The Times They are A Changing

Well, I climbed up on a stage in the Universal Hilton ballroom and spoke to a crowd of a few hundred at the Realm of Caring Foundation benefit tonight, and it was fine. I was pretty charged up, my pulse raced and my knees shook behind the podium, but I looked right down into the faces of the great and almighty neurology department of UCLA and spoke my truth. And it felt fine. I was so grateful that those women and men would even come and listen, to tell you the truth. It was such a contrast from the folks up at the Epilepsy Pipeline Conference who I'm now convinced couldn't stand the likes of me. Tant pis pour elles, as the French idiomatic expression goes. I also met some wonderful people with whom I've corresponded on Facebook, saw my new best pal, Cindy, met her son and his seizure dog and sat with one of my best friends in the whole world who bought a ticket and came out to support us. I love you, Shannon! Thank you to the kind and dedicated people at the Epilepsy Foundation of Greater Los Angeles who sponsored my seat at their table, too.

An amazing vocalist named Chris Pierce performed -- I'd never heard of him, but wow. Here's a video of him singing as an opener for B.B. King. He sang the same song tonight while photos of the beautiful children of cannabis played behind him. Oh, and I got to talk again with Joel Stanley -- I know some of you are wildly jealous, and you should be.

The times they are a-changin'.





Speaking of times, I took that photo above around the corner from my house. It's advertising the California Dreams/Laurel Canyon exhibit at the Grammy Museum downtown, and that's an old photo of Joni Mitchell on the left. I'm perhaps too excited about this exhibit and wish that ya'll who like this sort of thing would consider flying out to Los Angeles and going with me.

Here's a fun thing to watch that might entice you:

Sophie and Realm of Caring, Shebooks and Me

Hellooooooo, Sophie-Girl!

Sophie and I just walked up to a copy shop to get copies made of the flyer I'll be handing out tonight when I speak briefly, again, at the Realm of Caring benefit. Tonight's event will be packed with more than 400 people, many of whom will be neurology officials. There will also be families and many people who are anxiously waiting to get Charlotte's Web. My words will be brief and hopefully inspirational. It's imperative that Realm of Caring gets more financial support so that it can provide this life-saving medicine to more children and adults with epilepsy and other diseases. If you haven't yet, please consider donating to Realm of Caring at this link. Click on DONATE and then scroll down to the California chapter (the one with the beach, of course!) You know I love you, don't you?

The flyer advertises the publication of my e-book this Wednesday, June 11th by Shebooks. It's a short memoir, an excerpt from a larger book that I hope will one day be completed and published, too.  I'll give you the links and all that jazz on Wednesday -- in the meantime, if you want to read a bit about it, you can hop on over to dear Angella at 37 Paddington. 

You can also check out Shebooks' website. Here's what they say about themselves:

Shebooks was co-founded by three women with long careers in publishing. We were excited by the explosion of digital media, which was giving readers new ways to find compelling stories. And we were pleased to see writers find fresh ways to work and make money outside the usual channels. 

The problem was that female authors, journalists, editors – and ultimately female readers – were being shut out of the revolution. Innovative digital publishing companies led by men and publishing mostly male writers were getting lots of investment and attention. (Our “aha!” moment came at a journalism conference in 2012: all guys onstage announcing their new companies to an audience that was nearly all women.) But we knew that women are voracious readers in every format – buying the majority of books and magazines and reading (and writing) the majority of blogs. 

As veterans of women’s publishing, we understood the realities of women’s lives – that while we love to read, we don’t always have time for a full-length book. We also knew that paid opportunities for female writers were shrinking—and that the content of the so-called thought leader magazines still carries 70 percent male bylines. 

So we decided not to wait for our invitation to the party. Shebooks was the result: a new media format, real money for writers (our writers all share in our profits), and engaging stories that women can’t wait to read, that fit the corners of their busy lives.
We are grateful for the support of the New Media Women’s Entrepreneurial Fund at the Journalism Lab at American University, as well as that of friends, family, and angel investors – and now you, our readers!

Cool stuff, right?

The Link to the Epilepsy Pipeline Conference

and aren't you getting a bit tired of all of this because I sure am. There was some difficulty getting the Family Day (Day 3) of the live streaming to work even when it was archived, but I'm pretty sure you can forward through the weird proprietary message on the opening screen to the presentations. If you really want to watch, though, I appear around 3:20. There's 8 hours there of information, and if you watch the whole three days of material -- about 24 hours worth, you might catch my high wire act in tutu. Just kidding.



Here's the link if you can't view the above.

