Revolution. After all, part of the reason why we're all driven to the Caregiver and Lounge is because our children are often not treated with dignity and we're all half out of our minds constantly caring for and advocating in a system that seems contrived to work against us in nearly every single way.


Read The Bitter Truth by Tim Shriver, Chairman of Special Olympics and a fine spokesperson for persons with intellectual disabilities.