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.

Sigh.

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.

Coalition for Access Now.

Don't Forget to Watch Dateline Tonight!

Some of the incredible team working on the Dateline documentary (photo from Paige Figi's FB page!)

Don't forget to watch NBC's Dateline tonight. The special is called GROWING HOPE.

Don't forget to TAKE ACTION!

Coalition for Access Now

Complacencies of the Peignoir*

Enter the Mermaid Room

Instead of around the neck, drape scarves over doorway stains.



I lay in bed this morning, casual. When she screamed a thin, long nearly ecstatic sound, I knew it was a seizure. You know what we do. Later, I told a friend, and she asked whether I was scared. No, I said, I am hard and resigned.








While listening to another person (not Lou) sing take a walk on the wild side, sit at a light in Silver Lake and look forward. A flock of birds flies over, maybe 50 of them, their wings casting shadows. They circle and swoop. A convention that settles on a wire. Birds on a wire. Why? Is their path ordained or are they, pardon the pun, just winging it?





Too Many Birds






The Everyday Enchantment of Music

A rough sound was polished until it became a smoother sound,
which was polished until it became music. Then the music was
polished until it became the memory of a night in Venice when
tears of the sea fell from the Bridge of Sighs, which in turn was
polished until it ceased to be and in its place stood the empty
home of a heart in trouble. Then suddenly there was sun and the
music came back and traffic was moving and off in the distance, at
the edge of the city, a long line of clouds appeared, and there was
thunder, which, however menacing, would become music, and the
memory of what happened after Venice would begin, and what
happened after the home of the troubled heart broke in two would
also begin.

Mark Strand












*One of my favorite phrases, from the poem Sunday Morning by Wallace Stevens

Not a Saturday Morning Three-Line Movie Review and More On Being

I woke up this morning to two emails from two different friends, congratulating me on being highlighted in the weekly newsletter of On Being. That beautiful website posted my writing last week, seemingly out of the blue, and I am both overwhelmed and terribly honored to have been highlighted, too!

On another note, I had planned on doing a Saturday Three-Line Movie Review but will need far more lines to explain what happened to me the other night. Here goes.

I drove Oliver and his friend to the Dodgers game on Thursday night with a plan to drop them off and then go see the documentary Iris. We got a late start, though, and spent nearly an hour in the car trying to get there, so I couldn't make the movie after I'd dropped them off. I decided to drive to the nearest movie theater and just take my chances on whatever was showing at an appropriate time which happened to be Tomorrowland. Despite it being only PG which indicated perhaps more light fare than I was in the mood, and the fact that it was a Disney flick and I'm not a Disney person, it starred George Clooney whom I adore, so I bought a ticket. I also bought a chicken apple sausage with spicy mustard, a small popcorn (not buttered) and an iced-tea. Between the ticket and the food, I was out $32, but there's really nothing I like more than being at a movie, so I went in and began watching. Did I mention that because I've bought so many tickets at this particular movie theater, I received a free small container of those little ice-cream nuggets, too?

Reader, I ate the hot dog, the popcorn and the ice-cream nuggets in the first twenty minutes of the movie and then decided it was excruciatingly boring. I don't like science fiction or kid movies, to tell you the truth, which makes me not such a good person (so much for the On Being recognition!). I stood up and made my way out of the theater, glanced right and left to see whether there were any employees lurking about and then darted into the movie across the hallway, Entourage. I am not a person who ever did "bad" things, like sneaking into R movies when I was under-age or shoplifting or the like. I won't claim any kind of moral authority because the reason why I was always so "good" was because I didn't want to get caught. On top of that, I never did drugs or drank excessively -- not because I was morally above it all -- but rather because I was certain I'd be the person who died. I didn't have sex with my boyfriend in high school but not because I was saving myself for a husband or because I believed premarital sex was wrong. I didn't do it because I was too afraid of getting pregnant. My plan if such a thing happened (even though I wasn't having sex!) was to kill myself. I'm serious when I tell you that the only times I've gotten in trouble were when I was in a sky bucket with some other eighth graders at Six Flags Over Georgia, and one kid threw a cup of soda over and it landed on someone down below. Six Flags security met us at the end of the line and threw us out of the park. I was mortified. The other time was when I drove in a car with a bunch of kids up to North Carolina for what was known as The Ecology Club Ski Trip, and one boy went into a 7-11 and bought a trunkload of Coors beer (which at the time was only available in North Carolina and all the rage to folks in Georgia). Our car was promptly pulled over, and we were all taken to a small sheriff's station and questioned. I was beside myself and not just because the sheriff who questioned me was a sort of squeal like a pig Deliverance redneck who was eating a Spam sandwich and said to me, How'd you like a bite of my Spam sandwich, brown eyes? I was beside myself because I thought they'd tell my parents.