San Francisco

That's the view from my big white bed where I'm sitting, tapping this out on my phone. If I got up and walked out there, I'd see this:

Yesterday was pretty great and not a little overwhelming. My presentation went well -- I started with notes but quickly went off-notes, if that's an expression, and during the panel part responded a bit testily to some questions.  It felt exhilarating and exhausting telling Sophie's story to this group of people. Thank you for watching the livestream.  Thank you for your emails -- from all over the world. I hear all of you, and they meant so much.

Here's a photo of one of my beautiful new friends, Cindy, and the equally beautiful Joel Stanley -- one of those Stanley brothers who pioneered Charlotte's Web.

My favorite comment after my presentation was from some guy who approached me and said, You were like a bomb that was dropped into the room! 


If you can't be a bombshell, be a bomb.

Last night my dear friend Sally of Maggie World picked me up and drove me around the city. We had dinner in a tiny old Italian restaurant in North Beach. I had red sangria, and we shared an amaxing appetizer of burrata cheese and tiny fresh tomatoes with olive oil and pesto. Oh, my god, was it good. Then I had sardines and spaghetti -- I ate every single bit, including the bones. We sat upstairs in a bright red room with a ceiling so low you had to duck your head. We were seated at a communal table, right by the window. It was charming.

Now I need to get out of bed and on with the day!

So, that's the view from my balcony. I'm on the 17th floor of one of those atrium style hotels, but the view!

And the bed!

Here's me, lying on the bed.

It's going to be difficult to do that high wire act this morning from such a position. I really wish they could bring the show to my room.

If you want a ticket,  go to www.epilepsy.com and check out the live stream. My portion is at 10:40 AM Pacific Coast Time. Say a prayer that I don't fall off the wire, and that if I do, I either sprout wings and fly or grab one of those strands of light in the lobby, elude The Powers and shimmy up to my white sheets and sailboated horizon.

The Epilepsy Pipeline Conference High Wire Act

Almost every morning I sit in a chair in The Dining Room That Is Not a Dining Room But a Receptacle for Stuff and look out the window that faces the side of the house. The light comes in just so, a stray bougainvillea has artfully arranged itself over the gate and alongside the fence, and despite the junk that lies there, clearly visible, I am at peace sitting, sipping my coffee.

That's all I've got this morning as I ready myself for the trip to San Francisco. As I mentioned a few times, I will be participating as a speaker and panel member on Saturday, discussing medical marijuana and our story. If you're so inclined, you can watch the whole conference at epilepsy.com -- they will be live-streaming it. I am scheduled to appear at around 11:15 or so, I think. While I wish that it were me doing a high wire act instead of droning on about the past frustrating and filled-with-despair nineteen years of anti-epileptic drugs, I will try to do justice to the incredible turn-around we've experienced as Sophie responds to cannabis. I will do this so that others might have the courage to try it on their own children, so that the Powers That Be might wake up and get busy making cannabis more accessible to the Desperate and Perhaps Not Desperate Yet, But Soon Will Be Desperate as they navigate drugs and systems of care and insurance and family strife and exhausted marriages and anxious siblings and side effects, destruction and even, death.

Perhaps it is a sort of high wire act after all.

Art Talk and Walk

On May 23rd, I posted an Ellen Bass poem with a copy of one of my favorite Matisse paintings, Open Window at Collioure. Today I actually saw the painting! I stood right in front of it, the window and the ocean and the boats and the green and the sky. The pinks and the blues made me tear up a bit. Here it is, straight on.

I went with Henry to check out the brand new Van Gogh to Kandinsky show at LACMA -- one of those blockbuster big-city art shows that's only bearable if you go on a Member's Preview day. This is a Gauguin:

I was struck, as always, by the excessive flesh of the women of the time, by how lovingly and reverently they were painted. No sinew or muscle or abs of steel. Dang. I was born in the wrong century.

It was a wonderful show -- not too many people and not too many paintings, all of them hung on walls painted the most beautiful shade of dark blue. Here's a wonderful Picasso sketch:

I rounded a corner and caught, from the corner of my eye, Van Gogh's Wheat Field with Reaper and Sun. That definitely brought tears to my eyes. I didn't take a photo -- but I did walk back and look at it for a second time, along with the Matisse. I don't know very much -- o.k., anything, really -- about art, but certain paintings move me to distraction, and this is one of them.  Here's a copy from the internets:

The yellows, the green, the sun, the man's sickle and green clothes, that strip of blue mountain -- magnificent.

It's been a stressful, hairy two days and I was upset with myself for having reserved my two tickets (free with membership) for this afternoon, but I'm so glad that I went. Strolling around these paintings, listening to the murmurs of appreciative visitors and basking in color and vision -- it was just the thing to dispel some of that hair.

Musings on the supposedly "revolutionary" Pope Francis

In lieu of anything else, let's talk about the Pope and his recent admonition to couples that they should "raise children and not pets." 

