Monday, June 8, 2015

My NBC Dateline Notes and the Ode to Santos Dumont

Sophie at the late Chris Burden's Ode to Santos Dumont

First, and above all, how rocking cool are those Stanley Brothers? I know it's heretical, especially given their evangelical roots, but honestly, I'd be tempted to follow Jesus and the Apostles again if he were Joel Stanley and his band of brothers. That awesome female biochemist could be Mary to my Magdalene, too.

Secondly, how strong and rocking cool is that Paige Figi? And those women who lobbied the Virginia legislature? And their beautiful kids, the brave soldier with PTSD, the man with multiple sclerosis who threw his bag o'pharms on the floor?

You watched it, didn't you? If you missed the Dateline special, Growing Hope, you can still help out by supporting the Coalition for Access Now. Click on that link, and you'll be able to access your own legislators' emails and telephone numbers to express your support. I myself have just returned to the lobbying efforts. I had a hiatus, mainly because I despise lobbying and fundraising. It's very difficult for me to plead legislators to do the obvious. Unlike Paige and the women profiled on the show, I get stuck and fixate on -- well, for instance,  -- what appeared to be an entire Virginia legislature of white men in suits. Those guys did the right thing, but it's so hard that we have to literally beg for this stuff.


I'm girding my loins and calling the very estimable Senator Feinstein on Monday morning. She's decidedly not a white man in a suit, but she's said some worrisome things, and we need to tell her what we know. We need to share our stories. We need to plead with her. We want her to co-sponsor the Therapeutic Hemp Medical Access Act of 2015 (S.1333). Anybody out there who has an in to her office in Los Angeles or San Francisco? Please email me if you do.

Now let's talk about the proverbial thorns in the sides.

Thorn Number One in the Dateline special might be Dr. Amy Brooks Kayal. She's an epileptologist and the present head of the influential American Epilepsy Society. I recently read a letter she wrote to the governor of Pennsylvania, expressing her displeasure over any legislation favoring the legalization of CBD. At some point in the special tonight, she pointed out that parents are subject to the placebo effect and might be over-stating their children's response to Charlotte's Web. You might remember the doc at the Epilepsy Brain Summit that I sparred with said the exact same thing.

It's the Party Line.

I did the same thing that Mrs. Braddock did when Benjamin announced his marriage to Elaine.

The placebo effect argument drives me insane. I understand the power of the placebo effect, and I also find it interesting that the families who uproot themselves and move to states where cannabis is legal reportedly claim more success, but I question that research itself. Has anyone at the University of Southern California Neurology Department, other than my own wonderful neurologist, ever expressed any curiosity about the awesome success Sophie's had with CBD? Have they at UCLA where Sophie was treated for many years? Do they want to know? Has anyone done a study on revolutionary treatments and doctors' stubborn refusal to acknowledge change? When these doctors bring up the placebo effect, it stinks of patronization. I think of deer caught in headlights or steady blinking in the face of light. 

They're not used to light. Bless their hearts.

Later, I engaged a bit with some other thorns -- those whoo I guess are called "haters" in the medical marijuana community. These people are, ironically, in the community in that they have loved ones who benefit from marijuana, but they consistently put down the Stanley Brothers, Realm of Caring and Paige Figi. Their concern is that CBD-only legislation will hurt the larger cause of making whole plant marijuana legal. They have some valid points, but they're often strident and make wild accusations. I know they're wrong. Just two years ago, I was wandering around Los Angeles looking for a product to give Sophie here in Los Angeles. We're now about to push through, hopefully, a bill in the federal government that will deschedule hemp, making it accessible to every citizen in every state, regardless of that state's marijuana laws. It's a small step, and it doesn't solve the larger problem of making sure that accessible natural plant medicine, including THC, is available to everyone who needs it. Cannabidiol alone is not a cure for everyone. There is much tweaking, and some people only see success when they add in THC and/or THCa. Some people are on so many antiepileptic drugs that success is elusive. It doesn't work for everyone, but there are thousands of children who need to try the product right now, who literally can't wait for what I believe will be the eventual legalization of marijuana on the federal level.