Anyhoo. Where was I?

So, I've slipped in the movie Entourage, found a seat and start watching. About five minutes in, I realize that this movie is dreadful, even more dreadful than the series and that I must leave. I get up and walk out and into another movie. The movie is Mad Max which I had no intention of watching given the violence, but because there's been so much hoopla around it and claims that it's brutal but feminist and beautiful to boot, I thought I'd give it a try.

It was 3-D.

Have I ever told you how much I hate 3-D movies? Getting glasses involved me going to the usher and claiming that I'd forgotten to pick up the glasses which involved lying about the ticket. I did it, though, and crawled back to my seat and began watching. I lasted about five minutes, though, before I realized that my glasses were broken. I think I realized this at the same time as about twenty other people who all began making their way down the stairs to the usher. We all stood in a clump while the usher walkie-talkied her co-workers, requesting new glasses. People were very upset because the movie was still going on, and we were missing it. I kept silent because -- well -- it seemed presumptuous of me to complain, right? Minutes ticked by and still no glasses, so the usher told us we could get a refund. I slipped out and went downstairs to get my refund. The lady asked me for proof of ticket purchase. Oh dear Lord, you're thinking. See? I was going to get caught. 

Instead I lied some more. I told her that I'd left my ticket in the theater and couldn't possibly crawl down the aisle and find it, especially given that my 3-D glasses were broken and had already twenty minutes of that fabulous movie! I was righteous! Without proof (I must have been sweating or had the tell-tale sign of criminality), the lady gave me a ticket to use at a future date rather than cash. I made a beeline out of the theater, paid $8.00 for parking because I couldn't possibly go back inside and get my ticket validated and then drove aimlessly around the shitty for about an hour before finally going home.

I had driven in Los Angeles rush hour traffic to Dodger Stadium and back, watched fifteen minutes of three different movies, eaten really bad food, compromised my morality and was out $40.

Reader, I suppose I could have written a Three Line Three Movie Review, but this was more fun wasn't it?

One Telephone Call: A Plea for Help

So, I had the great pleasure last night of texting and private-messaging with my friend Paige Figi, the mother of Charlotte (Charlotte's Web fame) and agreed to help push on Senator Diane Feinstein to co-sponsor Senate Bill 1333, The Therapeutic Hemp Medical Access Act.

I am crazy, I know, to do anything else, but honestly how hard could it be, especially when I have all of you out there to help me. 

Here's what I want you to do.

1. Call Senator Feinstein's D.C. office when you have a moment today and ask her to co-sponsor the Therapeutic Hemp Medical Access Act or S. 1333. 
2. Here's the phone number: (202) 224-3841 Tell the person who answers that this bill will provide access to thousands of families who cannot get this life-saving treatment for their children. The bill will deschedule cannabis-rich products/hemp from Schedule 1. It's a tiny step forward and a HUGE one for our community. Senator Feinstein WANTS TO HEAR FROM HER CONSTITUENTS, SO PLEASE CALIFORNIANS, STEP UP!
3. Don't forget to ask Senator Feinstein to CO-SPONSOR S.1333.

If you need more information or would like to help get co-sponsors in your state, here's the website for Coalition for Access Now. 

The TLFWTSCEVATPITM* and Women's Suffrage

Alice Paul and the National Women's Party August 18, 1920

Congress passed the Nineteenth Amendment to the United States Constitution on June 4, 1919, guaranteeing all women the right to vote. My proposal for today is that instead of spending one split second of time talking or even thinking about the *Too-large Family with the Strident Christian Evangelical Views and Tortured Pedophiles in Their Midst or even wondering why the TLFWTSCEVATPITM is and has been interesting at all in these United States, we reflect upon the enormous legacy a generation or two of extremely bad-ass women bestowed on us. As my friend, the writer Lidia Yuknavitch said today,

hey you mammals that think your rights just appeared from the old man wizard in the sky or thin air: wake up and read history. you're standing on some bones that mattered.

Check these women out:

Lucretia Mott

Elizabeth Cady Stanton

Susan B. Anthony

Carrie Chapman Chatt

Lucy Burns

Dora Lewis

Alice Paul

Pauline Adams

Helena Hill Weed

Julia Ward Howe

Anticipate this:

Penultimate Day in Special Ed

Today was Sophie's second to last day of twelfth grade for the third year in a row. Oliver and I brought party sandwiches and chips to celebrate.  I imagine those of you who don't have children with differences might get a little nervous around a bunch of adults that are not the yoozsh. They talk in different tones, if they talk at all. They might screech hello! twenty times in a row when they see you. They might bump into things around you, including you. They ask the same questions over and over. Sara pulled out her cell phone and showed me a picture of Sophie and herself from about ten years ago.I'm not kidding you. Sara has Down Sydrome and the biggest smile you've ever seen. She also showed me a photo of one of her fourteen nieces and nephews. Sara is Orthodox and has a lot of brothers and sisters. I told her to say hello to her mother whom I haven't seen in years, and Sara beamed at me.

