We the people

That's the last bit of sangria that I drank just up the street and around the corner from my house this evening. I sat at a large booth by myself and drank it, along with some mussels, french fries and a grilled artichoke whose leaves I smeared in aioli.

I wish you'd been there.

I've gone all day without sitting here. I've been looking at the jacaranda trees whose purple flowers hang in grape-like clusters. People love to complain about them -- their rotten smell, the mess they make, the sticky layer of them on the sidewalks -- but I think they're fine. I could drink that purple, roll in it naked and glorious. And no, that's not the sangria talking. It's just me, making purple prose.

Oliver and I are exploring the American Revolution, the Constitution of these United States, the amendments to the constitution, all that we the people. To tell you the truth, reviewing it all makes me a little sad. Such glorious ideals, such purple prose, such disconnection from what we have and know today. Money and influence, the triumph of oligarchy -- it seems, in many ways, that the whole democratic "experiment" has gone to shit. I don't even know how to explain these things to Oliver other than to convey that there's much for his generation to do. I have to bite my tongue not to say what I feel, which is more often than not, we're f**ked. 

I hesitated to do so (because it's so de rigeur to be tired of people's postings on social media), but I posted a link on Facebook to an article from the Washington Post that I read  -- an article where Mr. Martinez, the father of one of the victims of Sunday's murder spree in Santa Barbara, angrily denounced politicians and the NRA for their collusion in refusing to pass more stringent gun laws. Martinez was glorious in his grief and righteousness, and I hope that given his military service and criminal justice background, he might knock some sense into these craven people. I feel compelled to join him, to curse and rail at anyone, anyone, who claims owning guns like the ones used by this young man is part of the liberty we are entitled to as citizens of the United States. The misogyny, the mental health debate, the disaffection of our youth --yeah, these are all part of it, but this gun bullshit has got to stop. As Henry said when he heard that my home state of Georgia had passed laws allowing guns into most public places, Sometimes I hate this country, mom. We the people are stupid.

What are ya'll thinking about? Drinking? Posting? Fire them at me -- just not with guns.

Medical Marijuana, Endearments and The Washington Post

At the Ballard Chittenden locks, Seattle, Washington
February, 2014

This morning, I opened an article in The Washington Post with this title: 'Mommy Lobby' Emerges as a Powerful Advocate for Children. I wouldn't be going out on a limb, here, when I state how demeaning I find this title, much less how inept. First of all, I worked for years as a parent expert with national organizations dedicated to improving the access to and quality of healthcare for children, and as both a leader and collaborator with other parents and a mother of a child with special healthcare needs, I can state with much confidence that most of us don't like to be called mom or mommy by the medical establishment, much less a newspaper. Secondly, the lobby consists of fathers, too, particularly out here in California where single fathers of children with severe epilepsy have served as pioneers for their children and their access to medical marijuana. The fact that this lobby of impassioned parents is reduced to the title mommy lobby underscores some of the most frustrating problems with our hierachical medical/pharmaceutical establishment, particularly the lobby's need to nearly BEG for something to happen.

The rest of the article is informative in parts, but not one single mention of the relative inefficacy of FDA-approved drugs for tens of thousands of children with epilepsy is mentioned. I didn't see a single mention of the combinations of drugs that our children are subjected to, either, their often vicious side effects, and the FACT that many of them have mechanisms of action largely unknown. It would seem, by the article, that mommies are standing in front of legislatures all over the country and begging for lawmakers to help them to save their childrens' lives and their families' quality of life, while other mommies are heroically dropping this scary, unknown substance into their witless children's mouths. Nowhere in the Washington Post article is any sort of acknowledgement or even deference to the grotesque inadequacies of current treatment for refractory epilepsy, the labyrinth that many parents have navigated to get "approved" treatment, the serpentine path from diagnosis to adequate care, nor the enormous expense of the almighty FDA-approved medications that our physicians have, basically, thrown at us after a selection that conjures images of a dart game in a bar.

I don't have any answers to this and feel blessedly grateful that I live here in California, was one of the first people to obtain Charlotte's Web for Sophie and that it has helped her dramatically. I will tell you that I feel increasingly enraged, if not surprised, by the response of the medical establishment and the media to this groundswell. I'm powerful, but I'm not a mommy, and because this is my blog and my platform and not a reasonable place where I have to work rationally in front of the Powers That Be, I'll tell the Washington Post this:

You can start by speaking with veteran parents of the epilepsy world about what they've experienced for decades. You can acknowledge that parents begging for treatment from their legislators is ridiculous. You can stop using phrases like mommy lobby.

Oh, and as the incomparable actor Matthew Mcconaughey's character says in Dallas Buyers' Club (who fought similar battles during the early AIDS years): Fuck alla ya'll.