Enough thorns.

Today, I took Sophie over to LACMA to see the late Chris Burden's installation titled Ode to Santos Dumont. The museum states that the installation pays homage to ingenuity, optimism, and the persistence of experimentation, failure, and innovation. Inspired by Brazilian-born pioneer aviator Alberto Santos-Dumont, widely considered the father of aviation in France, the kinetic airship sculpture was recently completed after a decade of research and work by Burden.

It's a strange and wonderful installation -- a sort of translucent dirigible that is put into motion in some complicated way and then floats around the room for a bit in a constant sixty-foot circle. Sophie and I stood with a crowd of people and watched the beautiful thing float around and around. We were all mesmerized. The explanation on the wall states that if the airship were to deviate from its sity-foot circle, the geometry of the tethers would force the balloon to turn in a smaller, tighter circle, which would cause the motor to work harder. The thing always seeks the sixty-foot circle, the path of least resistance or the sweet spot. 

How beautiful and resonant the Ode to Santos Dumont with Sophie, to this work we have ahead. 

May we all find the sweet spot.


  1. I watched with rapt attention, Elizabeth. Thought those parents of the children suffering from seizures, sometimes hundreds a day and more, were heroes.
    As far as the doctor, just after Dateline ended when I was channel surfing I heard an ad, which I didn't pay much attention to, but when I stopped fast forwarding I heard the final sentence of the ad. "Long term side effects are not known". To my way of thinking most drugs are thus. No one has done a 75 year study on them, or have they and I missed it? She didn't sound convincing to me at all.

  2. You make me wonder if my sister's doctors have ever considered cannabis to stop her epilepsy. Some of the drugs they put her on make her more aggressive. I'm guessing that might not happen with cannabis. Like the previous commenter says, she's been on so many drugs anyway, I'm sure they have side effects, too.

  3. That artwork is fascinating.

    I'm sure it's frustrating and infuriating to deal with bone-headed lawmakers, but your dedication to this cause is a wonderful thing.

  4. It's been quite a journey to find that sweet spot but I'm ever so hopeful we will!

  5. Blogger ate my comment. Basically what I said was- that doctor sounded like an ass and I doubt she convinced anyone with that bullshit.
    And that the Stanley brothers are cowboy rockstars.
    And that you are too.
    I thought the program was very well done. That moment when the guy dumped all his pills on the ground was most enlightening. Very excellent image.

  6. The tide is turning. And thank you for the description of the "Ode" piece - it interjected some harmony into my morning. Lovely image.

  7. I watched it. Wow. I never knew. I had never seen a seizure. I didn't know what you go through, daily. Eyes wide open, now.

  8. Not sure if you keep up with laws across the country, but MN went legal June 1st. The product is ready for distribution, not a great selection, but CBD and THC products available. However, only a handful of doctors are willing and/or being allowed by their clinics to certify us. Supposedly the Dateline special was supposed to air on our local news station and was cancelled. I called the television station and they don't even answer their phones. Conspiracy? It's heartbreaking and frankly unbelievable the powers that be don't care about the suffering. GRRRR.

  9. Have joined the Coalition for Access Now and sent a letter to my Utah representatives.

  10. I appreciated the Dateline episode. We just moved from Virginia so I know most of the moms and they are great women who have helped me a great deal on our Dravet journey. I always appreciate when I see you take a stand on some of the FB cannabis pages. It's one thing to argue against CBD laws its another to bad mouth and sling names through the mud. I totally get the argument and anger for CBD only laws. I'm frustrated too here in Utah where I'm finding I will need thc/thca and can't get it but I know without a doubt CBD only was the only way to go. Anything else would have failed. We are hoping to expand it next year and add in THCA. It's better than nothing. As for the placebo effect comment that really got under my skin. Families in Utah just had to submit our success and failure stories and most of them are overwhelmingly positive, some of them miraculous even. I guess all these parents are just making this up? And my own nuero when I tell him what success we've had all he ever says is how about we add in Onfi. Uggg, makes me want to scream.



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