I don't visit Sophie's class that much anymore. I trust that the life she has there is a good one and that she is well taken care of by her spectacular aide and wonderful teacher. Many of the classmates have been in school together since they were five years old. Many of them know Oliver and look forward to seeing him a few times a year.

I'm biased, of course, but Oliver rocks.

The kids in Sophie's class are not scary. They are not to be pitied, nor are they placecards for your gratitude. None of that there but for the grace of God go I bullshit. It's not hard to reach out and recognize them as fully formed human beings with the exact same rights to live on the planet as you. Try it.

Otherwise, I might have to feel sorry for you and think, there but for the grace of God go I.

Man Feet

Edgar occasionally walked around the corner and let the Vietnamese women pummel and scrape his feet with their small hands. He was vain about his feet, admired their boniness, the slender toes. He thought of his uncle, the one who'd died over there, a mysterious embarrassment to the wife and children he'd left behind.  Today Edgar even asked for an additional woman. She took his hands in hers, lathered his arms with some seedy soap, his dark hairs a jungle of scrub.

Girding My Loins

Edwardian woman boxer found on the internets

I've got to gird my loins and get to The Latest Insurance Snafu. You might remember that Sophie had some routine bloodwork done a few months ago, not for the hell of it but per doctor's orders, and the insurance company only paid an infinitesimal amount despite it being an in-network provider. When I inquired, The Poor Person Who Has to Work the Phone at an Insurance Company did her clicking around and told me that the labwork was covered but venipuncture is not covered. I already wrote about this, I believe, so I won't belabor the point. I put it aside because, if you remember another post I wrote, my coping mechanism is to Do Only One Thing At A Time. Mulling or mewling or moping (not musing) about why poking Sophie's vein with a needle is not covered, although the actual blood analysis is covered was just too much that day for my tiny little mother mind,™ not to mention actually addressing the problem full-on which means calling the provider, telling her to correct the wrong diagnosis code or ask for a more specific diagnosis, use the numbers V72.6 instead of 82036, etc. etc. etc.  It's time to gird my loins and do it.

I've got some figurative or mental loin-girding going on as well these days as the end of the year at Sophie's public school wraps up. This is the third year that Sophie is considered a senior, I think, or someone has neglected to remove her from the school's graduating class rolls, so I'm subject to a daily and sometimes thrice-daily robo call letting me in on all the fun goings-on for graduates. To be fair, because of the public education laws, Sophie is allowed to stay in school until she's 22 years old, and my gratitude is nothing short of  all holds barred. What comes next will call for more than just the girding of the loins, but that's a story for -- well -- another day. In these parts, we take living in the present to the extreme.

Anyhoo.

Last night, the phone rang, and Oliver picked it up and put it directly on speaker so we could laugh ruefully about the message. This one gave a stern warning that all seniors were to clean out their lockers by no later than 10:00 this morning and that fun festivities were in order later in the day to honor the outgoing class. So far, Sophie should have picked up her cap and gown, cleaned out her locker, gathered with her classmates for a celebration and even checked out the ROTC recruiters in the parking lot with all their cheerful guidance toward a life of bravery, courage and sacrifice. Tonight, I told Oliver to please hang up the phone I don't want to hear it anymore. Oliver asked me whether it made me sad, and I said, yes sometimes it makes me really sad. We both agreed that it's weird to think of Sophie being almost the same age I was when I graduated from college this exact time of year.

Who knew that space cadet grad with thoughts of medieval French literature, modern poetry and a summer ahead of perhaps teaching English to Chinese students in Taiwan or staying with the love of her life in Chapel Hill was going to have to gird her proverbial loins to just make and listen to telephone calls in about thirty years?

On On Being

I woke up yesterday morning to a long, kind email from a stranger who claimed to have read my writing on Krista Tippett's On Being website. I didn't know what she was talking about. Then I got a notice that someone had tweeted something I said, or should I say I got a tweet? I have a twitter account (is that how you say it?), but I have used it maybe four times. I have no idea what I'm doing reading or writing tweets. Or twittering. And then someone liked -- or is it favorited? -- that tweet. Or is it twitter? Oh, twat! In any case, I eventually made my way to the On Being site and saw that a post I wrote years ago was their featured blog post for the day and that they'd also posted many photos from my blog and the Extreme Parenting Video Project. My name was right on there, as was my picture and a little bio. A link to the ebook was there, too.