Better yet, let's not, unless you're a devout Catholic who can come up with some sort of explanation for that bullshit.

Bless his heart.

Would that he spoke about the legacy of the Catholic Church in Ireland, where the bones of more than 796 children were found buried in a septic tank, discarded there by the nuns and workers of a former orphanage and home for unwed mothers.

Let's talk about the legacy of sexual shaming and the oppression of women that continues to this day in the doctrine of the Catholic Church.

Again, if you're reading this as a devout Catholic, please enlighten us on what to think.

The above photo, found on the internets, was accompanied by a weird article about an experiment done on a group of the faithful. Those Catholics who "believed" felt no pain when subjected to electric shocks as long as they were gazing at Mary. I couldn't help but wonder if they don't feel the pain, either, of those women and girls forced to give up their babies because they were not married -- or those children, who were often shamed and subject to abuse because they were deemed bastards, abused, malnourished and then, when dead, thrown into an open grave like so much trash.

It's been a while since I've done this on the old blog, but writing here makes my blood boil a little less.

The Epilepsy Pipeline Conference Live Stream Link

If you'd like to see any of the goings-on at this weekend's Epilepsy Pipeline Conference, you can click on this link and do so.

I will be participating on the medical marijuana panel on Saturday morning. The time on the schedule is 10:40 am Pacific Coast time. While I don't anticipate any gladiatoring, I am a tad nervous as it's a sold-out crowd and we all know that the Powers That Be are not all as supportive of these new developments as we wish they'd be. I keep repeating to myself that I only have to tell my story, tell Sophie's story, our Truth, the Truth, and it will be powerful enough.

Good thing I'm a pacifist and believe in civil disobedience.

Yikes.

This weekend can't come fast enough

I'm leaving for the Epilepsy Pipeline Conference in San Francisco on Friday morning. I'll be staying in a hotel room alone (unless you care to join me) for two nights and participating as a parent expert on a medical marijuana panel on a sold-out Saturday. Expect a conflagration.

Given that I'm leaving a conflagration at home (it's summer, I have two teen aged boys, I'm burnt to a crisp, etcetera etcetera), it's a bit like jumping out of the frying pan and into the fire. I think the conference will be streamed live, so stay tuned for more information.

Help me Rhonda.

The Things I Carry

In a small zippered leather purse that looks like the old-time New York City coffee cups, I carry the following items everywhere I go:

1. a cut-out photo of Sophie when she was recently diagnosed with infantile spasms and puffed up due to steroids
2. a silk and silver pacifier clip that someone gave me when Sophie was born and is emblematic of that brief time before when sucking on a pacifier was enough to calm her crying
3. a New York City subway token -- because I loved living there for the almost nine years I did so
4. a dirtied, softened piece of paper with a note from my father that accompanied a check he sent to me for a treatment we wanted to try when Sophie was a baby. This is going to work, it said.
5. Several angel charms
6. A LOVE charm
7. A Flow charm
8. A MIRACLE stone
9. A bug encased in a marble that I forgot to give one of my boys and decided to keep myself

Reader, what things do you carry?

Big Pink-Goggled White Woman

I joined the new YMCA in Koreatown and went swimming today for the first time in years and years and years. Swimming is, apparently, just like riding a bicycle because when I slipped into the water and took off free-styling, I felt weightless and smooth and each breath each stroke was the millionth one I'd taken and made, effortless. When I climbed out, I was as limp and weak as a cooked noodle, the mostly elderly and impassive Korean men and women nodding pleasantly at me as I made my shaky way back to the locker room. It will be good to be anonymous at the Koreatown YMCA, a big pink-goggled white woman noodle in an Asian sea. It's what I love best about living in an urban area -- that unique ability to be surrounded by humanity and still feel utterly alone.

More Notes

Helicopters are circling and the night breeze is gentle on my bare shoulders. There might have been an earthquake an hour ago. I do love Los Angeles.

It would be nice if I could lie down on the floor, kick and scream, like a two-year-old, if I could spit it's not fair like a seven-year-old, if I could sneer my life sucks like a fifteen-year-old, or moan pray that I die like an eighty-five-year-old. Instead it's all breathe in, breathe out, rueful smiles, looking for angels in trees, being mindful of the goosebumps on my skin, reaching for ghosts.

Notes

I washed windows today while Bob Dylan sang to me, his rough voice, my edgy swipes. I talked to a muse today, his rough voice, my wince. I sprinkled powder on Sophie's clammy hands today, clipped her nails, faced the care squarely even in the moment of loathing. I curled myself around her, shut my eyes when she did, breathed her in, would we could do it all again, I breathed, the fetal curl, back inside me, different this time, please, let it be different this time.