I'll make a long story short. I had no idea why all of this was published. I never received any word from the site that they were publishing my work, and here's the clincher: I have no memory of submitting anything to them. I wrote the editor and explained that while I was thrilled and honored to be featured, it felt weird to have not been contacted beforehand.

The internets are strange and wild, indeed.

The editor got back to me with an apology for their oversight in not contacting me. Evidently, I had submitted the piece, but I'm not sure when. Have I gone mad? Again, I have no recollection of doing so, and the piece was written in 2012, well before we embarked on the cannabis odyssey.

 The On Being website and recorded interviews are some of my favorite things generated online, and I have often felt that Krista Tippet might have the best job in the universe. So, wow. I'm honored and grateful to be included on the site.

You can read it here.

Feel free to tweet and twat and twank about it, too.

Gobsmacked

The ritual of placing the bottle of cannabis in a cup of warm water, Frida's eyes, the coconut oil relinquishing into the drawing up, just so, that tiny bit, 1.2 milliliters per syringe, not a murder (crows), a grist (bees), nor a rookery (albatross) or a bloat (rhinoceroses) but a group of them, nestled in a blue fertile cup, the Lone Ranger keeping guard.

I am gobsmacked by this liquid gold.

Some Television Worth Watching

Paige Figi, the mother of Charlotte, the little girl who inspired Charlotte's Web, sent us this link today. The Dateline episode referenced evidently has already gotten some good reviews. I hope you'll watch it or tape it or let everyone you know do so.

It's so hard to believe how this movement has grown in the past 18 months. It's wild, really, and breath-taking to be on the frontlines of a veritable revolution, to have left many of the Powers That Be truly in the dust.

But there's still more to do, and part of the doing involves educating. Help us.

Here's the link.

Leaving

It's a spectacularly beautiful late afternoon in southern California. The wind chimes are dinging, the Mariachi McMansion music has stopped, the breeze is rustling through the palms and I'm lying on my bed with the sun slanting through. I'm reading Rachel Cusk's novel Outline. It's a novel for a day like this, a time like this, a person like me. It was Henry's last day of his sophomore year in high school. He took his last exam, appeared at home for a couple of hours and then left for his girlfriend's house. Perhaps I'm histrionic. His leaving -- for his girlfriend's house -- has made me think of all the leaving to come. I'm not sure how it happens, the cliche of time passing. The first day of summer marks an endless stretch of time when you're young. Henry lets the front porch gate slam shut when he leaves, and the wind chimes pause and rearrange their drift,  a current weaves down the hallway and collides with the air from the open back door and slams the bedroom door shut, the bang and my breath and my heart's beat and then just quiet.

Dang.

The Good Neurologist: A Story of Gratitude

Sophie understands it and thinks it sucks.

The Good Neurologist is happy to see Sophie bright and attentive and walking on her own into her office instead of slumped in her wheelchair. The Good Neurologist acknowledges how wonderful her patient looks.

The Good Neurologist apologizes for Sophie's traumatic EEG from a couple of months ago and realizes that it wasn't a great example of Sophie's improved clinical presentation. She is happy to report, though, that there is no ESES on the EEG. ESES is short for electrical status epilepticus in slow-wave sleep, and Sophie has had two bouts of it in her life, both devastating and too traumatic to recount here. The Good Neurologist is also understanding of the mother's aversion to learning what was on that EEG and decides that we don't need to do any more for a really long time.

The Good Neurologist takes notes while the mother talks, and she asks questions about how Sophie's CBD is dosed. She is appropriately excited by the mother's report of relative seizure freedom since going back on the original California Charlotte's Web.

The Good Neurologist is genuinely interested in hearing the mother discuss what types of cannabis Sophie has tried, how well they've worked or not. She takes notes.

The Good Neurologist listens avidly and carefully as the mother tells her about the disastrous epilepsy conference where the mother was insulted by The Good Neurologist's colleagues. She doesn't flinch when the mother names the offending parties and says, I was enraged by it for a while, but my overall feeling now is that I don't give a damn what the neurology world thinks.

The Good Neurologist is able to do a sort of mind meld with the mother so that the mother understands that The Good Neurologist is very excited about this new treatment for Sophie, even though The Good Neurologist is unable to jump up and down and scream into the hallways because some of her colleagues are assholes and might not approve.

The Good Neurologist has big brown eyes that widen when the mother reports how much of the hated benzodiazepine has been weaned from Sophie. She is very, very impressed. She acknowledges this achievement. She provides encouragement to keep going.

The Good Neurologist speaks to Sophie and is warm and engaging. The mother and Sophie leave the office of the Good Neurologist and drive through afternoon traffic without crying or seizing, respectively.

The End.